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!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 10, 2019

In reply to @shanda "Just got the call. I head to Mayo Clinic on Wednesday the 13th!" + (show)

@shanda, have you seen the Visiting Mayo Clinic group? There might be some questions you're asking that the community has already answered.
> Groups > Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

Mayo also offers Concierge Services. It is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours.
Ways to Contact Mayo Concierge Services
* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

During your time at Mayo, I'm sure you'll visit the Cancer Education Center. It is an oasis right in the main Gonda building. The library offers great information and so much more. Find out more on the Cancer Education Center page here on Connect: https://connect.mayoclinic.org/page/cancer-education-center

As you get ready to head to Mayo, don't hesitate to ask questions. There are plenty of members who can help you prepare for your first visit.

shanda | @shanda | Feb 12, 2019

In reply to @colleenyoung "@shanda, have you seen the Visiting Mayo Clinic group? There might be some questions you're asking..." + (show)

Thank you!

shanda | @shanda | Feb 18, 2019

Surgery on extra adrenal para is scheduled for March 5th. Surgery for carotid body tumor will be 6-8 weeks after that.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 26, 2019

In reply to @shanda "Surgery on extra adrenal para is scheduled for March 5th. Surgery for carotid body tumor will..." + (show)

Thanks for providing an update on your surgeries, @shanda. Wishing you well.
Will you send an update (as you feel like it) after the surgery on the 5th?

shanda | @shanda | Mar 18, 2019

In reply to @hopeful33250 "Thanks for providing an update on your surgeries, @shanda. Wishing you well. Will you send an..." + (show)

Sorry. Haven't been on here in awhile. So many people to update after surgery that I forgot this site. I am doing well and hoping to go back to work this Friday. Surgery took extra long as did recovery (due to my bowels not wanting to wake up). My care at Mayo Clinic was amazing. The staff is wonderful.

Colleen Young, Connect Director | @colleenyoung | Mar 18, 2019

In reply to @shanda "Sorry. Haven't been on here in awhile. So many people to update after surgery that I..." + (show)

So good to hear from you, @shanda. Thanks for remembering 😉
How are you feeling about going back to work on Friday? Will you go back full time right away?

cootiesgirl1 | @cootiesgirl1 | Mar 31, 2019

Hello everyone. I was incorrectly dx with bladder cancer and after second opinion am one year later learning that is not what I had, but a paraganglioma. Anyone else have this?

Ethan McConkey, Moderator | @ethanmcconkey | Mar 31, 2019

Hi @cootiesgirl1 and welcome to Connect.
I would like to introduce you to fellow Connect members @shanda and @sharik as they have experience with parangangliomas and may be able to offer you support.

Back to you @cootiesgirl1 since you have been diagnosed, what have your doctor's told you are your next steps?

sharik | @sharik | Mar 31, 2019

In reply to @cootiesgirl1 "Hello everyone. I was incorrectly dx with bladder cancer and after second opinion am one year..." + (show)

My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes to thighs. My para was removed December 2016 at Mayo and I am doing great!

cootiesgirl1 | @cootiesgirl1 | Apr 1, 2019

In reply to @sharik "My paraganglioma was in my neck so totally different symptoms. They can occur anywhere from eyes..." + (show)

@sharik thank you for reaching out. I am still in shock and trying to figure out what is next. I am not a fan of Facebook, so that group is out 🙁 Mine was in my bladder and was dx as high grade transitional cell urothelial carcinoma. When I developed a septic like reaction to the 9th BCG treatment and was told I couldn't have anymore, I decided to go to Johns Hopkins Brady Urological Institute for a second opinion. I had my slides sent from the original tumor. They diagnosed it as paraganglioma. I don't know if this is hereditary or not. I am adopted and have had many lovely hereditary health ailments surface in the past 10 years. I do have 2 grown children and they would need to know if it were hereditary, right? The next step that the doc from JH said is to have a PET scan. I just had a CT on 3/7/19 which showed NED or mets. I am scared. Is this "better" than bladder cancer? Wow... that sounds messed up... 🙂 Thanks for any help!