Adrenal gland cancer

kmonteith
kmonteith Member Posts: 3
edited March 2014 in Rare and Other Cancers #1
My mom was diagnosed in October with cancer of the adrenal gland (adrenalcortical carcinoma). I've searched the internet for personal experiences regarding the cancer, but have had very little luck. The doctors have not mentioned a "stage" yet, but from everything I have been able to read it seems like she's already at stage IV or V. Can anyone share information with me as to what to expect in the progression of this disease? My mom is 55, I am 32 and an only child. My dad doesn't "get" how serious this could be. Help?!
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  • kmonteith
    kmonteith Member Posts: 3
    oops...should have said stage III or IV.
  • kmonteith said:

    oops...should have said stage III or IV.

    This comment has been removed by the Moderator
  • dancer21
    dancer21 Member Posts: 18
    Hello kmonteith,

    I'm 21 and was diagnosed with a type of adrenal cancer in May 03 and had my left adrenal gland/large tumour removed. I'm still waiting to see about what treatment I may need.
    Not sure if I can offer you mountains of information, as I'm sure you have found, there is not a lot of information on this type of cancer, but please feel free to ask anything and I'll do my best to help.
    All the best to you and your mom,
    Dancer x
  • jeffz
    jeffz Member Posts: 1
    dancer21 said:

    Hello kmonteith,

    I'm 21 and was diagnosed with a type of adrenal cancer in May 03 and had my left adrenal gland/large tumour removed. I'm still waiting to see about what treatment I may need.
    Not sure if I can offer you mountains of information, as I'm sure you have found, there is not a lot of information on this type of cancer, but please feel free to ask anything and I'll do my best to help.
    All the best to you and your mom,
    Dancer x

    we found our cancer before christmas. we have scoured the internet for information. Surgery was done in jan. any information will be helpfull . all of you keep the faith.
  • brasser
    brasser Member Posts: 1
    unknown said:

    This comment has been removed by the Moderator

    Please help! My sister and best friend is in need of some good advise. It all started last March. She had been having abdominal pains for a couple of years when the doctor finally sent her to have an MRI and CT scan they found tumors on both adrenal glands and lesions on both kidneys. Nothing was done because they were thought to be benign. She was hospitalized in May and they remove her gallbladder and she was told to repeat her MRI and CT scan in 6 months. Since then she has suffered from anxiety and panic disorder and is still suffering from the abdominal pains and weakness. The repeat of the MRI shows that the smaller tumor on right adrenal cortex has indeed grown and possibility of metastatic now her MD has admitted that this is over her head and is sending her to a Endocrinologist, but has had a hard time trying to find one it has been two weeks and still no word about when they will do a biopsy. Are we over reacting? I think that something should of been done along time ago. I know this is rare but what are the chance this could be cancer and if it is what are her chances of recovery? All this waiting is killing her and any help is appriciated.
  • sd531
    sd531 Member Posts: 2
    brasser said:

    Please help! My sister and best friend is in need of some good advise. It all started last March. She had been having abdominal pains for a couple of years when the doctor finally sent her to have an MRI and CT scan they found tumors on both adrenal glands and lesions on both kidneys. Nothing was done because they were thought to be benign. She was hospitalized in May and they remove her gallbladder and she was told to repeat her MRI and CT scan in 6 months. Since then she has suffered from anxiety and panic disorder and is still suffering from the abdominal pains and weakness. The repeat of the MRI shows that the smaller tumor on right adrenal cortex has indeed grown and possibility of metastatic now her MD has admitted that this is over her head and is sending her to a Endocrinologist, but has had a hard time trying to find one it has been two weeks and still no word about when they will do a biopsy. Are we over reacting? I think that something should of been done along time ago. I know this is rare but what are the chance this could be cancer and if it is what are her chances of recovery? All this waiting is killing her and any help is appriciated.

