Got naked for the 2nd rads oncologist today
Well, not ALL the way naked. It's all become so clinical now the way I remove my clothes to show people my breasts (and I don't mean just for my doctors). I have a few pictures on my digital camera that I took of my final tissue expansion approximately a month ago. I keep forgetting to delete them now that I've downloaded them to a safe file on my personal computer. So everytime friends pick up my camera to click through my photos, I run the risk of having them view shots, from all different angles, of my naked torso. It's interesting that my breasts no longer feel like a true part of me. Perhaps that's why I think nothing of having people view them or feel them for that matter. In fact, I allowed my next door neighbor to touch them last weekend when I ran into her outside and she inquired if I had been ill recently. All those flowers that were being delivered to her door while I may have been away from home must have given her some clue. I flash my boobs now for anyone who's curious, but I still guard the photos of my old boobs as if they are sacred. Well, they are ... to me. ;-)
Today I consulted with Dr. Judith Samuels, a radiation oncologist at Mount Sinai Hospital in Miami. She was actually my second opinion, following my first consult with Dr. Ana Botero at Memorial Regional Hospital in Hollywood about two weeks ago. In a nutshell, Dr. Botero said that although there is no ONE compelling factor in my case to warrant radiation, she would recommend that I do it because of my age (I'm young, have my whole life ahead of me, ... yadda, yadda, yadda) and it would just be one more weapon in my arsenal to mitigate the chances of a local recurrence to the breast. She did agree that I don't fall within the normal guidelines for radiation. In other words, I did not have a tumor greater than 5 cm and I did not have more than 4 positive lymph nodes. Moreover, she agreed that I have been "extremely aggressive" already -- insofar as I have done chemo, had a mastectomy, and continue to treat with Herceptin infusions (until Feb. 2008) and Tamoxifen pills for the next few years.
I inquired where she would radiate if all the breast tissue was now gone. She said she would do a standard treatment, focusing the radiation beams to the chestwall, axillary (under the armpit), subclavical (near the collarbone) areas, as well as the site of the mastectomy incisions since these are the areas where a local recurrence would typically occur. She seemed convincing enough when she said that the lower level dose of radiation I would endure over a 5 week period would not significantly interfere with my reconstruction. Dr. Botero said she and her team do an excellent job of monitoring the skin and could provide for a few days off if it appeared the skin was beginning to burn or blister. She said I might be prone to some tightness of the skin, but that I would not be at absolute risk for capsular contracture (where the scar or capsule around an implant begins to tighten causing severe pain). I raised an eyebrow to this however. I know from reading quite a few anecdotal posts on my online support group that most women who were subject to radiation following mastectomy often times had to take muscle from their back (a lat flap) to cover their implant. Dr. Botero seemed puzzled when I brought this to her attention, almost as if she had never heard of a latissimus dorsi flap procedure. Hmm? Red flag there.
Dr. Botero was very thorough and patient with her time, spending a little over an hour discussing my case and all the factors she considered. The problem, she said (as did Dr. Samuels today), is there is no good, RECENT data concerning women who have chosen to forego radiation for lymphatic invasion who are ALSO doing systemic treatments such as Herceptin and Tamoxifen. The current radiation guidelines stem from a retrospective study conducted in 2001, using data on women during the 1990's before Herceptin (a wonder drug for reducing the risk of recurrence) was even around. Dr. Botero mentioned that although the current guidelines use 5 cm as a benchmark, she is more inclined to use 3 cm as a determinant. Although my tumor was no greater than 3 cm, the entire area involved before chemo including DCIS (i.e., precancerous lesions) was 4.2 cm as confirmed by an early MRI. She will not concern herself with how much the tumor may have shrunk during chemo; she is only concerned with what existed in the first place. For all these reasons, Dr. Botero said she would recommend radiation, but she would not STRONGLY recommend it. It is ultimately up to me.
I chose to see Dr. Samuels today because I had heard so many wonderful things about her -- that she is bright, thorough, and sensitive to a woman's reconstruction concerns. Furthermore, she is part of a comprehensive cancer center where most cases are brought before an entire tumor board and I would have the added benefit of hearing the opinions of any other doctors who differed from her own. Dr. Samuels is a friendly, compassionate, supportive woman who seemed to understand how much I've been struggling with this issue. She reviewed my entire medical file and films before opining that there is nothing about my situation that makes a compelling case for radiation. However, she feels that my age and the evidence of lymphatic invasion in the breast tissue that was removed makes my case a bit worrisome.
Dr. Samuels was also respectful of Dr. Botero's overall assessment, but stated that she wouldn't be as "cavalier" regarding the potential effects radiation could yield. For instance, she said even in women who have done breast augmentation for purely cosmetic reasons, they stand a 50% chance of capsular contraction. Most assuredly, radiation will increase this risk somewhat. Also, she does believe I would have some noticeable difference in appearance between the radiated side and the non-radiated side. Furthermore, in Asian and black women, the skin has a greater chance of appearing permanently darker on the radiated side ... most likely the result of greater melanin. She did not sugarcoat this aspect, although she said people can differ as to what appears to look good or not. There's no question that I want to do everything to save my life, but certain things I feel have to be weighted against other aspects that are still important to me at this stage of my life. I am a single girl and I make no apologies for having these cosmetic concerns in view of everything else I have already done and put at risk in an effort to be aggressive about this.
To help me make a better informed decision, Dr. Samuels is going to contact the pathologist who reviewed my breast tissue slides following surgery to determine how extensive the lymphatic invasion actually was. Apparently, there are roughly 19 slides that were reviewed. Dr. Samuels said if there were just a few cells contained on 1 slide vs. all 19, that may help give me some peace of mind about my almost made up decision to forego rads. She feels as I do that Tamoxifen and Herceptin are 2 very aggressive, systemic treatments that would likely take care of any remaining cancer cells that could be looming in the subcutaneous tissue of my breast. It's all a crap shoot (pun intended), but I feel the odds are more or less in my overall favor. I am going with my gut on this one, but in the meantime, I await Dr. Samuel's call the end of this week.
SIDEBAR: I e-mailed my surgeon, Dr. DerHagopian, after my first consultation just to keep him apprised of the situation. He usually picks up the phone to give me feedback, since he's someone more akin to Two Finger Tony when he types. I guess it may have been too late to call me, so this is what he wrote back, "i prob. would not radiate, bob d." Now I have great respect for him and his opinions, but I couldn't help chuckling to myself about what HE would do with his breasts.