Having a Mastectomy -- What to Expect

To begin, let me say that I'm sorry this description is so long, but I know there will be those who read every word, hoping to understand what to expect, and those who scan it looking for the main points, and those who skip it altogether! So I set out to provide as much detail as the most interested person would want to read. So use it as it works best for you.

PREPARATIONS

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:

http://www.miraclehouse.org/

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.

SURGERY DAY

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.

GOING HOME

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

Choosing Between Lumpectomy and Mastectomy, and Advocating for Yourself

This is the loaded question for many breast cancer patients. Many times there is no choice, and your doctor will certainly tell you if this is the case. Often, though, the patient will have to decide between the two, and that can be difficult, as it was for me. In my situation, my breast was large enough to sustain a sizable lumpectomy without deformity, however my stage 0 cancer was fairly large and particularly nasty. So after the first lumpectomy, when we found that there was still some cancer left, it came time for me to decide what to do. I wrestled with this question for a week or two, all the while feeling rushed to decide by my surgeon, who had scheduling difficulties, and by the fact that I still had cancer left in my breast.

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:

http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5

And here is another basic pros and cons discussion about lumpectomy vs. mastectomy on breastcancer.org, an all-around good resouce for information.

http://www.breastcancer.org/treatment/surgery/mast_vs_lump.jsp

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:

http://en.wikipedia.org/wiki/DIEP_flap

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.

Quilting Wool