Adrenal Cancer.

Posted by 1kjewels @1kjewels, Nov 6, 2018

I was diagnosed with Stage 3 Adrenocortical Carcinoma in Feb 2018. March 29 had surgery to remove massive tumor on adrenal glad. Also removed one kidney, spleen, 1/2 pancreas and portion of colon. Had 6 wks of radiation, however next scan showed new growth on both lungs and am currently on Mitotane. Next scan showed growth of spots, but nothing else new. Increased dosage of Mitotane and waiting for next scan in 4 weeks. I am looking for anyone who may has experienced this and found alternative treatment with success. This is a very rare cancer, 1 in 1.7 million odds.

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@tomelledge

Good Morning Becky. Thanks for the welcome. First, I'm sorry if you and others believe I'm trying to force my opinion on others. Take my opinion for what it's worth. I'm not a doctor, I'm just sharing my experience so others can see there are many options. And yes, my radiation oncologist did explain that I'd be "burning" several internal organs. I've had head neck radiation so I'm not new to radiation and it's possible damage or its ability to bend around various organs etc. I'd be very interested in hearing from someone who has had radiation and what actually happened to their various organs. I'm not sure what you mean by second type of adrenal cancer?

One of my oncologists, Dr Hammer, called me an enigma. My experience with ACC is unusual. To go 7 years without a recurrence or metastasis and then have a new tumor pop up is not normal I guess… I'm NED right now a year and a half after my second tumor removal. I think that is a good sign from all of the research I've done.

I've been called stoic so I guess I'm pretty calm and I'm proactive. I do a lot of research on ACC and on what others have done to help themselves. I won't mention all of what I'm doing as it is what resonates with me to live a long and happy life, however long it may be. And I get checked with CT or MRI twice a year.

As for my future, no, I haven't had a doctor predict my future. I've talked to or read stories from other survivors so I know what the future may hold but I also know the statistics and know that there are some who survive. That is what I'm continuously striving for.

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@tomelledge sure sounds like we got crossed wires! I didn’t mean to sound as if you were going to force your opinions on others, just the opposite!!! And by “second type of cancer”, i was referring to your tumor of 2019. I’m so sorry i got everyone confused! It sounds like you have some good doctors, even if your volunteer mentor isn’t so great! 🙂

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@becsbuddy

@tomelledge sure sounds like we got crossed wires! I didn’t mean to sound as if you were going to force your opinions on others, just the opposite!!! And by “second type of cancer”, i was referring to your tumor of 2019. I’m so sorry i got everyone confused! It sounds like you have some good doctors, even if your volunteer mentor isn’t so great! 🙂

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Hi Becky. Thanks for explaining. You're a great mentor; taking the time to explain is what good mentoring is all about. I look forward to more conversations…

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@tomelledge

Hi Becky. Thanks for explaining. You're a great mentor; taking the time to explain is what good mentoring is all about. I look forward to more conversations…

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I’m going to see if @alanbruce can come and join the conversation. He has many comments on adrenal cancer

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