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

@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…

@mimi09 did you start with tamoxifen?

@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 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.

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….

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.

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 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.....

Some people don't want to know. I don't understand that. For me, knowledge is power. I'm a pharmacist so I have a balanced view of meds and supplements that may be beneficial, but at worst, which ones are least likely to interact and cause adverse effects, or loss of medication efficacy. I read every new study, am encouraged by what's coming down the pipeline, and believe I am doing everything in my power to not only live, but to live well. I don't say this to put down people that don't want the details. To each their own and this is just food for thought.

I agree we have a specific subset of breast cancer. I hear the medical world say do a monthly screening for lumps, but our lobular cancer doesn't exhibit as lumps because lobular cancer doesn't grow like that. I have learned that I should check monthly for changes. I didn't go to medical school, so I need to know what to look for.
I've learned that the medications are prescribed as a one-size fits-all dosage, and not designed for our individual needs. When we have side effects, there's no adjustment of dosage. It's like it's our fault we have side effects, which is sort of accurate, but a dosage that is appropriate for each individual would reduce or eliminate them, or at least make side effects manageable. I've been told 50% of breast cancer victims refuse to take mediation, I believe it's due to the side effects with no consideration of how to reduce the effects.