ACC Treatment Options

mhendrix
mhendrix Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
I'm so grateful to have found this site. This month marks the three-year anniversary since I had radical surgery to remove a rather large adrenocortical carcinoma tumor. I was told by two doctors, one of which is at a cancer center, that there would be no follow-up treatment to kill any hidden cancer cells because ACC didn't respond well to chemo or radiation. So, after surgery removed the tumor (and a few other things!), I've gone for regular CT scans, x-rays and bloodwork, and so far, so good. No evidence of cancer. I was wondering if anyone else had a different experience after surgery to remove the tumor. Is there really no preventative treatment after surgery? I've always wondered and there's so little information out there about it. Any information would be most appreciated. Thanks a bunch! And my blessings to all of you!

Comments

  • ACCfighter
    ACCfighter Member Posts: 2
    #2
    ACC diagnosis
    I am so glad that you celebrated your three year mark. I have recently had a tumor removed which was an adrenal cortical carcinoma. It did not appear to have spread to other organs. No other tumors are present in the tests so far. I am beginning my treatment of Mitotane in order to "prevent" the possilbe spread of the very active cells inside the tumor. I will also undergo radiation therapy. Check out the University of Michigan Endocrine Oncology program for more information.
    Please post your progress!
    Thanks.
  • Suha
    Suha Member Posts: 2
    #3
    Adrenocortical Carcinoma
    Hi!

    My husband also had a large tumor removed. 1.2 kilos. He was also not given any chemo or any medicine. Hope you are doing fine.

    Regards
    Suha
  • encbeach
    encbeach Member Posts: 1
    edited January 2017 #4
    ACC Treatment options

    Good Day! Hoping that someone might have some new input/success into ACC treatment options. My wife (a 52 year old RN) had a very large cancerous adrenal tumor removed 12/2013, had radiation treatment then took mitotane for two years before the cancer reappeared and she was diagnosed stage IV. Her oncologist had never treated ACC previously so we were got a 2nd and 3rd option and the consensus was to try a defined ACC chemo cocktail which after 3 months was determined to be ineffective. Currently she is taking OPDIVO which for the time being is keeping the tumor growth minimized. Hoping and praying for a new study to come available in 2017 and if anyone out there has any new information please share.

  • Chris_Br
    Chris_Br Member Posts: 2
    edited January 2018 #5
    Adrenocortical carcinoma

    I'm afraid everyone who has been haunted by acc is in our shoes looking for an answer. My 21 month baby boy has been diagnosed with acc and statistics on treatment when the tumor is not completely removable and or has spread does not have a high enough success rate to place my faith in it. Ive looked into and have heard wonderful success stories about Vegan, organic diets but most impressively is some of the stories I've come across in regards to CBD / THC oil curing cancer, shrinking tumors and the apoptosis ability. Something worth looking into especially since there isnt any side effects. My hope is it will have similar effects on acc. Cannakids.org has some info

  • VelmaC
    VelmaC Member Posts: 1
    edited July 2018 #6
    ACC and mitotane

    I was diagnosed Aug of 2014 and had a tumor the size of my fist and my left adrenal gland removed. I was on Mitotane for 22 months and then followed with ct scans until the cancer recurred at the surgery site in Nov 2017. they removed a 2 inch tumor in Jan 2018. I started on Mitotane April 2018 and did radiation on the adrenal bed which will be done next Tuesday. This time around I am also seeing an endocrinologist who started me on steroids and fludrcortisal to help with the side effects and make sure the remaining gland can do its work. Am on 2000 mg per day now. I have had to switch from gravel to pro chloracne for nausea twice daily. I found wearing hazel wood necklaces and bracelets have helped with the dizziness and initially with the nausea. Has anyone tried medical marijuana with Mitotane?

  • tisado
    tisado Member Posts: 6 Member
    edited October 2022 #7
    https://csn.cancer.org/discussion/comment/1634392#Comment_1634392

    I had "benign" tumor removed from right adrenal gland Aug 2020. It wasn't benign. Tumor 2 was removed from T4 spinal April 27, 2022. I had stereotactic radiation therapy in June and am now on Mitotane. Gradually increasing dosage, now at six 500 tabs, twice a day. Had CT and MRI on Thursday and results on MyChart. No new tumors at 6 months. I have appointment with endocrinologist next week to discuss.

    Of those of you on this thread, please reply if this treatment plan worked for you.

    Are you still alive and kicking? That is my goal. I would love to hear some positive stories.

    Sandy

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