Dismissing doctors: How do you find a doctor who can help?

Yep, I dontbwant to take aromatase inhibitors because of the associated speedier loss of bone density and frequently elevated cholesterol. (Which I already have despite blood diet and I cannot take statins.)

I go to Cleveland Clinic so have good physician team behind me. And asked about immunotherapy but didn't pursue it as I got the impression from reading studies and protocols that it's primarily for very high risk situations. I thought that it could be something easy like a pill compounded just for me but it's very sophisticated and involves a lot of science and tweaking of the right mix from what I can understand. The side effects of an aromatase inhibitor are less of a concern than creating the right cocktail. Oh, and the immunotherapy that to suppress cancer may leave one immune-supressed in general for a bit. I wouldn't bet serious money on my understanding of it but 'twas what I think that I understood :‐)

The genetic testing was very reassuring. Its not a promise that my risk of recurrence is only 5% but I talked with a lot of people at Oncotype, including a senior scientist when I had more questions, and feel pretty comfortable. In a sense taking an aromatase inhibitor might (I stress might) reduce the recurrence risk by 40%. But the actual percentage point reduction from 5% to 3% is only 2 percentage points.

Currently 100% of the tortoiseshell cars in this house are on the terrace chattering at a bluejay and pretending to be scary. Since there is only one cat in this household, and a bit of a bluffer whom no bluejay takes seriously anyway, that 100% means nothing to the bird. 😏

RE: Dismissing doctors
Different issues but similar experience. I'm sorry if this is long or hard to understand.

I was very ill as a child. Lot's of time at Seattle Children's Hospital. When I was in my 30's I wrote and got my medical records (from Children's - more on that later). As an adult I had unusual medical issues that multiple Drs could not diagnose. Many time I ended up with the wrong treatment. Example: I got a massive infection in my leg. I was swollen up from my ankle to my groin. I don't turn red when I get an infection so it got diagnosed as a torn meniscus. I said it's up into my groin, it's hard to urinate. The Dr said sometimes the swelling goes up instead of down. I went home and did a poultice with a heating pad for a couple days. The swelling began going away. Dr drained the fluid off my knee. Dark brown with a very high white blood cell count. The antigens had been killed with the heat - but he didn't say that. They did surgery anyway. That left me with knee problems where there hadn't been any. I have lots of these medical stories. Over and over again, pages of treatments that were not supported by my symptoms. If I pointed out discrepancies I was usually told "it's both". I'm now old enough to have grandchildren and have, until the last 8 months, no diagnosis.

About 3 years ago I started becoming exhausted and was less and less able to function. That leads to a year ago when I found those old medical records in the bottom of a box. I had never read them before. I began reading them and making appointments with every type of doctor I had been to as a kid - and, I sent a copy of the records to each. Eventually I got an appointment with an Endocrinologist (I researched him and thought he was pretty good). He put me through an extensive round of tests. We - it's a team effort - got a hit - hypogammaglobulinemia. Some of my doctors dismissed it - I dismissed them. The first medical person to tell me what that long word meant was a nurse (Lisa) that was in a different field, saw my chart and wrote out a long and very accurate directive for me. She was spot on. The Endo and Lisa helped me discover it was an immunology issue. (Later on, when I had begun treatment, Endo told me that he wasn't sure what was wrong but he read my records put me through every test he could think of.)

Getting ahead in my post, but a significant problem with immunology drs is that they are actually allergy/immunology and they treat far more allergy patients than immunology patients (my immunology Dr only takes immunology patients) - they can get the 2 disciplines mixed up in diagnosis. I thought back to Children's Hospital and called their immunology department for a referral. To my surprise they told me they accept adult immunology patients. I had to go through a number of additional tests (including a referral from my PCP) and was accepted as a patient. My first appointment was July 26, 2021. A lot more tests. I got a phone call on August 12, 2021 asking if I could come in on August 23rd when I learned I had a diagnosis and a treatment. I was diagnosed with CVID - Common Variable Immune Deficiency (a subset of hypogammaglobulinemia). I began treatment in September 2021 and am just beginning my 8th month. I infuse antibodies each week. I'm beginning to feel better. It is a lifelong treatment, but it was a lifelong journey to get to this point.

RE: Dismissing doctors
Different issues but similar experience. I'm sorry if this is long or hard to understand.

I was very ill as a child. Lot's of time at Seattle Children's Hospital. When I was in my 30's I wrote and got my medical records (from Children's - more on that later). As an adult I had unusual medical issues that multiple Drs could not diagnose. Many time I ended up with the wrong treatment. Example: I got a massive infection in my leg. I was swollen up from my ankle to my groin. I don't turn red when I get an infection so it got diagnosed as a torn meniscus. I said it's up into my groin, it's hard to urinate. The Dr said sometimes the swelling goes up instead of down. I went home and did a poultice with a heating pad for a couple days. The swelling began going away. Dr drained the fluid off my knee. Dark brown with a very high white blood cell count. The antigens had been killed with the heat - but he didn't say that. They did surgery anyway. That left me with knee problems where there hadn't been any. I have lots of these medical stories. Over and over again, pages of treatments that were not supported by my symptoms. If I pointed out discrepancies I was usually told "it's both". I'm now old enough to have grandchildren and have, until the last 8 months, no diagnosis.

