My husband has been diagnosed with this. It has metastasised into his lungs, poss bones and lymph nodes.
To say we are devastated is an understatement. He is my world. We also has 2 11 year old sons.
This is the 5th time in his life that he has had Cancer (Prostate, Hodkins Lymphoma).
We have an appt with our local specialist cancer hospital this week and are hoping for a miracle quite frankly. We are holding onto the hope of a clinical trial or immunotherapy.
I cannot fin anyone else on here with this. I know it is a rare cancer but good god, is there anyone??
I feel like we have simply been sent home and left...………
It is almost surreal, yes it is clear my husband is ill but he is still managing to do things, albeit in small doses, but what are we to do?
Hoping & praying for a miracle.. Is there anyone else on here with a similar diagnosis?????????
Welcome to the community, tho it's a"club" none of us wants. to join.Are these all primary cancers your husband's had?!
Given your difficulty finding someone else with your husband's diagnosis, u might want to try the helpline on 0808 808 0000, 8am to 8pm or pose your question in the "Ask a nurse" section on the site.
Good luck with the appointment this week. Let us know how u get on.
Thank you for your reply.
Yes they are all primary cancers!
Hi How is your husband now ?.
I have TCC cancer . Started in the wall of my right kidney and has metastasized into my Lymph nodes . Stage four I believe .
I understand it is a rare reasonably rare cancer [ not to be confused with kidney cancer ]
I fully understand all your concerns and I am keen to know how your husband is now . Could I ask how old your husband is ? I am 74 and feel Thirty healthy in every other way.
I have had 4 lines of Chemo including Immunotherapy ...I am told it is watch and wait now . [ totally against my mindset ] other than the cancer I am as fit as a fiddle and still work.
I am interested to know if anybody on the forum has had TCC cancer on a kidney that has spread to the lymph nodes and A/ managed to survive or be had the kidney removed after it had spread to the Lymph nodes.
My brother had the same TCC cancer . His kidney was removed prior to it spreading to the lymph nodes and he is totally well now. My father died with cancer thirty years or so ago ..I believe it was TCC cancer. I have 3 adult offspring and 11 grandchildren so the fact it may be hereditary is of concern to me.
If somebody on the forum has had this TCC cancer know of a successful outcome I would like to here about it with a view to setting up a fund to research this rare form of cancer to help future generations [ I think maybe too late for me but I am not giving up hope]
I believe most cancer research money will go to those cancers that the most people will get the benefit from not the rare forms .
I hope you are not hurt by my questions .
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