Dear Friends,
I've decided that a blog is the easiest way to share with you what is happening to me. It is here for those who want to read it, and easily ignored by those who don't. Since I did not start this at the beginning of my breast cancer journey (even now, it sounds unreal to refer to myself as a cancer patient), this first posting will be LONG. I will begin with the most recent status, then backtrack.
Saturday, March 12, 2011
I will be having a bi-lateral mastectomy at Mission Hospital in Mission Viejo this coming Monday, the 14th. The surgery will include the beginning of the reconstruction process, and will therefore require 2 surgeons: Dr. Kenneth Kushner, who will be performing the mastectomy, and Dr. Allen Doezie, who will be doing the reconstruction. The first phase of the reconstruction involves inserting what is called a "tissue expander" - think of it as a partially inflated balloon. This is placed underneath the muscle of the chest wall and gradually filled up (over a period of weeks) with saline to stretch the muscle and skin to make room for the final breast implant.
The surgery start time is 12:30 pm, and I'm told it will take about 5 hours. I hope to only spend one night in the hospital, although when I am released will be determined by both my doctors deciding I am fit to go home, and me deciding I feel well enough to do so. Depending on the type of room I am given after surgery, we've been told that Pete might be able to stay overnight with me, which makes us both happier.
Wednesday, March 9, 2011
Had a "Bye Bye Boobs" party with some of my girlfriends. In spite of the scary and serious nature of my upcoming surgery, I could not get this alluringly alliterative phrase out of my mind: Bye Bye Boobs. So I decided a Girls' Night was required. It was a gathering of female friendship, a toast to early diagnosis, and a celebration of having health insurance (although we still expect our out-of-pocket expenses to be over $10,000). Everyone brought something - we had dinner, drinks, and even a little dancing. Many thanks to the elves who cleaned up so that at the end of the evening all I had to do was rest my weary feet while having a last glass of champagne.
Earlier in the day I had my final pre-op doctor's appointment, this one with Dr. Kushner. It was primarily a chance for me to ask questions (of course I had a list), and for him to confirm that I was sure of my decisions. Pete went with me - it was his chance to get to feel as confident with this surgeon as I do. He had been inclined towards me choosing Dr. West, but that's largely because he was part of the consult when I met with Dr. West, but hadn't been there when I had my first visit with Dr. Kushner.
Tuesday, March 8, 2011
I attempted to go to the twice-monthly breast cancer support group meeting at the Women's Wellness Center, but when I turned up, the place was deserted. A night worker found me wandering around and made a phone call, and a few minutes later Susann called me back - I had the wrong night. The meeting had been on Monday. Frustrated more by the waste of time driving down there and back than anything else, I drove home again to prepare for the Girls Night the next evening. I hadn't felt a desperate need to unburned myself at a support group - I've done nothing but read, talk, and write about all this for the past month. But I did think it would be comforting, a few days before the surgery, to be around other women who had gone, or were going through, this.
Monday, March 7, 2011
Today I had my pre-op appointment with the plastic surgeon, Dr. Doezie. I signed about 42 pages of consent forms, then we had a long question and answer session, then photographs of my breasts were taken.
Tuesday, March 1, 2011
I've finally made my decisions: bi-lateral mastectomy with reconstruction, using Dr. Kushner and Dr. Doezie, with surgery at Mission Hospital. In the end, I believed that the quality of the surgeons at both places I was considering was excellent, but it is more convenient to be treated at Mission Hospital, and I felt that there was a quieter, more personal atmosphere at their offices than at the other place. But as soon as I made the calls to get the surgery schedule, my anxiety level spiked. I wanted to call back and cancel, to say I'd changed my mind. I felt something I rarely feel: truly scared.
