Did anybody had pet ct for adrenal tumor?

Hello Jen, may I ask you before surgery did regular ct showed she had malignancy? And what was her symptoms? And when did symptoms start? Sorry to ask you many questions.  And wish her well

Irene,

Please ask away as I had the worst time (and still do) finding anyone with an adrenal tumor as it is so rare.  No, the ct scan did not show any malignancy and in fact, the surgeon said after the surgery, that the tumor did not "look" malignant.  I believe the reason is that adrenal cancer is so rare (only 300 cases a year in the US) and it "looks" different than other cancerous tumors.

She had Cushings along with her tumor.  Do you have that as well?  Her symptoms started quickly around last April (and I have read that is another sign of a malignancy).  She had:

Moon Face of Cushings, Buffalo Hump, Hair loss, ankle swelling, unusual sweating behind ankle, horrible skin tears and bruising on her arms, mental issues (depression), muscle loss and pain, her blood pressure when we finally got her to the hospital was 220/180 and her potassium was 2.1 (she had hypokalemia psychosis which is a psychosis brought on my low potassium).  The Cushing's caused temporary schizophrenia and delusions.  It was horrible as she didn't believe she was ill and refused all medical treatment because her "angels" would cure her.  We had to eventually call 911 and have her involuntarily taken to hospital where she had emergency surgery.

If there are any other questions - please send them my way.  This is my life now and I have conducted tons of research on Cushings, Adrenal Tumors and Adrenal Cancer.

Jen

I am truly sorry to hear your story. I hope she feels better now. Is her cushing's gone now? How is her mental state?. Yes I have cushing.  I'm so afraid I get panic attacks for last two days. So afraid to go for pet ct next week. What size was the tumor when found?  So what you are saying is her symptoms develop within an year?

Irene,

I am sorry I hear you have Cushings too as it is a devastating disease. Yes, we believe it started out 2.5 years ago when she had a blood vessel burst in adrenal gland. She refused to follow up a the hospital saw something on the scan, the tumor was 1 cm then. 2,5 years later is was 9 cm when they removed it. Her cushings symptoms developed in last nine months.

Almost all of her symptoms have disappeared in last seven weeks. Her mental state has calmed and she lost twenty pounds. Her arm skin healed, hair is thickening etc. She still has weakness of muscles and uses a walker as her core needs to be strengthened. ( She is 70). She is also still on blood pressure meds although weaning off. Her other gland did kick in so she doest take any hormone replacements.

Have they expressed concern that your tumor could be malignant? They might just want to be careful so they can get it all out when surgery happens. Please let me know if you have any questions and I wish you a clean PET. I will let you know how my mom's goes later this month. They want her to get stronger before starting mitotane.

Jen

Jen, with all my heart I wish your mom recovery and good health.  I know the way you feel. . I lost my mom when I was 19. It was terrible pain. God bless you and your family . As for me the initial ct report showed lipid poor adenoma with follow up in 6 months.  But endo looked at hu numbers and wash out % on that report  I quess she didn't like them and decided to do pet ct.  I wonder if someone decides to wait for 6 more months , how big tumor can grow  during that time. 

Hi there, hope your mom is doing good. I had my pet ct test. Still don't understand. It showed the  same adrenal nodule which is hypermetabolic. It can be seen with both bening ang malignant etiologies.  Doctors didn't even call me. And trust me they know what I'm going through.  I don't understand all these tests can't see for sure. May be because of size it's hard to say. I don't want to wait I want this thing out asap.  Let hope for the best. Let you know as soon as I know something myself )). Let me know how  your mother is doing. 

Irene,

My mom is doing ok as she is finishing her PT and OT. I'm sorry to hear that your doctors haven't been very helpful. I would feel the same regarding removal. Please make sure you use a surgeon that will know how to remove the tumor correctly. Sometimes when they go in, they need to remove additional areas if it does look malignant. Adrenal cancer is so hard to identify. My mom's biopsy after surgery didn't come back for weeks because the hospital wasn't sure if it was cancer. They had to send it to Philadelphia's Fox Chase Cancer Center for confirmation. I also read where someone had to send their biopsy to national institute of health because no one was sure.

Do what's best for yourself. I have learned you need to be well researched and push for results. Empowered! To take care of your own health. Please keep me updated as I have thought about your post and was hoping for an update!

All the best,

Jen

Hello there Jen. Hope your mother and you are doing great. I had my adrenal surgery yesterday.  I'm still in the hospital.  Pain is very bad, but I hope I will feel better each day. They are decreasing hydrocortisone to 5o mg daily.  Surgeon says everything looks good, she is a leading chef endo surgeon in Rutgers  rwj university hospital in nj. Hopefully I can trust her. But final biopsy report is the most important as you know. She says it will be ready in a week or so.  Let me know how your mom is doing. Good luck!

Hi Irene,

I am so happy to hear that your surgery is over!  You made it through the biggest step.  I will pray for excellent biopsy results.  It sounds like you are under excellent care.  My mom never had hydrocortisone replacement as her tests showed that the other adrenal gland took over immediately.  Did you have laparoscopic surgery or traditional? I know my mom complained about the pain for the first three days.  It slowly got better.  She is now three months out from her surgery and she has really come a long way.

She finally gave up her walker at home and only uses it for long trips such as shopping at the market.  It really is needed as her core is weak from the muscle loss from Cushing's.  She lost all of her stomach and buffalo hump.  Her skin tears have healed - although she still needs to protect her arms as they can injure quickly.  She is down from seven medicines to two medicines.  She still takes blood pressure and blood thinner medicine (mainly because they found a few clots in her kidney from her afib brought on from the Cushings).

Finally, her mental health is much better as well.  She was depressed, delusional and had hypokalemia psychosis.  It is so shocking how clear and calm she is mentally now.

Just a tip. She really took almost six weeks to recover from the anesthesia.  I truly believe it hampered her mental health and left her very confused (which we originally thought was from Cushing).  She couldn't even do basic math and struggled to remember things.  She is 71 and the doctor said it made it harder for her body to recover.

Lastly, she has decided to not take the mitotane as a preventive measure.  Her scans from January showed clean but she needs to have them again soon.  I am actually battling her to schedule her follow up to get a script for a PET scan.   

Please let me know how you are recovering and your biopsy results!  I would love good news .

P.S.

Just please remember that Cushing's impacts so many areas of your health, so expect small improvements and let your body heal.  You WILL improve every day.  It even might help to write down your improvements as you go along so you will see you ARE making progress.   We had to constantly remind my mom of where she was and how far she had come.

All the Best,

Jen

Jen

 

Hey ,Jen how are you? Just writing to let you know that my pathology report came clear. It was indeed adenoma. I'm so glad. But I feel bad post surgery.  BP dropped to 100 over 85, feeling terribly weak, some ppl say it's possible cortisol w ithdrawal  and body needs to adjust to new normal levels of cortisol which I get through hydrocortisone 25 mg a day. Probably too low for me now. Hands and legs weakness, headache.  Feeling bad in general. But good things are BP drop and insomnia is gone. I hope it will get better. I really don't want to increase hydrocortisone dose. Let me know how your mother is doing.  Thinking of you)))

Thanks for information.  They called me today . They want me go on higher dose of 50 per day. Initially they sent me home with 25 a day. I think it was a mistake.  So your mom didn't get any steroid replacement?  Thats why she went into crisis.  I was close to it. Tonight I had 25 mg instead of 10. So I really don't want to increase the dose but need to do it to survive.  Yes, I'm home. Thanks again