High Grade UTUC Diagnosis

Hi Rosie,

Apologies for the delay in responding, I have been in Sicily with the family for our first proper holiday since all of "this" started last September!

I am really sorry to hear about your diagnosis  Do you know if your cancer is confined to just your kidney or has it spread?

To directly answer your question, I haven't attended any Group meetings to date but am certainly keeping the option open. I have been so focused on the treatment and looking after myself physically, I am probably ignoring the mental side of it! 

I hope you have got a date through now to start your treatment - everything feels much more manageable once you start, the chemo nurses and all the staff at the hospitals are amazing and knowing that you are taking the fight to the cancer really helped me as well.

There are a couple of other fabulous people on this chat (and a more private Facebook chat) that have been super supportive and a real help as well.

I am very happy to help where I can, let me know any questions you have?

Nick xxx

Hi Snake65

Really sorry to hear about your diagnosis and challenges 

I totally agree with the sentiment that it is a long journey!! Do you mind me asking what immunotherapy drug they put you one and whether it worked at all? I am now 3 months into immunotherapy treatment with Avelumab and have my first scan since the treatment started in a couple of weeks to see if it is working!! On a positive, I have pretty much zero side effects from the drug but (particularly after chemo) that almost feels as if it must not be working!!

I wish you all the best.

Nick xx

Hi Rosie,

(I had typed a reply to you but I can't see it on the chat so apologies, and/or you may get two!! ).

Really sorry to hear about your diagnosis  Do you know if the cancer has spread at all or is it just in the kidney?

I hope you have got your treatment start dates through now. My experience is that everything starts to feel better once you start your treatment. You are surrounded by great people, the chemo nurses are amazing and have huge amounts of knowledge and experience, and you feel that you are actually fighting back and that it isn't all a lost cause. The upside of this feeling really helps to reduce the downsides of the treatment side effects.

To directly answer your question, I haven't been to any Group meetings yet, although I am certainly keeping the option open. I have been so focused on physically fighting the cancer that I have probably ignored the mental side. I have also been fortunate that there are some really helpful people on this site as well. We may have a rare cancer but it seems as though everyone who gets it is a fantastic human being 

I am happy to try and help in any way possible if you have any questions and/or just want to talk. I am over near Wendover but travel into Oxford for treatment as my Oncologist (Professor Protheroe) is based there.

I am sending you all my best wishes and manifesting positivity for you.

Nick xx

Hi Nick, 

Thank you for replying, it is amazing how much better a few words of kindness and support can help.

I have the same consultant as you, I have an appointment today but it is looking like the results from the biopsy are still not available so back to waiting and trying again next week. The waiting is just so awful now (original CT/suspected diagnosis was reported on 4th April!) 

I have had two primary breast cancers before, once in 2005 and again in 2021. Both were aggressive with one needing chemo (.not sure why they didn’t give it the second time) this is the reason it’s taking time I think as they need to rule out whether it is a recurrence of a breast cancer which happens to be in my kidney! 

Although chemo is awful, I just want to get it started now and get this thing under control.

It is great to hear that you managed to get away on holiday, gives hope that there is light at the end of the tunnel - that was definitely well deserved, I hope you enjoyed it? Was travel insurance ridiculously high? 

iIt really isn’t nice to hear you have this awful disease, but it is good to be able to share thoughts and concerns - and hopefully humour (I find it helps ) and to know I am not alone - although I might be if I get sent back to the breast department!!

It sounds like your chemo went really well? I am sure you said you were to have a scan following the immunotherapy too? If so I really hope that shows positive results. If not it’s due to the lack of memory as I am unable to read your message back whilst writing this one. 

Sending good wishes and positive thoughts 

Rosie

xx

ps do you have a link to the Facebook group? Might be a little less daunting than the group at the moment. 

Hi Snake65,

Am sorry to read you have also joined the UTUC club, we seem to be a small rare one, but it is so good to find others to talk to on here. We are all at different stages in our cancer journeys and if you click on names you can read our journey to date. 
You will see from my journey I had chemotherapy before surgery, I am fortunate atm to be cancer free after a stressful 3 years and I am having regular scans and cystoscopies to check for any reoccurrence.

i wish you well on your continuing journey and hope the chemo-immunotherapy brings you a positive outcome 

Annie x

Hi Rosie, 

So sorry you have joined our group, but also pleased you have reached out for support. By clicking on names you can read our stories to date, which hopefully will give you some comfort in seeing how our journeys have progressed.

Please feel free to ask any questions, or raise any concerns you may have, having been in your current position I can relate to how stressful it can become, I found once I was in the system and my journey began I found it easier to cope with as I felt I was starting to fight the b…ard!

take care 

Annie x

Hi Annie, 

Thank you so much  it seems we are part of a very small group, it is a real positive to see that you are all so lovely and caring despite this thing! 

I am really sorry anyone has to be a member , but I would love to be a part of any chat group if that’s ok, I’ve looked and can’t see how to actually add anyone on here a a friend or to send direct messages… it’s an age thing. Help or pointers in the right direction would be much appreciated. 

You are so right about the journey, it is extremely stressful and the one I have been on seems to have been so disjointed, I think the Oncology nurse was quite shocked when I explained how the process had played out for me. Having been through this twice before (breast cancer) it is amazing how much more efficiently it runs to get you diagnosed and treated. 

All the best

Rosie

xx

Hi Rosie, 

I will send you a friend request and we can talk offline, Nick, Claire and her dad are all part of our little group, I have also had great conversations with bubble aka Jenny who lives in Spain 

Annie x

Thank you Annie, it is much appreciated. I look forward to getting to know you all better

Rosie x

Just read your journey   

xx