Lobular Breast Cancer: Let's share and support each other

Yes it’s very important to have a doctor you can feel comfortable with and trust. I wish you the best!

You deserve doctors you trust, and actually feel like they care. I'm in the midst of changing my oncologist. I tried hard to give him every opportunity; but eventually had to admit he wasn't in it for me.

Well, being 78 I haven’t had an OB/GYN or pelvic exams for several years. My PCP is not “hands-on” and never checked breasts even though I had ductal cancer/lumpectomy in opposite breast over 24 years ago. Evidently doctors just accept radiologist report and it ends there—at least mine did! I am angry and have not talked with PCP directly. Trying to concentrate on now but it’s hard! Now oncology surgeon is wanting me to have genetic counseling but can’t get straight answers that it would be covered by Medicare/supplemental insurance. Very disheartening and frustrating.

My FISH test came back negative so that was good news. The surgeon recommended they clean up the bad margin and if the pathology comes back good, I may not need radiation. Praying that's true and I can avoid radiation. Tomorrow is the re-surgery.

Thank you for your support

I'm so sorry to hear your story. Ignoring an egg-sized lump? That doctor should have his license taken away.

Yes I’m also told hard to detect—but I had an egg-sized lump and was told “nothing to worry about”—until 15 months later when I was diagnosed! Just beginning long journey…letrozole, to shrink tumor then surgery. Hoping for lumpectomy instead of mastectomy. Angry that no one followed up sooner on this lump since I had lumpectomy on opposite breast 24 years ago! Healthcare is broken…

Hi,I too have had ILC. Lumpectomy in October. Radiation 3 wks in Dec. I've been on anastrozole for five months. Only recently have I had stiffness and pain in my legs. Really weird because I've never had that before. I'm 79 and I ride my bike some mornings. On other days I work out...rowing machine, etc. I think staying active helps along with a topical called Icy Hot. I'd like to work with this med as long as I can. Good luck to you! I have taken supplements for years, including glucosamine. We kind of have to dial things in as we go along, I think.

I'm surprised they put you on that drug. I was told if I have osteoporosis they would not give it to me. They did a bone density test, but my results are not in yet. I do have arthritis. I'm not sure if I will take it. Thanks for sharing

I have ILC stage 3. I had lumpectomy and finished radiation last September. I started Anastrozole last January so I have been on it for 1.5 years. I have arthritis and osteoporosis. Anastrozole makes both worse. My joints are very stiff when I wake. I found that walking 30 minutes a day helps a lot. I am trying to hold my osteoporosis in check by exercising and taking supplements. My numbers are stable with slight improvements. I am still active and can do most of what I was doing before. Good luck to you. Keep active and eat healthy.