Hello, this is my first post. I am going out of my mind thinking about this and waiting for my oncologist appointment.
Had grade 2 invasive lobular er+ lumpectomy in December. Node negative, clear margins. Was told that if it wasn't for my age, radiography and hormone therapy would be the treatment but an oncotype test was arranged to see if chemo would be of benefit. Sore came back as 21 so medium risk for my age. This means a discussion with oncologist to decide whether to have chemo. This is not until 3rd of Feb which seems unbearably long to wait.
Reading around, it seems likely that the decision will be mine based on stats of risk level.
I wondered if anyone has been in a similar situation. Did you have chemo? Based on what information? I have 2 young children, I work full time as a primary school teacher. I really don't want chemo. But i also worry that it has already spread or will come back.
I have also read that lobular cancers don't respond well to chemo. Anyone got more knowledge or experience I this?
Thank you for reading.
Hi,
I was 40 when I was first diagnosed. I was hormone positive, HER2 negative, I had a complete mastectomy with clear margins, and 4 lymph nodes samples (these were all clear) I had an Oncotype score of 12 so chemotherapy wasn't recommended only Tamoxifen.
However Tamoxifen didn't work for me and my breast cancer came back in my lymph nodes under my arm under 3 years later. I am now going through chemotherapy (which is currently on hold whilst I get over covid) It is a hard decision but if your team is recommending chemo, I would take it because they don't offer it unles they believe it's in your best interest. I don't know much about lobular though mine was mixed ductal, lobular and muscinous.
Hope you find some answers to help you plan your treatment.
Hi
I’m 49, and was diagnosed with grade 3 mucinous carcinoma (ER+, HER-), clear nodes in June last year. My Oncotype score was 21 as well and being under 50 (albeit by 10 months at the time!) I had to have the same conversation.
My oncologist said that there was potentially a small chance that chemo may benefit me. However, research was indicating that it was the fact that the chemo put women in menopause that was the benefit , rather than the chemo itself (IYSWIM). Therefore (as I was pre-menopausal) I was recommended monthly Goserelin implants to put me in menopause, and Tamoxifen for 6 months followed by Letrozole for the balance of 5 years. As I (like you!) really didn’t want chemo, and mucinous carcinoma also not really being known for responding that well to it, I was quite happy to go along with this!
I also have Zoledronic acid infusions every six months.
You may find that your oncologist is of the same view
I hope your discussion goes well
Thank you for your reply and sharing your experience. Yes, if it is recommended then I certainly won't go against that advice. I guess I fear he's going to say it comes down to my choice... but I should try to stop second guessing a conversation that hasn't taken place yet!
Wishing you a speedy recovery from Covid.
I'm 48, 20mm invasive ductal, er/pr+ her- , lumpectomy with clear margins and lymph nodes.
My Oncotype score came back as 15 which is low. However I had evidence of vascular invasion, the stage before lymph nodes are not clear. There is no guarantee that a pesky cell or two did not get through.
If like me it ends up being your decision it means which ever way you go is the right decision for you. The margins are so small that it is whatever you feel comfortable with, rather than being a medical necessity.
I chose to go with chemo as I'd rather have the treatment, then get on with life with no sneaky 'what if' thoughts intruding.
Hi,
I was diagnosed with grade 3 lobular and high grade DCIS.
had my mastectomy back in October 2020, it took several weeks for my oncotype to come back so was hoping that i wouldn’t have to have Chemotherapy.
Unfortunately for me the score came back at 30 so I have just started chemotherapy. That will be followed by radiotherapy and then drug therapy.
Hopefully you won’t have to have chemo I really do understand you not wanting it.
Thank you for your reply. I had to wait 4 weeks for my oncotype result. All the literature says 2 weeks so waiting that long felt like agony. Now more waiting for an oncologist appointment. It sounds like you have had similar waiting times between each step. Patience is not my strong suit!
All the best for your chemo.
Hello Cupotea, I am 46 yrs old and was diagnosed with Er positive breast cancer .. no lymph node involvement but vascular invasion. I never heard the vascular invasion before and am going mental about it as am so scared. I thought it was only me who had this. It’s nice to see that your onco was low. I am having chemo too because of the vascular invasion. I did not do any onco test.
Hello SCD,
I have not heard of the vascular invasion before so I can only imagine what you must be feeling.
when you are not sure of what you are dealing with it can be a really scary time.
There is an awful lot to take in and even when things are explained sometimes it’s difficult to take it all in, at least that was my experience.
I wish you all the very best with your treatment.
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