Suspected stage 4 cancer - adrenal mass

[Silkieschickens]

I have stage 3 lobular breast cancer and was just told today my CT showed a 3.5cm by 2.5cm mass on left adrenal gland which they think could be stage 4 and incurable. I wasn't able to ask questions as they were too busy but obviously lots of things I would like to know. They will see me again in 2 weeks and another CT imminent.

Does anyone know about adrenal glands? I may go private to try and find somebody who will help me but not sure who to go to. I had an enlarged adrenal gland in 2017-18 on a similar CT scan but other side , they said to get GP to monitor and he said no. I have felt ill since then and been to doctors so many times but sadly this looks like it has been picked up too late for me and my kids.

So sorry to read this. I cannot offer any advice other than to say I am thinking of you. I'm sure other people will be along to offer better words than me.

Regarding adrenal mass in 2017 why did your Gp refuse to follow that up?

Thanks Manky My GP just said how does he expect me to monitor it and I remember thinking which of us is the doctor here and then he said you went private for CT so its nothing to do with us, private problems need to be treated privately. The issue with that was CT scan was done by urologist and think the glands are a different department so needs new referral. The urologist said at that time it was OK but needed monitoring. I have tried contacting that urologist again to see if he has CT still or knows how to get it.

Sorry to read this, and so sorry to hear you’ve been treated that way, that’s outrageous. I can’t offer any wisdom I’m afraid, hopefully someone else can soon.

Thanks very much. I have managed to find some research articles online which say at 4cms there's a 30% chance its cancer and mine is 3.3cms but it was flagged as potentially cancerous. It also said between 3cms and 4cms surgery is recommended even if benign. Apparently CT is method used and they see if blood runs through it, cancerous ones it runs through and think said jagged edges. Said normally by CT they can't be certain and need surgery to tell. Just hope they are not going to hold everything up for masses of testing of this.

Annoying that they are saying surgery will be cancelled if this is cancerous as that does improve survival rates quite a few percentage points. I guess I could pay privately but hate feeling I have been written off already and also I seem to have no say in this. I may try phoning the breast nurse on Monday and seeing if can get anything done or a message through or see a different doctor. Also trying GP to see if they can do anything. I just want some treatment not 10 million tests and a change of plan each time. I found a doctor you can message for £55 so trying that though annoying you have to pay to be able to ask a question.

Oh @Silkieschickens I'm sorry your GP os so awful I read the other thread. Any chance you could make a complaint and change surgeries? Any chance anyone (DP) could be a warrior for you?

I have everything crossed for you.

I know nothing about cancer but you've reminded me that I need to book in for a mammogram.

Thanks Wally This was my former GP but one I have now initially didn't refer for breast cancer, the former one was better but moved areas. He referred for lots of other cancer tests due to bleeding but they all came back all clear.

My DH is an excellent nurse but definitely not a warrior but he is also an excellent cook and cup of tea maker so I am well looked after. Just terrified for the kids but trying to teach DH, he is very good at the practical things like cooking but can't do school, friends or emotions and youngest is SN and needs lots of support.

My GPs is linked now with lots in area so its a lottery who you get but I have now got a good one I can ask for. I have sent her a message but its a very specialist area. Just worried about the pace of it now, I was expecting to be given a surgery date today and now they are on about scrapping surgery altogether if adrenal gland is cancerous but they need CT then 2 week wait for doctor then adrenal gland surgery and then wait for biopsy and all the time the cancer in breast is growing and not being treated. I will try and phone nurses on Monday and see if can get any information out of them but one today was just don't worry it will be fine when it is anything but fine, she's lovely but that does not help anything.

Oh how awful this must be for you. I am so sorry. If you are London based and decide to see a consultant privately, I can recommend:

www.thelondonclinic.co.uk/consultants/mr-gerald-p-h-gui

Have you had a second opinion?

Thanks 79 for the recommendation, useful to have, and bloodywhitecat. Not had a second opinion at the moment. Are just researching, DH in France as he is French and his friend has links to a top hospital in Paris so we may get an opinion from them and maybe one privately in UK but trying to find out as much as we can first. Will phone my hospital on Monday but not holding my breathe for getting anything useful from that but worth a try.

I'm sorry I can't help you but I just want to wish you all the luck in the world with finding the right person to help and that you get any surgery you need quickly

Thanks very much.

my husband has also adrenal cancer.
any advice you can give?
thank you