Forum Discussion

Shae's avatar
Shae
Member
5 months ago

Early breast cancer treatment decision

Hi everyone, I’d really appreciate hearing from others in a similar situation.

I’m young, not (as) close to menopause, and recently had a lumpectomy for a 12 mm, grade 1, ER+/PR+ HER2- IDC. Margins were clear, and there was no lymph node involvement. My Ki-67 is low (10%), and I’ve been told I don’t need chemo. The surgeon noted there was no calcification and no need for PET-CT. No problematic genes. 

My doctor recommended both radiation and tamoxifen, but I’m feeling unsure. Looking at tools like Breast Predict for hormone therapy, the benefit to mortality risk is minimal (0.3% for 5 years, 0.7% for 10 yrs, 1.1% for 15yrs). I'm very healthy, exercise daily for years, healthy diet, don't drink or smoke. My breast are above average and their tissue is very dense. Women in my family have had rough menopause - incl. severe heart issues so I'm worried about the tamoxifen side effects, and I'm thinking an MRI (?) every 6 months is enough.

Given how small and slow-growing the tumour was, and how low my recurrence risk seems to be, I’m struggling with whether I really need both/ either radiation and tamoxifen. I know they each reduce recurrence in different ways, but I’d love to hear from others who had similar pathology — especially other younger/pre-menopausal women - If you only did one (or neither), how did you make that decision?

I'm meeting with the medical oncologist for the first time this Friday and keen to have an intelligent discussion that may challenge the conventional/ standard treatment.  if you have any research to share - that would be wonderful! 

I'm grateful for any insights or personal stories you’re open to sharing — I’m feeling a bit stuck and trying to weigh peace of mind vs. quality of life. Thanks so much!

hormone-therapy
tamoxifen

3 Replies

  • Mumjeans87's avatar
    Mumjeans87
    Member
    2 months ago

    Hi Shae,

    how did you get on? What did you decide? I’m in almost the exact same position and will be meeting up for my oncologist to discuss options next week. Interested to hear your experiences:) 

  • FlatNina's avatar
    FlatNina
    Member
    4 months ago

    Hi Shae, 👋 I am someone who found menopause symptoms dreadful. I suffered them for 2 years at great personal cost to my quality of life and mental health because people warned me off HRT. Finally a wonderful specialist put me straight and I had my former beautiful life restored with HRT. 

    After many years I was diagnosed with early breast cancer and advised to taper off HRT. I did so. I had a lumpectomy and then when they couldn’t get margins, I had a unilateral mastectomy. My oncologist/breast surgeon was adamant about me taking Tamoxifen. By this point some of my previous symptoms had returned and so I wasn’t going to be easily convinced. I did plenty of homework and at my next appointment I asked what my personal risk was of the cancer returning. I was told 6% in 15 years. Taking Tamoxifen would reduce the risk to 3%. What???  I have a 94% chance of NOT getting cancer and you want me to vastly reduce my quality of life for the next 15 years?

    After quite a tussle, feeling talked down to and having my concerns dismissed, I nevertheless stood my ground. By this point I was waking up first thing in the morning crying for no apparent reason and feeling that without HRT I might not even be around in 15 years.  I felt so browbeaten that I considered taking the script and just not filling it, but instead I explained that my quality of life was more important to me than my longevity. The oncologist finally relented.

    As I walked to the door, he told me it was actually a reasonable decision and that had I been in Scandinavia, doctors would not even have suggested Tamoxifen!

    Everyone has their own circumstances and decisions to make,  I don’t seek to influence your decision at all. I am just sharing my personal story. I’m probably an ‘outlier’ because I have since gone back on HRT and I had an oestrogen positive cancer. I own my own decisions, and I will take the consequences for those decisions, as I have my whole life. I’m loving the life I have now. The future is unknowable but my priority is now.

     

  • arpie's avatar
    arpie
    Member
    5 months ago

    Hi Shae​ 

    With your dense breast tissue, it is more difficult to detect any cancers .... mine was missed by mammogram. Make sure your yearly checks are both 3D Mammogram AND Ultrasound.

    I am guessing there is no history of BC in your family?  Do you have kids? 

    My own chance of recurrence was also low (I am not 'young' tho) so I chose to have the Radiation to 'mop up' any random cells the surgery may have missed (but not big enough to show in the biopsy results.)  I found the Rads treatment to be the easiest of the lot, to be honest & I consider it as 'insurance'.

    I also had AI meds for the same reason.  Sadly, even with the best biopsy & surgery results - there is NO guarantee of not having a recurrence.

    Here's a bunch of treatment questions to ask your Oncs ...... you can also ask for a 2nd opinion too - so try to be open minded when you see them - record the conversation, so you can go over it again later on.  You should not have to make the decision 'then & there'.


    Check out this discussion on Hormone Therapy
    New Upfront About Breast Cancer Podcast: Hormone Blocking Therapy | BCNA Online Network

    And another one on taking AIs (or not.)
    The Choice to walk away from AIs ...... some women are! | BCNA Online Network

    You really just need to be comfortable with your decision & not have the 'what ifs' ..... if there is a recurrence further down the line.

    take care & all the best on your decision making.