New to DCIS

[Grandma2]

Thank you for adding me to this group. I was recently diagnosed with DCIS, had a lumpectomy in February, and they are now suggesting radiation, followed by a hormone inhibitor. I'm pre-menopausal currently. My genetic testing came back low on the tissue removed. Estrogen positive. How do you decide whether or not to go through with radiation??? I'm praying, looking for God for answers, and reading way too much. I'm vegan, healthy, active, and do zero chemicals in my home. I'm struggling to wrap my head around radiation -- and what if I don't? I'd love to hear from anyone who chose to have it and someone who chose not to. Thank you <3

[1stgradeteach]

I had a lumpectomy in July of last year followed by 16 radiation treatments. There have been no effects from it besides a little skin discoloration. The way it was explained to me was that it reduced chances of it occurring in that breast significantly. Without it there would be a chance. I didn't have the genetic test. Hope this helps some.

[Nicu697]

I was post menopausal when diagnosed. Radiation Oncologist made plan for me to have radiation and then five years Tamoxifen

[haagr]

Hi Grandma

I was diagnosed with left sided grade 3 DCIS in Sept 2015. Had a lumpectomy with wide clear margins in October and then had to face the decision about radiation. Left side radiation can also effect your heart which was my major concern.

I fortunately live in NYC and attended SHAREs DCIS support group. They also offer telephone peer support at 844 ask share if you can’t get to their meeting. The support group and peers are amazing

I went for 3 radiation consults before making my decision. I had an Oncotype score of 44 which is considered a high intermediate for recurrence. I ultimately decided to do a specific type of radiation to minimize my heart exposure but declined an estrogen inhibitor based on my medical history and the side effects of the meds I had some skin issues for a month after radiation and that breast is now smaller

Treatment approaches to DCIS are changing based on results of studies such as COMET.

There is a test now called DCISionRT that can help you determine if you will benefit from radiation. All they need is your original pathology slides. Talk to your doctor about it. If they don’t want to do it, as many old school docs won’t, I suggest calling the company itself who will help u find a doctor to order it.

Good luck Keep us posted on your decision Reach out if you have any questions

haagr in NYC

[jackandbox]

Hi Grandma2. I was diagnosed with DCIS grade 3 Comedo Necron hormone receptor negative breast cancer just before Christmas 2018. Because of the high grade and the rest of my diagnosis I had a lumpectomy in January and am having 16 rounds of radiation treatments and have 3 treatments left to go. So far I've had no complications and my skin has held up well. If it had been grade 1 and hormone receptor positive I may have skipped radiation with careful monitering. But having a high grade the cancer has a greater chance of coming back and the radiation significantly reduces that chance. In truth even with a lower grade I would probably have had the radiation since I want to give myself the very best chance of the cancer never coming back. Everyone is different as is their cancer. Listen to everyone and your doctors and do what you think will give you the best piece of mind. It's hard I know.

[Kristinamarie]

This is the standard treatment fir DCIS. It is basically preventive. You should find out about partial breast irradiation. Tamoxifen has been found to decrease recurrence and is taken for10 uears. This is what the reaearch indicatea.

[jackandbox in reply to Kristinamarie]

Since my breast cancer was hormone receptor negative none of the medications would work for me so that was a huge factor in deciding to do radiation. You should find out what grade of DCIS you have and if you're hormone receptor negative or positive. This should help you make your radiation decision.

[DCISholistic]

It's been over 9 years since I was initially diagnosed with intermediate grade DCIS. I chose Active Surveillance and holistic/natural lifestyle, diet, herbs and supplements to reduce risk. I chose NO radiation, NO tamoxifen and NO further surgery against the advice of multiple Drs. I did non-stop research, had 2nd pathology opinion which said it was all LOW-risk DCIS, had Oncotype (LOW risk) and more recently had the DCISionRT test from original biopsy -- which showed LOW risk and NO benefit whatsoever from radiation therapy! I researched over-diagnosis and over-treatment and felt this was the case with me. Now I have the personal results of nearly 10 years follow up with MRIs and Automated Whole Breast Ultrasound. Did lots of research about best imaging and learned mammograms were NOT the best way for me to monitor my breast health. I created a website to share my story (DCIS411.com) and resources. Radiation has risks (not just risk reduction benefits) and the trade-offs should be considered given each individual's personal pathology as well as personal values/preferences! Too often the medical community offers a one-sided perspective on benefits and risk reduction, but this does not apply to all. If a woman's risk is already very low, cutting it in 1/2 is essentially meaningless. For low-risk DCIS, studies have shown ZERO survival benefit to any of the aggressive treatments, including radiation therapy! Hope this helps give the "alternative" perspective!

[VStrong]

Hi Grandma2, I understand what it is like to struggle with these decisions. For me the hardest part of being diagnosed with cancer was trying to decide on treatment. I agonized over my treatment decisions. At age 53, I was diagnosed in October 2017, with Grade 2, Stage 2 DC & DCIS, with macrometastsis in my sentinel lymph node and ER/PR positive. I relied on the post lumpectomy pathology report, genetic testing, advise of my doctors and lots and lots of research to guide my decisions. There are no perfect answers. I had my case taken to the full tumor review board at my hospital for a second opinion. Perhaps that is an option for you? I also relied heavily on the results of the Oncotype genetic testing to guide my decisions. Each person is different and its not easy to assess the risk. Even though I started out resisting both chemo and radiation with every fiber in my body, I did ultimately come around to acknowledge that I really did need both chemo and radiation based on my particular type of cancer, tumor size, positive lymph nodes, vascular invasion, and my Oncotype test results. For me, I found peace in my decisions by being informed. I'm glad DCISholistic shared her perspective and experience. I wasn't offered the DCISionRT test and reading up in it, perhaps you might want to ask about that too? See: compbreastcare.com/blog/the...

Here's another website that you may find helpful: breastcancer.org/research-n...

Sending you sisterly love, strength and healing.

~V