1. < Neuroendocrine Tumors (NETs)

Paraganglioma / Carotid Body Tumor Question

Posted by shanda @shanda, Feb 2, 2019

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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gabulawayo | @gabulawayo | Feb 5 8:13pm
In reply to @hopeful33250 "It's so great to get your update, @gabulawayo. I see that you are in the States..." + (show)
@hopeful33250

It's so great to get your update, @gabulawayo. I see that you are in the States now and looking for a medical team. If you would like a consultation at Mayo Clinic, here is a link with appointment information, http://mayocl.in/1mtmR63.

Will you continue to post as you look for a medical team and a follow-up plan?

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I will do.
I see Mayo Clinic is doing great things and, hopefully, I can go forward with them.

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fas | @fas | 5 days ago
In reply to @ristene "Shari, that's so great to hear that you are doing so well!!! Did you have genetic..." + (show)
@ristene

Shari, that's so great to hear that you are doing so well!!! Did you have genetic testing done? I am honestly too scalpel shy to get a surgical opinion. Right now it seems that radiation is going to be the best option. I've been told by many doctors now that surgical intervention is not an option and could be fatal given the vascular nature of the tumor location along with the nerve involvement. I'm gearing up for evaluation at the SCCA proton beam radiation therapy center in Seattle WA for evaluation with the founder of the center. It is the closest proton beam radiation center near to MT in a 6 state radius. A 7 to 8 hour drive from where I currently reside. The literature for paraganglioma treated with octreotide shows promising tumor size reduction by 3-11%. This paired with the proton radiation is the most recent treatment option that has been recommended. I will continue to see Dr Pacak and his team at the NIH every 3 to 6 months after my treatment start. I do feel I am in great hands there. Given that I am SDHB ( B for Bad) I am at high risk for secondary malignancy and will need continued supervision for the rest of my life. This is my new "normal". I am not going to say it has been an easy adjust especially because my husband and I were trying to have another child for 7 months before I found out. We have a 4 year old daughter who is the light of our lives. Her genetic testing is pending at the NIH as we did not know prior to having her. The sooner we know the better for disease monitoring and outcomes. The mutation is heterozygous and there is a 50% chance that she has the mutation. Most of my time has been spent researching, reading and deciding what my next move is going to be. I appreciate your feedback!
Best wishes,
Ristene

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Hi, I know this is an older post but I have just been diagnosed with paraganglioma and live in the Seattle area. I am at the beginning of this journey and haven't yet spoken with surgeons regarding taking it out immediately, not at all or having radiation. Did you move forward with the proton radiation? Did it reduce the tumor? Who did you work with? If you are willing to share this with me it would be so helpful 🙂
Thanks so much

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2 replies
elgie17 | @elgie17 | 4 days ago
In reply to @fas "Hi, I know this is an older post but I have just been diagnosed with paraganglioma..." + (show)
@fas

Hi, I know this is an older post but I have just been diagnosed with paraganglioma and live in the Seattle area. I am at the beginning of this journey and haven't yet spoken with surgeons regarding taking it out immediately, not at all or having radiation. Did you move forward with the proton radiation? Did it reduce the tumor? Who did you work with? If you are willing to share this with me it would be so helpful 🙂
Thanks so much

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I also have a paraganglioma - carotid body tumor in the right part of my neck. The surgeon is discussing with the radiologists on the artery involvememt. It looks like its completely encased by the tumor 🙁

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2 replies
gangcarotid1 | @gangcarotid1 | 4 days ago
In reply to @elgie17 "I also have a paraganglioma - carotid body tumor in the right part of my neck...." + (show)
@elgie17

I also have a paraganglioma - carotid body tumor in the right part of my neck. The surgeon is discussing with the radiologists on the artery involvememt. It looks like its completely encased by the tumor 🙁

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That's been my fear all along. I was not as enthusiastic about Watchful Waiting as my drs were, even though they all believe it's small and benign. As the ENT said, "it's not going to get smaller, you're in great health, and you're not going to get younger". (I'm 68; w/b 69 when I see them again in a couple mos. I agreed to putting it on a back burner til Spring 2025 when they simultaneously found 2 tumors on a kidney (which were successfully removed in Oct.)
Now, I've been experiencing pain in my ear and just below my ear non-stop; was intermittent last Aug, and not as painful as it is now. Anxiously awaiting April appt!
@elgie17 please keep me posted w your appts! Where are you doctoring at? I'm going to Mayo Rochester (we live in Idaho).

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fas | @fas | 4 days ago
In reply to @elgie17 "I also have a paraganglioma - carotid body tumor in the right part of my neck...." + (show)
@elgie17

I also have a paraganglioma - carotid body tumor in the right part of my neck. The surgeon is discussing with the radiologists on the artery involvememt. It looks like its completely encased by the tumor 🙁

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@elgie17 I haven't yet met with any surgeons as I was just diagnosed three days ago. I am hoping to meet with two different surgeons next week, but hard to know how quickly I can get in. Usually it's 3 months to get an appointment. My doctor has marked urgent and I do think mentioning that it is paraganglioma might help to get in quicker. Where are you having treatment, is your surgeon a specialist in paraganglioma and if so, how did you find them?
Appreciate any advice and information you have on finding them right surgeron.

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1 reply
fas | @fas | 4 days ago
In reply to @fas "Hi, I know this is an older post but I have just been diagnosed with paraganglioma..." + (show)
@fas

Hi, I know this is an older post but I have just been diagnosed with paraganglioma and live in the Seattle area. I am at the beginning of this journey and haven't yet spoken with surgeons regarding taking it out immediately, not at all or having radiation. Did you move forward with the proton radiation? Did it reduce the tumor? Who did you work with? If you are willing to share this with me it would be so helpful 🙂
Thanks so much

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@ristene Hi, I am new to this forum and sent you a reply but I don't think I tagged you! I am curious about the proton radiation, did you move forward with this? If so, what were your results? Would love to hear if you are willing to share.
Thanks

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elgie17 | @elgie17 | 4 days ago
In reply to @fas "@elgie17 I haven't yet met with any surgeons as I was just diagnosed three days ago...." + (show)
@fas

@elgie17 I haven't yet met with any surgeons as I was just diagnosed three days ago. I am hoping to meet with two different surgeons next week, but hard to know how quickly I can get in. Usually it's 3 months to get an appointment. My doctor has marked urgent and I do think mentioning that it is paraganglioma might help to get in quicker. Where are you having treatment, is your surgeon a specialist in paraganglioma and if so, how did you find them?
Appreciate any advice and information you have on finding them right surgeron.

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I live in NY. My surgeon is at MSKCC. Mine was discovered 3 years ago. I used to see a surgeon from NYU. He had me on watch and wait. The para showed growth on last MRI. The surgeon at MSKCC is going to talk to the radiologists regardhimg artery involvement. As it shows that it has completely encased it. I am terrified. where do you live?

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