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

I am fortunate that my onocologist/hemotologist and radiation onocologist both listen to me....I feel that they are smart and full of knowledge. I have read various books. I do research. I refuse not to know what is going on with my body even when I do not understand it all...I ask questions. I think sharing info also helps. God bless.....

My radiologist was the first docs who listened and pointed me in the right direction to learn more! My PCP was the worst, but still advises my ex! One of the 7 docs on ‘my team’ even told me to stop reading books/reports/articles because I didn’t need to understand what he was advising me to do! Again…no longer on ‘my team.’
We need to stand up for ourselves once we’ve educated ourselves. Docs have degrees and years of education, but pre-determining what WE need, WE can tolerate, WE want is demeaning. I’ve lived in this body for 80 years now and know what feels right or wrong for me. If it’s the wrong decision it’s MY wrong decision. And I can live or die with MY decision!
If this upsets any of y’all, I’m so sorry for that. However, it’s my life! (So sang Frank Sinatra many years ago. And probably Taylor Swift recently using different lyrics!!)

I went through a few medical oncs after diagnosis with DE Novo stage 4 lobular carcinoma. I finally found a lobular specialist and for the first time, I had someone who listened, explained and made me wishes part of the treatment plan. My first recommendation always is to find an oncologist you are comfortable with.

I have a wonderful oncologist who listens well. I just don’t know what to ask… I have been doing lots of research. Still feel questionable….

@mimi09 I can't quite understand it but oncologists seem to just follow protocols and don't look at the individual person's needs and situations and type of cancer. It just leaves you wondering and searching for someone who actually listens and tailors treatment to the person.

@wews no I’ve refused any treatments until I’m certain that it’s the correct one for me. And up until the new surgeon, it wasn’t! I felt like the prior surgeon had a scalpel in her hand. She did NOT listen to me or give me answers

@mimi09 did you start with tamoxifen?

@wews I was diagnosed with DCIS 24 years ago followed by lumpectomy and radiation. No issues until 18 months ago when nipple inverted and diagnosed with ILC. Surgeon suggested mastectomy & reconstruction. She said NO to anastrozole due to osteoporosis, yes to tamoxifen despite my mother having died of uterine cancer and my anti-depressants.
I’ve changed surgeons to one who actually discussed this with me in depth. Seeing a new med onc next week (just a week before I turn 80) to discuss options that I’m willing to accept.
We ALL have different life situations and expectations. We ALL read, research, discuss as evidenced by the discussions here! We ALL are looking for positive outcomes; not all of us get what we want.
My prayers are that each of us is let to the best possible answers as we look for guidance and support during our journeys.
Love and prayers to ALL…

@wews I'm in a quandry too. I have had MILC since 11/23 diagnostics. But have been dealing w/ ILC off and on since 2013. Double mastectomy w/ poor health practiioners , either not taking out areccurrence with ample margins or the metastatic migrated to 1 vertabrae. I alson have had to have periodontic surgeries and no I need a root canal redone...so I haven't had any Zomeda treatment since about 18 mos ago due to potential for Zomeda to cause a kind of jaw necrosis and I do take a half dose of Anastrozol The PA said that maybe due to holding off on the last 2 Zomeda treatmts & the Anastrozol side affects of bone loss I have areas in my lower spine and hips that are now presenting as Osteoperosis. 3.1-3.9 numbers. and she wants me to take Tamoxafen now. The side affect of excessive endometrial cell development is concerning and thus risk for cancers in the uterus,etc. and postmenoposal is much higher risk than premen. I have 3 family members who have had hysterectomies for Fibroids and I just feel like I would be even more prone to this kind of cancer developing and if I have had no cancer growth at all w/ Anastrozole I'd rather try to improve my osteoperosis and will be getting Zomeda infusion probably in July & do veery consistent weight bearing exercise and see how that goes first.

Letrozole has been shown superior to tamoxifen but little suggesting superiority over other AIs. CDK4/6 inhibitors have been a game changer. It is targeted therapy. There are some adverse effects similar to chemotherapy but generally much less severe and outcome data is impressive.