Kidney bombshell

Hi , welcome to the group tho I'm sorry to see you here, especially with cancer on both kidneys.

We're here for you, so ask away/ vent your feelings.

You might want to join the Life after cancer group too n maybe talk to the helpline on 0808 808 0000, 8am to 8pm?

Don't give up n give in.You have a young family.

Sending you love n hugs,

Sue

Hi ,

I'm sorry that you find yourself in this difficult situation but welcome to the group.

I must say that reading your description I was a bit confused by the timings.  As I read your post the cancer was identified in early 2018 but was not operated on until January 2019 at which time they advised you that you had the same issue with your other kidney.  Having had the operation you have now dealt with most of the immediate aftereffects but do not see your oncologist until December 2020 to find out what happens next.

Was there some dispute about whether they were going to operate on your left kidney initially as usually they will operate within a matter of weeks once kidney cancer is confirmed.

I can understand that having had one operation they might not want to operate so soon after your previous operation but it does seem unfair to leave you not knowing what might happen for over six months.  I am presuming that your consultanct is not an oncologist as they will normally only get involved after the surgery.  However, in your circumstances I would consider contacting them and asking if you can be referred to oncology as it might be possible to look at other treatment in the interim.  I know that kidney cancer is generally slow growing but it is still a long time to be left in limbo.

Have they told you which type of kidney cancer it is?  This determines what treatments might be considered.  If you do know it might be useful putting the information in your profile as it help others find out a bit about you when you post a question and you don't have to keep repeating yourself.  If you click on my username or anyone else's when it is highlighted then you can see what others have written about themselves.

It is difficult when dealing with other people as I must confess my knowledge of kidney cancer was zero before I was diagnosed myself.  I have had a number of relatives who have suffered from different cancers and indeed a number who have died including my father and still looking back I was ignorant of the disease.  I was also ignorant of the deep emotional impact and to be honest often found it easier to pretend it wasn't there unless the other person mentioned it.  I thought that I was being considerate.  If someone tells me about it now I ask them about it and often see a sense of relief cross their face as they realise that they are finally able to discuss it with someone.  I find being on this site generates much the same response when people realise that they will not be ignored.

I'm afraid that the answer with your family and friends is not an easy one in that it is likely that the responsibility for educating them, both about the disease and what sort of response and support you would want from them, is down to you.  I have had to do this at every stage with my family and friends, before the operation, after the operation and unfortunately in my case when it returned and spread.  I found that being as specific as I could helped. I did not want to be informed of miracle cures or given motivational stories of others who had overcome (often different types of cancer) against the odds.  I did want to be given the opportunity to digest and understand wat the doctors were telling me so I would call my family and update them once I had interpreted what the doctors had said into my own understanding.  That I might actually take them up on offers of help, mainly physical but sometimes just an emotional shoulder or a friendly ear.  However, I was more than just cancer and wanted them to talk about the day to day stuff as well and it was OK to talk about cancer for a little while and then for the conversation to move on.  I also told them that I wasn't sure that my views might change as I moved through my treatment and I might ask them to alter their approach.

It was an approach that has largely worked for me although nothing stops the down days, the need to rant, the sleepless nights and the anxiety.  I did not have to deal with two cancers but have had to deal with my cancer metastasising and now being incurable.  I found that I needed things to look forward to as this helped me have a positive objective of something that I knew I would enjoy.  Prior to the lock down this was things like day trips, week ends away, holidays, theatre trips, dinners out and meeting friends who I had not seen for a while.  Obviously this is more difficult now but you can still plan treats at home.  A nice dinner, a movie night, a barbecue and as the lock down relaxes a day out.

I hope that this gives you a few ideas and you are able to see yourself moving forward.  If you wanted to discuss any ideas further feel free to come back again and whilst this is not the busiest group I am sure that others will be along with their own input soon.

Wishing you all the best,

Gragon 

Hi, with the dates originally I was under care at monklands hospital airdrie they eventually contacted Glasgow Queen Elizabeth hospital to see if they could do robotic surgery which they could.

I do think your correct that they don't want to operate so soon after original and I will be contacting them tomorrow to discuss options until I see my consultant again. 

All I keep thinking is I'm in safe hands it seems a lifetime for me but they must know what they're doing.

Thank you

Hi folks, I had a radical nephrectomy on my left kidney in 2015. I thought that was me cured. Unfortunately I now have something on my pancreas, probably metastasised from my kidney. I’m due for a biopsy on Friday, then wait for results to determine what treatment, if any I will receive. I’ve never had any symptoms with the original problem or this new one. Petrified of what will happen. I’ve been told probably tki treatment. Everyone dies of something, so hopefully this treatment will keep me going for a while. I’m trying to be positive and see lots of positive stories, just difficult being cheery. I’ve got good support from family, and don’t want to make them feel bad, but it is so hard.

Sorry to hear your news. I was only 38 when I found out I had kidney cancer, 3 days after having my second child, and had to have an operation. I then went on immunotherapy, and was clear for 10 years. I have since had 2 surgeries for nodules on my lung, and now have a mass on my remaining adrenal gland. I am on targeted chemo, but I am still here and soon to celebrate my second child's 18th birthday next week - what a blessing! 

I have a few odd days when I think, "Why me?", but I am still here.

Stay strong and positive. When I get my off days, I recite to myself a poem my grandma wrote -

Look always on the bright side

It will make us happier by far

Why should we try to find the cloud

When brightly shines the star

That’s great news celebrating your child’s 18th birthday. Can you tell me what targeted chemo you are taking. There are several which seem to be offered but don’t know if it depends where cancer has metastasised that determines what you get. What were your experiences with any side effects, which is what I am worried about

Good luckIan436for your biopsy tomorrow

Thanks Sue, hopefully be in the land of nod with sedation when it happens.

I'm on Tivozanib. I've done quite well regarding side effects. Reasonably bad headaches for a sort time, but that was soon resolved as I'm also on blood pressure tablets. My doctor altered them slightly and I've been fine since. I've had a few tummy upsets, but having the tablets the team provided just in case, has helped. I had a scan again only last Friday. The oncologist is speaking  to me via phone this time, with this virus thing, on my sons birthday next week, so I will be glad when she has called.

Thanks for your reply. I hope you get great news so you can celebrate your sons birthday properly. Stay safe, stay well.

Ian