To someone who has not been through this process, it no doubt seems extreme that I started with a diagnosis of Stage 0 cancer - not even a palpable lump yet - and ended with a treatment that involves cutting off both my breasts. Hell, I HAVE been through this process and it seems extreme to me. But I did not reach this point easily or without a great deal of thought and research - it has been a 3 week long, all-consuming process. Deciding to have a mastectomy on the cancerous breast was the easy and obvious part. In the majority of cases, the treatment for DCIS is either lumpectomy followed by radiation, or mastectomy. Both treatments are considered to be equally effective. However, it was obvious almost from my first meeting with Dr. Kushner that the amount of tissue which would need to be removed during a lumpectomy - relative to the size of my breast - would leave me with almost no breast at all. DCIS grows in the milk ducts, so although it does not form lumps big enough to be felt, it can still affect a large portion of the breast. In my case, the MRI showed an almost 1" length of tissue affected. The MRI also showed a couple of other areas of concern, and had I been adamant about a lumpectomy rather than mastectomy, those areas would have required an MRI-guided biopsy. There was just no reason to go down that road. And finally, remember that the pathology report from the biopsy indicated the cancer was "high nuclear grade with focal necrosis", meaning it was an aggressive form.
Why the left breast as well? It was an accumulation of less compelling reasons, but ones which added up. The bottom line was that there was no physical or emotional advantage to me to keeping it, and there is a physical and emotional advantage to removing it. One you have cancer in one breast, your odds of it occurring in the other breast increase. The statistics on this vary, but I had 2 different doctors say to me that they can be as high as double the risk of someone who has not had breast cancer. Breast cancer patients who do not have bi-lateral mastectomies are advised to have mammograms and screening every 6 months because of this increased chance of cancer. And the risk increases over time - since I am only 48, I hope to have a lot of years ahead of me, and I do not want to live those years knowing that for every one that passes, my chance of cancer in my remaining breast is growing stronger.
Secondly, part of my surgery will be what is called a sentinel node biopsy. This means that the surgeon injects a dye into the breast with cancer and traces it to find the first lymph nodes serving that part of the body. These (usually about 3) are removed and biopsied to determine whether or not the cancer has spread. This is different from what is called axillary node biopsy, where many more lymph nodes are removed - it is the axillary node removal issue which has been in the press recently, since newly published medical studies have called into question whether it really benefits the patient. But, even removing just the sentinel nodes compromises your lymph system in your arm on that side. By removing the left breast pre-emptively, I can avoid the possibility of having to have lymph nodes removed on that side in future.
And finally, I will end up with better cosmetic results. Which brings me to the decision about reconstruction. This one I had a very, very hard time with. One day I would decide to have no reconstruction, the next day I would decide to have immediate reconstruction, and the third day I would decide I couldn't decide - delayed reconstruction was an option (mastectomy now, reconstruction at some later time, if I decided I wanted it). God, I sound like I'm building a bridge, don't I?
At first I was strongly resistant to having reconstruction. But then I thought: if I had a melanoma on my face, and removing it would leave me badly disfigured, I would not think twice about having plastic surgery to repair the disfigurement. I finally realized that because it was BREASTS that were requiring plastic surgery I was confusing the core decision. I asked myself, "Do I care what I look like?" And the answer is "Yes."
On the days when I thought I would not have reconstruction work done, I also decided that I would wear prosthetic breasts inside a mastectomy bra out in public. I did not want to parade my completely flat chest to announce to everyone who saw me that I was a breast cancer survivor. And I sure as hell didn't want to spend the rest of my life wearing floral blouses with ruffles to hide the fact that I had no breasts. But I also realized that every single time I strapped on that bra and stuffed a rubber boob into it, I would hate it. I realized that if my appearance mattered enough to me to wear external prosthetic breasts, I might as well make it easier on myself and wear them internally - it will look better, too.
This decision is not about preserving my femininity or sense of self worth - I learned long, long ago that my breasts have nothing to do with that. It's simply, for me, the less unpleasant of the two choices I have. At this point, I want to say that I have never in my life been more grateful for small breasts than I am now. Breast reconstruction does not look the same as a natural breast, or an augmented breast. But it is certainly easier for the plastic surgeon to get good results with smaller breasts, and mine are going to remain small (yes, I am resisting the temptation to find out what power a D-cup can wield over men).
And on the bright side: I shouldn't ever have to wear a bra again!