About 3 years ago I started becoming exhausted and was less and less able to function. That leads to a year ago when I found those old medical records in the bottom of a box. I had never read them before. I began reading them and making appointments with every type of doctor I had been to as a kid - and, I sent a copy of the records to each. Eventually I got an appointment with an Endocrinologist (I researched him and thought he was pretty good). He put me through an extensive round of tests. We - it's a team effort - got a hit - hypogammaglobulinemia. Some of my doctors dismissed it - I dismissed them. The first medical person to tell me what that long word meant was a nurse (Lisa) that was in a different field, saw my chart and wrote out a long and very accurate directive for me. She was spot on. The Endo and Lisa helped me discover it was an immunology issue. (Later on, when I had begun treatment, Endo told me that he wasn't sure what was wrong but he read my records put me through every test he could think of.)

Getting ahead in my post, but a significant problem with immunology drs is that they are actually allergy/immunology and they treat far more allergy patients than immunology patients (my immunology Dr only takes immunology patients) - they can get the 2 disciplines mixed up in diagnosis. I thought back to Children's Hospital and called their immunology department for a referral. To my surprise they told me they accept adult immunology patients. I had to go through a number of additional tests (including a referral from my PCP) and was accepted as a patient. My first appointment was July 26, 2021. A lot more tests. I got a phone call on August 12, 2021 asking if I could come in on August 23rd when I learned I had a diagnosis and a treatment. I was diagnosed with CVID - Common Variable Immune Deficiency (a subset of hypogammaglobulinemia). I began treatment in September 2021 and am just beginning my 8th month. I infuse antibodies each week. I'm beginning to feel better. It is a lifelong treatment, but it was a lifelong journey to get to this point.

Among the many facets of your story that are of value to others too, imagine how the journey would have gone if your medical records hadn't been stashed away and you found them. I now keep a hard copy and digital version of all medical tests, prescriptions, etc., for family including pets. Some data are also charted or kept on spreadsheets. It's saved a lot of time and expense and avoided duplicate tests when data somehow went awry or was entered wrong.

Hello, @artscaping thank you so much for the reply! I have been to over 16 doctors in the past 2 years
Some say I have fibromyalgia some say we don’t know what you have some think it’s an autoimmune. I have been on different medications of fibro but they don’t help. I have tried swimming, yoga everything I have been recommended, changed my diet but I’m still in pain. Yes sometimes the pain becomes less but most of the time the pain is at a 7. I give time to my son as I don’t want to neglect him and let my illness win. My only complain with the doctors is that why don’t they test me for everything possible which could be causing these symptoms. I have started to get bald patches on my scalp with horrible dermatitis it’s been 1 year now and it’s not going away.
My main problem is pain in my thighs, upper arms, neck, shoulders and my face- cheeks.
I don’t know what it is I have and how I will ever get diagnosed properly.

@callalloo That is a great suggestion! When you get those questions from doctors about when something began, you can just look at your notes! It also records the "big picture" and you can find a clue there that could be important information for the future.

@callalloo, hi there. I was wondering if you've ever had ultrasounds of your legs. When you have a DVT it definitely hurts. I had what they call a chronic DVT in my left calf. My d-dimer was high. I could tell from the ultrasound techs look that something was wrong. It's really weird but ive always had pain in my left leg from when I was a teenager. When I would have my period my left leg would just ache. Then last year they finally found it. It took 2 separate ultrasounds to find it. I started on Eliquis. I'm 70 btw. I know you are full of inflammation. It sounds like fibromyalgia. I also have that and diabetes, plus osteoarthritis. Doctors don't want to prescribe pain meds. At least that has been my experience. They have tested for lupus?
The last few years, I give my Dr one year to help me, or openly be proactive with me, then I move on to another Dr. I'm tired of being pushed aside and not taken seriously about my symptoms. I do my own research. With the advent of the internet it is easier. Remember, you are your own best friend. Your Dr works for you, not the other way around. If you don't think he's working for you, you can move on. Best of luck to you and God bless. Judy

@callalloo, hi there. I was wondering if you've ever had ultrasounds of your legs. When you have a DVT it definitely hurts. I had what they call a chronic DVT in my left calf. My d-dimer was high. I could tell from the ultrasound techs look that something was wrong. It's really weird but ive always had pain in my left leg from when I was a teenager. When I would have my period my left leg would just ache. Then last year they finally found it. It took 2 separate ultrasounds to find it. I started on Eliquis. I'm 70 btw. I know you are full of inflammation. It sounds like fibromyalgia. I also have that and diabetes, plus osteoarthritis. Doctors don't want to prescribe pain meds. At least that has been my experience. They have tested for lupus?
The last few years, I give my Dr one year to help me, or openly be proactive with me, then I move on to another Dr. I'm tired of being pushed aside and not taken seriously about my symptoms. I do my own research. With the advent of the internet it is easier. Remember, you are your own best friend. Your Dr works for you, not the other way around. If you don't think he's working for you, you can move on. Best of luck to you and God bless. Judy