Hello, thank you for this organization. I am a 65 y/o who was diagnosed with invasive lobular carcinoma (ILC) April 10, 2024. I am very blessed that is was caught early. I think my tumor was 7mm and was considered stage 1A. Due to having several biopsies, dense breasts and a sister, mom and grandmother with estrogen fed breast cancer (we did not meet any of the genetic testing so go figure), I had two choices for treatment. A lumpectomy w/radiation or double mastectomy. May 28, 2024 I had a double mastectomy and and DIEP flat reconstruction. I am glad I had the double mastectomy as another tumor was found that while small was not detected until the removed tissue was further examined.
Fast forward to today, there is so much mentally that goes on with us and I know there are worse cases out there…my heart truly goes out you. But I thought after this surgery I could put this in the rear view mirror. But everyday I take a hormone blocker and it reminds me.
So ok, I don’t want cancer, however the side affects as many of you probe only of taking a hormone blocker is a Prolia shot. I thought I read that once you start these shots you can not ever get off. I have talked to some breast cancer survivors who were on hormone blockers but not given the shot. I am not sure I want to continue either medications, but the it scares the dickens out of me.
@sgruning hi there… just seen your story.
Just wanted to say hi, and hope that the team here help guide… but there is also: Support | Lobular Breast Cancer UK that also has links and there is a facebook group specicifically for ILC : Redirecting... for UK or if you’re in Ireland then: https://lobularireland.com/
wishing all the very best with treatment
Hi @sgruning welcome to the forum and so sorry to hear of your diagnosis.
I’m am 55 with bi lateral (both boobs) invasive ductal cancer and have had lumpectomy, chemo with Herceptin, Zolendronic acid ( infusion 6 monthly for 3 years) and 5 years of Letrozole to block estrogen. I was already menopausal at my diagnosis and came of HRT and the side effects all came flooding back and now with Letrozole they are worse than before. I was cancer free in July 2023 but had my other treatment afterwards for just over a year, so it took a long time to feel I was finished. Although popping a Letrozole every day is a reminder and the 6 monthly infusions.
I wasn’t aware of Prolia but a quick Google says that it is to protect your bones so similar to my Zolendronic acid. I can’t comment about the fact you can’t come off it once you are on it but am aware of other older ladies who are on alendronic acid for osteoporosis prevention and are on those tablets for life. I found this link on the osteoporosis society website.
You might want to call and talk to a BCN nurse to find out more
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Oh you take Zolendronic Acid infusions once every six months. I am on Ibandronic Acid daily and it is a real ball ache (pardon the expression) - getting up early to accommodate it. I wasn’t given an option other than monthly infusions - but not 6 monthly xx
I know of others given the daily tablets without any explanation. They also moan about the aspects of taking it such as being upright for 30 minutes afterwards being annoying. After speaking to me they were going to ask to swap to the 6 monthly infusions, which isn’t without its problems. I get flu like aches on top of my ‘normal’ aches for 4/5 days but it’s only twice a year. I suppose it’s a higher concentration in one go.
Always worth a chat to ask if it’s suitable for you.
I’m sorry to hear what you’re going through, and I’m glad you’ve posted on the forum.
We hope you find this a supportive place and please know if you ever want to chat things through or clarify any clinical concerns, our breast care nurses are here for you. They can be reached on our free helpline on 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday. You can also post any questions to them on this board of the forum: Ask our Nurses your questions.
