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Paraganglioma / Carotid Body Tumor Question
Hello. I was just diagnosed with paraganglioma and carotid body tumor. My doctor has referred me for a biopsy prior to referring me to Mayo Clinic. In my research, I have not found where Mayo's or any other site recommends a biopsy for this disease. I am also wondering if Mayo does recommend a biopsy, if they will want to do their own. So is having a biopsy done locally a) medically necessary and/or b) waste of time & money if Mayo will just do their own? I appreciate any knowledge or experience anyone may have on this issue. Thanks!
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I'm not real clear on the grading system, but was told that my grade is 3a. That was based on the first tumor, which was found on my neck in March. It was diagnosed as a carotid body lymphoma. Then I had a PET scan which showed tumors throughout my body. The diagnosis was changed to B-cell follicular lymphoma. My blood pressure has been going up, too. I have had a slight loss of hearing in one ear, which could be caused by pressure on the nerve. Otherwise I feel fine. The oncologist said I do not need surgery, and that 3 chemo sessions should put the lymphoma into remission. I wish you well, and pray for your complete recovery. We are in God's hands.
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1 ReactionThe treatments will be at 2 week intervals, a total of 3 treatments. There will be two PET scans along the way, to see how effective the treatment is. I'm guessing that there will maintenance treatments as time goes by. I'm basing that on the oncologist's request for a permanent, under the skin, IV portal. I will be getting that installed on June 5, then begin chemo the next day.
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1 ReactionI don’t recall any kind of a grading system. The carotid artery is Y shaped and my scans showed that my tumor was sitting in the “V” of the Y. However, during surgery it was discovered that my carotid artery and vagus nerves were switched. The tumor had compressed the nerve so that it was splayed and had the Y shape on the scans. They had to leave me on the table and go talk to my husband. We had talked about the risks of the CBT but nothing about the vagus nerve such as possibly needing a feeding tube, losing my voice… As far as docs having a sense of humor: My husband was a mess and he asked the surgeons what they would do if it was their wife. My ENT said that he was recently divorced so probably not the one to ask ha ha! I am glad he chose removal. I would have been pretty mad if I had woke up and it was still in my neck. I have had a few challenges but pretty minor in the big scheme of things.
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1 ReactionIf your PET is not a DOTATATE 68 you might not get a correct answer to you tumor locations and size. I know MD Anderson is a good medical system. I highly recommend looking for Clinics that focus on NETS. Because I use Mayo Rochester I can’t say enough about how they have helped me but there are others groups that do amazing work. Do your research. Don’t just accept what is being told you. NET’s is not easy. The good thing is we have hope because it’s so slow growing. I’m adding a link. https://youtu.be/Y_wrbckiBkI Watch this YouTube and you will get a great understanding of why this disease is so hard to diagnose and why I started this with the DOTATATE 68 PET scan. If your insurance does not cover this scan ask for help from the NET’s foundation. They won’t pay your bill but there are people who deal with just the insurance/ non insurance aspect of this disease. Good Luck Coach V. We all understand that vague feeling of NET’s. Runner V
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2 ReactionsHello @75hostagarden and welcome to Mayo Connect and responding to @coachv. I appreciate you sharing the video link. While I have not watched it yet, I know that Dr. Liu is a renowned expert in NETs, as are the doctors at Mayo Clinic. I especially like your comment, "Do your research. Don’t just accept what is being told you. NET’s is not easy." This is so true with NETs. I am glad that you sought treatment at Mayo Clinic, they have excellent NET specialists.
Please share, as you are comfortable doing so, a bit about your history with NETs. Were there symptoms that led to the diagnosis or were the NETs found incidentally?
Thank you !!!
Blessings on your recovery Sharik !!! Huge thanks to this group and to Mayo Clinic for hosting this. Even for non-patients. Information is power.
From my experience, these are never to be biopsied.
Welcome, @gabulawayo. Do you have a carotid body paraganglioma? I look forward to learning more about your journey.
Thank you, Colleen,
It is nice to have a connection with people on the same road. This journey can be very lonely, frustrating, confusing, and frightening.
I was correctly diagnosed, after I informed my family GP in Zimbabwe of the possibility, that the swelling on my neck was not mumps or lymph nodes. He had not heard of Carotid body tumors. Not unusual, I have come to learn. The dentist I worked with liked to say that most GP's knew nothing about the body from the neck up. 😉
My father had huge swellings bi-laterally from untreated CBT's, misdiagnosed, and an attempt had been made, years earlier to unsuccessfully, to remove one!
I had to travel to South Africa to have mine which was then 5cm removed. I later learned that this surgeon pioneered the procedure, removing the branch of the Carotid artery it was clinging to.
I had another on the other side removed when I was living in South Africa.
There were no follow-up treatments, observations, or checkups.
When I was living in Atlanta I felt the beginnings of another in my neck and, the ENT referred me to her professor as she felt it was not a CBT.
It was a Paraganglion encapsulating my vagus. They decided to remove it along with part of my vagus, paralyzing my vocal cords and leaving me with many troublesome side effects.
They did inform me that I had another growing on the other side of my neck, but rather than surgery, they advised targeted radiation, or I would end up with many disadvantages.
The Radiologist they referred me to had treated 5 patients in his 25 years.
It was the way to go and I think, how I will proceed with the new one I have growing on my vocal cords, or not treat it. This tumor is so slow-growing. Unless it is life-threatening, I could bide my time.
It is traumatic though, and I do understand this is common with rare diseases, that it is so difficult to find anyone to advise and treat patients. We have to spend so much time and energy trying to find someone to treat us. I have become the initial source of information for my family living in South Africa, who all have this, as well as our cousins on my father's side. We share information, war stories, symptoms, and, "Do you have this, did this happen to you after surgery, tell your doctor this," conversations.
My geneticist gave me a letter to pass on to my family about screening their children for this gene mutation. The Pheo Para alliance has a lot of information, but they can also only do so much.
Sorry for the long rant.
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