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Adrenal Cortical Carcinoma

stancy
Posts: 2
Joined: Apr 2005

My wife was diagnosed on Jan. 16th with an adrenal cortical carcinoma (only 30 - 50 cases per year nationwide). The only treatment is mitotane. This cancer doesn't respond to chemo. I've found survivors who used an alternative treatment protocol and I have put her on the same program. She is recovering nicely and we are very confident we will beat this thing with God's help. stancy

kbarnes
Posts: 1
Joined: Apr 2005

I was diagnosed with ACC in 1979 at the age of 7 months. My treatment consisted of radical surgery with no chemotherapy (as it had not shown much improvement in survival). Now I am 26 years old and, while I am currently being treated for invasive breast cancer, I have experienced no recurrence of the adrenal cortical carcinoma. Good luck to you and your wife in your fight with this disease.

Eggypal
Posts: 9
Joined: Nov 2009

Hey Kbarnes...

I pray that you're still with us. I have a friend with adrenal cortical cancer. It would be so awesome to show her that someone beat it. Please contact me.

Thanks so much!!

stballot@yahoo.com

Max371
Posts: 2
Joined: Jun 2011

I just got involved with the cancer survivor's network because of a friend's diagnosis. You wrote several years ago. How is your friend doing? I am devastated by the diagnosis of my best friend. I am looking for any positive news for her. Please respond. Thank you.

AuthorUnknown
Posts: 1563
Joined: May 2006

There has been some interest in thiazolidinediones (TZDs), a new class of antidiabetic drugs, in the treatment of this cancer. You can read this article in the Journal of Clinical Endocrinology and Metabolism:
http://jcem.endojournals.org/cgi/content/abstract/90/3/1332

