Apr 8, 2012 12:52PM , edited Apr 8, 2012 12:54PM by texasdonna
Thanks to all you ladies for posting: Kristin, Nancy, WallyCat, Katarina--especially you guys. It's so comforting to know I'm not alone in the unknowns of ILC. For the experiences you've each shared and for the different philosophies of dealing with recurrence or the fear of recurrence, please know that your words are so appreciated. My ILC was detected quite by accident during my 1st mammo ever in 2007. No lump, no symptoms. They did a digital mammo and then recommended a needle biopsy where the ILC was confirmed.
Since then, no recurrences, but several scares. One turned out to be a surgical suture left in from the mastectomies or reconstruction. I opted for the skin sparing surgery, but don't think I'd do that again after hearing of Nancy's recurrence in the skin.
For the most part, I've been symptom-free for 4 years, but began having right upper quad and right flank pain last November. Went to dr, had an ultrasound that showed some kidney stones in both kidneys so dropped the ball. The pain got worse recently, so I followed up with a urologist who ordered a CT of abd/pelvis last week. I'll get the results this coming Wed.
All this is just to say I agree wholeheartedly that we have to fight hard NOT to worry about what could happen, but at the same time, listen to our bodies because we're our own best advocates. Doctors can only search for what we tell them is wrong. Bloating, early satiety, pain---these are things they can deal with. A puzzle they can try to solve. My oncologist told me she didn't need to see me again ever unless I had symptoms, so I took it upon myself to follow up dilligently with my internist and my breast surgeon. And if I ever need another oncologist, I won't go back to that one.
Hugs to all of you, especially those brave soldiers with mets. Thanks for fighting the fight for all of us and sharing your info.