. . My Own Story -- The Long Journey Back to Normal
I was diagnosed with DCIS breast cancer at 49, during a routine mammogram. After a large lumpectomy, we found that the area was bigger than previously thought, and the pathology report showed that my cancer was the nastiest kind -- '9' on the Bloom-Richardson scale of 1-9-- the highest possible rank for aggressiveness and likelihood of recurrence. Lucky me. So, although DCIS is usually treated with a simple lumpectomy followed by radiation, it was recommended that I have a mastectomy to keep the chance of recurrence low. So in December 2008, I had a left mastectomy and reconstruction. Some say that this procedure is one of the most grueling and painful to go through, and I would have to agree--this was by far the the hardest thing I've been through. But I am so grateful that we live in a day when we don't have to die of breast cancer if it's caught early.
I'm fortunate to have a quizzical mind, and through it all, I stayed very near the web. I love having information of all kinds just a keyboard away. I spent about two months searching the web for information -- the best doctors, the latest techniques, the latest breast cancer advances, as much as I could find -- it was painstaking work ferreting out all this information, which was all over the place. As I went, I bookmarked anything that looked interesting. I realized lately that having this information all in one place could be a tremendous help to others, so I am compiling it here for you! I also plan to continue to seek out the latest, and pass it along when I have it. It is likely that you're here because you or a loved one are also battling breast cancer. If so, know that you have a comrade-in arms. Over time there will be a lot of information gathered here, so please take a look at the archives, as well, and poke into all the corners.
See the archive below to navigate through the posts.
Welcome, and I hope you will find some answers here.
Friday, March 22
Before I tell you about this discovery, I would like to give you a brief overview of my ongoing health, not to bleed all over you, but so you can understand that my health has been no small matter for me, and that this discovery is significant, and one that you might want to take some time to investigate yourself.
Among my health problems over the years have been polycystic ovary syndrome and all its many accompanying symptoms (discussed elsewhere in this blog), fibrocystic breast disease, devastating chronic fatigue and other hypothyroid-like symptoms, (despite normal bloodwork, for the most part) irritable bowel syndrome, mitral valve prolapse and the resulting heart arrhythmias, and chronic upper respiratory infections, generally leading to secondary infections, including at least six bouts with pneumonia and many cases of bronchitis and sinusitis, illnesses sometimes occupying up to four months out of any given year. And needless to say, breast cancer was the heavy hitter of all the characters in my health scenario. I could go on, but you get the idea. I have spent many, many years dealing with health problems, including several surgeries and stays in the hospital -- my medical chart is about 5 inches thick. I'm sure it's not hard to imagine that I have hoped for some answers.
So now to the discovery. It's very simple, really, and inexpensive. In fact you may have some of this stuff sitting in your medicine cabinet right now. It is . . . .
Hard to believe, right? But here are some important facts:
1. Iodine is the major building block of thyroid hormone. If there is a deficiency, then hypothyroid-like symptoms may appear, even if the thyroid gland is perfectly healthy. It just lacks the ingredients it needs to make hormones.
2. The current RDA for iodine (150mcg) was intended to prevent goiter and cretinism. An optimal daily requirement has not been intensively studied or established. Proponents believe it should be much higher.
3. Iodized salt is the only significant source of iodine for Americans who do not eat seafood on a regular basis, which with the mercury issue and increasing costs of seafood, is more common. For those also cutting back on salt, an iodine deficiency becomes more likely. Therefore, it is likely that most people in the U.S. are iodine deficient to some degree.
4. It is well-established that iodine deficiency is related to fibrocystic breast disease. Emerging science also strongly suggests that breast cancer for some women is caused, at least in part, by iodine deficiency. This is bolstered by the fact that Japanese women, who consume up to 13 mg per day of iodine in their diet, are much less likely than American women to develop breast cancer, and are, in fact, among the healthiest people in the world. (Keep in mind that 13 mg is nearly 100 times the U.S. RDA.) In any event, taking iodine regularly can certainly help protect you from breast cancer, and other female cancers, even if you are otherwise healthy.
5. Iodine resides in every cell of the body, proponents say in amounts up to 1,500 mg, with only about 3% of that held in the thyroid gland. In women, the breasts, ovaries, lungs, and uterus are also repositories for larger concentrations of iodine, and the bones and muscles to a lesser extent.
6. Until the advent of synthetic thyroid hormone therapy in the 1960s, doctors routinely used iodine to treat many thyroid problems. And, without blood tests to guide them, they simply treated until the patient felt well. Gee. What a concept.
7. It's hard to 'overdose' with iodine, because the body excretes any excess. I have experimented with dose for the last year, and I ended up around 25 mg daily as being the dose that gives me consistently good, productive days.
8. Women are more prone to develop health problems from a lack of iodine. You will see below that most of the health problems mentioned affect women the most.
Below is a list of possible symptoms. Although this is a breast cancer blog, I am including discussions of other health problems, because so many of us suffer from them.
PCOS There is pretty solid evidence that iodine deficiency is at the bottom of this condition for some women, OR that it causes symptoms that are mistaken for PCOS. The lack of ovulation, and therefore a lack of progesterone, in the typical PCOS woman sets her up for estrogen dominance, which can lead to cancers of several kinds, including breast cancer. This was likely the case for my cancer, according to my oncologist in NYC.
Hypothyroid-like symptoms: fatigue, depression, anxiety, weight gain, loss of libido, and memory issues. No doubt that iodine deficiency can be the cause of this, rather than overt thyroid disease.
Breast complaints, including fibrocystic breast disease and increased soreness in the breast around the time of menstruation. Iodine's ability to correct these problems is well-documented.
