Hi - Asking for tips on coping with taste changes post op & if anyone knows about cancer recurrence scale?

Hi Phoenix, I just tagged you in a recent discussion where a few of us were sharing food woes.  Changing taste and texture experiences is def temporary after a nephrectomy.   There's nothing you can do though, apart from just eat what you can tolerate.  You just have to ride it out.   

I've never heard of a scale for the likelihood of cancer returning.  But catching it early and a nephrectomy are the best chances of keeping it at bay, I understand.  But once you've had the diagnosis it's a game changer, I think.  My oncologist says he doesn't like to use "cure" when referring to "no evidence of disease" outcomes on scans and I would tend to agree.  

Hi Mmum, 

Thank you for your kind reply & for tagging me in the discussion about food woes - it definitely helps to feel less alone with this. 

Really glad to hear that taste/texture changes are temporary - it’s been just under a month since my op, so I was starting to worry in case it might just be how things taste forever now. Having hope that it will pass is a big morale boost, thank you.

That makes good sense & yes - the diagnosis really does feel like a game changer, Somehow it still feels like a lot to get my head around, even though they found the tumour in March, I suppose having confirmation of TMN & cancer type today was a lot to process, even though it was info I needed & had been waiting for. 

Phoenix 

On food, although my trigger was a low kidney function, I experienced what you describe specifically with cheese.  The texture - YUK!  The taste weird and I ate zero cheese for a few weeks.  I just couldn't abide the stuff in my mouth.  Repulsive was the only word to describe it.  As the treatment of my low kidney function has progressed, my appetite has returned.  I'm back eating cheese now.  Buscuits and dry foods are sometimes a bit off still.   For me, all-in-all I'd say it lasted about 4-6  weeks.    

I think there's an article on the Macmillan site somewhere explaining that cancer and/or treatment can impact food and taste.  

That’s really helpful to know, thank you zo much for sharing. If I’m on a similar timeframe myself, then it might only be another approx 3 weeks until hopefully my taste/textures & appetite might start to improve. 

The article you mention sounds really relevant, so I’ll try to find it later on (I’ve been up with insomnia most of the night & gonna try and nap soon). 

Hey sparksy, 

  I had a radical nephrectomy 5 weeks ago. My taste was shot completely for 4 of them weeks. Nothing at all tasted how it used to. It was horrendous. Quite weirdly debilitating. I began to dread eating as it confirmed everytime that everything i ate tasted awful. Mushrooms were the big one for me. Always liked mushrooms until this op. I went off them big time. Slimy horrible nasty tasting things. All the sauces i tried to disguise this new taste of food tasted awful too and so just made things worse.

I am pleased to report that as of 1 week ago all my taste came back. Soup, cornflakes, potatoes, fresh vegetables, chips, crisps, hobnobs, bread, salad...etc, all now taste great again (i'm vegan). The only thing that isn't right yet is the mushrooms. 

So at least on that score there is good cause to look forward to a return of your good taste the way it used to be. Apparently it is a phenomenon caused by anaesthetic. I have never experienced it before but i suppose nephrectomys are a long op and they pump a lot of gas into you. I could taste the hospital in every meal for 3 weeks. My dog smelt of the hospital for 3 weeks too even though she never went near the place. It was a crazy time for me.

Heres to hoping your taste too returns soon.

Good luck....Del.

Also in case this helps anyone, I found out that the name of the risk score I was asking about above is called the Leibovich score & there’s more info about it on Kidney Cancer UK. 

Hey Del, 

Thank you so much for sharing - that is really good to know & definitely gives me more hope about tastes returning with more time. 
And thank you for the good luck wishes :)

I’ve had a little bit of luck yesterday with lemon juice and some stronger spices on food than I normally eat - and although the “volume” of the taste is still kinda muted, I was happily able to enjoy just a little bit of familiarity of correct flavours, which even just emotionally was a big relief.

I just heard from the support line about a website called Life Kitchen (an organisation to help people dealing with taste changes from cancer or post-covid), so I’m gonna be looking into that when I can as apparently they might have some helpful tips for dealing with taste changes. 
Life Kitchen taste changes is the thing to type into a search engine, just in case this might help anyone else. 

Phoenix aka Sparksy :)