Met with my medical and surgical oncologists yesterday (99% ER+ 96% PR+ HER2-, prognostic stage 2A)
Long post incoming, sorry. Following up on my initial IDC diagnosis — ER+ (99%) PR+ (96%) HER2-. Grade 2 tumor. Premenopausal (40F). Prognostic stage 1B or 2A per the MO, but leaning 2A. One 1.9cm mass and at least one axillary node confirmed positive from biopsy (three additional nodes noted to be suspicious on initial mammogram & ultrasound). Bone, CT, PET scans all clear. Genetic counseling appt on Thursday, breast MRI on Sunday. I also signed a consent form for a possible trial for HR++- patients that will include a MammaPrint test to see if I qualify (the test group gets immunotherapy in addition to standard of care chemo if determined to be high risk on MammaPrint). If I come back low risk, I have options for other trials.
I met with my medical oncologist, surgical oncologist, and nurse navigator yesterday. They seem great. The tumor board reviewed my case, and I was a bit surprised to learn that they’re learning surgery first if I pass on the trial I mentioned above. This is a bit of a change from my intake appointment with a nurse practitioner, which led me to believe chemo would be first. Both the MO and SO feel confident that with my relative health and extremely fatty breasts making it easy to pinpoint my mass, they could get clean margins on surgery (I am leaning lumpectomy with sentinel node biopsy) and believe neoadjuvant chemo wouldn’t have a significant impact on shrinking the tumor. If they find only 1-3 nodes are affected, I could avoid chemo and go straight to radiation and endocrine therapy. Of course, if the sentinel biopsy definitely shows spread, they will go back for axillary dissection — thus why the surgical oncologist sees my case as “complicated but treatable” since we'd be looking at two potential surgeries. Considering my recon options, too, if mastectomy is recommended.
Does this sound right? I’m already seeking a second opinion, but I assumed that being premenopausal with node involvement would send me straight to neoadjuvant chemo. Of course, I’d love a chance to avoid chemo, but I also want to zap any cells floating around the body and prevent recurrence! And I fully know my treatment plan, staging, etc, can change at any time based on what comes back from genetics and surgery.
If you were in my shoes, would you choose lumpectomy surgery first? SMX? DMX? Did your team push for surgery first before other treatments? FWIW, I know the MO has direct expertise in trials treating early-stage HR+ HER2- cancers in low-risk, "older" premenopausal women (40-60)—showing good evidence that surgery, rads, and endocrine therapy alone can be a highly effective treatment strategy.
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amoderndance,
Sorry that you find yourself here. I try to stay away from medical advice (retired elementary school teacher) but I will say two things. First, I think second opinions are wonderful. They can be comforting, illuminating, and in general, may help you understand your particular situation. The second thing is that although there is a standard of care, there are variations and differing approaches to many aspects of bc treatment. This speaks to how much more complex bc is than many of us realize. I wish treatment were like a cake recipe. Put in 1 cup of this, a tsp of that, and you get a lovely cake… sadly, it doesn’t work this way. I hope that your second opinion clarifies things and helps you understand why they are not recommending neo-adjuvant chemo. Take care
PS: Start writing down your questions/concerns as a second opinion visit is sure to come with lots of information. You can also ask the doctor if you can record the visit as it sometimes helps to listen to things again.
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I was a premenopausal 43yo when diagnosed - likely perimenopausal looking back. My tumours were perceived as being much smaller on scans than they ended up being (hence the late diagnosis - they didn't show up at all at first). So I was offered surgery first (opted for single Mx) - it seems in the NHS this is the standard of care for smaller ++- tumours (and I've heard nothing to suggest this has changed since my diagnosis).
I must admit I quite like knowing how many nodes I had positive. It would have been reassuring to feel the tumours shrink away with neoadjuvant chemo but given that PCR is unlikely with ++-, I think on balance I would rather know my exact pathology. Especially in your case where avoiding chemo may well be possible.
Even if I avoid recurrence, I will always hold a deep seated belief that the chemo didn't really do much for me. Everyone panicked a bit since my diagnosis was missed for so long and essentially threw the book at it. I was too terrified to argue. I would probably do the same now tbh. But my cancer has been described as 'localised low proliferation post menopausal disease' by a professor of oncology who have me a second unofficial opinion. He was on the fence re chemo - in the end I just went with the advice of my actual doctor. I had young children at the time of diagnosis and felt I couldn't mess about.
I plan to take some form of hormone therapy forever. Will be switching to an AI in around 20 months all being well. I agree that surgery, radiation and hormone therapy seems to serve many women well. In your case I would probably try and get away without the chemo if <3 nodes involved and analysis suggests low grade/proliferation.
It is so hard being a bit of a gray area though - you have my sympathy. These are tough decisions.
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Thank you @starbridge — your perspective is really helpful honestly! I've suspected my perimenopause started in the past year based on classic perimenopause symptoms, as it did for my mother at 38. which makes a strong hormone-fueled cancer all the more puzzling! (I just turned 40 about two weeks ago.)
It seems that my care team and hospital's tumor board shares your opinion that I'm a bit in a gray area. I will absolutely get the chemo if I have to after surgery, but it's nice to know I have a chance at skipping it if determined to be unnecessary in the surgical pathology.0 -
All situations are different and while mine was similar to yours I was older. Biopsy pathology may not be the same as surgical pathology which is why planning can be difficult.
As far as chemo goes genomic tests like Oncotype DX or MammaPrint predict the benefit from chemo. In my case the benefit was low (1.2%) so I did not do chemo. My surgeon was surprised because of the size of my tumor but commented that genomic tests have cut down on chemo which has little benefit but can cause lasting side effects. My tumor which appeared to be about 1.8 cm on imaging turned out to be 3.2 cm when surgery was done. I had an oncoplastic lumpectomy which gave an excellent cosmetic result in spite of the size. I went into surgery knowing that I might need an ALND later but ended out with only one sentinel node positive. I had whole breast and axillary radiation.
Seeking a second opinion is a good idea but it sounds like the information you have been given is on target. The clinical trial could be a good option. Things would change if you have more than three positive nodes but that won't be known until after surgery. I hope your treatment, whatever it turns out to be, goes well.
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thank you @maggie15! I’m pretty confident in my care team regardless of what the second opinion says given that it’s the best cancer center in my state. But the peace of mind to affirm their opinion or have something else to consider helps!
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I understand there is a hormonal surge just before menopause - I believe this is what probably triggered my cancer. Some perimenopausal women unexpectedly conceive as a result of a rogue ovulation - us lucky ducks get breast cancer.
Given that our cancers are clearly so strongly driven by hormones (I was 100% ER and 99% PR) I have (somewhat unscientifically) decided that continuing with hormone blockade for as long as possible will have a good chance of preventing recurrence.
I must admit I feel better as a menopausal woman than I did when I was at the mercy of cyclical hormones. Oestrogen has not been my friend over the years. Hope you have a similar response to your endocrine therapy and good luck with your surgery and the rest of your treatment.
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@starbridge Huh! That's super interesting about the premenopause hormone surge. FUN.
It's funny that you mention that you feel better during menopause. My cyclical hormones have been HELL for the last 8 years, so I've wondered the same. Assuming my side effects are manageable, I'm perfectly comfortable staying on endocrine therapy for as long as it takes to prevent this beast from coming back!
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