Chronic fatigue issues, including fibromyalgia. Many doctors who are iodine proponents note that these diagnoses only came on the scene after routine iodine treatment for thyroid issues was abandoned in favor of synthetic hormone replacement, and after thyroid testing became the last word in treatment. Now doctors only treat patients for thyroid disease if they have obvious blood work problems, and they treat the patient until their blood test results are 'in normal range' rather than until the patient feels well, as was done before the advent of testing. For many who do not have thyroid disease, but rather a shortage of iodine, they may, in fact, experience chronic fatigue and other symptoms that may not be reflected in the blood work. Many of these poor souls are shunted off into the chronic fatigue category with no effective treatment, because they don't fall into the 'thyroid' category for treatment. Some doctors report excellent results with their chronic fatigue and fibromyalgia patients, using iodine. If you have a chronic fatigue issue and you've tried everything, it certainly can't hurt to try iodine!
Irritable Bowel Syndrome This is not generally found on iodine deficiency symptom lists, but I'm listing it here because three weeks into taking iodine, my 30-year case of IBS simply disappeared. I mean disappeared. I wasn't expecting that, and to be released from so many years of pain and discomfort is an added bonus.
High blood pressure
Impaired immunity to common viruses, and some lung diseases. Iodine can be a valuable tool in the treatment of COPD, in particular, because it induces apoptosis, or programmed cell death. This means that it discourages colonization of viruses and bacteria in the lung tissue (which is one property that makes it effective in the treatment of related cancers as well). It will also loosen and thin mucous secretions.
Slowed mental function, especially in children, and possibly ADD
Links to iodine deficiency and autism are being explored, as well as a relationship to migraine headaches
Looking at these symptoms, you can probably see why I found an iodine link to all my medical complaints worth exploring. And now I can say that since I have been supplementing with iodine, I have not felt so well in a long time.
Unfortunately, the idea of iodine supplementation has not yet reached the mainstream medical community, so you may be on your own here, unless you have a good naturopath. Mainstream doctors are slow to adopt new ideas and treatments due to liability issues, and many will wait until longer-term results are available, to protect themselves. Understandable, but in the meantime, there are an awful lot of people out there suffering needlessly. After all my negative experiences with doctors, I have just gone ahead and treated myself, but I can't, of course, recommend this for anyone else. If you can find a like-minded doctor, you'll always be better off coordinating iodine supplementation with him. If, on the other hand, you decide to do the research yourself and give this a try, be reassured knowing that it's very difficult to take too much iodine, and there is really no downside to trying it. Will it help alleviate your symptoms, whatever they may be? I can't say, of course, but if you do try it and find good results, let me know!
There is so much more info out there on this subject, so I won't belabor it anymore here. Below are some sites to visit to educate yourself more.
breastcancerchoices.org has more information on this topic, and also has several worthwhile links regarding the relationship between iodine and the breast.
Here is an abstract for a study done on breast cancer, as related to iodine.
There are more out there, just a Google search away.
A long historical perspective on iodine
A primer on supplementing with iodine
The cheapest place to buy iodine pills on the web -- Iodoral is the most recommended, but NuFormulas is also good
Good luck, and I welcome your comments.
Saturday, March 16
For decades, cutting chunks of fat out of other parts of the body and suturing them into place on the chest has been the gold standard of breast reconstruction after mastectomy. This was because attempts to simply inject fat cells into an area failed -- most of the fat cells would just die. In 1987, the American Society of Plastic and Reconstructive Surgeons determined that fat grafting for breast augmentation could make cancer detection more difficult, and several studies around that time reported severe complications with the procedure. So for many years, most doctors did not use fat grafting for any treatment on the breast.
As the years passed, fat grafting in small quantities was used for other applications, but with limited success due to the large percentage of fat cells that would die. A few years ago, Cytori Therapeutics developed a device that could safely extract fat cells without damaging them, and mix them homogenously with the stem cells found naturally in fat, in preparation to inject them into other areas of the body. A high rate of survival of fat cells was achieved with this method, which meant that larger amounts of fat could be grafted successfully. This paved the way for the use of fat grafting in breast augmentation.
Then some studies were done to verify the true danger of using fat grafting as a means of rebuilding the breast after mastectomy, with some success. The results of one of these studies can be found here. The process is longer, taking months, rather than one procedure. Layers of fat are laid down one at a time, starting at the chest wall and building outward over time. But the benefits are obvious -- no long incisions and subsequent scars at the donor site, only a series of small incisions made to facilitate the suctioning of fat. And believe me, this is huge. The abdominal (or other donor site) surgery is the most difficult part of a breast reconstruction, in terms of pain and recovery.
So there is a resurgence of interest in using fat grafting to rebuild the breast, and there is one doctor in Miami offering the procedure. I have not come across any others, but if you find any, please post them in the comments section.
With today's technology, your options are usually either lumpectomy and mastectomy. I had asked my reconstructive surgeon about a quadrantectomy, which is the removal of larger part of the breast than lumpectomy, but less than removing the entire breast. It was a procedure that he did not offer, due to how much it disfigured the breast. I also asked several surgeons that I consulted why they could not just take a smaller flap of fat to fill in the area after a quadrantectomy, but got no satisfactory answer from any of them. I was left presuming that it would be hard to tailor a fat flap to fit an oddly-shaped gap in the breast. So we're left with either having a lumpectomy that is not large enough to disfigure the breast too much, or a mastectomy with a mound-shaped flap of fat or other mound-shaped filler to rebuild the breast.
With fat grafting, another option that will undoubtedly open up for breast cancer patients is the ability to fill in odd gaps after lumpectomy or quadrantectomy. Doctors will be able to remove larger areas of the breast without concern, when they can simply inject fat into those oddly-shaped areas to fill them in. For those having lumpectomy, this could mean the ability to have a larger lumpectomy to achieve larger margins around the cancer. In borderline cases, (like mine was, where a lumpectomy large enough to get rid of the cancer would seriously disfigure the breast, indicating mastectomy instead) a quadrantectomy could be offered instead of mastectomy, possibly conserving enough breast tissue to retain the natural nipple and sensation in the breast. It's all my conjecture at this point, but who knows?