Monday, February 28, 2011
Which surgical team to use? Arrrggghhh! Patients have these hugely important, life-altering decisions to make when choosing doctors, and very little actual information to work with. From everything I've been able to learn, though, both Dr. West at the Orange County Breast Care & Imaging Center and Dr. Kushner with Saddleback Valley Surgical Medical Group are outstanding surgeons and I feel that I'll be getting great care whichever one I decide upon.
Thursday, February 24, 2011
Pete came with me today to my consultation with Dr. West at the Orange County Breast Care & Imaging Center in Orange. My first impression of the place, which had been emphatically and enthusiastically recommended to me by Kit (a friend and breast cancer survivor who had her second opinion done there), was that it was like waiting for a table at the Cheesecake Factory. There is a line in the floor as you approach the registration desk with words to the effect of "please wait here for next available agent." When it was my turn I was handed the usual enormous stack of paperwork, and a PAGER. No, I mis-remember. I didn't get the pager at first, because they had run out of them. I went off to find a corner of the huge and crowded waiting room to start on the forms, and a little later someone came over to hand me a pager. To be fair, they also had a volunteer come introduce herself and give me a folder of information and resources about breast cancer and offer her assistance.
Once we got beyond the waiting room, though, the atmosphere was much different. Pete and I both liked Dr. West a lot. After his initial examination and very brief review of my case, he seemed to think that mastectomy was the right decision, but he did say that it would be another week before their tumor board was able to give all my records a full review. They had requested the last 3 mammogram films & reports I'd had, along with the MRI and the pathology report and tissue slides from the biopsy.
Wednesday, February 23, 2011
Today I had an appointment with Dr. Nolan, another plastic surgeon I'm considering using. He has a terrific nurse working for him, very warm and welcoming. I was considerably less traumatized by this plastic surgery consult than I was by the first one, but still found it hard.
Thursday, February 17, 2011
I had my consultation with Dr Doezie today - the plastic surgeon on the tumor board at Mission Hospital, and the one recommended to me by Dr. Kushner. It was considerably more traumatic than I thought it would be. Now that I know more about breast implants than I ever wanted to, I am even more horrified and saddened that so many women do this to themselves voluntarily. Prior to my visit I had looked at Dr. Doezie's website, where he has posted before & after photographs of his reconstruction work. I had naively thought that reconstructed breasts would look like augmented breasts (in the dressing room at my yoga studio I've seen a lot of boob jobs in all their naked, gravity-defying glory), so I was at least able to get through the first shock of what reconstruction looks like in the privacy of my own home, with only the computer to witness my reaction. The basic shape seems to be the same in augmentation and reconstruction, I just hadn't thought about the scarring that happens during reconstruction. Of course it makes sense, incisions to remove a breast are going to be different than incisions to insert an implant. And then there's the nipple/aureola issue. After a mastectomy, you don't have them anymore. The nipple, too, can be reconstructed by a plastic surgeon, and the areola tattooed on, but I don't think I would have that done if I decide on reconstruction. For one thing, one small benefit to reconstruction is that you can give up wearing bras - and I hate wearing bras, they are uncomfortable. So I certainly wouldn't to have to wear one just to cover up a fake nipple. And if I decide to have the implants, and if I have anything tattooed on them, it would be something a lot more interesting than a fake areola.
I made it through the consult with a stiff upper lip, but after Dr. Doezie left the room and the nurse was with me, I started to break down. Then the nurse started to cry, too. I was actually quite touched by her sympathy. They didn't even have a damn box of tissues in the exam room! I guess most patients visiting plastic surgeons are happy to be there because they're changing something they want changed, so maybe there's not a lot of tears.
I got a grip on myself as best I could, then I left and sat in my car and cried. It wasn't really about the plastic surgery, it was just the proverbial straw. It was the moment that it all really hit me and I realized that this was a serious thing, and I was going to have to do some things I didn't want to do.
Friday, February 11, 2011
Today was the tumor board review. Those of us with cases being reviewed gathered in a conference room at the Women's Wellness Center at Mission Hospital, along with a volunteer who is also a breast cancer survivor, and who is there to answer questions and be a calming influence. I was encouraged to bring Pete along to this, so I did. One by one we were each called into an examining room, where we stripped down to the waist and then had 9 doctors crowd in to look at us while one or more of them did necessary poking and prodding. I was the last one in our group of 4 to be examined. After all of us had had our turn, we each went away with our respective surgeons to talk about what the board's opinions were.
