Adrenal Cortical Carcinoma

WoundedAngel_2009 said:

My story
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 said:

How are you wounded angel?
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 said:

My story
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.

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

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.