I have been told that, due to my PCOS, I am at greater risk to develop cancer in the other breast. If that happens, I may be able to take advantage of this new technology, and after all I have been through so far, I would certainly give it a try. But let's hope it doesn't come to that.
Wiki info about Cytori
Cytori's information about breast reconstruction using their procedure
About.com article outlining the procedure
Blue Cross analysis of fat grafting to the breast
Article about fat grafting for breast augmentation, but much of the info crosses over to breast reconstruction.
Results have been good, with short-term survival rates roughly similar to whole-breast radiation. The technique will almost certainly become more widely offered, but it's still pretty new here in the U.S., and doctors are slow to get on the bandwagon, due to fear of litigation if long-term results are less favorable. Can't really blame them, but it means that the wheels grind excruciatingly slowly.
I wish I could give you a big list of cancer programs now offering this option, but Sloan Kettering is the only one I've been able to ferret out. They had already started using the technique before my own experience with breast cancer, and it seems they are still one of the few touting this as an option. You can always ask your oncologist -- he may have more information, and in any event, the more they see a demand, the more interest will be generated. And if you have the name of a provider offering this procedure, please add it to the comments section.
Basic Wiki info
General info link
A site that lists many links discussing this procedure
More Sloan-Kettering info
Abstract referencing the original study in Milan
It turns out that before I ever had cancer, I had a fairly large diastatis recti -- a separation between the two sections of the rectus abdomini muscles. This is fairly common, and had occurred during my three pregnancies, with the stretching of all those muscles, most notably with my last child, who weighed in at nearly 10 lbs. at birth. I was enormous, and looked like I was carrying twins.
The original reconstructive surgeon had assured me that he would be repairing any diastasis during the harvesting of fat (along with several other unkept promises he made), but this was apparently not done. The other issue with my belly, a possible side effect of the Diep flap procedure that I had not come across in all my research, is that many nerves that serve the abdominal muscles are cut during the harvesting of fat, even though the muscle, itself, is not touched. In a small percentage of women (my luck holding, naturally) this produces a weakening and prolapsing of the abdominal muscles. So between these two issues, I looked like I was nearly 'full-term'. Wearing normal pants has been impossible. Suspenders would probably have helped, but they are just not fashionable, ya know?
I contemplated returning to my original surgeon (Dr. Allen practice in NYC), and in fact I contacted them, and sent along a picture of my current scenario at their request. After three subsequent unreturned phone calls, I decided to go elsewhere, since I had not been happy with the first procedure anyway. I talked to my insurance company and they suggested Mass General in Boston, a hospital on my plan, and one that I already knew has a good breast cancer/reconstruction program. I looked on their site and chose Dr. Amy Colwell -- I liked her background and the fact that she had written a number of papers. She demonstrated an inquisitive mind, so I thought she might be just what I needed--and she was!
9 days ago, I went under her knife. She repaired the diastasis and put a mesh across my entire belly to bring everything into alignment again. She moved my belly button to center, and rebuilt it using stitches more on the inside of the folds, rather than around the outside of the belly button, which just doesn't look right or natural. She also resected my abdominal scar, making it into a nice 'U' shape about an inch lower than it had been. She removed as much of the patch on my left breast as she could and built me a new nipple using the scar tissue remaining on the breast. This tissue has gradually softened and some of it has reverted to normal nipple skin. So she worked with that skin, rather than using a skin flap, and we both agree that the result will look more natural. In the process, she made the breast a size smaller, in order to remove as much of the patch as she could -- nearly all of it went, with only a small strip left at the bottom of the breast. She performed liposuction on the right breast to make it match the new, smaller left one. She didn't want to do the lipo, as she feels this makes the breast flatter. But I persisted, telling her that I would prefer a slightly flatter breast to having scars on that breast, as well. We checked to see if the insurance would cover this part, which they did, and she did it for me.
Naturally, at this point I'm still in bandages, and have one drain still hanging from the abdominal scar, but I can already tell you that the result will be something I'll be happy with. Not perfect, of course, but I will feel more like myself. I had purposely gained 40 lbs. way back then to have enough belly fat to harvest, and only about 15 lbs. of this has come back off, to my continued annoyance. In the past I have always been able to take weight off relatively easily, and it has just been impossible for me this time. But I think I may have stumbled across the answer -- I am now supplementing iodine, and there is a whole lot of evidence that most of us are iodine deficient in the U.S., which prevents the thyroid from making thyroid hormone, making it difficult to lose weight. i will be writing more on this in my other blog, so check it out there.
I will likely post some before and after pictures, to show just how much can be done to make your final result acceptable after everything has gone wrong. I would like to say again that Dr. Robert Allen is an excellent surgeon and I loved his approach -- sympathetic, creative and friendly. Had I been in his care, I have no doubt that my result would have been better. But with cancer still in my breast, I felt I could not wait several months for him, and instead went to his partner, Dr. Joshua Levine. I was really quite unhappy with the result I got in his care, so I cannot recommend him. I felt that he tried to cram me into his canned method, and that would be the only thing he would do, regardless of what I wanted. He didn't listen to my concerns at all, and I always had the unsettling feeling that he was not giving me the whole story. And, needless to say, the results were unacceptable. I hate to badmouth anyone, but I'm also here to help those who are looking for information.
Sunday, June 20
There are many personal reasons for a woman to choose to just have the breast removed. Many women are older and really don't care whether they have a breast anymore. Perhaps they are widowed or divorced and plan to be alone for the foreseeable future. Others may feel strongly on principle that it shouldn't matter if one has a breast or not, and they want to accept what life has brought them. I respect those decisions, and the thoughts below are not intended for those ladies.
However, I know there are some out there who may be debating about whether to have reconstructive surgery, and they are considering avoiding it because they don't want to face the many difficulties involved, and for no other reason. I have an approach to decision-making that may help those ladies.
