Rare cancers

lovealways
lovealways Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
My Mom has just recently been diagnosed with a rare form of cancer called...adrenocortical carcinoma. It is cancer of the adrenal cortex, and only effects 1 in 2,000,000. I'm here because I am wondering about any success stories dealing with this type of cancer. I would love to hear whatever you have to say.....

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    A place to start:
    http://pages.zdnet.com/beverlin/adrenocorticalcarcinoma/
    lanesharon@yahoo.com
  • CarolSusan
    CarolSusan Member Posts: 2
    #3
    I don't have much information for you as I've scoured the internet for tid bits ever since my Dad was diagnosed with the same thing. I can only tell you of our experience since then...my Dad has been battling Adrenocortical Carcinoma since March of 2002, when they discovered a 13 cm tumor on his adrenal gland. He had surgery, they removed the adrenal gland and kidney, followed by radiation and within six months the cancer had progressed to the bone; from the hips, spine, to shoulders etc. His right arm just broke two weeks ago, from a bone tumor that had weakened it. He had to have surgery, inserting a rod, because the bones won't heal now. The doctors give us no prognosis as there is so little information on this rare type of cancer. He is treated by palliative home care at the moment and we live week to week waiting for the next crisis....there have been many. The only thing they can tell us is that this is an extremely agressive and fast moving. The doctor says that it is non-typical because he has pain and symptoms long before anything shows up on any scans. I know it's not a success story, but no matter how rare it is, your not alone.
  • kmonteith
    kmonteith Member Posts: 3
    #4
    CarolSusan said:

    I don't have much information for you as I've scoured the internet for tid bits ever since my Dad was diagnosed with the same thing. I can only tell you of our experience since then...my Dad has been battling Adrenocortical Carcinoma since March of 2002, when they discovered a 13 cm tumor on his adrenal gland. He had surgery, they removed the adrenal gland and kidney, followed by radiation and within six months the cancer had progressed to the bone; from the hips, spine, to shoulders etc. His right arm just broke two weeks ago, from a bone tumor that had weakened it. He had to have surgery, inserting a rod, because the bones won't heal now. The doctors give us no prognosis as there is so little information on this rare type of cancer. He is treated by palliative home care at the moment and we live week to week waiting for the next crisis....there have been many. The only thing they can tell us is that this is an extremely agressive and fast moving. The doctor says that it is non-typical because he has pain and symptoms long before anything shows up on any scans. I know it's not a success story, but no matter how rare it is, your not alone.

    My mom was diagnosed in October with adrenal cancer. She's in the hospital now due to severe lower back and right hip/leg pain. We found out through MRI she has a fractured vertebrae (L1). A biopsy was done on the 29th, and we'll find out tomorrow the results. However, a bone scan done on the 29th did not indicate that there was any cancer in the bones. The doctors have also mentioned that spots previously noted as "shadows" on her right lung have grown and are cancerous. I, too, have tried to scour the internet for personal testimonies from caregivers and patients...with not much luck. Is there anyone out there now who can provide ANY info on the normal progression of this disease?...or things to prepare myself for?
  • tulip66
    tulip66 Member Posts: 32
    #5
    kmonteith said:

    My mom was diagnosed in October with adrenal cancer. She's in the hospital now due to severe lower back and right hip/leg pain. We found out through MRI she has a fractured vertebrae (L1). A biopsy was done on the 29th, and we'll find out tomorrow the results. However, a bone scan done on the 29th did not indicate that there was any cancer in the bones. The doctors have also mentioned that spots previously noted as "shadows" on her right lung have grown and are cancerous. I, too, have tried to scour the internet for personal testimonies from caregivers and patients...with not much luck. Is there anyone out there now who can provide ANY info on the normal progression of this disease?...or things to prepare myself for?

    I realize that I may be responding too late for many on this notice but I do have information about Adrenalcortical carcinoma. My best friend passed away from it 6 years ago. She met a long term survivor of the disease named Tom when she was going through treatment. We all knew that this is a particular fast growing and deadly type of cancer but there is hope out there. Tom is proof of that. I would be happy to share her story with anyone that is interested.

    Ruth
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #6
    CarolSusan said:

    I don't have much information for you as I've scoured the internet for tid bits ever since my Dad was diagnosed with the same thing. I can only tell you of our experience since then...my Dad has been battling Adrenocortical Carcinoma since March of 2002, when they discovered a 13 cm tumor on his adrenal gland. He had surgery, they removed the adrenal gland and kidney, followed by radiation and within six months the cancer had progressed to the bone; from the hips, spine, to shoulders etc. His right arm just broke two weeks ago, from a bone tumor that had weakened it. He had to have surgery, inserting a rod, because the bones won't heal now. The doctors give us no prognosis as there is so little information on this rare type of cancer. He is treated by palliative home care at the moment and we live week to week waiting for the next crisis....there have been many. The only thing they can tell us is that this is an extremely agressive and fast moving. The doctor says that it is non-typical because he has pain and symptoms long before anything shows up on any scans. I know it's not a success story, but no matter how rare it is, your not alone.

    I'm 34 years old and just had a 7 cm carcinoma-bearing tumor removed from my right adrenal gland at Johns Hopkins. While the surgeon who performed the operation was excellent... and felt that the tumor was well-encapsulated and bore minimal vascular invasion... I can't rely on the procedure itself to have removed the cancer entirely. As those of you familiar with ACC know, this kind of cancer spreads if even a few cells are loosed into the endocrine system... and can wind up in the lung, bone, lymph nodes and brain. I'm frightened beyond fear. In Dec., I figured I'd live another 50 years; now, I guess I'd be lucky to live another 50 months. Does anyone out there have any information whatsoever on radical approaches to the preventative treatment of ACC? Like the aforementioned "Tom", does anyone know anyone who has managed to survive/beat this thing long-term and... if so... can you please put me in contact with him/her ASAP? I'm a fighter, and I'll do ANYTHING IT TAKES to combat this thing... if it's possible. The surgeons don't give you a lot of hope... but I have hope, because where there's life... there's hope.

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