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Adrenal gland cancer

kmonteith
Posts: 3
Joined: Dec 2003

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?!

kmonteith
Posts: 3
Joined: Dec 2003

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

brasser
Posts: 1
Joined: Feb 2004

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
Posts: 2
Joined: Mar 2004

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
Posts: 2
Joined: Jun 2004

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

mtino
Posts: 1
Joined: Oct 2009

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.

dancer21
Posts: 18
Joined: May 2003

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
Posts: 1
Joined: Jan 2004

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.

Prema
Posts: 2
Joined: Feb 2005

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
Posts: 2
Joined: Apr 2005

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
Posts: 3
Joined: Apr 2009

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
Posts: 6
Joined: Apr 2009

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

mmsetta
Posts: 2
Joined: Jul 2012

Hello to everyone. Your tumor sounds very similar to my wife's tumor removed at around the same time. Her's was 14 cm, but encapsulated as well...same exact thing as your case. Since then she has had a baby, and another surgery after a scan in 2011 showed something on her intestine. It turned out to be just benign lyph node. So, since then she is totally of Modotane or any other preventative meds.

Here is my delemma. the only residual effects of the surgeries is a very bloated stomach, which, a year after her last surgery, doesnt show signs of reducing. The rest of her body,due to her hormones coming back in line, has fully recoved to pre-tumor form. But, her stomach is bloated to the point of people assuming she is pregnant daily. She has a thin stature so it is all the more obvious.

In the grand scheme of things, it is not much to deal with considering the alternative. but, for her, I know it has become a major issue. Not only does is force her to recall her surgeries and the fear of recurrance, but it is just a general self-esteme thing and an annoyance.

Her surgeons just passed it off and not a problem. She is seeing a PT, but I don't really trust what she is saying. Her stomach bloats up and varies daily - some days it protrudes a lot, then the next day it is back down.

for a while now we've been just dealing with it. but she brings it up daily and I am at the point of trying to seek out alternate answers.

I am wondering if anyone has any suggestions???? Has anyone ever dealt with the boating/swelling for this long a period of time???

Any help is much appreciated and God be with you. Thank You.

JeromeNLady21's picture
JeromeNLady21
Posts: 1
Joined: Jul 2012

My wife was diagnosed with adrenal cortical cancer back in 2009. The tumour and adrenal gland was removed by surgery. She did not undergo any medical treatment after the surgery. Then on June 2010 due to an appendicitis the doctors found that the cancer is back and had spread to her stomach. (this can be scary for you and I have no intentions to). September 2010 she started her Mitotane medication. She is currently on 2.5grams AM and 2.5grams at night. 3 months before she started her Mitotane treatment she took lots of Vit C (6000mg) and Omega 3 F-Oil (4 cap) everyday and I believe this has help her as the first 3 scans she had (CT scan every 3 months) have shown significant changes on the tumours in her tummy. Tumours shrunk 30-45%. We stopped the Vitamins as one of the Oncologist (we are seing 4-5 different Dr depending on who's on duty) said they it may interfere with the Mitotane.

AS on the case of your wife, on my opinion, It would be honestly good to have it checked, scanned and tested. My wife as I said did not take any medication after her surgery as the surgeon said that they may have taken the tumours out just right on time before it has spread out. She was declared clear from cancer 9 months after her scan and 3 months after that the cancer is back in her tummy.

Early detection is always good as it gives us a better chance of beating cancer. I hope i did not scare you and always remember all our situations are different. One of my regrets is that my wife did not have any treatment after the surgery. We could have prevented the spread of the cancer if we pushed for the surgeons to refer us to the oncology specialist for further analysis.

Have more faith...and always hope for the best.

At the moment I am looking for those who are taking any supplements while in Mitotane...I just have a strong suspicion that the Vitamin C (high dose and high quality) and Omega fish oil have help the treatment... for any comment on this please feel free to do so...

Thanks and all the best to everyone! God Bless!

