Shock potential diagnosis

Hi Sparkle_katie and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you've recently been told that you might have kidney cancer and it's natural to feel as you do. If it does turn out to be cancer then most people feel much better once they know what the treatment plan is.

I'm not a member of this group, so don't know what the normal timescales are for scans, etc for this type of cancer, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be easier for the other group members to spot it.

While you're waiting for replies, it would be great if you could pop something about your tests so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi I'm sorry to here about your suspected kidney cancer diagnosis, I had a kidney removed 8 months ago now due to a very large tumor I was very fortunate in the fact it was dealt  with quickly because of size and they new it was cancer but it is the mental side I found harder to deal with ,could not take it in as it was out of the blue, my husband wasn't very understanding at first think it was a shock to him he had to process aswell ,please try and talk to other family members or friends the more you talk about your feelings and thoughts I found helped ,I'm sure others in this community will be in touch you are not alone .sending you love hope you will here soon x

Hi, 

I'm new here too, and reading your post, sounds familiar. I am 53, no children, but also had an angiomylipoma discovered on at least one of my kidneys, possibly both. 

I too feel like I've been left in limbo. Tbe communication has been shocking. A Dr phoned me to tell me its "more likely than not" that its cancer, and that was 3.5 weeks ago. 

Received letters today to give me appointments for another CT, and a phone consultation with an anaesthetist.  Er, would someone at the hospital please tell me why, and not leave me guessing?  Biopsy,  I have to imagine.

I absolutely feel for you, especially with your wee one. I hope you get positive results from your biopsy and scans. Sending hugs. x

Hi hun. Kidney cancer is quite slow growing so that's why they are not in a hurry plus if it's only in your one kidney you have a good prognosis as they can remove it , I know it's scary and your worried sick I don't blame you ,can you not phone your doctor  and tell them you can't wait any longer as it's having a bad effect on your mental health. Take deep breaths and go on walks I find it therapeutic and keep busy it will help xx

Hi Betty Boo, Your words are very comforting; thank you for sharing. I didn't know that kidney cancer is quite slow growing. I really didn't know anything, as I've had no experience of anything likehis to go from.  This community is really helpful and I'm glad I joined. Some post titles are a bit scary (!!!!) and I'm not ready to read those yet!  

Update: I had my telephone consultation today with anaesthetics.  It's to do with my collecystectomy - gall bladder removal. Nothing to do with my kidneys! 

I really wish the hospital would explain things better. Its like a guessing game, knowing what they are thinking/planning.  THEY seem to know, they just haven't told ME! 

Hi have you heard anything yet , I really hope you have xx

Hi, I'm really sorry youre going theough this too. It's just awful. Have you heard anything yet? 

I've had a dreadful time. My biopsy didn't go ahead and the hospital sent me elsewhere for a new urgent appt. I've since found out this was sent as a routine appt and I'm still waiting for the biopsy. They've given me a date of 17tj August which will make it almost 2 months since they told me I might have cancer. And that's not including the wait for the results. I cannot believe they are treating me this way. It's absolute torture. I call all the time and nobody ever rings me back. The care has been disgusting. If they were gonna ignore me for so long they should never have told me I might have cancer then just disappeared on me. :(

Oh that's awful for you, hopefully they arnt in a hurry because your early stage  , if its cancer at all, my husband had routine bloods at the doctors because he was tired his blood test were very alarming , we went to hospital on Monday and we was given the news on Friday,  cancer , big tumors in both kidneys lymph nodes and mets in both lungs, that was in end of October and he had his first treatment in December,  we recently found his immunotherapy hasn't worked so now he's on tablets, the stress is awful people ask me how we can manage to carry on as normal but we arnt we are worried sick all the time . If I was you I would go back to your doctor and tell them the waiting is making you ill  , I feel for you I really do , I hope you get some awnsers soon, if it turns out to be the dreaded cancer there is options for treatment for you xxx

Hi, oh Betty Boo, that's just awful.  I totally feel for you and completely understand where your head is at right now - all over the place.  You poor soul. I can totally empathise as they treated me the exact same way. 

So, I have had an update: the day of my second scan came, and 6 hours before it, they called me to cancel it. Apparently it was a duplicate and wasn't needed!! I said, I thought this was for comparison purposes from the scan in May. Apparently not. 

I got really really mad, and I called my GP, to see if they had any greater influence than the patient.  She was great. She was shocked at how I'd been treated, and said she's call me back after she went and "rattled some cages"!  Well, she did, and came back with a name; a contact.  So I called up this contact - a specialist urology nurse, and spilled it all out to her. She was also horrified to hear my story. She said, we just need to see you, come on Friday, so that was Friday past.  

The urology consultant was lovely.  Really nice. He apologised for the way I'd bee treated, from the Dr who told me it was "more likely than not" to be cancer, to his own department not getting in touch with me. I think it was damage limitation,  because by this point I was threatening going to my MSP and the papers! 

Apparently I have "small renal masses". Too small to biopsy yet. Its not possible to say if they are cancerous or not, but they will scan me in October, 6 months after my 1st scan and assess if any growth. 

To be honest, it feels like such a relief to hear this. The urology consultant seemed honest and open with me. I felt I could trust him. I know it still could be cancer, but the fact its so small and that he said if it was, they'd be looking to remove just the bad area, not the whole kidneys. I feel time is now on my side. 

So, I can go ahead with my gall bladder removal, which, during an ultrasound for that, found the kidney lumps. 

I did comment, what about people who can't advocate for themselves; how are they looked after? There was agreement and not much of an answer. 

I hope you get some answers soon, Betty. Don't stop hassling them. Phone every day if you have to. After all, it's YOUR health.