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Dr. MisDiagnosis

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kodi

Junior Member
What is the name of your state? New Hampshire

Last month I asked if my Primary Care Dr. had any right diagnosing me with Brain Cancer before a speciality read the MRI and CAT. He was dead wrong.. I have a Pituitary Macroadenoma.

Your reply was fair.. unless there is any harm by his diagnosis (though wrong and without speaking with a specialist) , I can't claim malpractice.

Here's the follow up question: Just got off the phone with the same Primary Care Dr. He knows (From 3 specialists and 2 MRI's .. I have a Pituitary Macroadenoma .. Which by the way due to medication is almost gone!) I told the PRimary Care Dr. to take off all statments listing Brain Cancer from all my records as it's not Brain Cancer... His reply: I'll change my notes .. but it is still a form of Brain Cancer.. I told him, I can't even get life insurance with Brain Cancer listed... His reply: " Franky, I doubt you will ever be able to get Life Insurance again anyway!

Can he link Brain Cancer with a Pituitary Macroadenoma??? If so How??

Don't I have some recourse.. Other than just dumping this Dr.?

Thank you very much for your opinion.....
 


rmet4nzkx

Senior Member
It is a matter of semantics. It is a tumor. There are malignant and benign tumors, people can die from benign tumors. You pcp can amend the record, they cannot delete the reference to cancer since you indeed had a tumor. The precise nature of which is in your records. You can write yo an amendment with your statement to be included in your record, this is allowed under HIPAA.
 

ellencee

Senior Member
The pituitary is a gland.
An adenoma is a neoplasm of glandular epithelium.
A neoplasm is a new formation of tissue, as a tumor or a growth. It serves no useful function but as it grows, it grows at the expense of the healthy organism.
A benign neoplasm does not spread through infiltration or metastases.
A malignant neoplasm infiltrates tissue, metastasizes, and often recurs after attempts at surgical removal.
A benign neoplasm can be reduced in size with medication.
A malignant neoplasm can be reduced in size with medication.

kodi
What proof do you have that this large/long pituitary adenoma is not a malignant neoplasm? What proof do you have that the pituitary gland is not damaged and you will suffer no recurrence, no pituitary deficit willl affect your health and your life expectancy?

Why not do a web search for physical conditions that prohibit the ability to gain life insurance independently; life insurance through an employer or as the spouse of an employee is less likely to be denied all together (for those with non-insurable conditions).

EC
 

kodi

Junior Member
New Hampshire
EC Thank you for the thoughtful and knowledgable reply. I guess I will just get the written records from my specialists (the director of the Pituitary wing at Mass General is my surgeon if surgery is needed) stating the Pituitary Adenoma is 100% Benign.
What is really bothering me is I feel my PC Dr just does not want to be supportive and he insists I have a form of Cancer... I can address that issue OCT 3rd when I return to Mass General but it just bothers the heck out of me (this Cancer label). My PC even asked me last month when the results of the MRI were in and it was not brain cancer.. rather a Pituitary Tumor ... The PC asked me if Pituitary Tumors are rare as he never heard of them... (????)

Thank you very much for all your help and making me feel OK for asking my questions.
Kodi
 

rmet4nzkx

Senior Member
You continue to post the same question more or less and don't seem to get it.
https://forum.freeadvice.com/showthread.php?t=272240
You can have an amendment put in your record, but the objective clinical record will not be affected. A tumor is still a tumor with all the implications that go with it, you have had good results with non surgical treatment and the surgeon believes it is benign, that will be a part of the record, no matter what you want added.

Even though don't agree, your tumor still falls under the classification of cancer, however it may be benign.

Several things are true that may seem to contradict each other to you, that is why you were advised to research your condition.

Acromegaly is a rare disorder as your PCP stated because most tumors are MICRO or very small <10mm and may produce no symptoms. Upon random autopsy 25% have evidence of small tumors, smaller than yours, tumors as large as yours are rare and usually require surgery and follow up care with an endocrinologist. The onset of acromegaly is insidious and seemingly benign, so the signs and symptoms are often ignored or are associated with other more common causes. There was some reason for your PCP to order a MRI. By the time an acromegaly patient sees an endocrinologist for diagnosis and treatment, the signs and symptoms have already become very distressing and in some cases permanent. But your PCP picked up on the symptoms and ordered the MRI without having to send you to an endocrinologist, this may have resulted in more rapid treatment. Have you seen an endocrinologist yet?

According to the literature, Acromegaly may also lead to a risk of premature mortality, more than likely this is what your PCP referred to in his prognosis, which at the time was based on the findings available, that risk still exists. Early diagnosis and appropriate therapy may lead to reversal and/or prevention of these long-term consequences. You had a brain MRI performed which revealed the tumor and confirmed the diagnosis. In most cases of acromegaly, when a pituitary macroadenoma (greater than 10 mm) like yours is found, this usually means you had other symptoms, some of which may affect your risk and prognosis.

Surgery is considered a rapid and effective treatment. The surgeon reaches the pituitary through an incision in the nose and, with special tools, removes the tumor tissue in a procedure called transsphenoidal surgery. You have not had surgery. The goal is to remove or debulk the tumor, that means that it may not be removed entirely and obviously a biopsy would be done to determin if the tumor is benign or not. Success of surgery depends on the size and location of the tumor, and the experience of the neurosurgeon. For example, surgery is more successful with a microadenoma (a tumor less than 10 mm in size) compared with a macroadenoma (tumor greater than 10 mm in size) the type you have. Overall, 60% of patients have normal GH and IGF-1 levels following surgery. With an experienced surgeon, complication rates following surgery are very low. This is why you must also see an endocrinologist.

Medical Therapy for residual disease following your initial treatment is going to be necessary, so this is not a done deal. Hopefully as you become educated some of your distress will ease.

I hope this helps explain why the different terms are used.
 

ellencee

Senior Member
Kodi
I want to clarify the amending of your records (primary MD). You may only request to make an ammendment. You are not guaranteed the right to make an amendment, add a note, etc., but are only guaranteed the right to request amendment and to receive an explanation of why your request is not to be honored, if it is not to be honored.

If this were happening to me, I'd find another primary physician. I want a primary physician who is supportive of the diagnosis and treatment plan per the specialist. I'd also want a physician who would see to it that no misinterpretation of the clinical picture could be used/misued to preclude my eligibility for any type of insurance. That being said, I doubt you can get any life insurance at this point because of the still yet-to-be-determined effects of this adenoma. If you currently have life insurance or health insurance, do not let these policies lapse.

Best wishes,
EC
 

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