Adrenal Cancer

[ajdziaba]

a while back I posted a topic on adrenal cancer. I am currently being treated with mitotane and steroids. the drs want to do radiation because studies they have done show a better chance for the adrenal cancer to not come back versus not doing the radiation. is there anyone out there who knows of some one or yourself about adrenal cancer how are they doing? i am just scared to think there is not enough info on it. I have two children ages 8 and 11 and a wife that I have been married to for 12 years. this has been alot on them. if anyone could help with some feed back on this case i would appreciate it. the dr's could only tell me what I read on the computer. i am just hoping to hear from someone else about this situation. has anyone else had radiation and how is it? thanks for taking the time to read this.

[friendofyours]

Hello. I was corresponding a while ago with a lady on here who had an adrenal tumor removed. She is coming from Canada to stay with me tomorrow and we are going for a holiday to Scotland. We have never met but my mum also had an adrenal tumor removed and I was very scared for her. Her tumor was removed in January, and she is slowly on the mend. She has been reading Diane Dyers cancer prevention diests and is feeding herself everything she can find which fights against cancer and has made quite a few changes in her diet such as switching from anything white i.e sugar bread rice, to brown. Eating dark green leafy veg to produce more red blood cells and help the oxygen flow through her blood better. Drinking smoothies, and giving up meat and some dairy products.

As for information. I typed in Australian adrenal problems and came up with some stories such as a guy who had survived 40 years after having his adrenal tumor removed. One thing I'm not sure of, is, if people have kidney cancer, does that mean the adrenal automatically gets removed at the same time as the kidney because it sits on top. If so then there are a lot more survivors than are written about on here. So please keep your spirits up, and think of the two ladies I know who have just been through similar to you, and I hope this gives you something to focus on.

[ajdziaba]

thankyou so much for your response. I will defiantely keep my spirits up. And I will look into the book you mentioned. Enjoy your holiday and hopefully we can talk soon. I will keep you updated if anything changes. And if you hear of anything more about this cancer please keep me informed.


thankyou

[JayLu]

Hi

Just a quick e-mail to see how you are coping with the adrnal cancer... my dad has it and he has developed cushings because of it and is very down. I feel helpless and dont know how to supporty him.

[ajdziaba]

my adrenal cancer was removed. I am on a very agressive treatment. i had radiation in the bed of the area and the chemo I am taking is by mouth. its called mitotane. i take twelve pills a day. plus the mitotane kills your other adrenal gland so i am taking steriods and potassium pills. I have lost a lot of weight and i have good days and bad. they would like me on this chemo pill for the rest of my life being I was stage 3. they have just found a spot on my liver and i will be getting it removed by r.f.a. procedure. its like a laproscopic. its only 1 cm. so they don't want to do a major surgery again. its very hard to have this cancer. its rare and they don't know much about it. my wife and children keep me going even when i am tired. just be there to support him the best you can. i am down some days too. he might need someone to talk to. i guess for me i have just acceptd what has happened to me. some days i am so angry. but my wife just talks to me and i see my children and i want to be there for them. i really don't know what else to say i hope this helps.

good luck let me know how it goes.

[Helen12]

Hi

I don't know if you guys that have already posted still check this site....but heres my story so far...

In April 2000 i was diagnosed with Cushing Syndrome this was caused by a malignent tumour on my left Adrenal gland - i had this removed on 17th April 2000...the tumour was 10cm so i had the op through my stomach rather than keyhole surgery which i believe is the most common form for this operation. I didn't have any chemo or radiotheraphy and made a full recovery after a period of 6weeks in hospital then taking steriods before my right adrenal gland woke up and started working again.

Six weeks ago i started to notice an increase in weight particularly on my face and torso... acne and an excess of hair growth on my face....first thoughts were Cushings again!!! I went to see my consultant who sent me for all the blood tests including a dexamethasone suppression test, and yes the Cushings had come back - 9years later!! I had a CT scan on Monday and have been told that my tumour seems to have returned in the same place (left hand side). I have a Pet scan tomorrow which will tell me more about what we are dealing with but i can't seem to find any information of anyone who has had their adrenal gland removed and the tumour has come back ........ theres no adrenal gland for it to be attached to so i am wondering why i am showing all the signs of cushings - so many questions???

[ajdziaba]

After having my adrenal gland removed they waited six weeks and they radiated the bed of the area in case there was any microscopic cells. I also was put on mitotane for the microscopic cells. Well that worked for a year. Over the summer they found a spot in my liver and they radiated it. 6 weeks after they did a pet scan and found 5 spots in my lungs and two more in my liver. I have just started chemo I.V. plus mitotane. Hopefully this helps.

The only thing I could say is that it was probably microscopic disease in your body. My tumor was 12 cm and they said I had it for at least 10 yrs. Didn't they do any scans over the years?

Hope all goes well and keep in touch