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Topic: Why is it so difficult to switch your medical oncologist?

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Mar 29, 2017 01:38PM - edited Mar 29, 2017 02:50PM by suzka1992

suzka1992 wrote:

When I was first diagnosed Stage I DCIS almost 2 years ago, like everyone, I was petrified. I quickly threw a "team" together based on referrals and recommendations and of course, who was in my insurance. I met with breast surgeons, and a radiation oncologist at her hospital, and went to the medical oncologist recommended by my surgeon and a friend, who is also in her network. I didn't need chemo before surgery and didn't need to meet with my oncologist until after my radiation treatment, 4 months later. When I met with her, I realized she was very clinical, no warm fuzzies from her, but that was okay, she came with a high referral. I was put on tamoxifen for maintenance and would see her in 4 months. Since that first meeting, I have met with her a total of 4 times. Each meeting was more difficult for me and I would leave in tears. She accused me of not giving her information, which I know both my husband and I gave her and she should have got from my surgeon, who is in the same network. She is on me about my weight but wouldn't give me any direction, I finally was referred to a private nutritionist that is in my insurance, from one of my other doctors. When I went to my family physician for a physical, who I have been seeing for years, I was told that they had not received any records from my "team". I called my MO, and they sent me her notes. After reading them, I noticed several discrepancies; the wrong medical history, surgeries that I didn't have, and surgeries that I did have, in the wrong year. What is really troubling is that she had me with a history of depression. I couldn't figure out why she kept telling me to go see my psychologist? Being compliant, I started seeing a therapist but we decided to hold the sessions due to my not really needing them. NOW, I have a history of depression because she had to give a code to the insurance company. Based on the ill fit, I would like to find a new MO. My gynecologist gave me the name of someone and she moved. I called the top cancer research hospital in the country and was told if I wasn't newly diagnosed, they can't see me, they don't have the capacity. I have called my surgeon, but now fear she will tell my MO because they are in the same network. I know I am very fortunate, my cancer isn't complicated, it was stage I, maybe I should just suck it up and continue treatment with her but I am now anxious to go see her. I am afraid if I tell her about the discrepancies in her notes, she will dismiss me.

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Mar 29, 2017 01:55PM - edited Mar 29, 2017 02:06PM by Goincrzy8

Dont SETTLE> I have issues with my MO, and I was orig Stage IIIC, she now says and is treating me for Stage IV. I called my insurance and got a nurse case manager. She has helped me to get the second opinion from someone out of my network. I am switching to a new medical group in April and I will be seeing the second opinion MO. I connected with him. MY orig MO is not for me. She only wants to see me every 4 -6 weeks, as I am only on hormone therapy.


I would definitely bring up discrepancies to your insurance , that is your medical record with incorrect information.

I am not sick, I have a few bad cells Dx 10/18/2016, IDC, Left, Grade 2, 12/12 nodes, ER+/PR+, HER2- Surgery 12/9/2016 Mastectomy: Left
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Mar 29, 2017 02:03PM - edited Mar 29, 2017 02:03PM by mustlovepoodles

well, that's weird. What if you moved across the country and needed a new oncologist? I changed oncologist in January because I just couldn't deal with my old oncologist business office anymore. I absolutely love her, but the business office was constantly dunning me for money which I did not owe. $93,000! I had to finally go to the state insurance commissioner to call off their dogs.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Mar 29, 2017 02:10PM ksusan wrote:

How crummy. IMHO, you need an MO you feel safe with and whom you trust. Perhaps call your local American Cancer Society for help determining who's in your network and has openings?

After you get a new MO you're happy with, you'll probably want to get those records corrected.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 29, 2017 03:00PM suzka1992 wrote:

That's just it. I feel that my case isn't complicated enough for her? But based on the last appointment, when she basically called me a liar, I can't bring myself to go see her. As a matter of fact, not to my detriment, I cancelled my last appointment (I just saw my gynecologist, will be seeing my radiation oncologist, annual mammogram/us, family physician, and my breast surgeon all within a matter of weeks, why see one more?) She dismisses my concerns and when she told me to lose weight, to go see the hospital's nutritionists, which I did call, and they wouldn't see me because I wasn't presently IN treatment. I feel that I don't belong to any category and that I just slip through the cracks. Like i said she is very cut and dry and while I'm okay with that, I don't need someone who is condescending, I feel she is not my advocate. Hopefully my surgeon will be understanding and get back to me with a name. I just don't understand why I am finding it difficult for a new MO to take on my case.

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Mar 29, 2017 03:32PM mustlovepoodles wrote:

Exactly right. You're going to be in a long-term relationship with your MO, so it needs to be a good one. I was right upfront with the 2nd MOs office about why I needed a new doctor. Perhaps you need to stress that you no longer have a MO.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Mar 30, 2017 11:51AM cive wrote:

You need a MO with whom you are comfortable or no MO at all.  You might try calling your insurance company and get a list of doctors that are covered in your plan.

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Mar 30, 2017 12:01PM pupmom wrote:

I switched my whole team with no problems. Maybe it has to do with your network and/or location.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Apr 2, 2017 12:35PM ICanDoThis wrote:

First, if you have only DCIS, you are stage 0. If you are Stage 1, then you likely have IDC. So, right there, this oncologist hasn't done a very good job. Is there another oncology practice in your area? I would call and ask for an appointment.

I stopped seeing any oncologists after 3 years. My oncologist was leaving the practice, but told me she didn't think a post-menopausal woman should be on tamoxifen for more than 2.5 years. I decided not to go on an AI (osteoporosis), so I simply didn't switch to another oncologist. 9 years out, and I am fine.