Here it is:
I try never to use short-term criteria to make a long-term decision.
The difficulties are there, for sure, and they are many -- no way to sugar-coat that. But all of the pain and suffering you will experience is short-term, and you will come out the other side pretty quickly all-in-all. Now, over a year later, I hardly remember the hard parts. And when it's over you have a breast that behaves pretty normally -- it fits into a bra or swimsuit, it looks natural in clothes, it feels more or less as it did before, although pretty numb, at least for a while. So, I guess I am saying that some short-term discomfort will result in a long-term outcome that you may find easier to live with. I can't promise that you will be entirely happy with the results (I haven't been) but it may be preferable to not having your breast at all. Only you can decide that.
And certainly, if you have a man in your life, consider how he feels. Most supportive husbands and significant others will, of course, say that it is up to you and they will love you no matter what. Nevertheless, they are human, and it may be difficult for them to face a major change to your body, if you choose to go without your breast. It may be impossible to get this brutally honest information out of them, but only the most angelic man would not be affected at all by this. Take their human-ness into account in your decision, and consider how it might impact your romantic life -- whether it be his reaction to the New You, or your self-consciousness about the big change, regardless of how supportive he is to you as you make your decision.
When making your decision, remember that choosing to give up your breast entirely may mean some long-term issues, especially if you are going to want to look as you did before in clothing. Prosthetics are available, but they do have their issues, so you may want to talk to someone who has chosen to use them, and get their input. The medical center where you get your cancer care may be able to help put you in touch with someone. Most have wonderful support departments. Going without prosthetics has its own considerations that must be addressed.
And you should give some thought to how you will feel seeing yourself without a breast for a long time after surgery. Yes, you can always choose to have reconstructive surgery later, although keep in mind that this means another entire surgery, and the skin will have to patched at that time -- only with immediate reconstruction can you generally keep all the skin.
You may sense that I am encouraging you to keep your breast, and I guess I am, if you are not otherwise philosophically opposed to keeping it for any reason. I hope my remarks do not offend anyone. I know there are many, many ways of living life and making these kinds of difficult decisions, and no one can truly walk in the shoes of another.
Saturday, June 19
Indeed, for many of us who face mastectomy, losing the nipple seems to be the most disfiguring part of the surgery. This fact is finally starting to percolate among surgeons who have been taking a harder look at the true risks associated with keeping the nipple. For a long time since breast conservation surgery became standard, it was thought that the nipple area would always be at higher risk for harboring cancer cells, since all the ducts in the breast lead to the nipple. But as surgeons actually began listening to their patients who wanted to keep their nipple, they looked harder at the data to see if this was really true, and it was found that for most women who don't have cancer near the nipple, or Paget's disease, the nipple could often be kept with little risk of cancer recurrence in that area. Some surgeons, in fact, completely hollow out the nipple area, leaving a hollow cone that can be refilled with other tissue.
Many surgeons are learning just how much keeping the nipple improves the quality of life for a woman, and may greatly improve her morale post-op, especially if she ends up facing an ongoing battle with cancer . Sometimes the small things really do matter. I remember sitting in one reconstructive surgeon's office and he said to me, "Mastectomy is such a harsh term. We prefer to say, "Gland Replacement Therapy". I appreciated that statement, because when all of the breast skin, including the nipple, is kept, then it really is just a matter of replacing the mammary tissue and fat in the breast with something else. You still have your breast, although there may be little to no feeling. This is, indeed, a far cry from classic mastectomy, where a woman is left with no breast, and only a scar running across the flattened area. As far as I'm concerned, anything that brings one closer to having the breast they used to (or in some cases an even better breast) is a blessing!
Nipple sparing mastectomy (NSM) is newer, but it is slowly becoming the gold standard for reconstructive care, and will continue to be. More and more practices around the country are offering this option, so seek them out. Below is a short list of those bigger names that offer NSM. There is certainly nothing to lose if your surgeon feels you are a candidate, and the worst that will happen is what happened to me -- the nipple will not do well, and you'll end up having some reconstruction. Personally, I comfort myself, knowing that I tried.
A simple search for any of these names, along with the terms 'nipple sparing' will probably take you where you need to go.
Cleveland Clinic (I believe the procedure was pioneered here)
University Hospitals, Cleveland (I find Cleveland to be a hub for many advanced medical procedures. You lucky Ohioans!)
Robert Allen practice, NYC
Paoli Hospital, Paoli, PA
And here is a wonderful thread on breastcancer.org with many names from all around the country, along with personal recommendations.
Monday, June 7
Saturday, May 8
Once I had decided on having a mastectomy, it was left to me to simply wait. I remember touching my left breast many times during that period, knowing that those would be the last feelings I would have in that area for the rest of my life. It was quite a bit to wrap my brain around -- the permanence of it all, realizing that I was only 49. I have always said I would love to live to 100, and if I were to make it, that would mean that I had spent over half my life never feeling that breast again. I know this is a small thing compared to those who suffer so much more with physical hardships, nevertheless, it was something to contemplate.
I had chosen to go to New York City, to the Robert Allen practice to have the mastectomy. This meant several trips beforehand for consultation and some pre-planning. Then we went down again a few days prior to the surgery, and I had an MRI to locate the deep inferior epigastric perforator vessels that are used to provide blood supply to the flap of fat that is transplanted. A mark showing the location of the vessel to be used and other markings were placed on my abdomen. These guide the surgeon right to the area he needs during surgery.