Jerome n' Lady
Auckland, NZ

grant.anita
Posts: 1
Joined: Dec 2012

My husband was diagnosis with adrenal cortical cancer in May 2012. No surgery but Mitotane building up the dosage to 3g 4 times a day. We believe this is too high and has caused a lot of side affects and currently he is not taken any. Blood test show he is in the therapeutic range. He has had chemo but this did not appear to be working. Kidneys not standing up to it plus other complications. He is also doing Vitamin C, supplements, a change of diet (alkaline). His lumps have shrink or stablised but unsure what is helping this to happen. It could be all of the above?

Hope all is going well with your wife, and that she is still taking the Vit C and Omega 3.

Take Care
Grant.anita
Hamilton New Zealand

Emmasykes
Posts: 2
Joined: Sep 2013

Hi Jerome, I've just had a 10 cm cancerous tumour removed, and just started mitotane, currently on 4 tabs a day, building up to 10 a date, I'm also taking supplements,  I take a large dose of vitamin d3, cucumin, gloucosomine and makula honey.  I've also stopped eating red meats, no diary, or anything processed.  I have a fruit smoothly every morn to get my vitamin C To which I put flaxseed in, I've run all this past my oncologist who said would be fine.  ive seen two oncologists and both have said any over counter vitamins ok?    I do hope your wife is ok, if you would like to chat more please IM me. Thanks Emma 

GY Moon
Posts: 1
Joined: Jun 2009

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.

Kaymb
Posts: 3
Joined: Apr 2009

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

WoundedAngel_2009
Posts: 6
Joined: Apr 2009

I will pray for you

dhigh
Posts: 2
Joined: May 2009

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
Posts: 2
Joined: May 2009

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.

anjilaka
Posts: 2
Joined: Sep 2009

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

4casey
Posts: 5
Joined: Nov 2009

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

102353
Posts: 2
Joined: Jun 2004

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.

sandeeb
Posts: 2
Joined: Mar 2009

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 Dick 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

4casey
Posts: 5
Joined: Nov 2009

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

suzanne-m
Posts: 1
Joined: May 2010

One of my close friends was diagnosed just a few weeks ago with Adrenal cancer. She had surgery two weeks ago to remove the adrenal gland, a portion of her kidney, and a portion of her liver. She went to have her staples removed two days ago and the doctor told her she had Stage IV and that it was now in her blood stream. I highly suggest the book "Nothing to Fear" The Key to Cancer Survival by Larry Burkett. He provides invaluable information for alternative therapies I would have never known about! After reading the book (super easy and fast read) I felt like an expert. That's important since there's little time to make decisions. More later...

Ococ321
Posts: 1
Joined: Apr 2013

My wife (she live in Mexico)notice a tumor in middle of December 2012 that turned out to be a adrenal cortical carcinoma. In January this tumor has 31centimeters by 15 cm and had a date to surgery in Feb the 8th but the doctors told her 2 days before that the tumor was a attached to a vein and they couldn't doit. I decided to send her back to her home in Puebla and call to a surgeon that become doctor in alternative medicine in Peru, his name is Javier Haro Salvatierra. He advised me to buy a medicine called Ganoderma Lucidum (chinese mushroom). These comin in envelops, 2 x 1, 3 x 1 and ganochocolate. like a cofee filter size. Mix 2 of 2 x 1, 2 of 3 x 1 and 4 of ganochocolate, and 8 oz of hot water, shake well and take a spoon in the morning and another in the afternoon 30 minutes after the meals. To be honest I was desperate and did not what to do besides pray. I just became citizen and I don't chance to bring her to US yet. Well after a month, the tumor shinked, now is 17 cm by 8 cm, she is eating normal and gaining some weight. She just started a double dosis and I expect to she can go for a surgery (with much less risk) in a couple months. I couldn'd find a retailer in Mexico so I just ordering a second package os 2 boxes,2 boxes and 4 of ganocholate to a friend in Peru. The cost is not really much, it cost my about 300 dollars and it last for 2 moths with a single dosis. I hope my experience helps other to find a hope, God bless you all

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