Take Care, Sharon
http://www.rare-cancer.org

WoundedAngel_2009
Posts: 6
Joined: Apr 2009

On November 24 2008 an office visit to my ARNP-C, Advanced Registered Nurse Practitioner was seeing me for a sinus infection. It was noticed that my blood pressure was extremely high. I had been in to see my regular doctor in September to have a med change because of my insurance and with him we even discussed taking all my meds away because he felt I no longer needed them. (I was originally put on a very low dose B.P.when my grandma got bad to help ease me)but I told him I felt better with and so we went through all the meds and I left. They immediately started treating my B.P and visits to the ARNP started, I am a CNA so I was able to monitor my B.P and a visit or two to the emergency room wasn't uncommon. Finally she decided to schedule me to see a cardiologist and do lab and ordered an ultrasound.
On December 12th 2008 I wasn't feeling good and went in to the clinic and they asked me if I could do a CT and have several labs done(The ultrasound had showed a shadow on my L Kidney which I didn't know yet) I had the CT and Lab and when the lab came back my potassium level was dangerously low 2.1 so I got to be admitted to the hosp later that day the ARNP came to tell me they had found a mass on the L Kidney and I needed to go to Topeka. I spent several days in Topeka getting potassium and seeing the Endocrinology doctor. When I was released I went to his office and was referred for surgery. I waited two weeks to see this doctor and when I went to my appointment I asked a question and came to find out that I couldn't see this doctor (Insurance Purposes)so we found another doctor that I could see and waited another two weeks to see her. After a day or two I got a call for surgery and the lady said that she told the doctor that there was no time till mid February and my surgeon told her she can't wait so at 630pm that Friday I was in the hospital for surgery. They did a laparoscopic adrenalectomy, of course when they checked my potassium was low again so I got some. They had advised me that there was the possibility that they would have to open me up. There was two doctors in the operating room and they saved me till last, surgery took longer that expected I think they said it was 945 when they came out to my family.
They had told me to put my thumbs together in front of me and make a fist (yea I’m doped up yet) and that was how big my tumor was………….It was a 8.3cm when found and a 11.5 cm when removed, (they said the tumor was full of blood and getting feed very well, I forget how much blood)
they had to cut me but she managed to do the laparoscopic adrenalectomy and remove the tumor still in capsulated. They told my family that everything looked good and they got it all out little did I know that anything above a 3cm they worry about and cancer is suspected. The sent my tumor to the pathologist at the University of Nebraska where it was confirmed that It was a very rare Adrenal Cortical Carcinoma - Adrenal Cancer.
I am now going to the comprehensive Cancer Center in Topeka the first words out of my doctors mouth was that they may have saved my life and that my cancer was very very rare and most doctors have never seen it (yea that would be my doctors at home and my surgeon) He has me taking the Chemo drug LYSODREN (2000mg a day) and I am doing well with very few side affects. I do have sleeplessness, I cant drive long distances, I tire easy and have spells where I sleep long times and hurt but its worth it. They best sleep I had in years was after surgery before the medication; I was actually dreaming again and alive.
I did go to the University of Kansas for a second opinion and was told that I was on the right track. And that he would do at least one bone scan and make sure I get a CT every three months; and If I was his patient I would be on the drug about two years. My present doctor says yr to yr half ???? So we will see I guess.
I was staged at a stage two with my cancer meaning the tumor is greater than 5 cm (2 inches) in size; it has not grown into tissues outside of the adrenal gland. The bad part of the Lysodren is that they said it would destroy the good Adrenal Gland left leaving me dependant on medication the rest of my life. ( You can survive without one but not with both gone……didn’t know they was so important ) So far I have been on the medication 2 months I go in every 30 day for a cortisol test and so far everything looks good and is working right.
I did have the female checkup (even though I had a hysterectomy in 2002) and will do the bowel test next week and so far they are all coming back good. Everyone tells me that I am very lucky they usually find it in the later stages and the outlook seems positive but I’m still worried; yet actually I don’t think the realization that I have cancer has hit me yet.
There is NO cancer what’s so ever in my family and her I am at 43 with cancer, I feel very lucky but the fear is there and I do look at life different yet when I cant deal I cover my head. I have 4 children 24,21,20,17, and a husband of 25 yrs that like to drink (so does the 24 yr old) and I think that Is a bigger stress than the cancer but I am NOT going to let it bring me down and pray that I am okay and it doesn’t return.

Eggypal
Posts: 9
Joined: Nov 2009

Still hanging in there? How do you feel?

My friend has adrenal cortical and she's doing amazingly well.

Hope you are too!

WoundedAngel_2009
Posts: 6
Joined: Apr 2009

I am doing okay , Still on the Miotane will be on it they say for 3-5 more yrs. We had a scare in January when my Pet Scan came back hot. They did a biopsy but the dr didnt get it right so they did another and I was diagonised with Histoplasmosis
I am not taking a medication called Itraconazole. I am also battling Influenzea A but getting along the best that can be. My Cancer Dr said he thought we was headed towards remission but I am just going day to day.

KelRose
Posts: 1
Joined: Sep 2011

My husband was diagnosed with Stage IV adrenal cortical carcinoma in June 2011. Had surgery at KU Med to remove kidney and large tumor; they initially thought it was kidney cancer. Manhattan oncologist sent us to specialist in Hutchinson, spent 13 days in hospital there, received first round of chemo there. Home for 2 days then back in hospital in Manhattan for zero WBC. On daily Mitotane (Lysodren).

This is such a rare cancer and it has turned our world upside down; I am glad I found this website tonight so hopefully can talk to others that are going thru or have gone thru this type of cancer treatment. Hope you are doing well.

lpitcole
Posts: 1
Joined: Sep 2011

My husband went for and abdominal ultrasound in Aug 2011 and was found to have a 18x13cm adrenal mass. He had numerous tests due to hypertension and hypokalemia. He was found to have high levels of aldosterone and marginally increased levels of cortisol. They attempted to remove the tumor last week and were unsuccessful. It has grown into the liver and vena cava, is highly vascular and we were told appears malignant. Yesterday they did an embolization of the vessels feeding the tumor and if it works will attempt surgery #2 in October. He has now developed respitory complications and is still hospitalized. It's hard to find much information about this disease and many support groups have very old postings. We too have had our world rocked and are having a hard time dealing with the uncertainty of this disease. Please feel free to e-mail me

bowpounder
Posts: 1
Joined: Oct 2014

Hi I want to ask how things are going?  My friend has had a very simlar episode as you explain here with your husband.

