Blew the entire darned morning at the Mayo today, talking with a new radiation oncologist. I must say, she was very impressive — almost as impressive as WonderSurgeon.
She said it was within the realm of possibility to treat the boob with radiation and aromatase inhibitors. However, said she: “If it were me, I’d choose a mastectomy.”
Once again the decision is up to me. And the truth is, I’d just as soon have it off. Apparently WonderSurgeon has the idea that I’d prefer to keep the boob come what may. That’s not at all true.
I’ve been ambivalent to the ultimate degree of ambivalence. On the one hand, I would very much like NOT to have any more surgery. I do not want reconstruction because that looks like an invitation to more complications and more surgery; if we’re going to do this, I’d like to keep it as simple as possible and just effin’ get it over with. On the other, if mastectomy is not really necessary, naturally I’d just as soon keep my body intact. Especially now that WonderSurgeon magically restored the diseased boob to its former splendor…or even better.
And, as our venerable reader George likes to say, “on the other paw…” I’d just as soon do without radiation therapy and five years on a drug with potentially baleful side effects.
The choices are these:
a) leave the boob on, subject yourself to a course of radiation whose worst side effects will start to surface nine years from now and can continue to arise over the next thirty years, plus five years on an unpleasant drug, and still run the risk of invasive cancer; or
b) remove the boob, reduce the risk of invasive cancer to something under 1 percent, and moot the dangerous therapies.
I mean, really: which of these makes sense?
Yup…the answer is behind Door B.
Asked her about the potential side effects of the radiation treatment she proposed…
Bone damage? Not so much with modern treatments: an occasional fractured rib
Soft-tissue cancers? Definitely a potential
Lung cancer? Probably not; again, much less probability with newer technology
Lung damage? Scarring in a small part of a lower lobe. This can lead to pneumonitis, which is usually minor but can become life-threatening. It is treated with massive doses of Prednisone.
Lymphedema? Low risk
Fibrosis? Low risk
Hypothyroidism? Didn’t get a comment
Brachial plexopathy? Not so much
Leukemia or myelodysplastic syndrome? Very low incidence
Translations: any of these things is a possibility, although most of them pose fairly low risk.
Pneumonitis and new cancers are probably the most likely of the unpleasant side effects. I’ve had prednisone, in very low doses…and I do NOT want any more of it, thank you. Its aftereffects appear weeks or months after you’ve taken it, and they’re very unpleasant, indeed. I wouldn’t take it unless I were at risk of dying, and I wouldn’t put myself at that risk for the sake of keeping a boob hanging on my chest.
And one “not-a-cancer” has been quite traumatic enough, thank you. Don’t think I need to enjoy a real cancer sometime — anytime — in the future.
This has been going since last June! My life has been turned upside down; everything I’d planned to do business-wise and personally has been disrupted, it’s drained my checking account, the whole thing has me teetering on the edge of stark-raving-CRAZY, and I WANT IT TO STOP!
If chopping off the boob will make is stop, by all means let’s get on with it at the earliest possible moment.
For the nonce, though, I have to get back to work.
Later! 🙂
Glad you like the new doctor. Best wishes for making the best decision for you!
I have no good advice or counsel for you, I have friends who have had breast cancer and some opted for radiation and some for mastectomy. They all appear to be comfortable with the choice they made and they, like you, thought about the treatments beforehand. I do not know if they researched at your intensity, but it seems to me that you have researched and have a definite feeling regarding radiation with a less adverse feeling toward mastectomy. The one thing I seem to recall is that many of those who had a mastectomy did end up with lymphedema – some people I’ve met have a [to me] serious issue with lympedema and that also never goes away.
Anyway, my best wishes for you now and into the future.
Lymphedema is definitely a risk. They may have had more radical mastectomies than is proposed here.
If they had invasive cancer, then they would have had lymph nodes removed. That absolutely can lead to lymphedema, although it’s not a 100% thing.
I have no invasive cancer — we’re still talking about limited DCIS that has not morphed into cancer yet. It might…and it might not. Having been disturbed the way it has, it’s a lot more likely to do so. If it recurs, there’ll be a 50-50 chance it will recur as invasive cancer. And that is a whole nother critter.