This was the first time that Pete had met Dr. Kushner, and of course it was my first meeting with him since the MRI, so there was important new information to discuss. The MRI had indicated 2 other ares of concern in the right breast. If I wanted a BCT (Breast Conserving Treatment) - meaning a lumpectomy instead of mastectomy - then those areas would have to be checked using an MRI-guided biopsy. The MRI also showed that the cancer at the original biopsy site seemed to be about 1.5 cm long (about .75 inches). To do a lumpectomy, they would need to remove an additional 1 cm of clear tissue surrounding the cancer, meaning the amount of tissue being removed would be 1.5" long by about 1" wide - and that's just the original site. After explaining this, he asked me if I had any ideas about which treatment course I would want. I thought for just a moment, and said "I think mastectomy." Then Dr. Kushner said "To be honest, that's what the tumor board thinks is the best course of treatment."
The discussion then moved on to whether or not I would remove the left breast, and I asked about testing for the BRCA mutation. It turns out that this not something done automatically, or without serious consideration. I need to have an appointment with a genetic counselor before an order could be written. They found time for me to meet with her later this same day.
By the time I returned for the genetic appointment, my 5th visit to this medical building in 4 days, it had begun to feel, in a strange way, like a refuge. Outside of the people there, Pete was the only one I'd told. Outside, I was still pretending that nothing was wrong, But inside the Women's Wellness Center, they knew. They knew what needed to be done. They knew that, now, I was one of "them" - a breast cancer victim.
Thursday, February 10, 2011
Met with Dr. Kushner at Saddleback Valley Surgical Medical Group. We had an hour-long consultation, and I liked him. He reassured me that this type of cancer is very treatable, that the survival rate is almost 100% when it's caught and treated this early. He said the next step was to get an MRI, and that he would like to present me and my case at the weekly tumor board meeting, which would be happening tomorrow. His office pushed through the authorization for the MRI and arranged for a tech to stay late that day to fit me in, so I went home to try to get some work done, then came back at the end of the day for the MRI.
The MRI device was not as claustrophobic and I had feared it would be - it was shaped like a gargantuan donut, and only the body part to be scanned is inside the machine - my head and feet were sticking out. It is, however, so noisy that they gave me earplugs, and headphones over that (with my choice of music). The headphones also allowed the tech to talk to me - she gave me regular updates about how the time was proceeding. But the only way I could communicate with her was by squeezing a panic button, and she told me that the only good reason to squeeze the panic button was if I thought I was going into anaphylactic shock from the dye they inject part way through the scan. The scan was to take 32 minutes and it was ABSOLUTELY critical that I did not move ONE SINGLE MUSCLE. I had to be face down for this, but thank god they had a quite comfortable upper body cradle designed just for this purpose - not at all like the tortuous biopsy table. However, as soon as she told me to relax and just breath normally, I felt short of breath and desperately wanted to take deep lungfuls of air. But, I "passed" the test by staying still enough that they got the scan they needed.
Wednesday, February 9, 2011
My friend Stuart called this afternoon, just as I was leaving to do some errands. I spent some time complaining to him about the insurance hell I'd been through on Monday and how I didn't really think the biopsy had been necessary, and that the next time I was told I needed a biopsy I was going to just wait 6 months and do another mammogram to see if anything had changed before I rushed off and had a $4,000 procedure done for nothing. Ironic, isn't it?
As I was driving down the hill, my cell phone rang. Honestly, I never use the phone while driving, so I just made a mental note to check messages when I got to my first stop. I did my first errand, having already forgotten that I'd had a phone call. When I got back into my car, I remembered, and found a message from Dr. Breiterman, saying he had my biopsy results and would I call him back to discuss them. Right then, I knew. We do, don't we? If the news is good, they tell you so on voicemail "Hello, this is Dr. Breiterman, just wanted to let you know that I got your lab results and, as I thought, it was nothing to worry about." If the news is bad, they ask you to call them back to discuss the results.
