Cancer Survivors Network

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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.

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

You may have found your answers, but I thought I would try and help. My grandfater, who will just be turning 70 was recently diagnosed with adrenal gland cancer-stage 4. Here is the intersting thing about this type of cancer-it is difficult to detect and is usually found after it has hit stages III or IV, 1 out of 1 million people develop this type of cancer and once it is at one of these stages, surgery is out of the question and it is "maintained" by chemotherapy. Doctors are positive-they usually are. My grandfather is doing very well. There isn't much else dr's can do especially at stage IV. But as I said, it can be "maintained" or even reduced by doing the chemo.

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.

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

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??

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

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.

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

I will pray for you

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?

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.

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

There is a new drug and a clinical trial I just fuund, go to http://www.tgen.org/index.cfm

How are you doing now. My 12 yr old son was diagnosed in September, we are still in the hospital.