During our visits we were able to stay at the Miracle House, which is a series of rental apartments in a nice security tower in lower Manhattan, reserved for cancer patients. At the time, an apartment cost only $50 per night, and they allow family members to come, if there is room. (Once we were not able to stay there, and found a quick rental on craigslist.) For those of you traveling to Manhattan to find a specialist, here is where to find info on the Miracle House:
During that last trip for the surgery, we built in a relaxing visit to Manhattan for the family, which bolstered my quavering emotions over what was about to happen to me. Our family is close, and we love to travel together, so it was a very meaningful trip for me in many ways. The morning of the surgery, after following the usual instructions to avoid eating the night before, I said goodbye to the kids at the apartment, and my husband, Jon, took me to the New York Eye and Ear Infirmary to check in -- this is where the Allen practice performs surgery. This hospital, located on the edge of Greenwich Village, services mainly day surgeries, but there is one floor for longer stay surgeries, and there are particular nurses on that floor designated to care for the breast cancer patients of the Allen practice.
After going through the admissions process and getting changed into a surgical gown, I was trundled into the surgical area, and set up in the operating room. There was the usual hustle and bustle of preparation. I remember feeling as though I were jumping off a cliff -- something that I did not want was about to happen, and there was nothing I could do about it at that point. It was surreal, I guess you could say. Then all went black.
During the surgery, a general surgeon removed the breast tissue, while Dr. Levine of the Allen practice prepared the fat flap in the abdomen. The general surgeon made an incision around the inside edge of the areola, at the same place the lumpectomy had been done, and then from the bottom mid-point of the areola down to the base of the breast. He removed the inside tissue, leaving a thick enough layer of breast tissue adjacent to the skin to provide blood supply to the skin of the breast. This was safe because my cancer was not near the skin. A sample of tissue immediately under the nipple was sent to pathology, to ensure that there was no cancer there, allowing them to keep the nipple. Then the flap of fat was moved by Dr. Levine, with its blood supply, up to the breast, and shaped and positioned to match the other breast. Then the hard part came -- the microsurgery needed to attach the vessels in the fat to the surrounding area. This is much more difficult than attaching blood vessels in muscle tissue, which are bigger. This is what makes doing fat-only transfer more specialized, requiring more training. Then all the incisions were closed.
Waking up was probably the most uncomfortable thing I have ever experienced. There was machinery attached to nearly every orifice and appendage on my body. I had booties on both feet to squeeze them and keep the blood circulating during my extended lack of motility, an IV in my left arm and an oxygen monitor on my right index finger. I had a catheter in to collect urine, and two drains sutured into my lower abdomen to collect fluid at that surgical site -- both had bags which hung off my body. There was another drain at the side of my breast, with its bag, and I had an oxygen mask. There was a huge bandage over my left breast and another over the abdominal scar. They were controlling pain with oxycodon, so thankfully there was not a great amount of pain at that point. The sensation was more like having a bad case of the flu -- general discomfort and malaise over every square inch of my body. It was rough.
I was told right away that, as much as I had wanted to keep the nipple and areola, the area had not fared well during the surgery and that I would probably lose it. We were going to wait and see. The good news was that the cancer was gone, finally. I had been under for about 6 hours. I rested quietly for awhile, with no visitors. My middle daughter, ironically, had an important audition for a play that day, and since I knew I would be under all day, I told her and my husband to just go. What would be the point of their hanging around? And the oldest and youngest kids were given money and set free into Manhattan to poke around for the day. I know this sounds a little strange, but honestly the risk of my dying on the table was remote, so it made practical sense to me, and I felt would ease the anxiety for everyone, if they could just do other things while I got through this. And the peace and quiet for a couple of hours after I came to, was kind of nice. They visited when they had all come back together, but I'm afraid I was not very good company. I recall asking my husband if he managed to get the license number of the truck that hit me.
They let me rest that first evening, if you can call it that. The nurses are wonderful there -- very kind and gentle and knowledgeable, because they often care for breast cancer surgery patients. Nevertheless, they had to wake me up every two hours all through the night to check vitals and dressings, empty the drain bags, evaluate the surgical sites (especially the nipple area, which was turning an ominous shade of purple-grey) and to give pain meds if needed. This made sleeping impossible, and those first two nights were especially unpleasant. Even moving around in bed was difficult, with all that equipment attached everywhere.
THE FIRST WEEK OF RECOVERY
The next day I was asked to try to get up. Right. For those uninitiated to the rigors of major surgery, the sooner one gets up and moves around, the better. I understand the rationale of this, but the prospect was daunting, especially with all the Auxiliary Equipment hanging off my body. They sat me up slowly in bed, waited a few moments, and then swung my legs over the edge of the bed. I stayed that way for a few more moments, feeling quite light-headed. They tried to get me to my feet, but I started to lose consciousness, so they laid me back down. For the next day or so, I could barely sit up in bed without seeing stars, so the process of walking, for me, was a longer one.
On day two, I was feeling quite pain-free, and so I delayed getting the oxycodon, wishing to begin tapering off that ASAP. It never occurred to me that the reason I felt so pain-free was because of the oxycodon. The pain started to increase, but I let it go, asking for some Advil. While waiting for that to kick in, the pain continued to get worse, and by the time I had the presence of mind to call the nurse, I was near tears. He quickly got something into my IV, and after a few moments, the pain started to ease back. He admonished me to just keep the pain meds going for a few more days, to avoid that again.
On day three, I was able to stand up, and over the course of the day, the booties and the catheter came off, and I lurched to the bathroom. Every movement and activity felt so strange with this new, and still broken body. As I was able to, I got up and took a few steps, and over the next few days I started walking further, going out to heckle the nurses at their station. It was difficult work, and I felt like I was about 95. With the tightness of the abdominal sutures, it was hard to stand up straight, but they keep after you about this, to prevent constricting the scar in that area. Somewhere along the line, they have me a heavy elastic girdle to support the abdominal area, and this I wore for about six weeks after surgery. It was difficult to wean myself off the girdle -- it was painful without it -- but I took it off for longer and longer periods of time until I could leave it off.
