Adrenal Cancer: Anyone else have this?

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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liz65liz65 | @liz65liz65 | Nov 13, 2022

Does anyone have adrenal carcinoma?

Amanda Roe | @amandajro | Nov 14, 2022

In reply to @liz65liz65 "Does anyone have adrenal carcinoma?" + (show)

Hello @liz65liz65 and welcome to Mayo Clinic Connect. I am sorry to learn of this diagnosis, whether it be yours or someone you care about.
Do you mind sharing if this diagnosis is personal to you?

liz65liz65 | @liz65liz65 | Nov 14, 2022

In reply to @amandajro "Hello @liz65liz65 and welcome to Mayo Clinic Connect. I am sorry to learn of this diagnosis,..." + (show)

Not at all. Thank you. I could not find this.

mentallyill | @mentallyill | Nov 14, 2022

Iam diagnossed with adrenal cancer on kidney and it also effected my bones lungs made metastatus on bones anyone who can help meh out on how can i cure it or anyone here who have been cured from stage 4

Colleen Young, Connect Director | @colleenyoung | Nov 14, 2022

In reply to @mentallyill "Iam diagnossed with adrenal cancer on kidney and it also effected my bones lungs made metastatus..." + (show)

Hi @mentallyill, it is tough being diagnosed with stage 4 cancer. I moved your message to this existing discussion about adrenal cancer.
– Adrenal Cancer: Anyone else have this? https://connect.mayoclinic.org/discussion/adrenal-cancer/

I did this so you can read previous posts and connect more easily with fellow members like @liz65liz65 @timothyatkins @1kjewels @tenn3 @tomelledge @annadamscleary and @freitag.

With stage 4, your doctors may not talk about cure, but rather remission or living with cancer. What treatments are being suggested for you?

liz65liz65 | @liz65liz65 | Nov 19, 2022

In reply to @mentallyill "Iam diagnossed with adrenal cancer on kidney and it also effected my bones lungs made metastatus..." + (show)

I don't know if there is a cure for Adrenal Cancer yet. There are a couple of clinical studies for those with stage 4. Ask your physician. Wish you the best.

mentallyill | @mentallyill | Nov 19, 2022

In reply to @colleenyoung "Hi @mentallyill, it is tough being diagnosed with stage 4 cancer. I moved your message to..." + (show)

Doctor suggested me a tablet it almost cost about 1000 dollars it came from germany iam living in pakistan iam not much healthy for chemo beacuse it hurts too much

bailey02 | @bailey02 | Dec 12, 2022

New here: Adrenal Carcinoma

Colleen Young, Connect Director | @colleenyoung | Dec 12, 2022

In reply to @bailey02 "New here: Adrenal Carcinoma" + (show)

Welcome @bailey02. Read posts and connect with others living with adrenal cancer, like @alanbruce @mentallyill @liz65liz65 @timothyatkins @1kjewels @tenn3 @tomelledge @annadamscleary and @freitag in this discussion:
– Adrenal Cancer: Anyone else have this? https://connect.mayoclinic.org/discussion/adrenal-cancer/

Is this a new diagnosis for you, Bailey?

freitag | @freitag | Dec 12, 2022

In reply to @bailey02 "New here: Adrenal Carcinoma" + (show)

Hi bailey02,
My adrenal cancer metastasized from lung cancer. From what I understand, as a result, I am in the lung cancer discussion group, rather than adrenal cancer.
Best of luck to you.
I can say my surgery was pretty uneventful and apparently thorough.