How many of you have changed oncologists because you did not like the?

Posted by sandyjr @sandyjr, Wed, May 22 6:57pm

I found out I had stage 1 breast cancer last April. My former oncologist (this was my second time around…first BC in 2007) had retired. When I called the number for the group he belonged to, another group had started and was using that number. They said the former group no longer existed. I went with an oncologist with the new group/cancer center. It was later that I found out that not all the doctors from the old group had gone over to the new group. Well, the doctor I chose in the new group was a real jerk…we had words and I left and went to another practice. Well, I am wondering if I have again made a mistake. I have been with the new doctor since the end of January and in that amount of time I have been sent for a nuclear bone scan based on the alp and calcium readings on my bloodwork…these levels were just over the top limit for each. Well, I just went for bloodwork and my ca27.29 tumor marker was 49. The doctor called me and said she wanted a chest, abdomen and pelvic CT scan. I told her I wanted a second tumor marker test done which she grudgingly agreed to and 3 days later the level was 41.9. She still wanted the CT scan which I am having tomorrow. I am pretty scared. In addition the nurse that called to instruct me on the CT scan told me vague and missing info and when I called to make sure I had it right, she insisted she told all the right stuff to do. Then I went to pick up the barium yesterday and they asked me about blood work which I thought they had at the hospital associated with the cancer center as the doctors office had set it up. They did not have the blood info at the hospital but said I could have it done right then. I just had a CMP last Monday so the doctor should have known if I needed more blood work. Right then I told the person doing the paperwork with me that if they did not have the right bloodwork I was not getting it done and I would not be having the chest CT scan. I took the barium and left. The hospital person called me on my way home and told me the blood stuff was in order. Then tonite I was reading the instructions for the barium and the paper with that said to preregistration to call this number. I did and was told they do not do that anymore. They also told me I had to go to admitting when I get there tomorrow. WTH?! In Feb when I went for the bone scan I went right to radiology. Well apparently not this time. There are just too many inconsistencies and lack of communication. Also, I am wondering if I am going to continually have to go for tests. My cancer was simple stage 1 IDC, lumpectomy, radiation and anastrozole. There are too many “mistakes” already and I am wondering if I should move on. Has anyone had similar experiences and changed oncologists more than once. This probably does not app to people who have moved.

Liked by cindylb

@sandyj
You are sure getting the run-around. Hoping things start going better soon for you.

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Your health and well being are too important for you not to be comfortable with your doctor and their practice. As hard as it is when you're scared, frustrated and overwhelmed by the cancer diagnosis, you must feel confidence in your doctors.
I started out with LCIS – Stage 0 breast cancer essentially with an oncologist I loved. Then my insurance changed and I got an oncologist who suggested I just 'watch that lump' that I'd found in my breast…..not….'let's take a look and make sure what this is'. Well, I changed oncologists, had the tests and I had Stage 1 invasive Lobular. Had I waited I might have been at Stage 2, 3 or worse. I then proceeded with bi lateral mastectomy, etc. with the second oncologist and changed when this same oncologist walked out of a meeting with my husband…..right in the middle of his appointment for Stage 4 terminal cancer to see 'a really sick patient'……..yup……….there are some less than stellar doctors out there. My husband and I now share the third oncologist and he's great.
If you choose to stay in the practice or with your doctors it's important that you ask them to explain everything they are doing for you, in detail. That way YOU can make an informed decision. If they are not doing that and you don't feel comfortable, those doctors are NOT doing their jobs.
Do you have someone who can go with you to appointments to take notes, ask question and with whom you can bounce ideas off of? It's hard to understand and hear all the information when you are the patient who also has to process the difficult news.
Hugs

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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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I also had stage 1 with rad, lumpectomy and now on anastrozole.. My once has made a couple mistakes too and feel I’m not receiving the best care..( ordered blood work and never sent it off)😝 An considering looking for a new one too…. by the way … r u having side effects from The anastrozole?? I seem to have headaches and some anxiety 😝

Liked by trixie1313

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@farmgirl1556

I also had stage 1 with rad, lumpectomy and now on anastrozole.. My once has made a couple mistakes too and feel I’m not receiving the best care..( ordered blood work and never sent it off)😝 An considering looking for a new one too…. by the way … r u having side effects from The anastrozole?? I seem to have headaches and some anxiety 😝

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@farmgirl1556
Hi Farm Girl – I started out with Stage 1 which turned into Stage 2 after pathology from lumpectomy came back. Then had an MRI which found a second tumor – following that lumpectomy, the path on that one came back as Stage 3. I was placed on anastrozole and lasted a month. The headaches were just splitting. They gave me time off as I also went through 2 episodes of diverticulitis! I've now been placed on Femara (letrozole). However, a cousin has done well on anastrozole. She had headaches for about a month and then they went away. So everyone is different. We can only give the meds a good try. If you don't feel comfortable with your oncologist, see if you can get someone else. At the medical facility I go to, we are able to switch without any problem. The first oncologist I went to hardly talked and did not respond to e-mails too well so I chose another and so far, so good. All the best to you.

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@farmgirl1556

I also had stage 1 with rad, lumpectomy and now on anastrozole.. My once has made a couple mistakes too and feel I’m not receiving the best care..( ordered blood work and never sent it off)😝 An considering looking for a new one too…. by the way … r u having side effects from The anastrozole?? I seem to have headaches and some anxiety 😝

Jump to this post

@farmgirl1556, you may be interested in these discussions in the Breast Cancer group:
– Anastrozole – headaches, disequilibrium, and groin pain https://connect.mayoclinic.org/discussion/anastrozole-headaches-disequilibrium-and-groin-pain/
– Headache and Fatigue https://connect.mayoclinic.org/discussion/headach-and-fatigue/

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@farmgirl1556

I also had stage 1 with rad, lumpectomy and now on anastrozole.. My once has made a couple mistakes too and feel I’m not receiving the best care..( ordered blood work and never sent it off)😝 An considering looking for a new one too…. by the way … r u having side effects from The anastrozole?? I seem to have headaches and some anxiety 😝

Jump to this post

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.

As far as your question on anastrozole, I am not having much difficulty. I have heard and read of people who are having a horrible time with it. I may just be lucky so far. One thing that I think is helping me is that I am physically active and walk a lot. You could try that. My thought is that if there is discomfort, then the medicine is probably working. As far as anxiety, I think that is a given for anyone with a cancer diagnosis. Quite frankly I have been wild. I have not had headaches.

Thank you for responding to my post. I would suppose some people do not even realize they have bad doctors. I am going to be my own advocate whether the Dr likes it or not.

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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.

Jump to this post

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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