Best Of
Re: Just diagnosed with ILC mets
Thank you, @bighubs
Sitting right now in my doctor’s office waiting for her decision. For me long term is more than the median survival. From the literature it’s few months or in some cases two years. I have a mother who is almost 100 years. Need to take care of her.
laguna24
Re: My Husband, My Life, My Love, My Family, My Cancer
I just looked at the Cuddle Puddle blanket on Amazon. It looks very nice!
Re: My Husband, My Life, My Love, My Family, My Cancer
Candy - You so get it about those reports! I also remember reading a DJMammo post here some time ago, where DJ explained that radiologists actually write the report for the next radiologist who will be dealing with the same patient - not even for the PCP or MO, etc., much less the patient. We and our regular doctors are not the audience the report is directed toward at all, so no wonder they read strangely to most of us. Also, I too have even wondered sometimes if I even have cancer! In my situation, I think it is wishful thinking, but I get it, and why someone would wonder, after to you read all this stuff.
Cookie - Thanks, and I am hoping the oncologist will have something helpful and uplifting to say tomorrow. Intolight's did, am I really glad for her. Also, Buster is soooooooooooooooo cute! Thanks for sharing the wonderful photos. Especially like the "on the water" one. He looks like he's wearing a corsage and ready for a date.
(I love it when Candy and Cookie post close together - makes me think of "cookies and candy" and who wouldn't have their mood raised by that alone?)
Mel - I am so glad that you have Theo. He seems to bring you so much joy and comfort. Hard to believe he is a whole year old now. May you have many, many more together!
Re: Just diagnosed with ILC mets
dear kbl,
Praying for you and all of us. Thank you for your support. Will try to join Monday zoom to see how it can help me
laguna24
Re: Just diagnosed with ILC mets
@laguna24, I'm not sure what you consider a long term survivor, but plenty of folks similarly situated seem to be doing relatively well at about the 5 year mark. @kbl is similarly situated with mets to her stomach, bones, and bone marrow and has been on treatment since 2019. My wife is similar to @kbl but was only diagnosed de novo just over a year ago so isn't what you'd consider a long term survivor. ILC seems to be much slower growing than IDC and is almost overwhelmingly ER/PR positive which makes it respond well to systemic hormone therapy; particularly when a cdk4/6 inhibitor is included. That's probably not the reassurance you were looking for, but for what it's worth I'll add that the shock you are feeling, and all of the associated emotions that come along with it, are perfectly normal and expected. Fortunately, I think anyone who has been there before will tell you, it passes eventually. Once you get a treatment plan in place, start taking the meds, and start seeing results you'll feel much better. No one can say how long you'll remain progression free, but survival times are increasing everyday and even since my wife was diagnosed several new meds have been FDA approved for MBC (Oserdu, Truqap, TxD, and capivasertib). Many more are on the horizon. As many others have put it, while it may not be "curable" it is becoming increasingly very treatable as a chronic lifelong condition. Plenty of reasons to be hopeful!
bighubs
Re: How long have you been Stage IV?
In one month, I hit year 13! I’ll quote The Grateful Dead, ‘What a long strange trip it’s been…”
Re: How long have you been Stage IV?
Originally diagnosed 2A when I was 37. Diagnosed Stage IV at age 42. Mets to spine. I’ve been Stage IV for 8 years and counting.
Re: Starting Chemo April 2024 Support Thread
@grammie2 there were a bunch of factors that went into my decision to do the double mastectomy and go flat. Through the diagnostic process, we found that I had cancer in both breasts as well as a gene mutuation called BARD1 that increases chances of cancer. BARD1 doesn't increase your chances of cancer as much as BRCA, but I still managed to get a double whammy! Ultimately I wanted as few surgeries as possible, to limit the risk of complications from reconstruction, and to get the chance of recurrence or new cancer as low as possible. I also preferred the idea of being symetrical on both sides. I am very glad I took the approach I did and miss my hair a lot more than I miss my breasts!
While my surgeon said she could do lumpectomies on both sides, my interpretation was that she agreed that mastectomy was the best approach when I said that was what I wanted.
lbn2222
Re: Starting Chemo April 2024 Support Thread
For me, my oncologist explained that a lumpectomy might not clear the margins due to the location of abnormalities in my breast. She detailed her plan, but feeling overwhelmed, I told her my preference is a double mastectomy. She totally agreed, emphasizing its efficacy. Then my MRI results showed a huge area of abnormalities— her words were “completely peppered”— and lumpectomy is off the table. When I left that first day, I sat in the car and thought, did I really just say that? Do I really want to go through a double mastectomy!? And I kept asking myself. But that never changed to a “no,” so I’m good with it.
The last appt she went into the same spiel to save the nipples, explaining she could do it, and the long list of possible issues and what she’d do to try to counteract them, but I told her I’d already made peace with the idea of nipple tattoos. She agreed that would probably be best. (For some reason, I really love the shapes, as in heart or flower nipples, instead of boring circles. But I’m still thinking on that.)
