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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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tomelledge | @tomelledge | May 28 6:15am
In reply to @adantzler1010 "@tomelledge , what stage did you have? My 30 year old daughter just had her tumor..." + (show)
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@tomelledge , what stage did you have? My 30 year old daughter just had her tumor and adrenal gland removed. It had not invaded surrounding tissues and no blood vessel involvement. Her Ki-67 was 11-12% and the misgivings rate is up to 10mitoses per 10mm2. She has an appointment at MD Anderson on June 25. We haven’t even been told a stage yet, although I am assuming it will be Stage II due to size. I am very anxious about what her treatment might be and reoccurrence.

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@adantzler1010 I was never told my stage. Nor do I have a Ki-67. I’m assuming my stage was 2 due to the size, 15cm, but there was no metastasis. It had attached to my diaphragm. It was completely removed without leaking and no lymph nodes were affected. It was considered low grade. The second one was high grade but only 2cm enclosed in the gland. You can contact me if you have more questions.

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stromnjj | @stromnjj | May 28 8:26am
In reply to @adantzler1010 "My 30 year old daughter had an injury that revealed a tumor on her right adrenal..." + (show)
Profile picture for adantzler1010 @adantzler1010

My 30 year old daughter had an injury that revealed a tumor on her right adrenal gland. At removal (of both tumor and adrenal gland), it was 6.8x4x5 cm. It was not secreting any hormones. She had clear margins and no blood vessels involved. Her Ki-67 was 11-12%. She has an appointment at MD Anderson on June 25. Has anyone had ACC similar to this and what was your treatment? We haven’t received a stage yet but am assuming it will be stage II because of size and no metastasis. Has anyone ever had ACC and it not reoccurred?

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Sorry to hear about your Daughter, I was diagnosed with stage 3 acc in 2020, my tumor was 3.4 cm and a ki-67 of 30% so I was told I was stage3. I had surgery to remove, than 28 treatments of radiation and two years of mitotane. It has been almost 6 years and I have not had recurrence. Make sure that your Daughter is seeing a Doctor who has knowledge about acc as it is very rare.

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Colleen Young, Connect Director | @colleenyoung | Jun 9 7:32pm
In reply to @adantzler1010 "My 30 year old daughter had an injury that revealed a tumor on her right adrenal..." + (show)
Profile picture for adantzler1010 @adantzler1010

My 30 year old daughter had an injury that revealed a tumor on her right adrenal gland. At removal (of both tumor and adrenal gland), it was 6.8x4x5 cm. It was not secreting any hormones. She had clear margins and no blood vessels involved. Her Ki-67 was 11-12%. She has an appointment at MD Anderson on June 25. Has anyone had ACC similar to this and what was your treatment? We haven’t received a stage yet but am assuming it will be stage II because of size and no metastasis. Has anyone ever had ACC and it not reoccurred?

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@adantzler1010, along with @stromnjj, I'd like to add my welcome. I'm also tagging other members to join this discussion like @1kjewels @tomelledge @annern @joannegoguen as they also have experience with adrenocortical carcinoma (ACC).

You can read more in these related discussions:
- Adrenal Cancer: Anyone else have this? https://connect.mayoclinic.org/discussion/adrenal-cancer/
- Adrenocortical carcinoma (ACC) outcomes: What to expect?https://connect.mayoclinic.org/discussion/adrenal-cortical-carcinoma-outcomes/

@adantzler1010, I can imagine you are on pins and needles waiting for the upcoming appointment and to learn more about next steps. How are you doing? How is your daughter doing?

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adantzler1010 | @adantzler1010 | Jun 11 8:20am
In reply to @colleenyoung "@adantzler1010, along with @stromnjj, I'd like to add my welcome. I'm also tagging other members to..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@adantzler1010, along with @stromnjj, I'd like to add my welcome. I'm also tagging other members to join this discussion like @1kjewels @tomelledge @annern @joannegoguen as they also have experience with adrenocortical carcinoma (ACC).

You can read more in these related discussions:
- Adrenal Cancer: Anyone else have this? https://connect.mayoclinic.org/discussion/adrenal-cancer/
- Adrenocortical carcinoma (ACC) outcomes: What to expect?https://connect.mayoclinic.org/discussion/adrenal-cortical-carcinoma-outcomes/

@adantzler1010, I can imagine you are on pins and needles waiting for the upcoming appointment and to learn more about next steps. How are you doing? How is your daughter doing?

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@colleenyoung , Hi! We are doing well. My daughter has the best attitude. She is living in faith and not fear. I decided to quit researching until we go to MD Anderson and find out more. But so far, her hormones tests and genetic testing have come back good. Thank you for reaching out!

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