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Adrenal Cortical Carcinoma

Posts: 4
Joined: Apr 2013

Hoping you experts out there can offer some help.  :)  This is my 4th trip through "cancer land" and the first time through was more than enough.  

I was officially diagnosed when pathology came back May 10th of this year.  I had major surgery 4/29 for the tumor (1028 grams, late stage III, infilltration of lymph system and inferior vena cava, but lymph nodes supposedly clear of cancer at time of pathology).  I lost a kidney -- long story and I know that is common with this surgery, but I'm still peeved as I had been asking for a CT scan due to issues for quite a while and it took finding a new doctor to get a CT scan.  Previously my health care provider said it was nothing more than an enlarged spleen and no big deal.

Anyway, I was not put on mitotane until 7/13/2013.  Due to poor kidney function (eGFR of 30-35 depending on which day it is), the upping of the mitotane dosage has been slow.  I was originally on florinef along with the mitotane, then the endocrinologist put me on 40 mg of hydrocortisone instead to go with the mitotane and probable adrenal insufficiency.  

Going into surgery, I had no apparent metastases.  Probability of micro metastases is extremely high, hence the strong recommendation for mitotane in spite of poor kidney function.  CT scans and PET scan prior to surgery showed zilch in the lungs or liver.  A lung scan done post surgery (mid May) showed a significant PE, but no nodules or anything.  First post-op CT scan in August showed 4mm nodule in upper left lung.  General concensus is that it is likely to be metastasis.  Next scan is in a month.  I'm out of allotted doctor visits for the year, so there was no real point in having a scan earlier.  I'm on a limited budget, so running to the doctor for "the hell of it" is out of the question.

So here is my issue.  I'm a raving lunatic on this stuff.  I bounce off the walls at the slightest thing.  I literally alternate between either an overwhelming desire to strangle the living snot out of someone, pull up trees by the roots and hit someone upside the head with the tree, or walk into the path of an oncoming speeding train or semi (tractor-trailer).  I live about half a mile off of a fairly well traveled highway, and have to cross a R/R track to leave the house anyway, so those options are very viable.  Not saying I want to call it a day and crawl in the dirt via suicide, just that there are days that is an overwhelming urge for no apparent reason.

A couple of weeks ago, I hit what I hope was rock bottom.  The likelihood of metastasis to the lung, along with other things going on at the time, sent me down to a dark place emotionally.  I decided the hell with the mitotane and the hydrocortisone as I had had enough.  To me, it seemed like this whole escapade this year was for nothing other than for the insurance to pay out a hefty sum.  It still seems pretty much like that -- I am down a kidney and the abdominal scar is newer and a lot longer (bottom of breast bone to pubic bone), but other than that....

I decided I didn't want my oncologist reading me the riot act when I go back for blood work (I don't have a return appointment until January, 2014), so I went back on the mitotane & hydrocortisone.  Been back on both for a week.

I'm turning into a raving lunatic again.  Anger (okay, more along the lines of black rage) hits from out of nowhere.  Little things that shouldn't be that big a deal ARE a big deal.  My memory is sketchy -- I will forget things I've known all my life.  As is usual with the mitotane, I have no oomph, no energy, no stamina, no desire to do much with the real world.  I don't even feel like being online that much, although I have been trying to work on my family tree, something I've been doing off and on for about 20 years or so.


Do I ditch the mitotane and let whatever happen occur?  If the nodule is bigger, I first thought I wanted it gone, stat.  Now, I wonder if it's worth it.  What good is it to take the thing out if it's just a case of "rearranging chairs on the Titanic"?

FWIW, I am not married, I have no ex, no current, no children (unless you count furbabies of which I have several).  I'm an only child and my dad died the morning Katrina hit (not related -- he died of cardiac/respiratory failure complicated by MRSA and probable liver/pancreatic cancer -- We both have/had Gardners Syndrome)

Mom says she can definitely tell a difference being on the mitotane/hydrocortisone and being off of it.  She also said there was a major improvement after being taken off the florinef and being put on the hydrocortisone.  But emotionally, I'm probably more stable w/o the mitotane & hydrocortisone.  Then again, I was going off the deep end before I got the CT scan at the beginning of this episode, so I don't know what to do.

Does any of this sound familiar to you guys?  Any suggestions of what to do?  Insurance company claims there is no "emergency" override even for cancer patients, so the only option is a real emergency and a trip through the ER, something I do NOT do unless I'm more dead than alive, literally.  I absolutely HATE going to the ER.  I get breathless at the drop of a hat, even just talking more than a few minutes with bring it on.  It appears to be worse on the mitotane/hydrocortisone than without it.  Current dosage of mitotane: 2x500mg 3 times daily + 40 mg hydrocortisone.


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