In the absence of invasive cancer (yet), they will not be pulling lymph nodes out of my arm. I still COULD suffer lymphedema, but the chances are lower.
Any way you look at this, NONE of the options are very good. I don’t want lung complications. I don’t want any of the complications of Tamoxifen, which include blood clots, stroke, and uterine cancer. I don’t want lymphedema. I don’t want my boob chopped off. I don’t want a fake implant stuffed under the muscles in my chest. I don’t want a new cancer stimulated by radiation treatment. I don’t want leukemia.
It appears you have to figure out what is the most conservative treatment that will keep you alive and then, if there’s more than one of them, decide which set of side effects seems less dreadful. In any event, there’s a very good chance your health will be affected for the rest of your life.
There’s also a good chance you’ll be just fine, if and when you ever recover.
No matter how you look at it – this sucks.
I did find this site and it suggests that perhaps you could forgo further surgery and radiation and go with active surveillance. I have had several skin cancers removed, one involving Moh’s surgery and so I have decided on a six month exam schedule, I guess I prefer active surveillance LOL.
Here is the address
http://www.breastcancerdeadline2020.org/breast-cancer-information/specific-issues-in-breast-cancer/dcis/
You may have already seen this, but I thought I’d send it just in case.
Again, best wishes.
Thanks!
I’ve seen this site…don’t know I’ve seen that specific page but have seen others like them. The problem, clearly, is that we’re throwing a lot of standard cancer treatment — surgery, radiation, drugs with dire side effects — at a phenomenon that we don’t know much about.
Yes. DCIS can recur. No. Not all DCIS recurs. No. Not all DCIS turns into cancer. Yes. It’s possible that most DCIS goes unobserved because it never turns into anything life-threatening. Yes. Half of DCIS recurrences after surgery come back as invasive cancer. Yes. It’s better to chop off the boob now than to have an invasive cancer later.
We don’t know which types of DCIS will recur and which will not, nor do we know why. Some think a wider margin of healthy flesh excised around the DCIS means a lower chance of return; some do not. It’s largely a matter of opinion and experience.
In my case, the growth is apparently quite large. It is not visible on a mammogram, nor can it be felt by touch. Except for the two tiny, tiny spots seen on the most recent mammogram, the rest of the tumor is visible only under a microscope. That means the only way the surgeon and the pathologist can know whether she (surgeon) tissue is diseased is to cut it out and look at it under a microscope.
At this point, the Mayo docs are calling the margins “technically” negative: no ink on tumor. But they are very uncomfortable about calling this a safe margin: they do not buy into the 2014 SSO/ASTRO guidelines. They believe a safe margin is 1 to 2 mm of healthy flesh around the entire outside of the tumor. And they do not know whether what they’ve removed is all that’s in there, or whether there’s more.
If there is more, it will continue to grow. It probably will remain invisible to mammography and to physical palpation. There’s a chance it will convert to invasive cancer. Invasive cancer is more difficult to treat and indeed can end in the victim’s death.
I’ve been given the option of radiation treatment + hormone therapy, or of mastectomy.
The more I look at the potential side effects of radiation, which can occur more than THIRTY YEARS after the treatment ends, the less I like it. Even if only one of those eventualities occurs — pneumonitis seems to be the most likely — I don’t want to have to deal with ANY of them. The last time I took prednisone it was a small dose administered over three days; it made me very sick. It gave me such a case of GERD that a Mayo doctor speculated I had a gastric cancer and wanted to put me through the tortures of the damned to confirm or de-confirm that theory. Sorry…NOT interested in going through that again! And I’m certainly not interested in any of the other rather grim possibilities.
A mastectomy means no radiation and it may mean no hormone treatment. Tamoxifen has some very dangerous side effects, not the least of which are uterine cancer, stroke, and deep-vein thrombosis. None of these are things I wish to live through. Aromatase inhibitors have fewer life-threatening side effects, but they do have the potential to make you damned miserable: joint and muscle pain resembling repetitive stress syndrome. I’ve had RSS and don’t want to revisit that, either. And my back hurts constantly, sometimes to the point where I can barely walk…the LAST thing I need is MORE joint pain!!!
So, yeah: it sucks. It sucks all the way around. It especially sucks when you realize there’s a good chance all of this was unnecessary in the first place.