Some people like things to be very defined into good or bad. One could also say, perhaps, sick or healthy or perhaps positive and negative. It's understandable as it can make decision-making easier. On the other hand, some of us like some wiggle room, or shades of gray, as one might say.
The decision for me to have the more invasive surgery was fairly clear-cut once we had as much information as we could gather without actually seeing the tumor and other cancer cells. Yes, there are days that part of me still regrets doing it (well, feeling that it was the only solution), yet I know deep down inside that I did what needed to be done. Of the two surgeries available, it was the one that would increase my survival rate far more and possibly, hopefully, just maybe reduce my need for further treatments.
Reduce it, it did. We still don't have the Oncotype DX score, but even the basic pathology report was far more positive than anyone expected. To our complete and utter shock, even the radiation oncologist agreed that the report had surprised him. Instead of the worst case scenario of mandatory chemo and radiation, everything is still up in the air, including radiation.
I spent the weekend fearing the worst about today's appointment and had a terribly sleepless night last night. The issue that had taken ahold of me last Wednesday was a margin. The anterior (front) margin from cancer cells to normal skin tissue was only 1.2 mm. All other margins were much greater and created no worries for the doctors. In fact, as this particular margin relates to the DCIS (my stage 0 cancer that was in the ducts and non-invasive, as opposed to my IDC tumor), it was less of a concern for me. However, despite absolutely no nodal involvement (not one iota), the breast surgeon and oncologist both felt it best we meet again with the radiation oncologist to review the pathology report and my "options" for treatment.
As I thought, starting the day off with a massage was the best idea I have had in ages. Not only was the therapist able to now work on my right arm, but was able to stretch my legs for me in ways I haven't been able to do since the morning of the surgery. She was surprised by the flexibility in my arm and this gave me yet another boost, since I don't want to find myself in physical therapy for something I could have prevented.
A good hour later, Peter was ready and waiting with everything (my 'Cancer 101' suitcase) we needed to meet with the radiation oncologist located one floor beneath us. The radiation oncologist, Dr. B., met us personally in the waiting room, greeted us gently and led us back to an office. He started off with letting us know he had reviewed the path report and then asked what I understood about it. Where to start?
I repeated key parts and left it at that, as it is several pages long. We touched on the good news (almost everything) and then ended up at the margins. My margins (the difference I mentioned earlier) were negative, but just not AS negative as they could be. Dr. B. was hoping for a 2 mm difference, but we were left with just the 1.2 (mind you this is for the front margin only). He then offered various rates of recurrence, based on doing nothing (possibly chemo) or including radiation. In the end, while the rates were obviously lower should radiation be completed, the rates of recurrence without radiation were not overly frightening to either one of us. Then the doctor, who had been so calm and almost, shall I say, reassuring (?) up until this point said, "Well, here is a 'shades of gray' scenario. In the end, this really, truly is your choice."
I could have cried. Well, honestly, I have already cried several times today because even with the margins being close, I did not expect Dr. B. to so readily offer that the ball is in our court. Perhaps it also had to do with a tiny piece of information that Peter and I both happened to find out on-line this weekend.
I know Google isn't always our friend, but I have recently been trying to stick to areas that are truly oncology research sites. While I do appreciate websites and discussion boards on-line, it is so incredibly difficult to truly compare even the most similar cases of breast cancer. Therefore, when both of us happened on a case with a unique twist for a person not wanting radiation, we knew we had to mention it to at least one of the doctors, if not all three.
It was a gamble, and we knew it. The last thing we wanted to do was to be admonished by the doctor for our 'miracle cure' we found by accident on-line. However, the notion sounded so reasonable and made so much sense, that when we were nearing the end of the meeting, Peter forged ahead with our question: Would a secondary scraping and possible removal of a tiny bit more skin to achieve that clean margin?
Since the margins in question are close to the skin, there will be a chance to revisit them: during reconstruction. We were sure Dr. B. would just laugh, or perhaps say, "Yes, but"…and change the discussion. He didn't. In fact, he said that it was a reasonable solution, and should we decide we wanted to try it, and the new margins were 2 mm or more, then radiation may not be necessary in my case. However, we would have to verify with the plastic surgeon that he would be comfortable taking on this task. We also realize that if I choose to go this route, it means that I could still end up having radiation (post-reconstruction) if the margins are not comfortably clean. However, even then, because of the gray area, it would not be required, just recommended.
The meeting ended soon after, we shook hands and Peter and I literally floated down the hallway. To say it went better than expected was a complete and utter understatement. In fact, we were now even more anxious to meet with Dr. X and find out his take on the situation.
We did not have to wait long, as the second drain needed to come out. There had been not been much drainage to begin with and it had nearly abated entirely by this morning. We are traveling tomorrow and with 8 or so hours of driving and a week before we could see him again, he felt the sooner it was out, the better off I would be. Oh, and he had another surprise for me…perhaps you could guess from the tools in the photo?
We began the appointment with the standard review of the incision and then, as promised, the drain was pulled. While it's not without discomfort, it was over quickly and we then moved onto the next step: my first expansion. Peter had been told over the phone that this would not occur for at least another week, so we were shocked to step in the room and have the assistant indicate that everything was "ready to go" for that step.
Immediately following the drain removal, Dr. X used a magnet to find the port in the tissue expander. Interestingly enough, that was the most painful part. As I have so much sensation, the pressure of locating the port was far more intense than the brief stick of the needle or the injection of the saline. Within a few minutes the syringe was empty and we were ready to be on our way, save but for one question: would he, Dr. X, agree to the residual scraping and consider it to be a viable option that would allow me to possibly avoid up to 7 weeks of radiation?
Without hesitation, he agreed that it was a topic that could be easily researched. It is really just a matter of him discussing the location of the unclear margins with the breast surgeon. In fact, he said that often the old scar from the (are you ready for this??) mastectomy (there, I typed it!) is removed, and he can also easily scrape the other areas close by and submit for pathological review. With that, we left the office and as we were walking to the car, I started to tell Peter how I felt so lucky. I then paused and realized that not even two weeks ago, I was miserable, questioning what I had done to deserve this and asked "Why me?" on an hourly basis.
I know it's not necessarily luck. I know it simply is what it is. However, considering where I was mentally and emotionally six weeks ago (or even 5 days ago) and where I am now? Utterly amazing what just little bits of good news can do….it's also interesting how simple twists of fate can alter your life in other ways…but let's save that for another post!
Note: We still have to meet with my regular oncologist next Wednesday and, on a separate note, coordinate with the breast surgeon regarding location of the margin. We are very optimistic, though, as the two most heavily involved doctors in this particular matter both agree it's worth a try which is a huge weight off our shoulders! We also know there is a chance that it might not work at all, but at least we gave it a shot…