Talk to your gynecologist, and see if she/he would be willing to supervise your tamoxifen use.

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Apr 2, 2017 01:18PM wallycat wrote:

Where are you located?

I fired my first onco and had no problems asking my breast surgeon for a name of someone he worked with and trusted.

Is this ill-fitted onco in a network? are there others on her team? Who is her boss (yes, they all report to someone)? If they are getting information that is wrong, is this who you want to treat you? You have every right to SAY SOMETHING to her. Ask her, why is this date wrong? and you have me listed as having this and this surgery but that never happened....and on and on...so she understands why you are at odds with her. You can simply tell her (yes, you have hired her so you have the right to fire her!) that you don't feel she is taking you seriously enough and is there someone else in their office you could meet with next time.

Alternatively, you can phone your ins

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Apr 18, 2017 11:31AM Remali wrote:

That's awful suzka1992.  Having cancer is stressful enough, but then to have any doctor treat you that way.  I agree... do not settle, get rid of that doctor fast as you can.   I am going through a similar situation with my surgeon, I am in the process of consulting with other doctors to get a second opinion, and I will be asking for another surgeon... I have decided to leave the current medical clinic where the surgeon is at that I am not comfortable with, and I will be switching to another totally different clinic.  I hope that will be an option for you, too, if that is something you may want to do.  I agree that you also have the right to say something to this doctor, and you also have the right to have your medical record amended.  

I used to work in medical records, as a Coder, and yes, every patient has the right to ask that their medical record be amended to correct anything that may be inaccurate, contact your clinc's Release of Information department and ask who you can talk to about getting a form to have your medical record amended.  I have had to do that a few times, it's unbelievable what some doctors put in patient's med records, it can cause so much confusion further down the line when other doctors read the inaccurate information.  I have also called difficult doctors, I recently had a horrible encounter with my current surgeon (soon to be fired), so I picked up the phone, called his office and they put the doctor on the phone, I told him how uncomfortable I was with the inaccuracies in my med record, and I also told him I was very concerned about our communication problems.  Of course, not everyone may be comfortable confronting their doctor, but there are also other people you can contact at your clinic that can do that for you (at my clinic they are the Patient Experience Dept. or the Patient Advocate, you can check with your clinic to find out more). I called the clinic I go to, told them my concerns over this doctor, and asked that a formal complaint be made... you could also do that, too.  Or, they could just have a discussion with your doctor, to let them know there are serious concerns.

Dx 3/10/2017, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR+ Surgery 8/15/2017 Lymph node removal: Sentinel; Mastectomy: Right
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Apr 18, 2017 11:58AM WIhockeymom wrote:

I am in a similar situation. When I went through my first 4 rounds, I had a locum MO whom I felt very comfortable with. She was replaced with a new locum MO who I do not feel comfortable with. He would quickly discard my concerns about side effects. I took on chemo like a champ and voiced very few complaints about the side effects. I had horrible bone pain with Taxol. I would spend 5-6 nights writhing in pain, rather than getting much needed sleep. He would instantly blame the Neulasta and said "we told you to take Claritin", which I did. It took us weeks (and 2 more rounds of Taxol) before we convinced him it was the Taxol and not the Neulasta. By that point I had one round to go and chose to suck it up. Even if he couldn't do anything to help the pain, just acknowledging it was all we asked. The permanent MO is scheduled to begin in July. I just finished my last round of Taxol on April 6th and am currently receiving Herceptin every 3 weeks. I expect to be having a conversation regarding Tamoxifen with the MO very soon. I see him again in a couple weeks. I have read and heard many things about Tamoxifen that have me concerned. I know I won't feel comfortable voicing my concerns and questions about Tamoxifen with him. If he won't take me writhing in pain for 5-6 days seriously, I don't expect him to be concerned with sexual issues, etc. My dilema is do I change MOs now or should I just wait it out until the permanent MO is in place, or switch now to a current MO who probably already has a overloaded case load?

Dx 10/17/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR+, HER2+ (IHC) Surgery 11/9/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2016 AC + T (Taxol) Targeted Therapy 2/23/2017 Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 18, 2017 01:06PM Hopeful82014 wrote:

Wlhockeymom - The one thing you MUST do is call your clinic/hospital where you were treated by the 2nd locum and file a detailed complaint, followed up by a written complaint (when you have time and energy). It is dangerous for an MO to brush off patient's symptoms as this one did - not just cold and unsympathetic, but dangerous. He obviously needs additional coaching before he becomes any more set in his ways of dealing with patients.

If you don't feel comfortable discussing your concerns re: tamoxifen with your current MO, is there a clinic nurse or nurse navigator with whom you could speak? She might be able to see you through until the new MO comes on staff.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-
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Apr 18, 2017 01:58PM WIhockeymom wrote:

Yes Hopeful8201, the nursing staff is wonderful! I am comfortable talking openly with all of them. As luck would have it, I needed to reschedule my next apppointment (they had mistakenly scheduled me for 2 weeks and not 3). My current MO is not available that day so I was asked if I was ok seeing another provider. Of course I am! So my next appointment will be with another provider so I'll get a chance to meet another MO and can decide if I want to stay with him. My husband has worked in the medical field for years and was not impressed with the locum MO. I suspect he'll be on board with filing a complaint.

Dx 10/17/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR+, HER2+ (IHC) Surgery 11/9/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2016 AC + T (Taxol) Targeted Therapy 2/23/2017 Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 18, 2017 02:53PM Hopeful82014 wrote:

Wlhockeymom - How fortuitous! I'm so glad you'll have a chance to 'audition' another MO, as well as that the nurses are helpful. Good luck with it all.

Dx 2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-

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