Dear all,
I have been reading through some posts on the forums about hormone-positive breast cancer recurrence. I have found myself in this position twice. Borrowing Roberta Flack’s hit, the first time ever I was diagnosed was 17 years ago, at the age of 37. My initial diagnosis was multifocal ductal invasive carcinoma with three tumours, all within an area of around 5 cm (if I recall correctly), grade 2, with lymph nodes affected. My treatment consisted of chemotherapy, surgery, radiotherapy, tamoxifen, ovarian ablation, and letrozole.
Despite the reassurance offered by the medical team, including the then-professor at RMH, I openly questioned their optimism about “my prognosis,” as I saw significant flaws in their theory. It seemed incompatible with the cases of many other women who had very similar or even better prognoses than mine but still developed recurrences years after their initial diagnosis. This optimism from medical professionals seemed, to me, not only unethical but also unscientific, as it could neither explain nor predict the evidence of hormone-positive breast cancer recurrence.
I felt that either they were lying, or they were not truly trained medical professionals but rather a group of fervent admirers of Frank Abagnale (the man from Catch Me If You Can), pretending to be doctors, nurses, and so on.
Years later, research confirmed my suspicions. While I firmly believe the medical team should have been aware of this at the time, the confirmation of my “intuitions” by subsequent research into the permanent risk of recurrence in hormone-positive breast cancer made my foolish ego burst with pride. Left me in awe of my own mind, yes, I am that stupid and brilliant at the same time! That said, I have never wanted to be proven wrong more in my life, as I would much prefer to live a long life than to be right about my own extinction.
Last year, I was diagnosed with a local recurrence—WTF, the nightmare again—my worst fear became a reality. This time, I had no lymph nodes involved. The cancer was the same as before but very small, with just one focus. I underwent surgery followed by Exemestane. I wanted, begged, and argued for a more aggressive treatment—chemo, CDK4/6 inhibitors, whatever—but was told no. My cancer was not deemed high-risk enough. What the hell?!
I strongly feel that protocols for hormone-positive breast cancers—and other cancers, for that matter—should be revised. Anyway, I would like to know how many of you have experienced a third relapse in the long run with breast cancer and how it presented—local, regional, or distant?
A sombre nipple (although, after a double mastectomy, I am now nippleless).
I agree with your thoughts, when you mention recurrence rates. My team only discussed 5 year recurrence, at every appointment despite mine ER+ diagnosis, and well documented studies about late recurrence. It wasn’t until I pushed the question about later recurrences that they were a little more forthcoming.
I know it’s difficult to predict the future, and from their perspective they want to provide solutions for here and now. And they want to give hope and a positive forecast but we should be aware of those other possibilities.
Best wishes for your treatment going forward x
Hiya @happynipple I totally understand how you feel. I had BC multi focal up to 10 cm in my left breast. I had the a mastectomy then chemo, radiotherapy followed by tamoxifen 5 years. When it came to the end of the 5 years all I got was a letter from the hospital to continue for another 5. No mention of seeing someone to discuss anything. How I had coped with side effects etc. As I had young children at the time & I had just lost my mother I just continued with the tamoxifen.
Keep pushing for what you think you need. It’s our body & we need to know everything about this disease.
Agree wholeheartedly. I’m still early on after my diagnosis and after treatment but the numbers of ladies I’ve seen who are HR positive going on to have recurrences or even secondaries seems to be too high for my personal comfort levels. I’m also shocked that us HR positive peeps aren’t given more in the way of scans to check for potential recurrence or secondaries. I’m not sure what happens when we reach the 5 year point if the consultations stop with our Oncologists but my fear is being cut totally loose and then discovering somewhere down the line by sheer chance that I have anything to be concerned about 
Recurrence rates are based on data collected over years and provide your team with the rationale for your treatment plan. ER+ bc seems to recur over many years even decades but chemo doesn’t always lead to improved survival rates. I fact I read that it could lead to poorer survival if, for instance, Oncodx score is low. My own second bc occurred in 2022, 17 years ( snap!) after the first. It was a new primary. I’m on tamoxifen because I had endless UTIs on letrozole. Its less effective but I feel better !