    You need to check into a type of adrenal cancer called pheochromocytoma. THis cancer is found not only in the adrenals but in the abdominal cavity as well. It can cause abdominal discomfort although it's primary symptoms include high blood pressure, anxiety attacks, along with sweating and palpitations, overwhelming sense of doom.
  • 102353
    102353 Member Posts: 2 Member
    i know exactly how you feel, I have pheochromocytoma and had surgury in May 2002.They found that the tumor was larger than 4cm to be exact it was 7cm, this was larger than they expected and i was told i will be watched very closely for reaccurance.My left adrenal gland was removed and i do feel much better but i am constently waiting for signs of reaccurance and this scares me. I have a wonderful doctor at the Cleveland Clinic in Cleveland ohio also the surgeon that operated on me is the only surgeon that does this type of surgery laprascopicaly. If you need to talk more please contact me. tellbell50@aol.com I would love to talk to someone else with this condition.
  • 102353
    102353 Member Posts: 2 Member
    brasser said:

    Please help! My sister and best friend is in need of some good advise. It all started last March. She had been having abdominal pains for a couple of years when the doctor finally sent her to have an MRI and CT scan they found tumors on both adrenal glands and lesions on both kidneys. Nothing was done because they were thought to be benign. She was hospitalized in May and they remove her gallbladder and she was told to repeat her MRI and CT scan in 6 months. Since then she has suffered from anxiety and panic disorder and is still suffering from the abdominal pains and weakness. The repeat of the MRI shows that the smaller tumor on right adrenal cortex has indeed grown and possibility of metastatic now her MD has admitted that this is over her head and is sending her to a Endocrinologist, but has had a hard time trying to find one it has been two weeks and still no word about when they will do a biopsy. Are we over reacting? I think that something should of been done along time ago. I know this is rare but what are the chance this could be cancer and if it is what are her chances of recovery? All this waiting is killing her and any help is appriciated.

    when i first noticed my symptoms i was always nauseated and started losing weight. I went to an gastrointerologist because i thought it was something wiht my stomach. He said lets start with a mri. I did have several episodes of severe headache one of which i went to the emergency room. They told me my blood presure was 188/102 but said that I had a muscle spasm in my head. As dumb as that sounds I believed it. I then went to an neurologist to find out about this brain spasm. they could not find anything. The MRI was done and that is when they found the tumor. I also started having the feeling of domb and my heart would pound out of my chest. This was a scarry part. My endrocrinologist sent me to the Cleveland Clinic. That was the best thing they could have done . I had surgury and the tumor was removed. I thank God everyday for the surgeon because I feel sooo much better, however I pray everyday that it does not return on my right adrenal gland. I will cross that bridge when i get there. I know this is a rare thing but at least we have doctors that can help. I thought I was alone with this if I can help anyone out there please contact me at tellbell@aol.com
  • Prema
    Prema Member Posts: 2
    dancer21 said:

    Hello kmonteith,

    I'm 21 and was diagnosed with a type of adrenal cancer in May 03 and had my left adrenal gland/large tumour removed. I'm still waiting to see about what treatment I may need.
    Not sure if I can offer you mountains of information, as I'm sure you have found, there is not a lot of information on this type of cancer, but please feel free to ask anything and I'll do my best to help.
    All the best to you and your mom,
    Dancer x

    I have a 9cm adrenal tumor. They say it's most likely cancer. My surgery is next Friday. It's been tough. I did find a long term survivor story www.followingthesun.org/about_me.html. Has anyone heard of effective treatments? I've only heard of mitotane.
  • stancy
    stancy Member Posts: 2
    Prema said:

    I have a 9cm adrenal tumor. They say it's most likely cancer. My surgery is next Friday. It's been tough. I did find a long term survivor story www.followingthesun.org/about_me.html. Has anyone heard of effective treatments? I've only heard of mitotane.

