What helped you make treatment decisions following DCIS lumpectomy?

Following a single mastectomy, my pathology report indicates invasive ductal carcinoma with lobular features, grade 1, stage 1, negative sentinel node, clear 4mm margins that is ER, PR positive and Her 2 negative. An Oncotype recurrence score of 28 puts me in an intermediate range for recurrence and the possibility of chemo as additional treatment to letrozole. I have been taking letrozole since 6/22 and continue following the surgery on 8/11 with manageable side effects. My meeting with the oncologist will include a discussion of adding 4 chemo treatments spaced 3 weeks apart. Because I am 76, I am very hesitant to add chemo to the routine even though there seem to be some benefits to it. The positives may not outweigh the negative effects at my age. I do see others with similar conflicts so Any advice from those who find themselves in the same situation would be greatly appreciated.

Could you please provide information on how to join.
Thanks very much.

Hi! Sure

Contact Lisa Halver; lisahalver@gmail.com and she will add you to the community.

It’s a volunteer run group and she is one of two facilitators.

I’ll “see” you there! 🌸

At 71, and After a “ normal” mammo and ultrasound in 10/21 (but a persistent symptom) I PERSISTED… until an MRI revealed 2 tumors IDC. ONCOTYPEs 14 and 20. ER+, HER2-, I had a unilateral mastectomy Feb. 2022. Reconstruction began at time of surgery and completed exchange surgery in July. I began Anastrozole in April. I’m mid way through month 5 and I have very minimal obvious side effects … some days my hips ache until I stretch. I will do a one year DEXA ( insurance won’t pay until 2 years) to check in on possible unforeseen side effects . My advice is to try ( anti) hormone treatment if advised by oncologist and see if will work for you. If it does you are one of the 60% who are lucky enough to use this tool. Science and incredible amounts of research tells us that it is beneficial for hormone + BC.
I recently read the informational insert again and I surmised that there is potential wiggle room as far as dosing goes. Worth a conversation with oncology.

But, like you, I question everything. I declined suggested radiation because I technically qualified for the TAILOR RT clinical trial <25 ONCOTYPE, which is studying AI alone vs AI plus standard fraction radiation. Many institutions are offering this clinical trial to determine the benefit of radiation in certain clinical pictures. It was the TAILOR RX clinical trial that led to ONCOTYPING and since 2015 has saved 70% of BC patients from unneeded chemotherapy.

Science and research are on our side trying to fine tune treatments that are beneficial while trying to minimize risk. Supporting research is critical!

As I will be followed very closely with mammo and MRI alternating 6 mos. I’m hoping that any future local recurrence will be found.

We make the best possible decisions with the information we have weighing benefit, risk and quality of life.

A collective hug to all of us on this healing journey. 🌸

Hello,
My mother was diagnosed with b-cell lymphoma at age 81. Although she didn’t have breast cancer, her recommended tx was 6 cycles of chemo. She tolerated chemo well but needed some support. I know there are so many factors to consider, but I thought sharing her experience would be beneficial in some way. My only advice is to have a good support team if you decide to go through with chemo. Just having someone to keep you company, cook a light meal, throw in a load of laundry, or even take out the garbage can be a tremendous help. You will have a few bad days between cycles, but you will start to feel better before your next treatment.

I had breast cancer and went through 4 cycles of chemo due to an oncotype score of 25 and due to my age of 54. Tolerable.

I wish you well! Making this decision is not an easy one to make.

After another oncologist meeting, we discussed the mammaprint test results that indicate very low recurrence rate. Apparently this test only has two categories, high risk and low risk. It gave me more information to add to the Oncotype dx score, 28, and a KI-67 @ 6 so that I could feel ok with not having chemo. Because I had a mastectomy, there will not be radiation but I do take Letrozole without too much difficulty. Now I need to figure out which doctor will follow my health best…Internal medicine or High risk breast health clinic. Any advice? Appointments seem impossible to get without a 6 month wait at Northwestern..

Glad you did the Mammaprint! The discordance between tests is sometimes disturbing but in this case, reassuring!

I also had grade one, decided on lumpectomy and radiation but I had radiation in the prone position which effects your other organs less, I only learned of this through a nurse I was talking to who said her mother had radiation in the prone position, she hadn’t heard of it either, it makes me wonder why no one knows of this no one I have spoken to in my cancer group were aware of this. I tried anastrozole and a couple of others but I felt like I was 100 years old I could barely get out of a chair the side effects were awful. I went with the quality of life. It is up to each individual to do what they feel is right for them.

On a lighter side, 3 months ago I wouldn’t have known the word, discordance, lol. Now I have a whole new vocabulary. 🤗

Thanks for your post. I’m currently deciding what treatment to take, radiation or AI. This has been a hard decision for me. I conflicted on side effects of both since I’m 73, relatively healthy ( looming Osteopenia). Has anyone experience to help decision making. My OncoType is 16. 🌼