Please reply .. My name is Jeff ...

Thank you

MandyMM
Posts: 3
Joined: Jan 2012

Hi KelRose,

How is your husband doing? I was also diagnosed with Stage IV adrenal cortical carcinoma. As of today I have been cancer free since my surgery which was just over a year ago. I had been on mitotane for about nine months and my doctor recently took me off of it due to my white blood count being too low. So far God has taken care of me and I trust that he will continue to. It is nice to be able to talk to people going through the same thing so please feel free to email me anytime. Hope all is well.

Eggypal
Posts: 9
Joined: Nov 2009

Stancy

Hope to God your wife is still OK.

You said you found survivors who did alternative treatments. Could you please share that info?

I have a friend with this cancer. If I could find survivors, it would be so hopeful!

Thanks so much!

Eggypal
Posts: 9
Joined: Nov 2009

Stancy

Hope to God your wife is still OK.

You said you found survivors who did alternative treatments. Could you please share that info?

I have a friend with this cancer. If I could find survivors, it would be so hopeful!

Thanks so much!

ACCfighter
Posts: 2
Joined: Dec 2009

Hello- how is your friend doing? I was recently diagnosed with this disease in stage 2. Starting treatments.

We need those success stories!

Thank you.

spinwood
Posts: 3
Joined: Jan 2012

HI. I was just wondering if you could tell me about your alternative treatment. I am extremely interested. My e-mail is spindler.tracy@marshfieldclinic.org. Thank you.

Jamesmom2
Posts: 4
Joined: Mar 2012

Please share your treatment. My 9 year old has metastatic adrenal cortical carcinoma.Thank you. jeffandlisahelmuth@gmail.com lisa

schoe
Posts: 1
Joined: Jul 2012

I was diagnosed this past January with adrenal cortical carcinaoma after a short bought of elevated blood pressure. Had prostate cancer surgery and the doctors saw my BP was high (160/100). After about 5 months of trying to figure it out, I went to a cardiologist to figure out the BP. He suggested an ultrasound which showed a large mass around the kidney area. After an MRI and CT scan, I was referred by my urologist to a surgeon in Tucson for removal. Tumor was around 11 cm. The surgeon thinks he got the entire tumor and said it came out pretty easily. He said not to go on Mitotane(he said it was very toxic) since he didn't think it would return. My urologist is a little less optimistic though. He has talked to me about the aggressive nature of this type of cancer and statistics unfortunately back him up. Mine was stage II which has some hope of not recurring. I had my first CT scan in April and the results were good. I am a little nervous about my next one in 2 weeks though. After doing some research, it doesn't make you feel so great. Anyway, I know this is God's will and He has the master plan. I completely have my trust in Him for whatever the results may be. It was nice to read some of your guys' thoughts about your situations. I wish all of you the best and will be praying for all of you. If you ever need to talk or anything, feel free. It sounds as if we are in a very small, one in a million group:) If you all have any new info, stats, experiences that work for you, I am all ears. God Bless you all and thanks for listening. Ron
ronskins@cox.net

Suha
Posts: 2
Joined: Aug 2012

Hi! there,

I am from Maldives and my husband was diagnosed with ACC last March. He was having gastritis real bad so we consulted a doctor. He did a scan and said that there was a huge mass in his abdomen. So we flew to Bangkok where they immediately did a surgery and removed the whole thing with six lymph nodes and left adrenal gland. Lymph nodes were cancer free. It weighed 1.2 kilos. The doctors said that they are pretty sure that it was removed completely. But cannot give 100%. Since then we have again tested him last June. His bone scan was normal and PET scan was cancer free. But they found a 2cm cyst in the bed where the tumor was. So have to go back in September again to get it checked and see if it is the old tumor recurring or just fluid from the operation. He was not given chemo or medicine. Fingers crossed.

