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!
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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.
The 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.
I 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.
If 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
Hello @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.