Adrenal Cortical Carcinoma

ravenchick said:

ACC

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.

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.  

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.  

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  

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".  

schoe said:

acc
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

Wanted to see how you are. My situation started out similar to yours. I know your post is old but wanted to try and reach out. 

rejohnston01 said:

told I am cancer free

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".  

its good to read such a positive cancer free!

thank god.

I am going through ACC stage 4 treatment 

chemo and radiation; adrenal 7cm speeded to liver and back bone;going through chemo and radiation 

please mail your suggestions any (alternate treatmen) rajeshg83@gmail.com

its good to read such a positive cancer free!

thank god.

I am going through ACC stage 4 treatment chemo and radiation;

please mail your suggestions any (alternate treatmen) rajeshg83@gmail.com

lpitcole said:

My husband went for and
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

@ ipitcole how is your husband now?

Our 17-year-old daughter, Tallulah, has just been diagnosed with the above and on day 2 of chemo however the Doctors have said that she hasn’t got long left.

It was only a few weeks ago she was fit, healthy and normal, now this, our world has collapsed, and we are devastated.

Whilst we are told there is no hope, like everyone in this position we refuse to give up and will try anything to get our little girl back.

Can anyone advise on anything alternative that we can explore quickly? We would go anywhere in the world. Currently Tallulah is in La Fe Hospital Valencia, Spain

Thank you, I realise most people on this network have heart breaking situations in that respect, we are not alone. If you have any info/advise, please feel free to email as below

peter.beard@live.com

It is with the deepest sadness that on 20th November 2017 our little girl passed away after suffering with ACC for literally 2 weeks. The whole process took about 8 weeks of tests to arrive at ACC 2 weeks before she died. 

We are totally crippled as a family of 3 as there was no warning and it all happened so quickly, even up to the diagnose, she was reasonable ok and living normally.

Our little girl has gone and losing a child is just about the worst thing that can happen to a parent however for anyone else that finds themselves in this situation, our only hope was FUDA hospital in China http://www.fudahospital.com/en_asp_new/ having trawled the world for alternative treatments. Alas Tallulah was too weak to travel in the end. At stage 4 perhaps this would been a very long shot but we were desparate.

We would be pleased to offer anyone support either with the knowledge we have acquired or just someone to talk to that really does understand, our door is open peter.beard@live.com

Pete

this makes me so happy to come across. I'm currently on mitotane & have my next scan next month. I was dignosed at the end of 2021 & did radiation after surgery & delivering my son. We thought we were in the clear but I had spot on my lungs very small but turned out to be the same cancer. Luckily there hasn't been anything else that's popped up so I'm pretty hopeful I'll be just fine as the meds don't effect me too much & I still can be as normal as possible w/ a toddler lol thanks for sharing ur story, it definitely makes me feel better knowing someone else has beat it!!

Hi everyone,

I wanted to give a quick update since it's been awhile. The nodules on my lungs are still slowly getting bigger, I think the mitotane has slowed the growth process but not stopped them completely. I will be getting my port placed in the next few days then starting chemo after the holidays. I was trying so hard to avoid this as I didn't want my son who is almost 3 to see me sick but I have to keep going for him. I opted for the more aggressive chemo so hopefully all goes well & we see some results sooner then later. Keep u guys posted as much as I can!! Idk if this is ok but I have a few links to help during the process. I know we all have things going on so no pressure but I really appreciate any help at all! Even advice or just the group of ppl going through the same process as me :)

[Link removed by CSN Support Team]