What helped you make treatment decisions following DCIS lumpectomy?

I spoke with my radiologist again today and asked about the risk /(or benefit of Radiation)of return for my situation of Paget’s DCIS with no lymph involvement and not invasive . He said for my situation (pathology 3.2cm) the risk of returning without radiation is 20% and with radiation 10%. If the pathology was 1cm or 2 cm we’d be having another discussion of “wait and see” but over 2.5 cm is a definite for radiation . So that is what helped me make my decision. I begin radiation treatments (15)tomorrow. 🙏

I am having chemo bc my recurrence score was high. No cancer. Lymph -ve. Then radiation & AI’s
It’s for itrvrntiin like an insurance policy
Anyone else?

Hi, I learned about the prone position radiation through research. No one told me, either. I expressed my concerns with radiation to all my doctors. I am concerned/worried about the involvement of my heart and lungs. I went to two different Oncology Radiation Drs. I had to call each Hospital (3) here and ask the radiologist directly if they offer the prone position radiation and if not what do they recommend for left breast women?? Finally, a radiologist technician told me. I don’t know why they seem to make it so hard to find things out. I have a question about the marking/ mapping. They did not mark my breast itself. The marks are on my side and back. I didn’t realize it until I got home. I have called the Radiologist to find out if this is correct, but no one has called me back to explain this. It seems like it takes forever to get questions answered by your team. It just shouldn’t take so much effort to get in touch with someone. The nurse navigator does return calls, but long after you’ve already suffered and found out via other means.
Glenda.

Totally agree. Some things seem like they are a secret? When my husband got prostrate cancer we were told by a surgeon if we got radiation it would come back surgery was the best option, we were so scared and in shock. After the surgery he told me to tell my husband he wouldn’t die from this well guess what it came back and he had to have radiation. We have had cancer 3 times each, had I not been so proactive we would not be here. Doctors need to realize that when someone tells you you have cancer that they need to help and give you all available choices of treatment.

I had a lumpectomy in 2022 for DCIS with a reduction, and size to match on my left. It was 1.6 cm and in the right lower outer quadrant. High ER+ and high PR+, HER2 untested. There was a 1 mm margin, just a focal point. Because the low margin was on the side closest to my skin I decided to not have them go back in a scrape another mm off to make it a 2 mm margin everywhere. I had already decided to have radiation and knew that area of skin would be weaker, and thinner, if they went back in. I wanted to preserve as much of the full thickness of skin and supporting cells to help reduce possible damage from radiation. I had decided on radiation after talking with the oncology radiologist and looking at the risk of return.
I was 68 at time of surgery. I’d did 5 days of partial breast radiation. 5 days of 600 gy, total 3000. It was the type where they lay down layers of radiation with the highest volume at the surgery bed. It was also the deep breath regulated - which means the radiation stopped and started as I took a deep breath (lifting my breast up and farther away from my ribs and lung).
I am on hormone therapy. I went through menopause at 50 so it had been 19 years. An AI is usually recommended at my age, but I have osteoporosis and am not a high risk for thrombosis and uterine cancer. My medical oncologist was okay with tamoxifen, 20mg. I have very few side affects. Some cramping, warm flashes, and vaginal discharge in the first 4 weeks that all went away. Benefits were it reversed my vaginal atrophy and improved my skin and hair. In some postmenopausal women, tamoxifen and act like an estrodial enhancer in body parts other than the breast. In the breast it is blocking the growth of cancer cells. Unfortunately at about 3 1/2 month in I started having headaches 24/7. We started investigating why, even had a brain MRI. All indications were that it was the tamoxifen. I am on 5 mg now. Some early research shows that may be enough. Time with tell. Personally I would rather take tamoxifen than an AI - although if my risk were high and I needed it to prevent invasive cancer, I’d take it. These meds affect everyone differently. Some people do fine on an AI, but I prefer to keep some estrogen in my body if I can. Only time will tell.
I am glad I did not give up all hormone treatment because at my one year follow-up the MRI showed a small lesion on my left breast and an enlarged level one lymph node on my right. They believe both are benign. The left side being surgical scar and the right node simply inflammation. I don’t so easily set these things aside, and I worry- but have gotten better with my perspective. I have another MRI and mammogram in 6 months. At that point those spots will be larger and need biopsy, or they won’t. Welcome to the “intercellular space ship” called cancer! I’m traveling to a world unknown! Science is protecting me the best it can. It’s the most we can ask of life, because anything can happen tomorrow!

I’m at the same point as you about taking the hormone blockers, I had radiation treatment very early breast cancer had lobectomy five rounds of radiation. I’m really up in the air about taking the drug The one I’m supposed to take is Exemestane From what I read, the side effects are bad for all of these hormone blockers I’m kinda leaning toward, not taking them best of luck on your decision

May you continue to be blessed with a clear thought process as you navigate your future decisions. God speed !!

@sue004, keep in mind that each person reacts differently to medications. It's important that you discuss the risk and benefits of taking an aromatase inhibitor with your oncologist for YOUR situation. I would ask questions like:
- What are the most common side effects?
- Are they side effects that I personally am more likely to experience?
- What strategies are available to cope with potential side effects to lessen their impact on my quality of life?
- It is important to me and for me to have quality of life that I can continue to _______. Which AI is the least likely to impact this activity?
- What are MY risks if I choose not to take an aromatase inhibitor?
- Can I stop taking the drug or switch drugs if I find a side effect too challenging?
- What else should I know?

Reading the experiences of others and exchanging with other women who have been there can be both informative and supportive. Please do not disregard professional medical advice or delay in seeking it because of something you have read on the community. Use the community experiences to help inform your discussion with your medical team as a partner in what is best for you.

DCIS 0 in 2023 47yr old -hormone responsive -had lumpectomy-consulted medical onc , surgical onc ,Radiation Onc . Radiology physician recommended DCS Ion test -gives reoccurrence rate with radiation and medications (tamoxifen ) -and without -came back 5 percent chance with or without radiation . So no benefit with radiation - Seeing that tamoxifen roughly cuts reoccurrence by 40-50 percent- that left me with an end state of only 2 percentage point benefit of taking the medication. Second opinion with medical oncologist - who agreed that the risks didn’t make sense for only a 2 percent reduction. So no radiation no medications . Mamo and MRI monitor ing every six months . Which I have had my first of both -which are negative! Hard sections to make - get second opinions do not rush to anything out of fear . I was also able to get the genetic testing and was not at risk for genetics’