I saw my radiation oncologist for the first time on Friday to discuss my post-chemo radiation treatments: preparation, duration, side effects, and all that jazz. I was anticipating a short meeting, since I felt like I knew what radiation entailed and I didn't really have many questions. But what I hadn't planned was that my new doctor, (Dr. Evans, a South African with a lively wit and a fun accent) would be unhappy with the results of my two surgeries and would quiz me rigorously about them.
Some of you might recall that after my re-excision, I still had one "close" margin (the cushion of normal breast tissue around the cancer cells) of 1.2 mm. This apparently places me in a scientific gray area, where the doctors aren't sure how my chances of local recurrence in the long term might be affected. The literature is clear that >2 mm is ideal, and <1 mm is considered unacceptably high-risk for recurrence, but I am sitting in the tiny, uneasy middle between 1 and 2 mm, and there is not yet a clear consensus between hospitals, or even between doctors, on what to do - go back and try to get more tissue for a better margin or utilize additional radiation sessions to compensate for the smaller margin?
Interestingly, my hospital protocol requires a 2 mm margin on DCIS (ductal carcinoma in situ, or non-invasive cancer) but only 1 mm for invasive breast cancer. But about half of my tumor was, in fact, DCIS. For this reason - and because, as he said, why wouldn't I want to give myself the very best possible outcome? - Dr. Evans would like to send me back under the knife. (Oh, by the way, my surgeon Dr Tartter was just listed again by New York Magazine as one of the best surgeons in the city.) The catch might be that I have no tissue left to take. The area of concern was at the very back of the tumor, against my chest wall, and Dr. Tartter's PA thinks that he already "shaved the remaining breast tissue from the chest muscle." Ew! In that case, a third surgery would be of no benefit. They don't excise non-diseased muscle, and a mastectomy would also not confer additional benefit. My hospital is aggressively in the "breast conservation" camp anyway, and all my doctors have agreed that my case does not require a more radical surgery.
I'll leave that bit to my doctors to hash out - just tell me when to show up! But what if surgery is not an option? The extra radiation treatments will make up for it, right? Well, um, they don't really know that either. The standard recommended treatment for me would be 33 doses - 24 to the whole breast and 9 "boost doses" to the area of excision. But Dr. Evans could bump it up a bit on my chest wall to try to give me some extra protection. How many extra cycles? "Three, four, five - whatever it takes." But you just said that you don't even know if the extra radiation actually compensates for a smaller margin, so how do you know what it takes? Hmm...are we flying blind here? To help matters not at all, The New York Times just published an article today about how medical scans are now the leading cause of radiation exposure, which is known to increase the risk of developing cancer. In my case, the probable benefits definitely outweigh the possible risks, but well, I'm counting my scans!
The upshot of this is that, again, this irksome disease has interfered with our plans! We had decided to go to Higgins Lake in August after all, to take advantage of the four week break between chemo and radiation (actually, yet another gray area: less than three weeks is not recommended, and more than six is known to be detrimental, but the ideal point of commencement is indefinitive - isn't cancer fun?), but now are holding off on finalizing those plans until we know for certain about the surgery. Cross your fingers for us because I could really go for a nice meatball dinner and some recreational waterskiing right about now. Not only that, but it is frustrating to think that you're at the third stage of treatment, only to find out that you may have to go back to stage one. I mean, couldn't these doctors have discussed the situation a little sooner? That I know how skilled they all are only makes it worse, in a way. I can't imagine what people who receive substandard care go through.
Radiation, whenever it begins and however long it lasts, will be every day, but the treatment itself takes only a few minutes. Just a quick zap and you're done for the day. I'm having the external kind, where they shoot the stuff at you, not the internal kind, where they actually put a smidge of radioactive hoohah inside the breast. Before the first session, I'll be going in to have a cast taken of my breast, and then they're going to tattoo little guidemarks on my chest to help position the machine, called a "linear accelerator." (From breastcancer.org: "The linear accelerator creates high-energy radiation to treat cancers, using electricity to form a stream of fast-moving subatomic particles." Exciting!) The side effects will include fatigue (probably not a bad as the chemo, though) and possible localized reactions that can vary from mild redness and irritation to severe sunburn-type symptoms like peeling and blistering sores. Ew again! These are not necessarily related to skin tone, so maybe the redhead will get off easy this time around. I guess there are tips about certain medicated creams, bra-wearing, deodorant, and so on that the nurse will instruct me on when I go in for the tats. Ooh, my first tattoos! On the plus side, apparently radiation will tighten up my skin a bit so that I'll look firmer and perkier on that side. Maybe I should have both sides done! Additionally, there are small risks to my lungs and heart, my ribs will be a tiny bit weaker on the left side (Dr. Evans: "What you do with that information I'm not sure. Maybe if you get in a car accident, try to turn your body the other way."), and as I mentioned above, a risk of "secondary malignancy," or cancer caused by the radiation. The risk is compounded by the fact that I'm young and potentially have a longer life span to develop a new cancer. But that's another bridge.
