Long-term survival of DCIS patients without radiation or hormone therapy
I'm interested in hearing from people who did not have radiation or hormone therapy after a lumpectomy for DCIS
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Thanks for posting, and welcome @judith40 ♥️
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Hello Judith - survival statistics are dependent on a number of factors such as patient age at time of diagnosis hormone profile and grade of DCIS. I would ask your doctors to provide this information - what is risk of recurrence and what is overall survival with and without radiation and hormone therapy.
I was 63 when diagnosed so I had 5 accelerated partial breast radiation treatments after my lumpectomy for stage 1 invasive ductal cancer per my RO’s recommendation. My surgeon said she would have considered skipping radiation based on my age and stage 1 diagnosis.Having run the Predict UK breast calculator (not valid for DCIS only), it appears that neither radiation nor hormone therapy offers much benefit in my case. I’m now 67 and have not had a mammogram in over 3 years - mostly because my care was so poorly handled when I was diagnosed and partly because I think BC is over diagnosed and over treated.
You need to make a decision based on what is best for you. Your doctors should be able to provide you with additional information.If you are older, you may find an article here on BCO titled “Many older women can skip radiation after lumpectomy” to be helpful. Unfortunately I am unable to link it for you however, you should be able to find it using the search bar.
Best of luck with your treatment.2 -
Thank you for your response. Because of osteoporosis I do not want to use hormone therapy. I just received a second radiologist opinion. Both radiologists recommended radiation but now I have three estimates of risk of recurrence: 18%, 15%, 11%(15 min with surgeon). I need to decide very soon since I am now 8 weeks from my lumpectomy. Because I'm 84 I'm only faced with, at most unlikely, 15 years. Now stories of lung, and some rib damage, are causing my hesitation. Again, thank you for your message.
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I think the hard part is that many people with DCIS don't stay around particularly if they aren't in active treatment. So the succcess stories you are looking for are of course out there just not on here to a great extend. Most professionals will agree that DCIS is over treated. That many don't need radiation might not have even needed surgery but for many the idea of wait and see is very hard and we just want it out. Again I know this isn't the information you were looking for but just because you aren't getting tons of responses from people who made the choice not to do radiation after a lumpectomy doesn't mean they don't exist just that they don't hang out on the boards any more. Wishing you peace with your decision. It would be one thing if radiation is a guarantee but it's not so you just need to make the choice that is best for you with your overall health considered
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Hi Judith - I'm not here very often but do pop in every couple of years. By now you probably have made your decision as to whether or not to proceed with radiation. I just wanted to say that I was diagnosed with a small area of medium grade DCIS with very good margins 20 years ago at the age of 49 and had no radiation or hormone therapy. So far, so good, no recurrences though I did have an area of calcifications in the opposite breast which needed to be biopsied. That turned out negative. I was given the usual choices and told it was up to me. It was a difficult time and I had a hard time making a decision. I got several opinions and finally decided on no further treatment and close follow up. It all depends on the size and grade of the DCIS and the size of the margins. If your still reading your thread I'd be interested in knowing what you decided.
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My BFF had multifocal Grade 3 triple-neg DCIS in 2016—just surgery (a BMX w/o reconstruction). Obviously no hormone therapy, but also no rads. She'd still be with us had she not had severe cardiovascular disease (from obesity & T2DM)—necessitating two stents and finally a double coronary bypass, which resulted in a massive stroke just before being discharged to home care, from which she never recovered.
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I was diagnosed with DCIS Stage 0 and had a lumpectomy that showed clear margins around the area. Then went to a radiologist who recommended 5 radiation treatments. Just visited with another oncologist to decide if I want hormone therapy with Tamoxifen. I am in a quandary! Tamoxifen has side effects (doesn’t everything). I am 82
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Hi @bls143, Sorry to hear what you're going through. Great news about clear margins!
The goal of radiation after lumpectomy is to destroy any individual cancer cells that may have been left in the breast after the tumor was removed. This reduces the risk of the cancer coming back (recurrence).Here’s a good analogy for understanding the role of radiation therapy after surgery: “If you drop a glass on the kitchen floor, you must first sweep up all of the big pieces of glass and throw them away — you can think of breast surgery in this way,” says Marisa Weiss, MD, founder and chief medical officer of Breastcancer.org and director of breast radiation oncology at Lankenau Medical Center. “Radiation therapy is like vacuuming the area after you sweep, getting into the corners and under the furniture, to get rid of any tiny shards of glass that might be left behind.”
So, yes, it too has potential side effects, but they are trying to reduce the chance of it coming back.
As for Tamoxifen (https://www.breastcancer.org/treatment/hormonal-therapy/tamoxifen), or an Aromotase Inhibitor (https://www.breastcancer.org/treatment/hormonal-therapy/aromatase-inhibitors), these too are intended to reduce risk of recurrence. Some women experience side effects like joint pain, etc, where others do not, or only minimal. Each person is so different.
But the quandary is real for all. It's about weighing all the factors, including your overall health, age, history.
We hope others chime in.
Sending gentle hugs, Your Mods0
