Finally Some Answers: An Update


I made it through another long distance appointment! I’m pretty pleased that I’ve been able to manage these trips as well as I have. They take a lot of careful preparation, but I can do it as long as I plan for every scenario. Adapting and working around challenges seems to be just as important as getting better in the chronic illness game.

I met with a surgical oncologist and we discussed my imaging results. At my last appointment, with my other doctor, I left more confused and worried than I started. This latest appointment finally brought some answers, so here is what we see going on so far:

Medullary Thyroid Cancer appears stable, there are some lymph nodes to watch, and labs still look on the higher side, but no tumors are seen right now.👍

-The nodule inside my right lung does not appear to be a tumor.👍

-There are 2 tumors:

1. A pheochromocytoma on the right adrenal bed. This is where my adrenal used to be, and where I have had pheo occurances previously. Left side is still clear after 5 years.
2. A tumor in the paraspinal region, behind my lung. We don’t yet know what kind of tumor this is. There will be more imaging to investigate.

-We talked about the “the suspicious liver lesion” mentioned in the MRI summary, which he says is actually the same pheo BEHIND the liver. The liver itself looks okay. That’s not a separate tumor. 👍

So instead of a bunch of vague, scary info, I now know more about what we’re dealing with. Next step is MIBG imaging of the tumors. This is a test specifically for pheochromocytomas. This will tell the doctors if the tumor in my chest is also a pheo, and should rule out any other pheos hiding.

The surgeon told me these are both in operable areas. Of course I’m not excited about the idea of more surgeries, but still, that is very good news. Both sites are operable and manageable. So the adventure begins again, surgery with adrenal insufficiency is going to be a new experience for me, but we’ll cross that bridge when we get there. Surgery is my best chance for long term management of the tumors that come with MEN2a, and best chance at a normal life expectancy. I know I’ve said this every time, but fingers crossed that maybe, just maybe, these tumors will stop coming back this time. I know I’ll always have to monitor and manage my MEN2 the rest of my life, but I still would like to stop this cycle of surgery every year. Maybe a few years off this time?

Overall, I’m happy with how the appointment went, and should have my MIBG imaging scheduled soon!

Stay healthy my friends!


5 thoughts on “Finally Some Answers: An Update

  1. Sounds scary and awful, but great that you’re getting some clarity. To reassure you slightly, my son (13) who is AI due to Septo Optic Dysplasia just came through open heart surgery ok. We made sure all the Dr’s were aware of the Endo care plan, he obviously had extra steroids, and we watched him like a hawk. Scary, but doable. Good luck!

    Liked by 1 person

    • That is reassuring! I know many AI patients undergo surgery, and almost always without issue when steroid needs are met. I think my nerves are just from the unknown. I’ve had other surgeries, so I suppose I should be a pro by now lol, but it’s still a little scary. I’ll get through, and I’m really optimistic about my recovery. Getting this out of the way will be a wonderful thing! 🙂


  2. oh i bet your glad to know what your dealing with ad im glad there is not another one behind the liver. I hope they can help you with this and glad the sites are operable but sad at the same time. I know how painful operations can be 😦

    Liked by 1 person

    • Thanks Angela. Surgery is no fun, that’s true. The good news I’ll get better and if I’m really really lucky maybe this will be the last of the surgery for a while. I feel silly becsuse I’ve said that 5 times now lol, but I remain optimistic. Maybe 6th time will be the charm? Lol


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