Three Strong Opinions

After allowing myself a day of shock and self-pity, I'm now in full-blown information-gathering mode about the smartest way to proceed. Unfortunately, I am coming to grips with the idea that where I am emotionally might not match up with what makes the most sense, and I need to be open to all options. That said, I've been gathering opinions from message boards, friends, medical professionals, stray dogs, etc. LOL.

Opinion #1

In this post, I wrote about a woman I worked with in grad school with whom I remain friendly ( = Facebook friends, though I think I am pickier about my FB friends than some). This woman had breast cancer in her early 20s and again a few years ago, this last time opting for a bilateral mastectomy. This latest turn of events motivated me to write to her and ask for some of her thoughts. She replied:

So sorry you are going through all of this. So the first time I had lumpectomy, radiation and chemo. The second time I had extensive DCIS and Pagets, which is in the nipple. I opted for the double mastectomy because they said the odds of developing it in the other breast was very high.  Like you, the DCIS did not show up on the scans. After the mastectomy they found significant changes in the non-affected breast that wasn't cancer, but what they call pre-cancer. Apparently it almost always develops into cancer eventually. 

So, for me, I'm really glad I chose the double mastectomy. [The] emotional trauma associated with cancer also influenced my decision last time. Really didn't want to go through it again in the future. Also radiation causes permanent issues, so I'd avoid that if you can. The reconstruction isn't perfect, but I can totally live with it. Big decision either way. Please let me know what you decide and how you are doing. Try to relax and enjoy your vacation.

In the interest of educating myself, I asked her what issues she had with radiation, and was somewhat horrified by her response. Just like with lumpectomy and mastectomy, it seems like the serious side effects of radiation are often not given enough attention. She replied:

Radiation causes permanent changes to your tissues.  Lots of scar tissue, decreases blood flow to the area, etc. I've been in and out of PT for years dealing with range of motion issues in my arm and scar tissue from the radiation messing up movement in my ribs and neck. The big thing though, is once you've had radiation, you're not a candidate for traditional reconstruction in the future should you need it. That's why they took muscle, fat and blood vessels from my abdomen to create a new breast. My circulation to the area was shot and the tissue too damaged to handle an implant.  I'm just telling you because I had no idea that radiation can create long term issues, and I wish someone had informed me. I'm not going to lie, the mastectomy wasn't fun, but it would have been much easier without the whole abdominal reconstruction surgery at the same time.

Not a lot of gray in that opinion.

Opinion #2

Knowing that I was meeting with a radiation oncologist this morning, I was actually super stressed about how negative I was feeling about radiation, and went to the appointment armed with a bunch of questions: Will there be long-term effects to my tissues? Possible damage to my lungs and heart? WHAT IF I do need reconstruction sometime in the future? How much has radiation improved in the past 10-15 years?

For the four hours that I slept, I had nightmares about radiation therapy, until our smoke alarm went off around 4 AM for no apparent reason. I couldn't go back to sleep after that, so I was feeling very groggy and shell-shocked at my 8 AM appointment.

Of course, the appointment started off with an informational video about how safe and effective radiation therapy is, and was full of a bunch of smiling people and really good-looking MDs, techs, and physicists. LOL. Then we met with Dr. J, the radiation oncologist, and I immediately liked her. She had come highly recommended from radiation oncologists at University Hospital, as well as from a colleague who had breast cancer about 10 years ago, and as with Dr. L, I was not disappointed.

She started off going through my history with me at length, then did a physical exam. And then... I put my clothes back on, and she came back into the room with a heated blanket for me, because I was freezing during the physical exam. We had a frank discussion. Looking back, when she started the discussion, I should have known it wasn't good. But at the time I was all lah-dee-dah, I love this woman happy.

Then she told me that she could not in all honesty recommend anything but a mastectomy for me at this point. She was very matter-of-fact about it, but also very compassionate. She said this was a surprising result; there was not any reason to question my choice to have a lumpectomy in the first place, and not even any reason to even think the re-excision wouldn't be successful. It is just one of those unlucky things. All signs pointed toward the direction I had chosen being a good choice, but unfortunately it didn't turn out that way.

I asked her what she thought about the possibility of the 'benign-appearing' calcifications in my right breast being DCIS, and she said that there was no real reason to think they were. She understood my thinking, but said those were thoughts based on fear and emotion, and there was nothing with a medical or scientific basis that should lead me to think that. She said that she was personally not a supporter of doing mastectomies on healthy breasts, and knew that Dr. L wasn't, either; in fact, they both agreed that too many mastectomies were performed these days. Yet she made it clear that was her recommendation for me. Not a bilateral mastectomy, but a mastectomy on my left breast.