    My wife was recently diagnosed with an adrenal cortical carcinoma. We have her on 2grams of Mitotane, Protocel, Immuno-Viva, vegetable diet, 1/2 to 1 gallon of distilled water per day, moderate exercise. She is recovering from surgery that removed a tumor that was 17.5 cm x 10 cm in size (about the size of a small football). The surgery was done on Feb 14th of all days and she is recovering nicely. We are going to beat this thing. Alternative medicine is about the only treatment for this cancer because of its rarity (30 - 50 cases per year nationwide). I welcome any response as I can use all the information I can get. I'll share my research with you also. Stan - caregiver
  • Kaymb
    Kaymb Member Posts: 3
    Prema said:

    I have a 9cm adrenal tumor. They say it's most likely cancer. My surgery is next Friday. It's been tough. I did find a long term survivor story www.followingthesun.org/about_me.html. Has anyone heard of effective treatments? I've only heard of mitotane.

    I myself have adrenal
    I myself have adrenal cancer, and had a 8cm tumour taken out in march 08! my cancer has now spread to my lung and bowel and still the only treatment that my specialist has told me is the mitotane!! they may try to use radiotherapy or chemo but because the cancer is so rare, in many cases the therapy has not been able to treat the cancer!! so i have been given a yr or so to live, and are now praying that the mitotane works miracles for me!! but best of luck to you!!! be strong
  • Kaymb
    Kaymb Member Posts: 3
    stancy said:

    My wife was recently diagnosed with an adrenal cortical carcinoma. We have her on 2grams of Mitotane, Protocel, Immuno-Viva, vegetable diet, 1/2 to 1 gallon of distilled water per day, moderate exercise. She is recovering from surgery that removed a tumor that was 17.5 cm x 10 cm in size (about the size of a small football). The surgery was done on Feb 14th of all days and she is recovering nicely. We are going to beat this thing. Alternative medicine is about the only treatment for this cancer because of its rarity (30 - 50 cases per year nationwide). I welcome any response as I can use all the information I can get. I'll share my research with you also. Stan - caregiver

    Hi Stancy
    Just wondering if you could let me know what kind of vegetable diet your wife was doing? i myself have adrenal cortical cancer and have been told to stay on mitotane and am takin 4.5gms a day! but i am not giving up hope and was wondering what was the best alternative medicine you have found?? and what is protocel and Immuno-Viva??
  • WoundedAngel_2009
    WoundedAngel_2009 Member Posts: 5
    Kaymb said:

    Hi Stancy
    Just wondering if you could let me know what kind of vegetable diet your wife was doing? i myself have adrenal cortical cancer and have been told to stay on mitotane and am takin 4.5gms a day! but i am not giving up hope and was wondering what was the best alternative medicine you have found?? and what is protocel and Immuno-Viva??

    I also have adrenal cancer
    Hang in there My tumor was found by a stroke of luck and removed Jan 19 2009. They got it out incapsulated and said it didnt look to have been outside the capsule but it still scares me. I am taking Lysodren 1000mg 2x's a day and doing the labs as ordered. They did a CT of my abdom and chest and said all looked good but they didnt do the pelvic area even though it was ordered? My doctor nurse called today and wants to see me next week,that scares me to death as I wasnt scheduled til June but one day at a time is all i can do. I was told I was Stage II, God Bless
  • WoundedAngel_2009
    WoundedAngel_2009 Member Posts: 5
    Kaymb said:

    I myself have adrenal
    I myself have adrenal cancer, and had a 8cm tumour taken out in march 08! my cancer has now spread to my lung and bowel and still the only treatment that my specialist has told me is the mitotane!! they may try to use radiotherapy or chemo but because the cancer is so rare, in many cases the therapy has not been able to treat the cancer!! so i have been given a yr or so to live, and are now praying that the mitotane works miracles for me!! but best of luck to you!!! be strong

    You can do it
    I will pray for you
  • dhigh
    dhigh Member Posts: 2
    Kaymb said:

