A new 'incurable' diagnosis - second opinion?

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We are struggling to cope with the new diagnosis of my wife with 'incurable' Transitional Cell Carcinoma in the renal pelvis which has metastasised to the lymph nodes.

Having led reasonably healthy lives (we both trained as PE teachers) she has survived a few major health crises without problems so the 'incurable' bit is difficult to come to terms with. This is with retiring to the South Coast into a road full of people with health issues and being the healthy ones on the block!

Currently awaiting 'Palliative Chemo' and undergoing lots of tests.

We have been referred on to Oncology and told surgery is not a good option but had few technical details. We would like to be sure that surgery is not a better option so want to seek a second opinion. Neither GP nor hospital want to recommend anyone, saying we just need to refer ourselves. Who to? How do we choose which institution to approach?

Any hints would be most welcome

  • Surgery is not indicated for TCC once it has metastasised. My oncologist said it's like shutting the stable door after the horse has bolted.

    If you're looking for a private oncologist, I think that the best bet is to look at the web site of the nearest cancer centre and go through the doctors profiles to find one that you think is qualified.

    Good luck,

    Stuart x 

  • I don't know if this is any help but my Urologist is Jim Voss at Southampton General Hospital.   

    Please tell your Wife I was always the kid picked last for netball!  Physical exercise is so important and I did a lot but not that sort.  

    You must both be really hurting right now and of course you want to explore all options.  I wish you both all the best.  

    I am on the Isle of Wight. Are you very far? 

    xx

  • Thanks for your response. I got a reply from a message left at the Southampton Cancer Research Centre today and they will connect me with someone in Southampton - possibly your Mr Voss!

    Neither of us were into lots of extreme sports. Sailing, Gymnastics, Trampolining, and climbing at college but all at an enjoyable level; neither of us were into team sports. None of them survived the pressures of working and family. Now I merely Ramble, verbally as well as physically, and run an allotment.

    But you're right; activity is important even at our age.

    I've read another reply elsewhere from you but cannot get to it at the moment. Lost in the labyrinth of the different forum pages!

    We are in Christchurch. Our beach hut looks across at the Isle of Wight and the Needles - probably the wrong end for you. My wife is currently under Bournemouth (Now called University Hospital Dorset!) for Chemo but we could possibly bump into each other if a transfer to Southampton proves better.

    We're speaking to the surgeon who turned us down for treatment by telephone tomorrow - that may produce some answers!

    Thanks for your support. Hope things progress as well as possible for you!

    Steve

  • Hi Steve, just sending good wishes. I am at Soithampton again on Monday.

  • Hi,

    Good luck on Monday.

    We managed to get a telephone consultation with the surgeon who felt surgery is not suitable. We got a very good explanation and a referral to a Mr Douglas, who I think is one of Mr Voss' colleagues, as he does similar surgery related to Testicular cancer.

    They meet today so we hope to hear from them next week.

    Once again - good luck for Monday.

    Steve

  • You could also try Paul Nathan at Mount Vernon in Rickmansworth ,N  London just S of M25 but it may b too far for you? 

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Hello Steve, 

    I want to ask how you are doing but I would be stupid to think it is easy!  Thinking of you both.  Am always here , and always thinking of you.   

    So of we go, another day of ' pretending to be normal'!     Some idiot told my Husband the other day that my 'problem' is 'ketones'!!!      I really think the nonsense opunions of some people make this a lot harder.  

    I hope you will get to your beach hut. I have lupus so sunlight makes me much worse.   

    xxx F.U.P. ( actually you know me now, my name is Dawn) 

  • Dawn, (Now what made me think you were male? Maybe it's because almost all the 'Fed up people' I know are men - however normally they don't have a good reason to be fed up!)

    Sorry I'm so slow responding - couldn't access this page - wrong password because my Password Manager app has just migrated to my mobile taking all my passwords with it and I'm having difficulty accessing it. Just had to reset my password completely!

    It's been a busy few days with visits with friends and family. It is great to have visitors but she has tears when they leave and she remembers why they have come. It was hard when there was a visit from the husband of her sister, who died a few years ago of lung cancer after 3 years of chemo. Fortunately he is so supportive and we were reminded that she was given weeks to live but used the 3 years to the full.

    At least the steroids seem to have given her a boost of energy and she's something like her previous self much of the time. We had fun when she inadvertently doubled the dose for a couple of days and she went hyper. Thank goodness none of our children had ADHD - we, and certainly I, would never have coped!

    Working out in the garden and on my allotment has been my saviour through lockdown and, with some adjustment, I hope will continue to be a help. Sorry to hear you are not able to get the best out of this weather. Keep your pecker up and ignore the idiots spouting rubbish. There are too many 'armchair warriors' who think they know all the answers!

    Steve

  • Hello Steve, I am ashamed not to have reied. I have since met Mr. Douglas and discovered he was asked to assist at my operation. He is a good chap.   I don't know how things have gone for ypur Wife, so I hope you don't mind me writing this.   

    Dawn x

  • Dawn,

    Good to hear from you!

    For us it is good news but a long story!

    Cynthia got very upset at the 'death sentence' (as she saw it) of palliative chemo to slow the cancer and kept on about exploring surgery despite going through the chemo with little in the way of side effects and the cancer being reduced considerably.

    The kidney nurse realised she had lost confidence in the oncology and asked the surgeon at Bournemouth to explain why surgery was not being suggested. He did an excellent job explaining why he couldn't do it but said he knew of surgeons at Southampton who were 'doing this sort of thing' and asked did we want a referral. She, of course, said yes.

    So we met Mr Douglas and Cynthia was scheduled for the 'experimental' operation.

    The first attempt failed as there was no 'high dependency bed' for after the op and I had to go back and collect her. She has been all prepped and psyched up for the op but was given a date for 3 weeks later.

    However, the following Monday we had a call asking if we would take a cancellation and said yes.

    Apparently, while Mr Douglas was away, Mr Hayes, his mentor, had a cancellation and Cynthia was the only person ready, prepped to go.

    It was a long op and there were some problems. They nearly lost her twice and she lost her spleen in the process so is on antibiotics for life - but it is LIFE - as the cancer appears to be gone - for now at least.

    She was in hospital for a long time (13 days) but Mr Hayes visited her every day and was very happy and ready to send her home sooner but haematology weren't happy with her blood so kept her in longer.

    She is recovering slowly and still tires very quickly but we celebrate her birthday at the end of the month - something we could only dream of before.

    Unfortunately, however, an old knee injury has reappeared and is limiting her.

    We bought a Motorhome to try to get away but found it too limiting when on site so lost some money reselling it - but we still had the caravan and have had a weekend away in that with great success.

    We meet Mr Hayes in January for the next checkup and if there is no sign of cancer he plans longer intervals between checks.

    A truly miracle outcome for us!

    I do hope you are progressing well and this story shows miracles are still possible.

    Thinking of you.

    Steve

    PS Cynthia has just told me Mr Douglas came back and assisted at the op and visited her afterwards a couple of times. He was supposed to be at a conference then on holiday!

    You are in good hands!

    PPS I said it was a long story!”