She wouldn't even talk about radiation therapy with me, since I would most likely not need radiation with a mastectomy.

Not a lot of gray in that opinion.

It's too bad, because I really liked her.

Opinion #3

After my appointment, I raced up to work for an interview, then headed off to my appointment with Dr. M. I was surprised at how broad-based Dr. J's knowledge was, and was pleasantly surprised by her ability to talk with me in-depth about so many non-radiation-oncology related aspects of my cancer. I mean, duh, she is an MD, of course, but I've met physical therapists who only deal with hands who can't even give you insight into, like, shoulder pain. And my orthopedist refused to even try to talk to me about the side effects of Xarelto I was experiencing. My goal was to head off on vacation with advice from a medical professional to help me form rational thoughts, and Dr. J satisfied this need. I wasn't quite sure if I really needed to see Dr. M, but I kept the appointment since they had been so great to work me in, and I figured another opinion wouldn't be bad.

Dr. M was wonderful; we really click. I feel like he really 'gets' me, and that we are a lot alike in that he is very intense, but yet somehow very easy to talk to. I am quite an intense, Type A person, but I think I'm pretty easy to talk to, especially if I'm with another person who is easy to talk to. I told him I just really wanted to talk to someone before I headed off for vacation, so I could start to form a rational plan. He said it was unfortunate that Dr. L was on vacation, then attempted to call her on his cell phone on my behalf. LOL. When it went straight to voice mail, he declared in a frustrated voice, 'She's not answering! I don't know if she is out of the country or what!' It was sort of cute, actually. I assured him that I understood. As much as I really wish I could talk to her, I get it. I mean, REALLY. I get it.

Dr. M started off being somewhat wishy-washy, going on about how this was a big decision, very personal, blah blah blah. Finally I asked him point blank what he would do if he were a woman. LOL. He said he could not pretend to be a woman, but... If it were my wife... I would tell her to have a mastectomy. No question. Absolutely no question. But then he said that was a personal opinion, not a medical or scientific one; since I had asked him a Very Personal Question, he thought it was fair to give me a Very Personal Answer. He was actually fairly emotional when he said this, to the point that I was worried I had crossed a forbidden line between doctor and patient. Then he said that as an Ashkenazi Jew, and someone who lived and breathed cancer every day, he had a certain paranoia about cancer that I might not have. He then added that he thought it was important for me to understand how his background might differ from my own (do I not look like an Ashkenazi Jew?!) in weighing how much his Very Personal Opinion meant to me and my own Very Personal Situation, which I appreciated. I don't ask medical professionals for their opinions lightly. Honestly, I don't even ask friends or colleagues for their opinions lightly, especially not when it's something like cancer. If we are talking about the best place to get a hair cut, yeah, whatever. But if I'm asking you for your thoughts on radiation oncologists or chemotherapy or mastectomies, it's because I respect you a great deal. All in all, it was a very philosophical conversation, which brings me full circle to what I was saying earlier. This guy gets me.

He did agree with Dr. J, though; he saw no need for a bilateral mastectomy, unless I was concerned about the cosmetic outcome. He also said that as you age, your real breast changes, whereas your fake one does not, so some women like to have them match up right away, and especially while they are young and insurance will pay for it. He said some women find such differences in their breasts as time goes on that they opt for surgery on the natural breast to try to match the fake breast, which can be difficult. Then he added, 'I hope you don't think I'm being superficial talking about cosmetic outcomes; I understand that it is important.' He went on to say that as a man, sometimes women didn't understand that he understood, and that as a man, maybe he couldn't ever fully understand the importance of breasts, but hoped that I understood that he really did understand, or was at least trying. Or something like that. LOL.

In the end, there was not a lot of gray in his opinion, even if it was a Very Personal Opinion.

Then he apologized and said he really needed to keep moving, and since he had already spent 25 minutes with me for a 15 minute appointment, I felt bad. However, he walked me out to the front, assuring me that whatever hormonal treatments he would be in charge of for me 'will be nothing compared to what you are going through right now.'

So now I have three strong opinions, none of which point me toward the path I was hoping for, nor expecting a few days ago. Nonetheless, there is comfort in strong opinions. I at least have clarity on what is likely the best and most logical route, so now I just need to work toward accepting it.