Because radiotherapy is not typically given to women who’ve had DCIS and a mastectomy, I suspected the radiologist may struggle to make a recommendation on the spot. That’s why the week before my consultation, I emailed her a two paragraph summary of what I was hoping to discover during our consult, namely what are the pros and cons of radiotherapy in my case.
“Your doctors must love that you’re so proactive!” remarked a friend, kindly. My suspicion is they’re in despair that someone with a diagnosis and a computer can access studies and forums and within weeks can gain a little knowledge (= a dangerous thing) whereas they had to go to medical school for years and years to gain their expert status.
I went to the consult armed with my research (!!) which shows although general recurrence rates are quoted at 1-2% for DCIS mastectomy patients, there are a number of factors that raise my risk the cancer will return to about 15%, notably that cancer was found so close to the edge of the extracted tissue, less than 0.02mm away. In the ‘throw the book’ vein, I want to access radiotherapy to hopefully destroy any cancer cells that might be lingering inside me.
I worry that by seeking this, I’m being an overtreating nutter. And because I’ve not met an expert who thinks extra treatment is justified, no doubt that’s what they think too.
To her credit, the radiologist had done a bit of homework and printed out a study (that I’d already read) whose conclusions were inconclusive. And that was the tone of the whole consult. That and slight disdain. I knew I was in trouble when she said “You didn’t really have cancer” (*sigh*) and she couldn’t hide her incomprehension as to why I’d had the prophylactic mastectomy. “It’s a very personal decision.” she conceded.
Anyway I was all ready for a robust debate but instead met a wishy washy “There aren’t the studies to prove it’s worthwhile.” To which Ted, who’s not at all convinced the radiotherapy is the right thing for me to do, gave a swift, Twelve Angry Men- style response which included the phrase “But that also means you can’t prove it’s not worthwhile.” and lots of other supportive commentary I gamely nodded through but now can’t remember.
In the end, she took the case to a panel review of a dozen other radiologists and fed back “The consensus is there’s no reason you shouldn’t have the treatment.” which is both vague and reassuring. Vaguely reassuring.
But radiotherapy is no picnic. Here’s a summary of worst case scenarios:
- Scenario 1: I have radiotherapy and feel more relaxed about a recurrence because my risk will reduced by about half to two thirds. But radiated skin is damaged inside and out, so is very hard for cosmetic surgeons to work with. Here are ways the implant could go pear shaped: it’s cosmetically not acceptable (skin can seize around the implant pushing it higher than your other fake book, or ‘foob’), your implant can burst through the skin (I read one woman’s story on a forum where she described this happening whilst at Disneyland, this made me laugh a lot), the scars inside and out can get all gnarly which can lead to chronic pain. This most common complication is called ‘capsular contracture’ and can range in severity from mild to unbearable. Nothing will necessarily occur immediately but is likely to sometime over the ‘life of the implant’ = the rest of my life. My surgeon said there’s a 9/10 chance further surgery would be required to upend pear at some point.*
- Scenario 2: I do nothing, short term all will be cruisy physically but I’ll find this mentally tough. The implant will go in, I’ll move on but will definitely have a doubt that I should have had the extra treatment. If it’s my fate to be in the 15%, sometime over the next five years, a routine check up discovers a lump, or I find it myself in between check ups. There’s a 50% chance this is more DCIS (non invasive) in the remaining breast tissue. There’s a 50% chance it’s invasive. Treatment will be surgery to remove the lump, followed by radiotherapy then chemo if necessary. Back on cancer roller coaster.
- Scenario 3: Worst worst case – do radiotherapy and cancer comes back. I can’t have radiotherapy again and will have to go straight to big, big guns of chemo (gulp). That is the principle reason JP is opposed to my getting the treatment now. But to my mind it’s currently treatable. Leave it to chance, and who knows?
* another alternative in this event, which I find intriguing, is to become a ‘flattie’ and remove the implant altogether. Some flatties get a massive tattoo done across the area….hmmm.
I shared these with Sue who summed up the last point very succinctly:
There’s a murderer coming towards you, and you have a hammer, you could use the hammer to shatter the leg of the murderer which will likely incapacitate him. Isn’t that better than worrying that he may be able to crawl towards you so better to save the hammer to try and whack him on the head when his hands are round your throat?
I agree. I think. But it’s very hard. And I am very over all this.
Anyone out there got a crystal ball?