The day they took out the breast drain and one of the abdominal drains was a great day. I loved getting rid of each apparatus attached to me -- one step closer to normal. By Friday it was looking as though I would lose the nipple/areola for sure. So the surgeon wheeled me in to remove it, and I recall being wheeled along to surgery, a few tears slipping out of the corners of my eyes and down into my ears. I had really wanted to keep the nipple, and had done months of research on the subject to ensure that my chances were good. Somehow it made the whole ordeal easier to bear for me, feeling that I would still have my 'breast', just with different fat inside. Now I would need more surgery to create a new nipple, that would never match the other one, or truly look like a real nipple.
I was awake for this, and when he made the first cut I heard him say, 'Hmmmmm. Well, this is interesting." Apparently, when he cut into the edge of the areola, a blood clot flowed out from under it, and the nipple area immediately started to look better -- less grey and more pink. He decided to leave it, and see what happened. I was grateful and filled with hope.
Leaving the hospital was difficult, and I wished I had just another day or two, but there was no choice. We went back to the Miracle house and my family cared for me as best they could. It was left to me to empty the remaining drain bag, and see to the dressings, which I found quite unpleasant. Walking around was still uncomfortable. I was so very anxious to get back to normal, but that seemed light-years away.
I returned to the doctor's office a few days later, where the last drain and remaining sutures were removed, which were few, as dissolvable sutures were used in most places.. Everything looked 'good', except the nipple area. It had begun to turn black, as the blood-starved tissue died off. The symmetry of the breasts was good, but there was a patch of belly skin on the left breast that is typically left until the final surgery to complete the reconstruction the breast. The doctor told me that we should leave the patch permanently to ensure the symmetry. This did not sit well -- one reason I had had immediate reconstruction in the first place was to avoid having patches on the breast. In addition, although they had left the nipple area, it appeared that it would slough off, and be left as scar tissue. I still felt I wanted to keep it and see what remained. Lastly, I was not happy with the belly button -- it was off to the right about an inch! So I left his office that day feeling pretty disappointed about several things.
We went home the next day. We had had some neighbors watching the house, and the wife, my friend Avis, is a former surgical nurse, now home with the family. She really came to the rescue for me. I could not face changing the dressings on the nipple area as it slowly turned black and rotted off, necessitating the removal of that tissue to get down to healthy scar or skin tissue, whichever might remain. She came twice a day for six weeks to care for that area -- my guardian angel. In the end, I lost the nipple itself, and the areola is a mixture of scar tissue and some regular skin. After a year-and-a-half, it doesn't look too bad, and I am hoping that with a rebuilt nipple and some judicious tattooing, it will end up looking pretty good, and I hope, better than a completely rebuilt areola with tattoo. One regret I have is knowing that, had the doctor understood what was going on in the nipple area, and had he gone in sooner to remove the blood clot, I would probably have been able to keep the nipple. Nipple sparing surgery was newer at the time, and new to this practice, so I think he simply lacked the experience that would have helped him to understand what was happening.
The breast incision was actually quite small, and healed quickly. The abdominal scar was the most difficult to cope with, at 22 inches long. It really is quite ugly, although it has started to fade significantly, making it more tolerable to look at. Touching those areas in the early days felt very, very strange, and I am still adjusting, all this time later. It surprised me how large an area was rendered numb by the surgery. I know that some feeling may come back around the edges, but that takes years. During my first days home, my method of coping with all of the scars was to avoid looking at them or touching them as much as possible, and to let time pass and healing to occur.
Sleeping was difficult -- I had to sleep on my back, with pillows under my knees to prevent a raging backache in the morning, so I didn't get very much sleep the first few weeks. I hated showering, which meant looking at the New Me. So I showered only twice a week for awhile, again to let time pass in between 'viewings'. Over time, sleeping and showering got back to normal and the hard parts are now a fuzzy memory, thankfully, as is the whole surgical experience.
Wearing pants has been an interesting experience, and one that leaves me feeling like my mother. When they take the chunk of fat from the lower abdomen, this creates a 'step-off'' or overhang in the abdomen, where there is no fat at the lower end, and the usual belly fat that a slightly overweight middle-aged woman has on the upper end. So I had two choices -- wear hip huggers that would fit around the skinnier part below, (difficult because having anything rubbing on my scar was uncomfortable) or wear high-waisted pants that would come up over the fatter part, leaving me looking like Tweedle Dum. I ended up buying a few pairs of elastic waist pants, and just wore those to death, pulling them up whenever they slipped off the overhang in my belly. At least they were not binding over the whole area. I have not yet had the last surgery, which would remove some of that fat and further contour the belly, making the problem go away. But I have dreaded going back in, so I have put it off much longer than many women do. So I have myself to blame for that.
So my experience with all this was a mixture of dread, resignation, hope, difficulty, gratitude, and relief at having it over with. So many of the more difficult life experiences are that way, aren't they?
Penny Rug Wool
Thursday, May 6
I have to say that during that time, I recalled reading the many statements on the web by patients who said that they immediately decided to have a mastectomy even if it weren't strictly needed, because they were so determined to get rid of the cancer. Sometimes, especially in the case of BRCA cancers, this is prudent, and in any case I would never question a woman's decision about what to do. For me, at the time I felt a subtle urging to appear this determined to get rid of the cancer, even at the expense of a breast, which was secondary. In my heart, however, I dreaded making the sacrifice, and in fact was willing to take some chances to keep my breast. I felt uncomfortable feeling this way, and kept it hidden.
In my case, since my cancer was stage 0, the primary risk for me was that the cancer would return in the same breast and would have to be dealt with again -- not the risk of metastization that some women face -- and so I felt that I should consider keeping the breast. I do believe, looking back, that my surgeon overstated the risk of the cancer returning, and when I repeated what the surgeon had said to the oncologist, he did agree, but there was hesitation in his voice, and I wish I had pursued the questioning, but the surgeon was sitting right there, and I foolishly wanted to avoid confrontation over my questioning what the surgeon had said. Why? I don't know, but I regret how I handled it, because the oncologist's agreement colored my decision-making the following week. The surgeon also talked about the likelihood of disfigurement with another large lumpectomy, and all this seemed to me as though he were 'selling' the mastectomy, which indeed may have been the case. Surgeons, after all, do make their living from surgery -- the bigger the surgery, the more money.
