Has anyone experienced DCIS breast cancer treatment for an older parent?

Hi sending prayers to your Mom. I am 55 and was diagnosed with Stage 0 DCIS of the right breast no node involvement in November 2023. I took a radical approach and decided to have a total double mastectomy with expanders placed in January 2023 . That was my personal choice for fear that the cancer one day might return. I am still going through breast reconstruction with another surgery coming up in August.

Wow. Thank you for sharing. Did your surgeon give you both options? I guess I’m reading info where it says DCIs recurrence whether it be partial or full is only a difference by 2% but I’m sure that’s case by case basis. Hope your feeling strong and your journey becomes easier. My mom is almost 70 so she isn’t really worried about the symmetry at least that is what she says. So we will see what the surgeon says tomorrow. Can I ask from diagnosis to surgery date how long did u wait to have to schedule surgery? Own doctor told me she has time to find the right surgeon for her as it is not spreading.

Thank you yes it's been quite a journey. I live in New York and went to Memorial Sloan Kettering in the city. It was very fast diagnosed in Nov 2022 saw the breast surgeon in early December. Had surgery January 10th 2023.

Thank you! Keep pushing through you are a warrior. They need a complete cure for this horrible disease ugh! ❤️🙏

This is some education on DCIS: it is the same thing as stage 0 breast cancer. That means it is not invasive (or pre- invasive) and it hasn't spread beyond the borders of its original location. “In situ” is Latin for “in its original place.” Anything invasive is considered at least stage I. Also Ductal carcinoma in situ (DCIS) means the cells that line the milk ducts of the breast have become cancer, but they have not spread into surrounding breast tissue.

Also a biopsy along with blood work (if not done yet) will give a clearer picture on what treatment options make sense. I have DCIS grade 2 Stage 1. ER and PR 100%+ and HER2-. My tumor size was 1.6 cm. My Oncotype blood test showed chemo was not effective and chance of recurrence was low ( like 3%). I went to UTSW in Dallas. I love my doctors. My treatment plan was a one time high dose focused beam (on the tumor and 1mm surrounding it) at 38GYs ( equivalent to close to 20 treatments). On letrozole for 5 years). My lumpectomy is planned for this fall. I should add that I am in a research study so my treatment is a little different. Specifically the radiation and delayed surgery ( to allow the radiation to shrink/ kill the tumor - which recent tests shows it is doing). The other treatment option for me was 5 doses of focused radiation. So yes, your mom might not have to do the longer radiation treatments if you can find a doctor and hospital that offers these other radiation treatments. They are out there.

Oh and regarding the timeline, from diagnosis to getting the radiation for me was almost 4 months. This in part was due to my PCP letting the ball drop and me getting second opinions. Once I got to UTSW they took very good care of me in a timely manner.

Melani- thx for all the is info .. this sounds similar to my moms situation her primary referred her to a general surgeon that is not a specialist in breast cancer but has some experience mostly in robotics. He kept saying oh I can do this surgery after reviewing her ultrasound biopsy then recommended mri which he read last week and said let’s do a biopsy with MR guidance ( what is that do u know?) without giving her blood tests, true grade or stages it’s all weird to me so I took it upon myself to research breast specific Cancer surgeons thru a friend of mine who works also at a university that does Gamma and different types of treatments. We got an appt with the director of breast cancer surgery for a second opinion and to guide us to the right treatment plans. Although I found out my moms insurance even thought it’s a good plan with Medicare/UHC this Dr is out of network so I’m hoping she will guide us to another surgeon that can help or see how much insurance would cover with her insurance. It’s always the insurance the doctors u want to have are out of network.. but we’ll see. This doctor is a head of breast conservative surgeries and has extensive experience with DCIS and she is currently doing some sort of study on DCIS over treatment..

Yes in Situation ( contained) within the ducts

I’m 65, on BP & thyroid meds. The radiation for me is 15 rounds and they are very much just directed at breasts and not any other organ as they use techniques to prevent that. I had stage 1 in both breast, no lymph nodes

I’m Sorry I forgot to say I have lumpectomy in both breasts

AK: please get to a cancer dr and make sure you have a plastic surgeon that works with the surgical oncologist. If you have a COMPASS ONCOLOGY location anywhere near you, go see them

Karen L- thank u for responding!-we met with a breast cancer surgeon yesterday who is the department head and she was absolutely amazing. I don’t know why the primary referred her to the other surgeon. Anyways she explained everything in detail and eased my moms mind and even thought she is out of network meaning insurance covers 60% of the lumpectomy w her if she went in network with what the gave her she pays 20% out of pocket so she is willing to eat up that costs to feel confident w her surgeon . She does need the second biopsy and the they will schedule surgery. She is stage zero but is hormone positive on both estrogen and pro who knew after menopause u would be so high ?? I’m surprised anyway she said she’s lucky it was found early enough and should be 98% curable with a low recurrence but they won’t know what treatment if it would be both hormone pills and radiation until after surgery. This surgeon said plan on radiation but at most likely 2-3 weeks. I feel better about that for her.

