Unable to have surgery

Hi MissP84, I'm so sorry you find yourself in this position. Paragangliomas are so rare. My daughter has breast cancer and a bladder paraganglioma was found during the staging tests at the start of her journey. She had no symptoms. I has never even heard the word before. She had surgery to remove it after her first 8 chemos, before breast surgery. Daughter recovered well (from both surgeries) then had 15 sessions of radiotherapy and a further 14 chemos. She's now being monitored by both oncology and endocrinology teams.

I really hope a way forward can be found for you. Sending strength, very best wishes and a hug.

I’m sorry you are in this position. You could always try another hospital and another surgeon. Sometimes the larger hospitals may take on higher risk cases. I would ask for a detailed written response stating why you are being refused surgery and then you know what you are challenging. I hope you find a solution.

Hi Cherry2,

Thank you so much for your response.

Sounds like your daughter has had a rough journey, hope she's doing well ️‍

My paraganglioma was discovered so long ago and no treatment was required, which is why I'm finding it difficult to comprehend that would potentially take priority over the cancer.

Do you know why it was treated before the breast tumor?  

I'm so in the dark, and the plastic surgeon that called me today, admittedly didn't know very much....feel like I'm back to start of my journey.

Thanks again, I more than appreciate it xx

Hello, I’m very sorry to read this. You must feel like a rug has been pulled from under your feet. I can’t comment from a medically qualified point of view, but before writing this, I asked myself …..   what would I do. 
I think I would ask for a second opinion (as someone has suggested in a previous post). I would also consider asking if they would be prepared to do the mastectomy without the reconstruction. I suspect that a mastectomy on its own would be a shorter operation, and thus possibly less risky? You could always have reconstruction at a later date (well, that’s what I was told). Also, and if surgery is definitely not advised, what will be the alternative treatment plan. 
I’m so sorry that you are in this position xx.

Thank you Cloudier....I appreciate you reaching out...

Today has been pretty dark, probably more than when I received my diagnosis...

I asked today if a Mastectomy or even lumpectomy were options and I was the told the 'team are terrified to operate on you' not what anyone wants to hear...

Im guessing I'll go straight to chemo, which I know was always a possibility but it feels like I'm not getting a fair chance by having the tumor removed initially.

Thanks again, I'm hoping for some more information this week and I can mentally move forward xx

Hi MissP84

I am so sorry about your situation. Although I can't comment medically I do have some questions that may be worth asking....

1. Why are they reluctant to do the operation? Fear is not a good reason. They need to explain the why. It may because there are high risk factors that out weigh the benefits of the op.
2. Is it worth removing the paraglioma first?
3. It's been so long since they checked the para glioma, is it worth rechecking to validate the risk.

I don't if these will help you as you may still get the same outcome but you may better understand the reason.

Skj