Regards
Suha

CassieRene
Posts: 1
Joined: Nov 2013

I thought maybe I could shed some light where it seems to be dim with this rare type of cancer. I was diagnosed in 2009 with an adrenal tumor. Symptoms which led me to the emergency room included: abdominal pain, acid reflex, bloating, constipation, extreme fatigue. This all was occurring for some time prior to my hospital visit. MRI concluded there was a 14 cm mass on my right adrenal gland which would need surgical removal ASAP. At the time, I was a 33 year old Female. Surgery was a success. They were able to remove the entire tumor laparoscopically with incision as well. The scar is minimal and was the least of my worries at the time. It was a very invasive surgery so recovery was long and painful but tolerable with time. Pathology concluded it was stage II ACC that had not metastasized. my Surgeon described it as, "scooping out ice cream." Guess that's a good thing. My Oncologist placed me on Mitotane for two years. I had horrible side effects with this drug: nausea, vomiting, dihareaha, constipation, anorexia, rapid weight loss. Worst two years of my life but I managed to keep faith and follow through with my treatment. I have been through with the Mitotane for over two years now and feel 100%. All bloodwork, scans, check ups have been clear and on target since surgery. July 2014 will be my five year mark of being cancer free. There is hope with this type of cancer. There are success stories and I am proud to be one of them. My best advice would be, don't read the statistics don't read into too much of anything the Internet has to say about ACC. There isn't much out there and what is...is grim. It's only discouraging. You are not a statistic. You are an individual. Listen to your body, your heart and your Doctors. I now have scans every six months, visit my Oncologist every three months and visit my Endocrinologist every few months for maintenance. The Mitotane did kill off my existing adrenal gland so now I am on Hydrocordisone for life....which means a long long time. 

ravenchick
Posts: 1
Joined: Jul 2014

My Husband has been diagnosed with ACC, stag IIII.  It is already a very large tumor and into the vena cava vein and to the lungs.  We've been told we can't do surgery, and chemo would only give us weeks, with all the horrible side effects.  He is on mitotane and a ton of other pills.  Any one out there with any suggestions?  We've been told he doesn't have much more time left.  The other posts I've read don't mention the vena cava vein or lungs.

Pandoras_box13
Posts: 4
Joined: Apr 2013

How are you and your hubby doing?  I'm sorry I haven't been on the boards since you posted your message and I'm also sorry no one has responded, at least on the boards.  

I had surgery April 2013, lost a kidney, adrenal gland and over 1200 grams of ACC tumor.  It was in the inferior vena cava and the lymph nodes.  Nodes were clear at biopsy, so I was told.  My oncologist treated it as stage IV even though officially it was late stage III.  I didn't do mitotane until late August.  Not really my decision -- some of the staff at the oncology office were convinced I could not get the mitotane locally so they screwed around a while before my pharmacy informed them that it could be done.

Fast forward and here I am.  Tumors in both lungs and the liver.  Lymph nodes near the pancreas are screwy.  My most recent CT scan of two weeks ago indicates that most of the tumors are stable.  However, two that were stable between previous scans grew on this last one and tumors/masses that were growing between previous scans were stable this go round.  Go figure.  I'm doing infusion with adriamycin and etoposide.  Due to kidney function, even though in normal range for a one kidney patient, they will not try cisplatin.  Still doing mitotane with infusion although I despise the side effects of the mitotane.  Due to previous rounds with cancer, I do not have a large intestine & the mitotane is essentially "Montezuma's Revenge on steroids" in a bottle if that makes sense.

I do have a lot of back pain across the mid rib region.  I am exhausted all the time from the chemo.  I have no energy, no stamina and feel as useful as a bump on a log and that's on a good day.  Wink

I would ask why they cannot do surgery.  I had an excellent surgeon at UAB even though everyone thought I'd be better of at MD Anderson in Houston, TX.  If my insurance were accepted there, I might have considered it.  As it is, well, I gotta do what I gotta do.

