Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

1st time post

alfiesnana
Posted by

Hi All

1st time post after being diagnosed last week. 

I don't really know what's happening yet other than that I have a 3.5cm growth in my right kidney and that the kidney will have to be removed.

I'm having a CT scan today to find out if the cancer has spread anywhere else and don't mind admitting that I am terrified!

My head feels as though it's full of sludge and I can't put 2 coherent thoughts together. I just need answers but don't really know what the questions are..................or maybe I'm just too scared to ask

I've got some wonderful support in my family and close friends and I know that I can talk to them about anything but they can't fully understand what's going on inside my head - the confusion, the anxiety, the frustration and the fear.

I'm hoping that this community can help me with this..................and that at some time in the future I'll be able to help others too.

Is it normal to feel guilty? I am so desperately sorry for being responsible for putting my loved ones through this. I can see the pain in them and knowing that I'm the cause of this is tearing me up!

buttercup01
Posted by

Hi alfiesnana n welcome to the group. Glad u found your way to us from New to the community.

I think it's probably normal to feel guilty, especially when u have a family. Women can feel guilty over something n nothing after all. I'm glad you've got lots of support from family n friends. We here on this group will support u too if u want us to.

When u go for your scan results, try n take someone with you to write down what's said and any answers to questions u might have thought of by then, eg has it spread? ,where is it? , what's the treatment plan ?

It may be the medics don't know properly  re  spread until after they've removed your kidney. Incidentally, my tumour was about 9cm n was removed along with my right kidney 14 years ago n I'm still here to tell the tale. There are others here in a v similar situation. You'll get regular scans for a few years post-op then the regularity will decrease as time goes on. Probably every 3 to 6 months to start off with..

Well, that's enough from me. I'll let someone else have a say....

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Joncol
Posted by

Hi alfiesnana

reading your post I was in exactly your position this time last year. A ct scan for something else revealed a five cm tumour on my right kidney. 

I went into complete melt down! I am not an anxious person and normally very calm and logical. For a month I could hardly function from fear and anxiety! Cancer was in my head all the time. I couldn’t sleep or eat. Telling my three grown up sons was dreadful. Seeing the fear in their eyes. Once I had a treatment plan I felt back in control and worked on being as fit as I could for the operation. I’m 65 and although the operation wasn’t easy it’s doable. I found the support on here amazing and a year later, one kidney down I am very well. Luckily I don’t need any treatment and have six monthly scans for five years.

its easy to say don’t worry because we all do. But it  will all settle down once you have the results of the ct scan, good or bad and you know exactly what you’re dealing with

Jane
alfiesnana
Posted by

Thank you so much for this. You've just described exactly how I feel!

I really need something to focus on..................a treatment plan so that I know what I'm dealing with.

Like you, I'm usually calm and can handle most things that life throws at me, but this has knocked for six.

My family have been wonderful and so supportive without being over-protective, but I worry about my mum. She's in her 80's and already has one daughter suffering from breast cancer and now I'm adding to her stress levels. She literally is the strongest woman I know. Hopefully I can draw on some of that strength....................everyone says I'm very much like her.

Thanks again for getting in touch

Jan

Joncol
Posted by

I didn’t tell my mum until after the operation. She’s 93. She thanked me for being so thoughtful and not worrying her and then complained that the lift in her care home wasn’t working! It was hard to lie to her but it all worked out in the end

Jane
Ethelmay
Posted by

Hi Alfiesnana, welcome to the group. Sorry you should find yourself here but you couldn't have joined a more helpful, friendly, caring group than here.

No one was as terrified as I was when I joined this group a few months ago. I can truly identify with how you're feeling at the moment and joining here I realised I was not alone. I am 64, married, have 2 sons and 2 grandchildren. I had an 11cm x something 'suspicious' cyst on my left kidney, found by ultrasound. After a couple of ct scans ( fortunately nothing had spread) and consultations it was decided I had to have the cyst and kidney removed and at the time, the spleen had to go too. I spent weeks and weeks in a daze, couldnt think straight, shakey, couldnt sleep, scared, couldn't seem to get a grip at all. Food was a no-no..couldn't cook let alone eat anything and like you, felt so guilty at putting my family through it all. I joined this group, had loads of advice and friendly chats and found it an invaluable place to come for company, sort of away from it all but in a place on my own with people who understand. I especially like the ' My 3 Good Things ' thread started by Buttercup and focussed on that every day . Its amazing how that helped and still does, you might want to have a look. X

Together with a little team of family members (who used to 'assemble' to come with me on hospital appointments ( it was jokingly called Avengers Assemble after the film) and good wishes from members of this group, Ive managed to get through it all. I had my op last Wednesday , Thursday I was up out of bed and walking about and by Friday teatime I had my discharge papers and was on my way home!  All went well with the op and I kept my spleen. Apart from being a bit sore and uncomy, and having to wear very fetching knee length compression socks for a month ( so feet up and resting as and when )  I feel well. The painkillers are doing their job. My appetite's not back up to speed yet but I actually cooked a proper dinner tonight.

I'm now waiting for my clips out at weekend and for my follow-up appointment to see whats what from there. Do try not to worry, I know that really is easier said than done but always pop in here when you need a chat, a moan or a rant...I've found it invaluable xxx

Love and hugs

Ethelmay x
alfiesnana
Posted by

Hi Ethelmay

I'm so pleased to hear that all is looking up for you. I've found all the replies and support from people on here very helpful and uplifting.

I had a second ct scan yesterday from chest to hips and am now waiting to hear the results of that.

Hopefully it won't be too long before I have a treatment plan in place and can start to move forward. At the minute I feel as though I am stuck in quicksand 

I don't have much of an appetite either but try to eat every evening, mainly to stop my husband from worrying too much. 

I spend most of my time trying to keep busy, but find that I can't concentrate on anything and lose track of what I'm doing. I almost forgot to collect my 4yr old grandson from nursery today! 

I'm sure I'll feel more in control once I know what is going on. Waiting to find out is horrendous..............but then patience isn't one of my virtues 

buttercup01
Posted by

Hello again alfiesnana,

U might find it useful to look at the thread Ethelmay started called Anxiety buster". There are a number of suggestions on there re distracting yourself 

Do let us know,when you have a treatment plan in place.

As you say, you'll feel more in control then  x 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Hi alfiesnanna

Sorry you have found yourself here, but hopefully you'll find it really supportive. The first thing I though when I read your post was "Good, only 3.5cm"

I think this wait is the worst and you'll definitely feel better once you have these results then get your plan in place. You'll be able to prepare and hopefully get a date that you can concentrate on.

I think we all go off food initially - it's a shock reaction. I know exactly what you mean about eating to keep your husband from worrying! Whatever you can manage is fine. You'll eat when you're ready again. Just keep your fluids up.

My mum is 79. When I was first diagnosed she had undiagnosed dementia. She came round for lunch and we sat in the garden. I explained everything to her, thinking it was being remarkably well received. When she left she turned round and said "Well, I've had a LOVELY afternoon!!" It wasn't too long after that I had her referred to the memory clinic lol.

I have a good feeling for you. Fingers crossed it's right!

Jo
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