Welcome to the Cancer Chat community Dillos although I'm sorry about your husband's diagnosis.

Unfortunately we haven't had many posts about adrenal cortical carcinoma on the forum lately but our members do understand the difficulties of living with and supporting someone with a rare cancer diagnosis and hopefully you'll hear from them soon.

You can also find support and advice on the rare cancer alliance website and our nurses are available by phone on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Do keep chatting with us here on the forum if you find it helps Dillos as the community will do all they can to help you at this time.

Kind regards, 

Steph, Cancer Chat Moderator

Hi there Dillos,

I I've recently been diagnosed with Acc ,I am currently on mitotane . weirdly your post was the day of my operation to remove the tumour that had grown on my left adrenal gland    . Now recovered from the op I'm like I said on mitotane and due 6 weeks of radio therapy . frightening for me ,but I believe this will decrease the chances of it coming back . i hope by now your husband and yourself have found the right support ,and therapy  . I've found that macmillian cancer support have helped me,  but being alone in this as in I have no other person going through a condition like mines because of how rare it is  ,its difficult for me I know not everyone is the same . for starters I'm a female and I'm almost 22 I don't but do believe my line of work had a lot to do with my cortisol levels being a mess ,as it was very stressful .. i just wanna know of someone elses experience as i can listen to specialists all day ,i trust them but day to day they dont experience that . I ignorantly was a person who didnt think how much cancer and after care  can effect you . and after 5 months I've actually accepted the fact that I have or had cancer . since the op ive had 2 CT scans and 1 showed 16mm nodules so small I do not need to worry but hence the radio and also the tablets . i hope these do not grow . i was wondering if you guys have found or come across any similar situations as like I said it's a thing where not even the pharmacists know my meds it's always a look of confusion.  local doctors have to Google it ,like I do not judge them cancers vary and come in many forms I just feel alone minus the support of my amazing family and friends.  

i hope to speak soon  

thanks.  

Rei 

Hi, Rei, Just saw your post but I am on my way to work and will post more later. Best of luck in your treatments. My son had the same cancer and went thru the same treatment after surgery. This cancer is rare and even more rare was a gene mutation found when he had genetic testing done. Can't stress enough to get that testing done early like now could be that you also have a gene mutation.

Good morning,

I'm terrible with replies recently.  just want to say thank you for the advice about the  genetics people as I've been due a appointment since my diagnosis in March and still no word . I'll make sure my consultant gets on to this asap .. as supposedly people of my culture/country in the south America's tend to have this gene ... not a clue to be honest but I've been told but don't read into those things I prefer facts . so again thank you and 3 more days and radiotherapy is over :) happy as lamb and cannot wait to recover and start over . I hope the same can be said for your son .

Hey

Can I ask Rei what your first symptoms were of your adrenal cancer? And how you were diagnosed.

i am waiting for a ct scan on my adrenal glands and pituitary gland as I have all the symptoms of cushings. I feel it’s my adrenal gland however as the swelling is there, and I’ve also started having numbness down my left hip and left thigh 

of course I know it’s a slim chance that any tumour is malignant but I’m interested in the symptoms you guys experienced? If any? And if any of you had symptoms of cushings due to the over load of cortisol

thankyou, and wish you all well 

Laura x

Hi there,

My first symptoms (which I ignored ).we're a severe cycle of stomach pains like stabbing pains ..these were bearable but eventually increased within around 3-4 months .

Otherwise my symptoms were hormonal imbalances which were put down to contraceptives. 

Okay I'm sorry to hear that my love , I'm no doctor and cannot provide anything other than my own opinion and what's happened to me but I never once got any numbness at all .only post op which was expected as I had a epidural .

Also as I said I had a hormone imbalance so I didn't have enough cortisol in my body.  

hopefully this this can help in some sort of way but some advice .. be very consistent with the hospital always phone for results if things are moving at slugs pace.  note down any changes to explain to a specialist ,and also make them rule out all possibilities . mines was gonna be left at a gyne problem .. and that escalated.. swiftly . Best of luck with the Ct scan ,try not to stress x