My Mom recently diagnosed with DCIS

Posted by queensfaith @queensfaith, Apr 21, 2023

Good Afternoon,
My Mother is 73 years of age and was recently diagnosed with DCIS. She first had a needle biopsy, and the results showed a need for a surgical biopsy. She had the surgical biopsy and because they did not get clear margins, another surgery is required to take a larger sample. Afterwards hormone therapy and radiation is said to be needed. I am concerned with the additional surgery and if more will be needed. Mom has other health issues that make surgery a challenge. Any advice or experience to share is welcomed. Thanks for reading.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@blessedx6

If you don’t mind me asking, how did they arrive at the number 5 for radiation treatments?

Jump to this post

Because my DCIS area was very small (6mm x 4mm) and no residual DCIS was found during lumpectomy, my risk of recurrence is very low overall. So, 5 radiation treatments were recommended if I wanted to go that route. Aromatase inhibitor also recommended if I wanted to go that route. Lowers my risks even further, but I am still very much in the +/- camp on whether I will continue it. I generally just haven't felt well on it. Tired, fatigue, poor sleep, emotional. Not sure it is worth it....

REPLY
@amylynn

I’m joining in as another “me too, same thing”! (Mammogram, calcifications found in my right breast, more pictures…followed by a needle core biopsy a week later and a DCIS diagnosis). I’m 72 and actually had my lumpectomy this morning. After resting most of the afternoon at home, I’m now coming out of that groggy stage. Surprisingly I feel pretty good and although I have pain and nausea meds on hand, I don’t feel that I need them yet. 🤞I hope this encourages you! I’m praying that I get good news at my post-op appointment next week. The only thing I’m dreading now is 4 weeks of radiation after a month of recovery from the surgery. My surgeon compares my treatment process to ‘pulling up a weed and then spraying around the area with Round-Up to further ensure that there’s nothing (unseen) left’. I’m very thankful that I will not have to do chemo or take an AI. I believe that my oncologist explained that was due to the fact that my cancer is negative for ER and PR. I’m trying to educate myself on breast cancer and I highly recommend “Breasts, The Owner’s Manual”; a book that I heard about on this blog; the author is Dr. Kristi Funk. One last thing: I’ve kept my diagnosis pretty quiet and only shared with family and close friends that I trust. Cancer is so very different for everyone and I think it only increases the burden when you get so much (possibly incorrect) advice and dreadful stories from other well- intentioned friends. Love to all on the journey and God Bless!

Jump to this post

I really only felt like a "cancer patient" after Mt lumpectomy because I had to sleep on my back and walk carefully while holding that arm still (not swinging as usual). After the 2nd day, no real pain and the stamina to walk around the block. The scar and shape of my breast was a weird change to see in the mirror. The clear surgical glue was interesting! It did eventually peel off on its own. The underarm scar looked worse from removing one lymph node. Both are fine now and my nipple is actually not as bent as it was a month ago.i was relieved when my Oncotype score was only 17, and at 64 years old, chemo effectiveness was

REPLY
@surpriseca

Because my DCIS area was very small (6mm x 4mm) and no residual DCIS was found during lumpectomy, my risk of recurrence is very low overall. So, 5 radiation treatments were recommended if I wanted to go that route. Aromatase inhibitor also recommended if I wanted to go that route. Lowers my risks even further, but I am still very much in the +/- camp on whether I will continue it. I generally just haven't felt well on it. Tired, fatigue, poor sleep, emotional. Not sure it is worth it....

Jump to this post

Thanks so much for sharing. I am waiting for my path report from the OR yesterday. My surgeon said it may take 2 weeks for the final results then we will discuss the treatment plan. I am glad yours was a small area and no residual DCIS or another cancer type was found on your surgical pathology report.

REPLY
@blessedx6

I was diagnosed with DCIS in March and I am 67. I am scheduled for a lumpectomy on May 3. I guess it will be 2 weeks before I get the pathology report and treatment recommendations. I am researching the various options, I would like to avoid radiation since the tumor is right above my heart.

Jump to this post

@blessed 6–I had a lumpectomy for DCIS on 4/4. It was low grade, stage 0, 7mm in size with 6mm clear margins. I am 65 and this was found in a routine mammogram. If it’s not presented to you, check the Sloan Kettering nomogram online (nomograms.mskcc.org) to find an estimated percentage of recurrence in 5 and 10 years for your circumstances. Mine is 6% after 5 years and 9% after 10, with no treatment other than lumpectomy, which seem small to me.

I opted against hormone blockers after medical oncologist said he would not prescribe for his wife in my situation (refreshing response!). Mine is also above my heart, which is a concern for radiation. There is a breath-holding technique which helps to avoid the heart. I have a CAT scan scheduled this week to see if localized vs full breast radiation is an option. My main concern is that you can only have radiation on an area of your body once. It seems like I would want to save that one time for the small chance of a recurrence if it was invasive.

Prayer is what I have found to be a guide. There is no right answer for everyone, only what you decide for yourself, unfortunately. Alternatively, there is promise in turmeric supplements, though not a lot of human research. Best wishes to you in your journey!

REPLY

I really appreciated getting the Sloan Kettering website predicting recurrence. I realize it’s only one measure, but it has been a factor in my decision making. I found it interesting that my Oncologist never mentioned it as a tool and I plan to discuss it with her.

REPLY
@katho3

@blessed 6–I had a lumpectomy for DCIS on 4/4. It was low grade, stage 0, 7mm in size with 6mm clear margins. I am 65 and this was found in a routine mammogram. If it’s not presented to you, check the Sloan Kettering nomogram online (nomograms.mskcc.org) to find an estimated percentage of recurrence in 5 and 10 years for your circumstances. Mine is 6% after 5 years and 9% after 10, with no treatment other than lumpectomy, which seem small to me.

I opted against hormone blockers after medical oncologist said he would not prescribe for his wife in my situation (refreshing response!). Mine is also above my heart, which is a concern for radiation. There is a breath-holding technique which helps to avoid the heart. I have a CAT scan scheduled this week to see if localized vs full breast radiation is an option. My main concern is that you can only have radiation on an area of your body once. It seems like I would want to save that one time for the small chance of a recurrence if it was invasive.

Prayer is what I have found to be a guide. There is no right answer for everyone, only what you decide for yourself, unfortunately. Alternatively, there is promise in turmeric supplements, though not a lot of human research. Best wishes to you in your journey!

Jump to this post

Thank you for sharing your decision making process. As you indicated, I also rely on prayer as my cornerstone and my prayer warrior friends have been a blessing.

My situation is a bit differ than yours since I had a higher grade DCIS and larger tumor bed. My oncologist prescribed an AI for 5 years. I am going to meet with a breast radiation oncologist to discuss radiation next. Take care!

REPLY
Please sign in or register to post a reply.