. . 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.

Saturday, May 8

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.


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 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

1 comment:

  1. Thank you for all the details it was very helpful...will be doing a mastectomy tomorrow so now I have a better idea about what to expect. I hope that you are now fully recovered and pleased with the results of the reconstruction. Wishing you and your family all the best and continued good health.