How do you cope with extensive surgery for adrenal cortical carcinoma?

Hi Pamela, we have chatted before. Wow, this sounds like so much, and I’m so sorry. My husband lost about 60% of one kidney in 2012 with kidney cancer. Cancer free for 7 years. Then Adrenal Cortisol Carcinoma in right adrenal gland in 2020. Gland was removed with tumor. Now, he has 4 small tumors in right lung. Too small to treat with radiation, but hoping in Nov. scans he can be treated with radiation. Had one lesion in C-7 vertebra, also treated with radiation. It’s a battle. My brother had surgery this summer to remove a pre cancerous growth that they feared would move into pancreas and be malignant. He is 79 years old, and he almost left this world. Recovery has been extremely difficult, 4 months after surgery, he still struggles to eat enough calories. I do not recommend this surgery. You have very tough decisions ahead…prayers!

He had the surgery to remove. Did he have his pancreas removed? They’re only talking about about taking my tail off of it. I’ve already had major surgery. I had the first tumor removed and the surgeon ruptured it. That’s why I’ve got my issue cause it spilled. I don’t have a gallbladder because I’ve had a gastric bypass so I’ve already been cut into a few number times I’m just worried about losing all those organs but I’m having a lot of gut issues now, etc. so I think my pancreas might be compromised already. Thanks for the info.

No, he did not have pancreas removed. The growth was next to pancreas, but not in it. However, the growth was benign when pathology was done. In any case, the surgery was very invasive and so much pain. What they said would be a one month recovery, has turned into 4 months. He is very weak and still can’t eat much. he’s drinking protein drinks and trying to regain weight he lost. He was 245 lbs. before surgery and is 214 now. Not a very good way to lose weight! I’m just glad he’s finally feeling better…it was scary.

Facing such an extensive surgery recommendation after everything already experienced is understandably overwhelming, and many in this community have navigated similar difficult decisions about aggressive preventative treatments. The fear and uncertainty around these major procedures is completely natural, especially when weighing the risks and benefits of removing multiple organs. Connecting with others who have been through comparable surgeries in this supportive community may help provide insights into the recovery process and decision-making experience that could be valuable during this challenging time.

Yes, at NIH had kidney, spleen, part of large intestine, small intestine, stomach, tail of pancreas, , diaphragm removed. That was 1 1/2 years ago. Had another surgery a year later and likely one more this fall. Still smiling :) get tired and brain fog. Worse part was get meds balanced ( hydrocortisone and fludrocortisone)

Yes, I went through with surgery in January then I got a bacterial infection from the hospital and was fighting for my life with antibiotics for six months had to go back because of the Drs locally looked at me like a Dear i. head headlights of the huge surgery I had. Luckily the bacteria is now gone. I just need energy but my latest CT showed that my cancer I’m now NED but my diaphragm is deformed that they built and pushing on my stomach like a mass so I think that’s why I’m having so much other pains radiating to my shoulder and they’re trying to figure it out. Frustrating I just wanna live a full life the best I can. I know there’s rest days and all that but right now there’s not even days to go do anything because of pain did you have any issues with your diaphragm or any of that they’re on me to gain weight because I lost about 45 pounds but hard to do when your stomach‘s being pushed on.

Pam sounds lovely like quite the journey. Two questions. In a post you say you are NED. What’s that? You also mentioned you had success from a alternative drug. What was it?

Many thanks. I’ll try the tea, I’ve heard a few mentions of it.

Thanks Pam !!! I had the tea last night and already feel better. Don’t know the impact on the cancer but I feel better. Stomach and head feel better .