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@vickiekersch

I had a second opinion a couple of years ago with an entirely new cancer clinic because I felt my oncologist was not listening to me when I told him about the side effects of Tamoxifen I was having. Then, after advanced stage osteoporosis, a TIA, and many other problems with Tamoxifen, and finally showing labs of post-menopause, he switched me to Arimidex, but it was a nightmare and a fight. I went to speak with this other oncologist, liked her a lot. She’s a researcher and a front runner for finding vaccines and other cures for breast cancer. Not that my current oncologist and cancer clinic is not a research clinic, it is, and he tells me all the time about all the research being done on breast cancer. However, he doesn’t seem to really actively listen to me. What triggered me into re-thinking again about changing back to this first 2nd opinion again is last month I went back to my oncologist still having side effects from Arimidex, but I never thought I would hear him tell me he was recommending taking me off at my 5 year mark (April 2020) without discussing it with me first, he just said, he’s stopping it in 1 year! Previously, he wanted me on something for 10 years, I had 1 very large IDC tumor and 2 DCIS Satellite tumors. My tumors were all considered highly aggressive and “unfavorable” on the oncotyping scale. I also have a spinal cord injury so my side effects with a nerve pain are intensified. I discussed this with my therapist and she was shocked he is just going to stop it with me, the patient, giving any input. The reason I didn’t move over to my 2nd opinion is the Clinic is about 1-11/2 hour drive from my house. The other one is 15-20 minutes from my house. They both are considered in the Top10 of the Best Cancer Clinics in the US. My mom was meeting me at all my appointments, scans, etc. She never missed an appointment. But, she couldn’t drive freeways and told me if I switched to the oncologist that was an hour way, she could no longer be there for me. So, I stayed. I needed my mom for support. She was a 36 year cancer survivor. She was my hero. She just passed away this past July from aggressive pancreatic cancer so now my hero is no longer needing to drive the distance and I am once again in the position where I am thinking about moving over. I’m getting close to not needing them as much, or so I thought. Until I had a Prolia infusion. Then I started having shooting skull pain so I called the oncologist and he scheduled me for a mri but he does not think it it is the Prolia but more the SCI. But, if it is the cancer recurrence, then I will decide if I want to switch oncologists. I also found out our oncologists rotate specialties. Mine, who I was assigned to as a breast cancer specialist in 2014, is now listed as a neck and throat oncologist (something like that), but he kept some of his breast cancer patients. I felt he was very wrong and insensitive to me when he told me he was taking me off a medication that is supposed to prevent recurrence when he knows I am devastated and going through the grieving process with losing my mother to a horrible and painful cancer death. So, yes, once again, I am seriously thinking about switching oncologists.

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Replies to "I had a second opinion a couple of years ago with an entirely new cancer clinic..."

I do not know what to do. My Onc sent me for CT scan with contrast because my ca 27.29 was 41.9 and the high figure for that is 40 on the test the cancer place did. First, the CT scan experience was a nightmare. They could not find a vein for the contrast die. I had already expressed to the Dr that I was concerned because I had bilateral breast cancer with nodes removed under both arms and that I was afraid of getting lymphedema. Obviously she did not care. After poking around in my hand, I told the tech to stop and she did immediately. Then a nurse called the Dr and the technician from H*** came in and only told me his name, Keith, and would not answer when I asked who he was. He then took the tourniquet band and snapped it a couple of times between his hands and told me he could tie the tightest tourniquet in the hospital. I said no, I am scared to death of getting lymphedema and the tourniquet cannot be tight and should not be on longer than 2 minutes. He said he had seen lymphedema and I really did not want to get that and how horrible it was and then proceeded to put on the extremely tight tourniquet and start feeling my arm trying to find a vein. I kept saying that it was too tight and it could not be on longer than 2 minutes and he kept saying "I know, I know" and continued feeling my arm. I do not know for a fact as I could not see a clock, but that tourniquet on for way over 2 minutes….my thoughts were it was 10 or more minutes and he never loosened it. I came out of there traumatized! The following day, I called the hospital where the test was done (it is a trauma center….now I know why!!!! they traumatize the patients) and told them that they needed to find someone to talk to me and that I would be there in an hour. Well, that worked out. The two people that interviewed me were supervisors and this Keith guy that did the tourniquet stuff is also a supervisor, but he was not there. No one of importance talked to me and they kept putting Keith on the phone when I called to tell them that I was coming. I invited him to come and talk with whoever I got and to bring his elastic band and I would put it on him as tight as I could get it and let him sit for a while and see how he liked it. The fact is that he has really jeopardized my arm and now I am even more scared than I was before. In retrospect I should have told the Onc that I did not want the test with contrast, but as the patient I thought I was doing the right thing for myself. Incidentally, I had IDC stage one…no lymph node involvement. It specifically says on the report that the ca 27.29 is intended for use in monitoring: 1) disease progression and/or response to therapy in patients with metastatic disease, and 2) disease recurrence in patients treated previously for stage II and III breast carcinoma who are clinically free of the disease. Neither one applied to me. I am not liking this Dr at all and question if she knows what she is doing. I also question why the ca 27.29 seems to be a routine blood test when going for cancer treatment no matter what type of breast cancer or stage. My cancer a year ago and have two Oncs since then. Part of me is afraid to bounce to another, but I do not want to stay with this one. I truly think this is a guessing game for most of these Drs and wonder if there is any place where you can get good, honest treatment with someone who knows what he/she is doing. If you look at some of my other posts, you will see why I left the first Onc. I am beginning to think that we are just guinea pigs and $$$$$$ for oncologists/cancer centers.

I just copied this post to you from the one I sent to Farmgirl1556.

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