Hello and Hugs........
I have read all these posts with great interest. I am about to go to my 6 month checkup again (3 years now) since my mastectomies and each time I begin to worry. I worry because we all have to make so many choices and I hope I made the right ones but it's hard to know. The problem is seems is that cancer treatment is evolving (at least it's moving forward) and doctors will disagree and no two cancer patients are alike, not really. Some women tolerate the AI's and some do not (I couldn't....horrible depression, pain and they all caused my immune system to 'attack' me and I ended up with Shingles, Mono and various other unsavory side effects). So I have opted not to use them. I do get hormone tests (but that was with my previous insurance and doctors) not sure how going back to my Kaiser doctors will go. They weren't keen on the hormone tests but if needed I will get them myself elsewhere. I have no hormones to speak of....very low Estrogen and Progesterone, so I'm holding out hope that's what is actually causing my cancer. I am 'low risk' and grateful that I could skip radiation and chemo.
In addition, my husband has a cancer of unknown primary (CUP they call it). He has cancer, Stage 4, but the doctors don't know what kind of cancer it is. That's a thing.....who knew. We are on our third oncologist for him and second radiation oncologist. We've gotten a second opinion from a highly reputable hospital, the best in our area. Talk about fighting through nonsense. It's been a truly horrible experience. Because they can't identify the cancer they can't move forward with treatment (other than huge doses of chemo of all types that will kill him) so...........we're using marijuana, with their blessing and his tumor has actually gotten smaller and the lymph node activity has pulled back. But will that last?
What I now know is this.........doctors don't always know what to do. They can't know how a specific patient will react to treatments and they do their best (whatever that is at any given time). I sometimes wish I didn't question so much or feel the need to research and make all the decisions, but that is who I am. I do think that being an oncologist must be extremely hard because there are so many variables and unknowns. Always advocate for yourself. Change doctors if the ones you have aren't listening to you or if you don't feel comfortable and never apologize for expecting the best care you can get. And never let them dismiss you or what you're experiencing. I think doctors and nurses can become hardened to their patients (perhaps they must) but this is YOUR experience and you should trust how you feel.
While in the hospital we were in a consultation for my husband with an internist who had not seen my husband but of course had his chart. We were explaining his symptoms, meds, etc. and the doctor asked if I was a nurse. I thought they were confused and didn't understand I was his wife and they said they knew I was his wife, they just wondered if I was a nurse. I was amused..........I've spent so much time on my cancer, his cancer, (my sisters and step father's cancer) and various other caregiving tasks.........I now 'play a doctor on TV'.......ha ha. Hugs and Good Wishes to all.......