I was diagnosed with grade 3 triple positive IDC in the summer.
I had a WLE which removed a 9mm tumour but also on pathology results an area of DCIS around the tumour was found, in total around 5cm was removed, including margins which were clear. I also had a SNB which was clear.
I began chemo and am about to have cycle 5 of 6 rounds of FEC. I will then have radiotherapy followed by herceptin for 1 year and hormone therapy for 10 years.
Since diagnosis I have been constantly looking to find stories of a similar diagnosis, and always comparing treatment plans and questioning why they differ. I have no doubt in my treatment team, just curious as to what defines different plans and wondering if any others share the same.
Hi @lanna19
I too wondered about all the different treatment plans and have only reached an understanding of it in my own head without actually asking anyone, so this answer could be inaccurate! I think chosen treatments very much depend on the nature of the cancer in terms of receptors and aggressiveness, along with the individual with the diagnosis.
My cancer was hormone positive but HER2 negative so I had EC-Taxol chemotherapy (I guess there is a lot of pharmaceutical minutiae to justify which drugs treat which types of tumour!) and I am having hormone therapy but not herceptin because my tumour was HER2 negative.
I also had WLE but they were unable to reach a clear margin. The area included a large tumour of 33mm, a smaller tumour of 5mm, and cancer cells in the whole area in between them, of total area 6cm. They also found cancer cells in the two lymph nodes they removed. I had another WLE along with lymph node clearance, and again they were unable to get to a clear margin in the breast tissue. They also found cancer cells in two further lymph nodes. I had another surgery after chemo and the tissue showed no more cancer cells, it was horrible but at least the chemo worked!
I was pre-menopausal upon diagnosis and they concluded that the cancer was pretty aggressive, so after radiotherapy I began on hormone therapy, using Letrozole and Zolodex, along with a newly approved drug, Abemaciclib (Verzenios), to prevent the cancer from coming back.
The use of all the different treatments is fascinating. I’m sure that my treatment may have been slightly different had I been post-menopausal or if I had discovered the larger tumour much sooner. Thankfully oncology is able to treat our cancers now as compared to years ago when only surgery was an option. It’s a shame it causes such dreadful side effects, but at least it does seem to work in most cases.
All the very best to you, I hope your chemo and the following treatments will be kind to you
Hi @beck
I am similar to you: ER positive, HER2 negative, however, I am post menopausal. I am on letrozole (started in Oct 2022) and Abemaciclib (started just this July 2023). Do you think that Abemaciclib works in reducing recurrence risk? I have often wondered to myself how can we be sure it works? There’s no test, is there, to ascertain that the drug works? Indeed Abemaciclib causes horrible adverse side effects. How long have you been on Abemaciclib. Wishing you well.
Hi @Siggi,
You have a good point about checking if the abemaciclib is working. I have guessed that we will know in the long term for as long as we continue to be cancer free. I think the original use of this medication was for people with Stage 4 cancer in order to reduce or slow the growth rate of the cancer. In those patients the cancer progress was shown to be slowed or stopped by the abemaciclib, along with other medications (hormone blockers etc.), so it is safe to transfer this finding over to people with no active cancer, that it helps them remain cancer free. Probably I haven’t explained or understood fully as I am certainly no scientist, but this is how I am telling myself to keep going with it during the horrible side effects!
I too started it in July, at the very start of July, but have had to have two breaks due to neutropenia.
I also understand from reading another blog about abemaciclib in lobular breast cancer that when abemaciclib is prescribed, it has to be used with letrozole rather than tamoxifen. I understood tamoxifen is/was generally the hormone drug of choice for post-menopausal women until abemaciclib was approved for use as a preventive medication last year. Perhaps I have misunderstood this, or, maybe it’s mostly used in early stage breast cancer with lower risk of recurrence
It’s all a lot to try to understand for the lay person and even more confusing when we all talk together and start to compare notes on the drug regimens we have been put on! Complex but fascinating nonetheless.
Wishing you well and side effect free
My BC was grade 3, triple positive, 1.7 cms, diagnosed in Sept. 2019. One month later I had a lumpectomy, clear margins, with micro on one lymoh node. Three weeks after this I started chemo (docetaxol and cyclophosphamide - 4 cycles). No problems with it. I also had 4 muga scans and a bone density test before treatment startrd. Three months later 25 radiation treatments. Last but not least I had 17 herception infusions. Finished treatment Dec. 2020 just before Christmas. I will have my third mammogram since in Dec. 2023. Am taking letrozole for another 7 years. Hope everything goes well for you!
Hi Beck,
Thanks for your reply. yes, my onc did tell me that initially Abemaciclib was only offered to those with metastatic breast cancer, but it is now available to those locally advanced cancer. I think the manufacturer, Eli lilly, is trying to push for Abemaciclib to be prescribed for early breast cancer… You advised you had neutropenia. What constitutes neutropenia? Is it low neutrophil count? As for me, my liver enzymes were slightly elevated, however, my onc was not too concerned about it (yet) as it is still within the range. I have also read about the “rebound” effect. Not too sure if there’s any foundation but when Abemaciclib is stopped, the cancer comes back… sigh…
All the very best Darla49 for your mammogram. They’re not the most comfortable of things but so worth it for keeping an eye on any new nasties. Long may they stay away.
Siggi, yes neutropenia is when the neutrophil count goes below 1 billion. Usually for people not on this treatment the healthy range is above 2 billion but for our purposes, as long as it goes above 1 they are happy to restart treatment. My liver ALT count went absolutely through the roof in my first month of treatment but seemed to settle and has been fine since. My oncologist was also not bothered about that. It’s so weird how our bodies react to these meds!
I haven’t heard of the rebound effect but keeping everything crossed that it will not be the case for any of us!
I feel like we are a big part of the evolving set of treatments for cancer since we are given the latest state-of-the-art meds and, even though they are robustly tested, nobody can really know how effective they will be until X amount of years pass. I try to remain optimistic, however.
I was also diagnosed with triple positive BC. I had a big tumour (75mm) and it was Grade 3, so I had chemo first to shrink it, before having a left side mastectomy (which showed the tumour had gone, bar the pre-cancerous cells, and evidence it had been in four lymph nodes). For chemo, I had docetaxel and carboplatin (carbo because I had used up my lifetime’s supply of the other chemo drug they would ordinarily have used 10 years previously, when being treated for leukaemia), although the carbo only for 3 rounds in the end, because I felt so sick. I also had Herceptin for a year. Finally I had 5 days of radiotherapy, and am on Tamoxifen for 10 yrs (8.5 to go…). So I think there are a lot of variables they think about when deciding on treatment. I just do what I’m told and trust it’s the right thing!
I was diagnosed in late May with ER6/PR6/HER2 FISH positive Grade 3 IDC, 20mm.
As the FISH test took so long to come back I didn’t start chemo until mid July. Have had 3 EC and 2 Docetaxel + Phesgo so far, another 2 to go. . After chemo I will have surgery (therapeutic mammoplasty due to tumour local on underside of my breast - free NHS boob reduction!), then radiotherapy and tamoxifen, plus more herceptin to complete a year/18 doses.
My chemo is first so they can monitor its effectiveness before surgery, not because it’s needed for tumour size. Apparently this is common with HER2+?
Really interesting to hear about the different treatment options - I’m guessing there’s a lot more detail in the pathology reports that goes into the decision making, along with your age, general health, medical history, family history etc. so much to take into account…
