It’s a Tuesday.
I promised an update about the surgeon’s visit days ago. Sorry for the delay. I just have not felt like blogging or much of anything. I’m not really a very happy person to be around these days, but that doesn’t have anything in particular to do with the surgeon’s visit.
So, I saw the surgeon Thursday. He is recommending a mastectomy. I wasn’t surprised. I had figured out two or three months ago this was likely. After I had time to heal from the lumpectomy, I could tell that a re-excision plus radiation would be so damaging that I wouldn’t have much breast left. And with a D-cup on the other side, I’d be looking pretty freaky (even fully clothed) with nearly nothing on the right side. Plus, after radiation, no plastic surgeon wants to touch that tissue because radiated tissue doesn’t handle surgery well.
That means a mastectomy is the best choice. With reconstruction, I’ll end up with a useless lump that has no feeling in it sticking off my chest, but with any luck, it will be close to the size of my real one and will look reasonable to 99 percent of my viewing public.
If you want to see some photos of what reconstruction looks like, here are some sites. I don’t know any of these doctors. These are just photo links that have been shared with me in the past. Also, I have to say, a couple of these women end up with better breasts afterwards because they start from …. shall we say … a less common-looking bosom. Me? Totally ordinary (even nice, some may say), though on the large side.
Dr. Matthew Concannon: http://www.surgery.missouri.edu/mc/latpats.html
Dr. Alex Keller: http://www.breastflap.com/breast_reconstruction_photos.htm
Microsurgical Breast Reconstruction: http://www.diepflap.com/br_treatmentoptions.html
I don’t know what type of reconstruction procedure I will or have. Don’t know when, either.
The real fun at the surgeon’s visit came when he said, “I don’t think you should go to Rome.” I’m not sure if Dr. Schmidt knew how close to death he was that day.
He felt the trip to Rome was too soon after chemotherapy and the surgery. I argued that my onocologist had already OK’d my trip, so the surgeon agreed that whether it was too soon after chemo was really not his call to make. Furthermore, I should have surgery 3-4 weeks after chemo; which would put the trip at 5-6 weeks after the surgery. Until now, everyone I had consulted felt this was plenty of time, as long as I took it relatively easy. Of course, this was the first time I was consulting a surgeon.
After much arguing with the man, and a resolve in my mind that I was going no matter what he said, he offered me this option: First, get a mammogram and MRI. Then, if they show no visible disease, then we’ll assume the chemo took care of microscopic disease and schedule the surgery for after my trip. If the tests show disease, then we’ll do surgery soon and the trip is off. Well, he said “then the trip is off.” I only nodded my head. I had my fingers crossed behind my back.
Then, I came home and proceeded to call my oncologist’s office twice and poll a couple hundred women I’ve met online about whether a trip to Rome 5-6 weeks after a mastectomy (and maybe reconstruction) is a bad idea. The results are this: Nurse Vivian said nearly everyone goes back to work 4-6 weeks following a mastectomy, if not sooner. They think I should go to Rome, but just take it reasonably easy. The women I polled online had mixed opinions about what I should do, but the overwhelming response was to go for it. In fact, several of them cited trips they went on following a mastectomy. One woman told me she just spent two weeks in “the hottest DisneyWorld ever” with two children in tow just three weeks after a double mastectomy and reconstruction.
I’m thinking that, barring any complications or surprise infections, that the original advice I received to go and have fun is still in force. However, I don’t think my surgeon is going to schedule the surgery for the end of August like I want. I called today and the surgeon’s nurse said, “let’s wait and see what the tests show.” The thing is, unless I’m in a very tiny group of people whose cancer grows on chemo, the tests are going to show nothing. That means he won’t schedule the surgery until October, which freaks me out.
I want this to be OVER.
So, then, I called and left yet another message for my oncology nurse today asking her what the recommendations are on time between the end of chemo and the surgery. Also, were there any studies on the topic? This is a big question for me – we’ve done the most aggressive chemo possible because I have an aggressive cancer; I’d hate to screw that up now. Chemo kills the microscopic cells, which are the ones that won’t show up on the tests and are the ones we know I had left after the lumpectomy. They are the buggers causing all the problems. (My surgeon even asked if it was an option for me to have another round of chemo to reduce the time between chemo and surgery, if we scheduled surgery after the trip. My oncology nurse said that would be a huge thumbs down because of all the horrible side effects I’ve had.)
She leaves me a voice mail saying, “Rosie, I can’t answer that question for you. We try to get people in 3-4 weeks after the end of chemo or as close to that as possible, so we deal with things as quickly as possible. As far as reading or studies, I really can’t answer that question. This isn’t something that comes up very often.”
I need to say that again.
If I don’t do the surgery in 3-4 weeks, am I in scary territory? Don’t know. Will the cancer regrow? Don’t know. Should I go to Rome? One says yes; one says no.
Have I mentioned that I hate cancer?
After some online research tonight, I’ve come to this (still unsettling) conclusion:
The doctors are assuming that the chemo killed everything microscopic in me. Unless those tests have something surprising on them, that’s what they are going to assume until something happens to make them question it – like a mets recurrence in my brain or liver or bones.
Which led me to wonder, if all the microscopic stuff is dead, why am I having any more surgery at all? The answer I found that seems to answer this question is that women who have neoadjuvant chemotheraphy (that is, chemotheraphy before surgery, which is done with the intention of shrinking a tumor in the hopes of having only a lumpectomy) and then have a lumpectomy, have a much higher rate of recurrence than women who have neoadjuvant chemo and a mastectomy. Women who have a lumpectomy first, then chemo have results nearly identical to those of mastectomies (before or after chemo; doesn’t matter) because it is appears that those woman have more clearly defined tumors and there is a greater level of assurance of clean margins (remember, the previous group was trying to shrink and ugly tumor).
To summarize: if you are pretty sure the cancer is all cut out (before or after chemo), it gives you your best odds to dodge a recurrence. (And by “recurrence” we are talking about metastasis.)
Me, I had a lumpectomy first, with margins that weren’t clear, then chemo, then will be having a mastectomy. After reading this, I doubt it matters a whole hell of a lot when the mastectomy is, as long as it happens sooner or later. Of course, there is no way of knowing, since we can’t see the freaking problematic cells in question and we have no way of testing for them.
I have met young women online who are diagnosed with mets weeks, months and years after their initial diagnosis – with the initial diagnosis at any stage or grade. One of these women had a 1.7 centimeter (smaller than mine) tumor just diagnosed in the last 4 or 5 weeks. Yesterday, she found out she has mets to the liver.
This disease is really unfair and relatively indiscriminate.
My point is, if I’m going to get mets, I’ll bet those cells are already implanted where they are going to grow, just lying in wait for their opportunity. I can’t imagine that a few extra weeks after chemo is going to make a difference either way. The cells are either all dead or they aren’t. If they aren’t, then there is a teeny possibility that one is in my breast and in the weeks between chemo and surgery, it will break free, float through my blood stream and implant itself somewhere else. Then, I’ll have the breast removed, feel like I beat the bastard, and then a few years down the road, get a recurrence wherever that dumb-ass cell planted itself. But I will never know if it was the few weeks I waited or if it was from a cell released during all of those years the cancer grew silently and unchecked, when there were millions upon millions of cancer cells in my body, instead of just a potential few chemo survivors.
I’m going on the trip and you can’t stop me.
And if you try …
* by email, I will delete you.
* by phone, I will hang up.
* in person, I will slap you and walk away, but not before I spit on you and kick your shins for good measure.
You have been warned.