In the end I decided to have the mastectomy, which I also regret now. Having had both a lumpectomy and a mastectomy, I can tell you that the two couldn't be more different. The lumpectomy was day-surgery, and within three days, I was feeling back to normal. Thankfully my large breast handled the lumpectomy very well -- although the lumpectomy was quite large, it was deep in the breast and I couldn't tell that anything had been removed. The breast simply looked smaller. The mastectomy, on the other hand, was the most difficult thing I have ever gone through physically, including several other surgeries and three births. The surgeon kept the nipple, but I developed a hematoma underneath it which was not caught for several days, and this cut off circulation to the area, causing the loss of the nipple and areola. I have a 22-inch scar running an ugly jagged course across my belly. All feeling is gone in my breast and large portions of my belly. I face another surgery to finish repairing the nipple and fine tune the contour of the belly. My belly button is off to one side, looking rather odd.
I don't want to appear vain, complaining about all this. But the fact is that it is likely that my prognosis would be the same if I had just had another lumpectomy, and I would still have my breast and a normal looking belly, with all feeling intact. Naturally, I would prefer that.
I have often looked back at the logic behind my decision to have a mastectomy. If I had chosen more lumpectomy and radiation, there were two possibilities. Either we would get the rest of the cancer, with a sufficient margin around it all, or there would still be some cancer left. Had we gotten it all that time, I would have been good to go, with only radiation remaining. If there were more to be removed, I would be left with the same decision again, which I could wrestle with then. I wish I had had the presence of mind to really think it through this way. I also wish I had found someone to advise me, who did not have a vested interest in doing a mastectomy (as the surgeon did, whether it be to perform a more lucrative surgery or to protect himself from a potential malpractice lawsuit, were he to recommend more lumpectomy, only to see the cancer return later).
Here is the salient point: The most important criteria in determining how likely an early or non-metastasized cancer is to return is MARGIN. This is the area of clean, cancer-free tissue that surrounds the cancer being removed. The larger the margin, the less likely the cancer is to return. The reason is that if cancer is going to return, it will generally return right near the area where it was in the first place, so a nice big margin catches those few cells that remain outside the cancerous area, leaving radiation and/or chemotherapy to clean up the rest. That is the bottom line, and it should be considered as you contemplate what to do. If it is appropriate in your case, go after that margin.
Here is an interesting study article about DCIS specifically that may help you sort out your options:
And here is another basic pros and cons discussion about lumpectomy vs. mastectomy on breastcancer.org, an all-around good resouce for information.
I can never give you definitive advice about all this, but I share this information so that you can make an informed decision. If you choose to have a mastectomy, even if you don't strictly need it, then at least you are doing so understanding what you are getting into. Of course if there is no choice in your situation, at least you have some peace of mind knowing that this was the case, instead of wondering if you should have done something else.
Another thing to consider when talking to your surgeon (and I hope you are a better advocate for yourself than I was) is to ask about incisions. That first surgeon planned to put the incision on the inside curve of my breast for the lumpectomy, but I asked if he could hide it somehow. It turned out that he could put the incision at the edge of the areola -- less convenient for him, but in the end I would not be able to see the scar. Why he would not do this as a matter of course is testimony to how surgeons may think -- they will do what is expedient, often without thought for the 'small' considerations of what might be important to the patient -- like not having a scar on the most visible part of the breast for the rest of her life.
In addition, most mastectomies are done going through the nipple, which is an odd choice to me, especially if you want to keep it. Certainly cutting around half of it to gain access to the breast will compromise circulation. I questioned several surgeons about cutting along the crease at the bottom of the breast, (known as a 'sub-cutaneous' incision) creating an incision that, for most women with a medium to larger breast, will never show again, when the breast sags down onto it. I was told repeatedly that it is impossible to reach all the areas of the breast this way, but how can that be, when a large 6-7 inch incision could be made, which would allow the entire breast to be turned inside out, for Pete's sake? As testimony to this possibility, some surgeons are doing mastectomies this way, and I think that others are just stuck in a rut, frankly. They do it that way because, well, they have just always done it that way, and so they do it that way because that's the way they do it. And that's why they do it that way -- because they do it that way. I often wondered during this time how much more thought they would put into the surgery process, were they themselves faced with losing their own penises! Dark thoughts, I know, but it's the truth. Nobody cares about you the way that you do. So often then, they don't think past their surgical mask, because they don't have to live with the result. They simply go on to the next patient, and earn the next buck. I longed for a doctor with an inquisitive mind who was willing to question everything he does, always looking to improve it.
Another area where I recommend asking questions is in the type of procedure your surgeon recommends, should you need a mastectomy. We are fortunate to have a large medical center near us -- Dartmouth Hitchcock, one of the best in the country, and boasting a brand new cancer center. Regardless, when I went for a consultation on mastectomy in 2008, I found that they did not offer the latest reconstruction procedures, which surprised me. There was no one in the department who could offer me a fat-only transfer (such as the DIEP flap) for reconstruction, or a nipple-sparing mastectomy, which have become the gold standard for reconstruction in those patients who are candidates. In fact, the surgeon I talked to said that she preferred the TRAM flap method, which uses the rectus abdominus muscle along with fat, as being a superior procedure. It's hard to imagine that is true, because removing muscle leaves the patient open for problems in the alignment of their core, which happened to both of the women whom I know personally who had the procedure, and who would not choose it again. I know that many women come through the procedure fine, but I don't think it could be said that the TRAM is superior to the DIEP flap procedure, for those women who have enough fat for the DIEP flap.Here is a Wikipedia article that covers the basic differences between the two:
I do know, however, that the DIEP flap and its variations are much more difficult to perform, requiring up to a year of additional training in micro-surgery. So rather than recommending the TRAM procedure as superior, I would have preferred that this surgeon tell me that there was not a surgeon on staff who had the additional training to offer it. In addition to this, the surgeon who had performed the lumpectomy, when I informed him that I wanted a nipple sparing mastectomy, lectured me about how close to the nipple my cancer was, when we both knew that the cancer was near the chest wall in my 38D breast -- if ever there was a candidate for nipple sparing, in terms of cancer safety, I was it. All of this disturbed me, as I felt that I was being 'sold' procedures that I didn't want, but that the surgeons preferred for one reason or another. In the end, I put on 40 lbs. to get the fat I needed for a DIEP flap (that was fun) and went to New York City for that procedure.