Average life expectancies are predictions and based on statistics.  Just because the doctor says you won't live a year doesn't mean he/she is correct.  In March of 1997, I had surgery for an abdominal mass.  Turns out I have mesenteric fibromatosis.  The tumor is itself not malignant but it is very aggressive, especially in females.  I was told point blank that "barring divine intervention, you will NOT live to see your next birthday and if there is anything you want to do before leaving this earth, now would be the time to do it".  I'm still here.   Your hubby will likely have issues with depression -- I know I did and still do.  Bottom line is that no mortal being knows the date that will be inscribed upon his tombstone.  However, if your hubby (or you) is convinced that his demise is imminent, that can become a self-fullfilling prophecy.  In other words, if he believes he'll be leaving mortality soon, chances are he will.  This is a fight and it is not for the faint of heart.  I know I would have given up long ago if not for my awesome mother.  Well, that and the fact that Heaven doesn't want me back & Hell doesn't want me taking over down there -- I'll be installing some kick a$$ air conditioning.  Cool

My family doctor and my specialists, even the oncologist, are amazed I'm still standing since I shouldn't be here.  There are days it is hard to deal with.  My heart goes out to you and your hubby -- I don't know what you are going through, but I have a very good idea of where he's at.  

I wanted surgery to remove the tumors in the lungs, liver and resection bed, not to mention one that is in the left psoas muscle and is a sizeable tumor.  No dice.  Thanks to the mesenteric fibromatosis, abdominal surgery is forever off the table.  I do not have any free gut available should the surgeons damage any part of the small intestine, and with the MF growing in and around the gut, it's nearly impossible to tell what's tumor and what isn't.  That being said, my oncologist has told me that this Christmas, if I live that long, will probably prove to be my last.  But every Christmas I've had since 1997 should have been my last.  My oncologist talked me into trying 2 rounds of chemo -- I'll be doing the 7th one at the end of the month.  I do have a couple of mutant genes in the tumor that was removed and after 3 more rounds of infusion (ending about mid November), they are going to try one or two drugs that supposedly work specifically on the mutant genes.  But no matter what, it IS just buying time.

I'm sorry you guys are having to walk this path.  I wish no one else had to walk it -- it's a hard one to travel.  But you just have to put one foot in front of the other and walk -- easier on some days than on others.  If your sweetie can handle the mitotane, I'd say he could probably handle the infusion chemo if he wanted to try it.  I do have nausea, but nothing that's earth shattering.  The lack of energy and stamina drive me nuts.  I get a massive dose of steroids and kytril just before infusion and a neulasta shot on the last day of each round of chemo.  But by the end of November I will have reached my lifetime dosing limit of adriamycin, so the infusion will be done, regardless of whether it works or not.  It's working a little bit -- not a lot.  The best thing for ACC is a scapel in the hands of a dedicated and gifted surgeon.  Just my two cents'.

I'll be in and out -- not sure when I'll see your next post, but I'll try to be on the lookout for it.  One thing I would ask from the perspective of a patient with stage IV recurrent metastatic adrenocortical carcinoma -- don't treat your husband as though he were made out of spun glass that will shatter if you breathe too hard on him.  My family does that to me.  I know they do it out of love, but it's hard to deal with.  Hope that makes sense -- sometimes my brain cells don't work well.  lol  

 

 

 

rejohnston01
Posts: 2
Joined: Mar 2014

August 25th 2012 I had surgery done to remove stage 4 tumonr. After a little over a year of mitotane twice a day, I couldn't take anymore. Last month a full scan showed me to be free of the cancer and free from stage 3 lung cancer. I fight with thoughts of why me and then I wont to know how many serviors of late stage 4 people are there. My prayers are with any one out there that is about to take on the fight and to say it can be beat. I was told that I was terminal and mow I was given a "normal life expectacy".  

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