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Topic: 10 years out. I no longer trust my MO. What would you do?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 9, 2019 01:01PM

Texas357 wrote:

OK, so my first medical oncologist retired shortly after I finished chemo and rads. I was ready to kick him to the curb anyway because he didn't believe any diet or exercise recommendations were worthwhile to keep me healthy. And he kept getting my medical history mixed up with other patients.

I've been seeing the second MO for quite a while. But she doesn't follow current monitoring protocol. For example, she insists on my having a chest x-ray every year even though multiple oncology groups say they are useless. Even more to the point: ILC rarely recurs in the lungs! But she'll fire me as a patient if I refuse to get the x-rays. I hate the idea of extra radiation for no purpose.

So, yesterday I went to MD Anderson Cancer Center. One of the best in the country. Loved their approach and their informative attitudes. The problem? The doctors are in my insurance network but not the facility. I could conceivably run up $30,000/year in medical bills if I had a recurrence.

The only other option, since I don't want to stay with my current MO, is to use some guy whose website is plastered with pictures of him smiling at the side of local politicians. Very little about his care for patients!!!

What would you do?

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 9, 2019 01:41PM muska wrote:

Do you have a PCP and do you trust him/her? I would ask the PCP for a reference to a MO knowledgeable in BC. If you don't have or don't trust your PCP I would do more online research and pick accordingly.

I am not familiar with how the Texas system works but on the East Coast many docs affiliated with big cancer centers also practice in other locations and might be affiliated with more than one hospitals. I wonder whether MD Anderson oncologists might be available in outside clinics to follow patients like you that are not in active treatment or maybe some are affiliated with other hospitals that are in your network.

Good luck.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Apr 9, 2019 02:07PM kber wrote:

I'd move to MD Andersen.  I'm with them as well and I like them.  In the worst case scenario where you had a reoccurrence, maybe they could help with a referral or otherwise work with you.  Plus, check your out of pocket annual maximum.  It may be less than 30K, capping your out of pocket expenses lower.  For my insurance, it's 6K in network and 12K outside, but I have a high deductible plan coupled with a Health Savings Account.  

There is one medical professional who I like who is outside my network, and she is willing to work with me on her billing.  (I find mental health professionals sometimes don't go "in-network" as often, for whatever reason.)

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 9, 2019 02:11PM Texas357 wrote:

Muska: I don't have a PCP but my insurance company has an online search by both doctor and facility. That's how I know that my options are so limited.

Kber: I've got a message into MD Anderson to find out the approximate cost of staying with them. I'm certain about the $30,000 out-of-pocket expense for outside network. For in-network, it is $10,000. Big difference!



DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 9, 2019 02:13PM kber wrote:

Muska - very good point.  Both my MO and my BS are associated with their local MD Andersen center and have admitting privledges at two local hospitals.  One is "in network" for me and one is not, but if my in network doc  admits me, it's covered as in network.

My insurance also offers a patient advocate service.  I've used them extensively to push through approvals for tests, etc.  Texas - find out if your insurance company offers such a thing and see if they can step you through different cost scenarios.  They can also assist with finding a doctor as well.   Based on my recent experiences, I'd advise anyone diagnosed with anything more complicated than strep throat to make their advocate their first call.  My advocate has been a huge champion in getting treatment approved and navigating billing.  I literally credit her with being on the team that can take credit for saving my life - up their with my MO and BS.  

Dx 11/2018, IDC, Left, 5cm, Stage IIB, ER-/PR-, HER2- Chemotherapy 12/6/2018 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 5/27/2019 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 7/16/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 9, 2019 02:19PM Texas357 wrote:

One thing I've considered is moving to an internal medicine specialist, although that's not an ideal option.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 9, 2019 02:26PM Texas357 wrote:

Good suggestion! I'll call my insurance company and check out my MD Anderson MO's admitting privileges. Thank you!!!

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 9, 2019 08:51PM gb2115 wrote:

That's bizarre that they told you they would fire you from the practice if you refuse a chest x-ray. Patients refuse things literally all of the time, and in healthcare we just document the heck out of it and move on. I've only seen patients fired when they become abusive in some way to the provider or staff. Maybe prolonged failure to pay as well. That's just crazy.


Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Apr 10, 2019 01:11AM karen1956 wrote:

Texas, you have to have confidence in your doctor. Listen to your heart and switch. It is your right to turn down any tests that you do not want. I understand the $ issue - but you have to have trust and confidence in your doctor.

I'm lucky as my oncologist only treats breast cancer. At least for me, his protocol is to draw labs right before my appt with him, he asks questions each visit and does an exam. He only does scans if the patient is symptomatic or if the patient asks.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Apr 10, 2019 08:09AM Texas357 wrote:

Karen1956, that's the type of physician I'd love to find!


DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 10, 2019 12:19PM claireinaz wrote:

Texas, I have lost my MO who just retired. I put out a request in several different threads on the discussion boards asking for recommendations for a good Phoenix oncologist. I also called Mayo to book an appt as a new patient, but they aren't taking patients who just need follow up care. I did ask them to recommend oncologists who were, and who had good reputations, and they referred me to two local cancer centers. I made an appt to interview an oncologist at one of them next month. Others who live in my area have PMd me with some recommendations, too. You might simply cast your net a bit wider on these boards, and perhaps get some recommendations from members.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Apr 10, 2019 12:25PM Texas357 wrote:

Thanks for the tip, Claire. I have tried posting on a few more threads but got no good leads. I'll keep after it. But you bring up a good point. My husband is in ill health and sees several different local physicians. I'll also ask him to ask for referrals.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 10, 2019 06:23PM gb2115 wrote:

I've always felt that asking doctors you trust for referrals is a good strategy. In a geographic area they seem to know each other or know of each other, and they know who is good and who isn't.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Apr 13, 2019 08:34AM Texas357 wrote:

All great ideas! I knew that posting here would be helpful! Thank you!

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 15, 2019 07:58AM - edited Apr 15, 2019 07:59AM by Mavericksmom

My sister went to M D Anderson in Houston and received the best care! I agree with others here, go to the M D Anderson doctors and worry about a recurrence if and when it happens.

I just had surgery for a recurrence but I had been cancer free for 15 1/2 years so everything changed including my insurance! (Which actually changed 3 times and it was employer coverage with same employer!)

Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)

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