Community Member
4 months agoAnyone with adrenal cortical carcinoma or similar diagnosis is that had their kidney spleen, pancreas part of it diaphragm all removed how did u do They’re talking that I should do that for preventative since my tumor ruptured I already lost the adrenal gland, but it’s very scary and national health is the one that will do it. I currently only have a tumor in my liver that they will zap and I have a couple small nodules in my adrenal bed, but they just say it’s Not a matter of time but yet there’s nothing in my kidney or any of that yet.  and I’ve been doing an alternative and it’s doing some good but it’s all pretty scary and there’s not much more and I will not do immunitherapy or more chemo. They’re not offering anything but immunotherapy. Appreciate anyone’s experience.
Accepted Answer
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.
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Community Member
3 months agoHi 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!
Community Member
2 months agoHe 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.
Community Member
2 months agoNo, 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.
Community Member
2 months agoFacing 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.
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