Karen L also can you give me a estimate rough of what your lumpectomy costs were she only needs one but I’m just trying to see what ranges were looking at I know it varies state by state and category’s but just an estimate ..

I think radiation is more of a problem when on the left breast because it can affect the heart. I had 19 radiation sessions for Stage IIb on the right breast. I had a lumpectomy and radiation. Radiation does cause severe fatigue after the first couple of weeks and lasted for me about a month or two after treatment was complete. My neighbor had the same diagnosis as your mom and she had a very small amount of radiation. She didn’t have any problems nor a recurrence . My radiation oncologist told me I had a shorter duration of radiation because I have small breasts, so size is a factor. Incidentally, I ended up having a double mastectomy 2 years later after I had genetic testing and found out I have the BRCA2 mutation. My mom recently had a double mastectomy for the same reason and having a Stage I cancer and she is 79. No was radiation is required. She did great! I kind of think that’s a great solution, especially at an older age.

Hi Robin! Thx for the info. Yes fortunately it’s her right breast and the surgeon said they are very careful when doing radiation to minimize damage. This community board rocks you all are so helpful! 😀 Thanks again

@Robin K you are correct. There is more to consider on the left side (heart) than on the right side. I had radiation on my left breast. The Radiology staff were incredibly precise in their calculations and measurements and my heart remained safe. They know what they are doing.

I had a lumpectomy and 21 rounds radiation no nodes involved. Hormone positive. I also have Lymphedema now cause know told me after surgery wear sports bra and afterwards of radiation. I'm on tamoxifen. My personal opinion is the severe burn…

So glad the cancer was diagnosed early! I was diagnosed late 2020 at age 60 with DCIS Stage 0 cancer in my left breast. I had excellent care from MD Anderson oncology team. Plus, I had a friend who is an ob/gyn doctor, supporting my decisions. My treatment path included 2 biopsies, 2 lumpectomies (they found more after a follow up mammogram), then 20 sessions of radiation. Radiation was optional but reduced the chance of cancer coming back to under <10% per historical data. That was significant to me to do radiation treatments. Recovery Note: I used recommended lotions for scars and burned skin areas that significantly helped. I also needed to massage treated area with gentle massage and stretches, and still do today. Also, Radiation does impact your energy level, which took several months to gain it back. A surprise to me, as I was playing senior softball and had to cut back my play time. Follow-up mammograms and MRIs (alternating every 6 months), since last radiation treatment has shown I’m cancer free for 3 years. Important: There is a wonderful support group in my area (as well as online) which was a help answering questions and anxiety. Having someone to reach out to helps more than you can imagine.

Thanks for sharing your story! So glad you are cancer free! It’s comforting to know that my mom can get thru this and hoping it’s not as scary as it seems. ❤️🙏

I was diagnosed with DCIS at age 70- 6 yrs ago- very similar to your Mom. I had a lumpectomy and had to have a repeat because they did not get wide enough margins- they have a special protocol they like to get so many centimeters away from the tumor-everything was fine. After the two surgeries I had 15 radiation treatments and absolutely no problems at all with anything -with the radiation ,no burns, no damage to any other organs so I’m sure your mom will be fine. I took Arimidex for 6 yrs since I am post-menopausal (As opposed to Tamoxifen for pre-menopausal patients). The oncologist discontinued the Arimidex last month because she felt I didn’t need it any more. I have a daughter who worried about me just like you worry about your Mom. I guess you could say your Mom and I are lucky that it was caught early. Hugs to you❤️

Aww thanks for sharing your story w me yes your situation does sound very similar. Glad you are doing great and continue to be. I’ve been a wreck trying to find things out the last few weeks and now I feel better after finding the surgeon that we did. It felt like hunger games and there should be a better navigation for newbies but i figured it out. ❤️🙏

Yes AK. That's what I thought when first diagnosed. No guidance, referrals to providers were generic, it was (almost) all left up to the patient (who's head is spinning from the newness of the diagnosis, lack of information and not knowing where to turn). It was a challenge trying to find a good provider.

I was fortunate to have landed with an excellent medical team from the beginning because emotionally I was trying to process the diagnosis of cancer. I already have a wonderful support team with my congregation friends who immediately offered to take me to my appointments, offered a meal train if needed, and tapped in with me continuously. My elders came to visit me and offered any support I needed, etc. With all of the positives/blessings I have, the initial diagnosis came as a shock and an almost dizzying effect, even if the initial diagnosis was almost the best I could have: DCIS Stage 0, grade 2. Your Mom is so fortunate to have found this cancer early. This could have all been so much worse. Thank you for being there for your Mom.❤️

Yes it’s so important to have that support system. Especially for my mom being Greek and not understanding everything the drs say.. she heard the word cancer and blacked out and couldn’t focus on what drs would say. I’m glad I can be there for her and take the anxiety off her shoulders of searching and figuring things out. After we met w the surgeon the other day, my mom hugged the surgeon and in the car ride home she said I feel like I already had my surgery and feel at ease. 😅❤️🙏🙏