Dreaming of those Michigan cherries...
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6 comments:
Corinna and I have been using the natural crystal deodorant for awhile.. I've been using it for a few years, and she started using it a few months ago... It works really well at preventing odor, but it doesn't really do anything for sweating... But it is a big alum salt crystal (we use the crystal, not the roll-on liquid) and nothing else, so if you are going to be sensitive to certain chemicals in deodorant, you might want to ask about it...
Of course, EVERYTHING is a chemical, even natural crystals, so it might be just as problematic as manufactured products..
-sean
Hi Sara,
You don't know me, but my name is Emily and I've been following your blog. I'm 35 and in April of this year was diagnosed with DCIS, but mine has spread to my lungs and bones. My tumors are ER/PR +, so I will be going on hormone therapy, soon I hope. They want to biopsy my hip to make sure the tumors are the same as in my breast. They want to do a biopsy of my hip because they think they can get a sample easier from my hip than from my lungs.
My husband and I were going through fertility treatments to try to have a child, but it's the consensus that the fertility meds may have exacerbated the cancer. How ironic.
You have put what I'm feeling into such beautiful words, you have such a talent for writing!
I tried to get in to Sloan-Kettering, but they had an enormous waiting list. I'm being seen at Dana-Farber in Boston.
Anyways, I just wanted to thank you for being so open with what's going on in your life.
I love the wig and your children are beautiful!
Just know that you are not alone in this fight.
whew, girl - I can't wait until you're through all this! what a pain, physically and metaphorically.
I second Sean's recommendation for the crystal deodorant - I've been using it for about five years and love it. It's true it doesn't help with sweat, but ironically I find that I sweat less I did when I was using antiperspirant. what's up with that?
Maybe one of your michigan crew could cool-pack some cherries and ship them to you overnight. Actually, we're going there for a couple days on friday to help my mom with her yard - do you want me to send you some?
Sara,
I found your blog through bc.org. I, too, had an "unclear" margin close to the chest wall. My rads onc talked with my breast surgeon and she convinced him that she had gone down as far as possible. My rads onc agreed to take me on as a patient, but has cautioned that my recurrence rate might be higher because of the margin. And, I'm getting 36 zaps (25 regular and 11 boosts). Nice to know that I'm not the only one in this grey zone!
Michigan Cherries aren't much this year..cold and hail really did a number on them.
Hello Sara,
Found your blog today. I like you style...
My radiation treatment finished on 22 March 2007 (super happy day!).
Had 25 regular zaps, and 5 boosters (loved the boosters because you don't have to be lined up). 6 weeks all up.
Would go in at 11-am Mon - Fri. The longest bit was having the nurses line you up (via your tats) on the table. 15 counts for one angle, 15 counts for the other angle - and that's it your outta there and its time for lunch.
Over 3 months now and it feels like it was a lifetime ago.
The only reminder is my nicely (now) browned right boob - which looks like went on an exotic holiday without me.
My skin on the treated area feels smoother than ever - my surgeon said it would feel like a major exfoliation treatment and he was right - always good in having a smart surgeon.
As for the deodorant what to-do's - I used what I normally use - the treatment line wasn't actually in my armpit but just below - just above where they cut to remove the nodes. You will see the line very clearly after about 2 weeks into treatment.
Yes your boob will feel like it is getting sunburnt - that is the best way to explain it. I bought an aloe vera plant and when it felt extra crispy I would put some of the aloe on it - that felt great.
Once the treatment stops your boob will feel very warm - again like a sunburn - wearing a V-neck might freak people out a bit - due to one side being dark and one side being light - but have no fear - it fades. I use to tell people that I had an accident with an iron if they looked puzzled.
Getting me through the everyday of it was helped by going to the gym which helped to clear my mind.
My rad onc said I might feel tired and nauseous - I did after the 3rd treatment - but then I said to myself - am I feeling this because he said it might happen? - or am I feeling this because this is happening? From that day on I decided that I would have no side effects, and you know what I didn't.
The mind is very powerful tool we all have - use it well, and start planning your last day of radiation celebration party - it will be in past before you know it.
Good Luck and have an excellent summer!
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