So I called, and I became a cancer patient. He told me the next step was to probably get an MRI, and that he had already called my OB/GYN doctor with the results so their office could arrange the test for me. Needless to say, I ignored the rest of my errands and rushed home to start working on getting that appointment. My OB/GYN's office was, in fact, thoroughly useless in this matter, and after being transferred to a voicemail system to leave a woeful message I though to myself "this is not the doctor I need to be seeing next". So I called Susann, the Nurse Navigator at the Women's Wellness Center, and asked her who to call next. She referred me to the surgical group their center works with a lot - Saddleback Valley Surgical Medical Group - and I called them. I felt that as soon as I said "breast cancer" their receptionist kicked my case into High Priority - she got me an appointment with Dr. Kushner the next morning.
Tuesday, February 8, 2011
This afternoon I had a stereotactic core biopsy. When I arrived at the Women's Wellness Center at the Mission Viejo Hospital complex, a nurse was already waiting to guide me through the process. That was the first time I sensed that I had crossed a certain line - not just an impatient customer waiting for a routine mammogram, but a patient with a potentially serious illness. I spent a few minutes with Susann, who is a Nurse Navigator. Her job is "to work with you and your physician from the time of your biopsy throughout your entire treatment, including surgery, chemotherapy, radiation therapy, and beyond." When told me how the biopsy would be performed and handed me booklets about breast cancer treatment, saying "Don't read anything into this - I don't know anything you don't already know, we just give this to all biopsy patients."
Dr. Breiterman was the radiologist performing the procedure - he reviewed the films with me, and discussed the procedure and why it was being done. Only tiny specks of calcifications could be seen, and he told me he was 90% sure it was just vascular calcifications, which do happen as women age. I thought "OK, no problem".
The biopsy table is just that - a flat table with a hole in. You lie face-down, with the breast to be biopsied hanging through the hole and your head twisted to one side, flat on the table, with your opposite arm bent up under the shoulder, to sort-of tilt the biopsy breast downwards. The table is then raised, and the doctor & nurse work underneath the table. There was only mild discomfort with the biopsy procedure itself, but what was agonizing was what it did to my neck. I'm not really sure, but it seemed the procedure took about 20 minutes, and I was seriously beginning to wonder how much longer I could stand it. When it was over and I was allowed to sit up again, I literally could not move my head - my neck had completely frozen. I had to sit with an icepack on it for a while before I could make even slight movements.
The procedure done, I came home and Googled "vascular calcifications" and become more concerned about a tenuous connection between that condition and heart problems (my father died of a heart attack at 56) than I was about breast cancer.
Monday, February 7, 2011
Today was insurance hell day. I had been out of town the week before on work, and not in a position to spend a lot of time on the phone sorting out personal matters. So I hadn't had a chance to check-up on what exactly my insurance policy covered. I spent the day being ping-ponged between the Women's Wellness Center at the Mission Viejo Hospital, where the procedure would be performed, various departments at Mission Hospital, various representative of my insurance company, and assorted other radiology groups. Truly, this should be the subject of a whole other blog, and I will not dwell on it here.
But I mention insurance hell, because it was so hard to figure out what would be covered and what it would cost me ($4,000) that at one point I considered not having the biopsy done. My little breasts are packed with dense, fibrous tissue and I've had to have "special view" mammograms and an ultrasound in the past. It's true that those tests did not indicate a biopsy should be done, but with those false alarms in my past, I really thought this radiologist was being overly cautious. I was a little concerned - how can you not be? - but not much.
Thursday, January 27, 2011
I went in for my "special view" mammogram. I wasn't too concerned, having been through this process before. There was a long wait for the mammogram, then a short wait while the radiologist looked at it and decided I needed an ultrasound (still wasn't concerned, I've also been through this part before), and then a really long wait for the ultrasound. What I didn't expect was that the radiologist recommended a stereotactic core biopsy.
Monday, January 17, 2011
I went in for my annual-ish mammogram (it had been 14 or 15 months since the prior one). A few days later I got a letter saying I should go back for a "special view" mammogram.
No comments:
Post a Comment