The practice I visited is one of the foremost in the area of DIEP flap, in fact Dr. Robert Allen is the creator of the procedure, and I recommend going to him only. He was the doctor I was looking for, and our conversation revealed why he is the pioneer of this procedure -- he has an inquisitive, questioning mind. Unfortunately, insurance coverage difficulties took long enough to throw me into a time period where he did not have a lot of openings for the next month or so, and I had already waited several months for more surgery, with an unknown amount of cancer in my breast. So in the end, (another decision I regret) I saw an associate for surgery, and I believe I would have been happier with the outcome had I waited for Dr. Allen. He is a charming Southerner, reminiscent of that 'Matlock' character done by Andy Griffith, with his rumpled linen suits, and he has a gentle, friendly, and honest nature that is very comforting to a woman about to lose a breast. I see the practice has added a specialist in the area of nipple-sparing mastectomy, so they continue to be on the cutting edge.Visit them here: DIEP Flap in NY
I don't want to badmouth surgeons, but, again, they will never care as much about your body as you do, even a doctor so kind as Dr. Allen. They will ultimately look after their own interests, so keep this simple fact of human nature in mind, and don't be afraid to speak up, the way I was. Look out for yourself. Look out for yourself. Look out for yourself. Did I say that enough? Look out for yourself. It may be that no one else does.
Sunday, April 25
This is not a blog about PCOS, but I mention it because there is some evidence of an increased risk for PCOS patients of some cancers, especially endometrial cancer, and a likely connection to some breast cancers. So if you have PCOS you will want to be vigilant in looking for symptoms of these, and making sure to get regular screenings and mammograms. The link between PCOS and breast cancer is not clear yet, but personally I believe that it will be in the future, as more studies are done. The link below shows a pdf file of a discussion of PCOS and its associated cancer risks. This link takes a balanced approach about breast cancer, stating that the connection between the two is as yet unclear, but that more recent studies suggest that there may be a connection. In fact, my own oncologist in New York told me to be on the lookout for breast cancer in the other breast later, more than the average woman would, because of my hormone issues.
The link below provides a very insightful overview of the syndrome, and I recommend it to anyone here who has PCOS, just for your own understanding of the health risks that await you, unless you take measures to adjust your lifestyle to accommodate your condition. I learned a lot about my own problem, and I could see from the descriptions of the variations of the disease that I most likely belong to a certain subset of PCOS patients that are not infertile, but do have many of the other symptoms. I wish I could say I learned this from a doctor, but after 30 years of living with it, and talking to at least a dozen doctors about it, I have yet to find one that will talk to me in-depth, knowledgeably and sympathetically on the subject. In the past, this condition has been regarded as benign and not much more than a nuisance, and so its treatment has not been taken seriously, if it is diagnosed at all. For instance I diagnosed my best friend's PCOS, not her doctor. In years past, if it was diagnosed, a woman was told to lose some weight and exercise to take care of the problem. While this is certainly a helpful approach, believe me it is easier said than done with PCOS, when you are trapped in a body hell-bent on hanging on to its fat supply.
The commentary below also takes the balanced approach regarding breast cancer, but states that a connection is likely, although not as yet demonstrated in the few, small studies that have been done thus far.
And here is a great article that also cites an early study done at Johns Hopkins University by Cowan et. al. Read further on down, where it discusses women with low progesterone levels related to cancer.
And an abstract of the original study cited above:
The connection between insulin resistance and breast cancer is much clearer, as shown in the link below, and a significant percentage of women with PCOS develop insulin resistance. This may be the pathway by which studies eventually identify the increased risk of breast cancer in PCOS women.
So I don't want to be alarmist, but if you have PCOS, or suspect that you might from the symptoms I have listed, take care of yourself, and protect yourself as much as you can with regular check-ups and yearly mammograms.You may even want to consult your doctor about using bio-identical progesterone to balance the estrogen in your system. The use of bio-identicals, especially progesterone, is newer, and you may have to look for a doctor who has a good understanding and appreciation of the value of this.
Also, I can say personally that eating a low carbohydrate diet has helped me to keep weight off, and I know that eating this way can only help prevent insulin resistance, heart disease, and diabetes down the line. So I recommend it to you, in fact I will even recommend an eating plan called 'The Carbohydrate Addict's Diet', a paperback book that outlines a great low-carb plan that can be followed permanently without giving up carbs forever. I eat a low-carb breakfast and lunch (which I have come to love) and a regular dinner with the family, including carbs in reasonable amounts. If I want cookies or ice cream, or rice or bread, I eat it in moderation with that meal. I have been able to sustain this plan for a number of years.
None of these links is as recent as I would like, but I am always on the lookout for new information, and as I find it, I will pass it on to you. There is a lot of other information on the web about PCOS, and this has increased greatly in recent years, so take advantage.
Rug Hooking Wool
Monday, April 19
Breast Cancer Article
Which would you rather have?
And don't think that you will just find the lump when you or your doctor do a breast exam. The kind of cancer that I had, and that many, many women have (Ductal Carcinoma In Situ), will never be felt during a manual breast exam until it is far more advanced.
Call and make that appointment now.