    I myself have adrenal
    I myself have adrenal cancer, and had a 8cm tumour taken out in march 08! my cancer has now spread to my lung and bowel and still the only treatment that my specialist has told me is the mitotane!! they may try to use radiotherapy or chemo but because the cancer is so rare, in many cases the therapy has not been able to treat the cancer!! so i have been given a yr or so to live, and are now praying that the mitotane works miracles for me!! but best of luck to you!!! be strong

    adrenal cancer
    Hi. My name is Debbie. I had an 8 cm tumor taken out in Feb/09. Is the mitotane helping in any way? I am on chemo as well and they plan to put me on on radiation when the chemo is done (12 weeks)even tho they said they had no evidence it (any of it) would work.. May I ask what stage you were at at the time of surgery? Had the cancer spread yet? I am stage 3. It spread to the fatty tissue surrounding. They took out my kidney and part of my pancreas - and part of my liver, too, tho the "spots" on the liver were benign. Was your tumor a "functioning" one? - Meaning did you get Cushing's Syndrome symptoms?
    You seem to be a positive person. I am wondering how you do it?
  • dhigh
    dhigh Member Posts: 2
    dhigh said:

    adrenal cancer
    Hi. My name is Debbie. I had an 8 cm tumor taken out in Feb/09. Is the mitotane helping in any way? I am on chemo as well and they plan to put me on on radiation when the chemo is done (12 weeks)even tho they said they had no evidence it (any of it) would work.. May I ask what stage you were at at the time of surgery? Had the cancer spread yet? I am stage 3. It spread to the fatty tissue surrounding. They took out my kidney and part of my pancreas - and part of my liver, too, tho the "spots" on the liver were benign. Was your tumor a "functioning" one? - Meaning did you get Cushing's Syndrome symptoms?
    You seem to be a positive person. I am wondering how you do it?

    adrenal cancer.
    In my earlier comment I was actually trying to address Kaymb - not quite sure how these things work - but if there is anybody out there that wants to talk to me I would really like that. I think that it's the rarity of the cancer that scares me more than anything else.
  • GY Moon
    GY Moon Member Posts: 1
    Kaymb said:

    Hi Stancy
    Just wondering if you could let me know what kind of vegetable diet your wife was doing? i myself have adrenal cortical cancer and have been told to stay on mitotane and am takin 4.5gms a day! but i am not giving up hope and was wondering what was the best alternative medicine you have found?? and what is protocel and Immuno-Viva??

    To Stancy and Kaymb,
    My brother was diagnosed in last Novemer and removed his tumor (about 10cm). He started his chemo from May and just finsihed his second cycle of chemo. We were told that chemo theraphy doesn't really work well with this cancer -they do it this to prevent metastasis. so we are thinking about another optin which is mitotane. Please let me know how it works well and let me know about side-effect on it.

    Good luck and God bless both of you.
  • sandeeb
    sandeeb Member Posts: 2
    adrenal cancer
    Hi, I have had adrenal cancer two times and I will start on mitotane,drug of choice for this cancer, next week. My first bout was in 2002 and I was clear for 6 years with no treatments.
    Stage 2. The cancer came back last year and I had surgery again in January of this year. I am going to M D Anderson for treatment. If you write to a guy named **** Beverlin:
    beverlin@ix.netcom.com and ask him to let you join an (adrenal cortical carcinoma)yahoo group he will. He is very nice and there are a lot of well informed people on this site. I'm sure some of them can help you more than I can. I wish the best for your mom and for you.
    Sandeeb
  • anjilaka
    anjilaka Member Posts: 2
    Kaymb said:

    I myself have adrenal
    I myself have adrenal cancer, and had a 8cm tumour taken out in march 08! my cancer has now spread to my lung and bowel and still the only treatment that my specialist has told me is the mitotane!! they may try to use radiotherapy or chemo but because the cancer is so rare, in many cases the therapy has not been able to treat the cancer!! so i have been given a yr or so to live, and are now praying that the mitotane works miracles for me!! but best of luck to you!!! be strong

    adrenal cancer
    hi , my name is tom. my 27 year old daughter anjilaka was told last week that she has a football size tumer in her adrenal gland. mir showed this and bi-opsy was taken from the right lung and it said metastatic malignent. stage four is what its acting like.we are thinking surgery and treatment at ohsu in portland,oregon. i would like to know if the mitane is working or not, or if you have changed your treatment. i will pray for you, some-one please help me save my sweetheart. love tom / my email is dragonstarkungfu@gmail.com
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