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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taracronwall | @taracronwall | Jun 2 12:31am
In reply to @colleenyoung "@taracronwall, welcome. I'm glad you found this group too. I can hear the desperation in your..." + (show)
@colleenyoung

@taracronwall, welcome. I'm glad you found this group too. I can hear the desperation in your voice. It's understandable that desperate situations often lead to trying everything. However, I caution about using repurposed medications, like fenbendazole and ivermectin. There's a lot of information as well as misinformation circulating about these repurposed deworming drugs on social media. It sounds like you've suffered some unwanted consequences from them. Here's a clear and well-written article about repurposed drugs being researched for cancer.

- Separating fact from fiction: repurposed drugs in cancer treatment https://www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment

As a single mom, you want to do everything to be there for your children. Getting a second opinion is a good idea. If you want to pursue getting a second opinion at Mayo Clinic in Florida, Here's how to start. http://mayocl.in/1mtmR63

When were you seen at Mayo in Arizona? Is Florida closer for you?

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Hi Colleen I was seen at Mayo in Scottsdale when I lived there in 2012. I’m in Nokomis FL now.
I don’t use ivermectin or fenben to shrink my tumor I use it proactively for colon cancer prevention.
I was specifically interested in treatment options for paraganglioma such as Lutathera or PRRT versus electrostatic radiation which I believes just possibly halts the tumor from growing larger but can damage and destroy vital structures and possibly have side effects such as a feeding tube (so says the team at Tampa general) if I go ahead with it. So I figured I would try to get someone else’s take on treatment but u errand bit is rare and so are both of my tumors that are surgically unsafe to try to operate on.

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michellehcapouch | @michellehcapouch | Jun 2 3:43pm
In reply to @taracronwall "Just found this group. I have had a parapharangeal ganglioma since 2012. Mayo in Scottsdale see..." + (show)
@taracronwall

Just found this group. I have had a parapharangeal ganglioma since 2012. Mayo in Scottsdale see the best Dr Michael Hinni who said leave it alone and cannot biopsy because too dangerous and too vascular. Fast forward my symptoms have gotten acute since Jan of this year, a carotid body tumor has now shown up, went through iterate scan recently and a vestibular test and mri CT’s parietal. Seeing a team at Tampa general. The ent says no radiation or a feeding tube is in my future. I’m 53 and medical assistant neuromuscular therapist and aging dancer. My balance has gotten way worse my swallowing is scary and choke daily, I have hit my head at least 6 times now splitting it at work. Tip over while rooming patients and they are talking electrostatic radiation. I read up on Luthera??? I have been doing everything g like fenben and ivermectin to smearing ivermectin paste on my neck tumor which is causing hearing issues shushing and tinnitus and pressure on my jaw and ear and pulsing pain throbbing. I’m not sure what the future holds, what job I’ll be able to have and they only said no surgery because this thing encompasses vagus, jugular and carotid arteries. So I don’t sleep have two children single parent and don’t know which way to go with this. Who has any experience in going down this road???? Please someone help. I’m due to see an endocrinologist soon. Have an appt at Moffit to see what they think as a second opinion. Should I go mayo instead???? What other immunotherapies work??? I can’t do hyperbaric oxygen because of the ear pressure already. Thank you for the support in advance🌸🙏

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Red light therapy may help with inflammation and lessen symptoms. Yes see an endocrinologist. My endocrinologist at Mayo saved my quality of life getting 2 of my Parathyroid glands removed. Keep searching keep praying the body is an amazing thing of miracles so are our medical communities. Good luck God bless!

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taracronwall | @taracronwall | Jun 7 7:57pm
In reply to @shanda "@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come..." + (show)
@shanda

@hopeful33250 @sharik I will certainly share updates. I do have another question (probably more to come too). I have an appointment set with an endocrinologist here locally. Originally this was set up to start me on preop meds, when they thought it was a pheo and a local doc was possibly going to do surgery (I had lots of questions b4 I would have let that happen.) Anyway, since it is a para instead and they are going to refer me to Mayo, should I follow through with this endo appointment? My blood pressure has only been slightly elevated, not enough I feel to require meds. However, if the meds can help control potentially dangerous spikes due to episodes, I think maybe I should follow through with the appointment. Then I wonder if the doc will know enough about para to prescribe the correct meds. So I go back to thinking I should just wait for any more appointments until I can get to Mayo. Lots of info there and I realize the right answer may be hard to determine but I would appreciate any experience, thoughts, etc.. on this.

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Hello? 👋 can’t believe I’m reading this about paraganglioma and carotid body tumor. This is what I believe I have. Mayo in az 2012 diagnosed and said no biopsy because they are vascular. Fast forward to now. Carotid body tumor appeared and fast, tipping over, hitting my head, heart beats fast sometimes. Swishing sounds in my ear , lots of pressure. I have been to Tampa to a team there. They said only radiation because it’s on my vagus jugular and carotid and too risky. Went to Moffit and they found something in my tonsils. They want to rule out anything else. I’m a cancer survivor too colon cancer 2012z so I have appts next week to see ent surgeon and for a biopsy. Not of tumor but of tonsils. They said surgery would leave me paralyzed but doing nothing will stop heart rate breathing and respiration and I’m already choking on food. Swallowing is an issue for sure. Do I go to mayo? They said radiation may halt but not stop growth. The cage thing is quite scary. I wonder what else is out there? I see an endocrinologist soon but feel an experienced one at Moffit or Mayo would be better. Mayo is far from me which is why I chose Moffit which was a step up from Tampa general. I’m wondering how long I can be in my career with hitting my head and splitting it, falling over out of nowhere. I work in derm with scalpels and don’t want to hurt patients or the Dr. but I don’t have another backup to pay the rent single mom two children. Amy feedback helpful. I don’t know what direction to go or what to do. I’m losing hope and freeze mode is happening more. It’s very lonely. Does anyone know anything about PRRT Lutathera or anything else as an alternative to radiation?any help would ease the mind right now, it’s hard to think about other things. I would be happy to share my scans CT’s mris dotatate, pets, urine tests showed nothing but my paraganglioma on carotid lit up bright. MET or not we shall find out. But what to do in the meantime. I’m out of pto at work and I live in Nokomis FL Mayo is a drive and I can’t keep missing work. Has anyone gone on short term disability or long term for treatment? I’m terrified. Much gratitude for reading this or any part of it. There are so few people like this it’s a wonderful th ing to have a forum to help one another. Gabby

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tstern7 | @tstern7 | Jun 8 3:31pm

Gabby I am so sorry for everything you’re going through. I wish I knew about paragangliomas but I hadn’t heard about this before reading your post. It sounds Mayo is a long way from you but I would go there. The teaching hospitals have more expertise with rare tumors. I’ve found that other doctors, including most endocrinologists, there’s not enough experience and/or knowledge. Good luck to you and I hope you get some answers soon!

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gangcarotid1 | @gangcarotid1 | Jun 8 4:40pm

Gabby, I agree w @tstern7. I made the decision to go to Mayo because no one within 1000 minutes of me had a clue (some of them thought they did, but when they started talking biopsies, I started searching where to go). My surgery is in 28 days, and Yes I'm quite scared & nervous, but I know I'm going to the place where it'll be the best outcome, however it returns out.
You can do this! Sending hugs and prayers, /s/ @gangcarotid1

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gangcarotid1 | @gangcarotid1 | Jun 8 4:41pm

I meant miles, not sure why my phone thought I meant minutes.

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