First: thank you all for the kind support I have received since - Much appreciated.
To the Nuclear Scan ordered by my GP for suspect spread from bladder cancer to the bones.
I got a call from my GP surgery today telling me Dr wanted to let me know, NO bone cancer found.
Thant's one worry gone.
So to the nodule on my lung, it started at 6mm and does not seem to be growing,,
My Bladder Cancer. I had said I don't want a Cystectomy and I still don't, it's a 6 hour operation with lots of pitfalls such as bleeding, infection and having to pass water through a tube coming out of my side - In short I will not consider this unless my cancer is spreading and there is no other option.
I asked could I have Radio Therapy and maybe chemo instead - They said it would not work as the rays won't penetrate my bladder as I has CIS (Cancer in Situ) although in situ it is aggressive.
But my cancer nurse told me it had spread to the inner lining - Meaning it had moved but not reached the muscle.
This may help me to have RT as it is now not just in situ.
The Operation I don't want is Radical Cystectomy - The alternative is "treatment plans involving chemotherapy and radiation therapy after TURBT- A TURBT is a cystoscopy but they take away anything that is there. That is containment not a cure but I would be happy with that. I have had a
TURBT and it's different a cystoscopy as you stay in 24 or 48 hours.
The next steps are important - very soon I will be in hospital to see if the BCG has worked, doubtful but the unexpected may have happened. This is done via a cystoscopy and they will take 4 biopsies as well as checking what is what .
If they find anything they will probably take it out, like they did in September 2021 - Then a treatment plan after biopsies will happen.
Sorry for long post but it was complicated and I hope I have made it clear.
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Ern007
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Thank you Carole - I expect after my cystectomy whether it's turned into a TURBT or not, light I think will be thrown. It has not spread to my bones, my GP again. I know thank's to my GP. So I was told to get in touch if no date set for my cystectomy after 4 week from my last one, so that will be due.
Hugs for you Carole, you must be so tired with your treatment which I hope will be a 100% success xx
So pleased your bones have been spared, good news indeed. Wishing you better days ahead Ern.
I’m a bit tired but that’s mainly due to getting up early and the awful journey. Daughter taking me tomorrow and eldest son helping out on Friday. Thank you for your good wishes and hugs xxxx😘
You've explained very clearly. Do take above advice on maximising sleep and rest.
No wish to contradict anything you've been told, and this may simply show my ignorance, but I have a melanoma in situ and have been told all is fine, so doesn't "in situ" mean that it's in one place and v unlikely to spread further? Only mentioning in case helpful, and apologies if I'm wrong in your case.
Sending warmest wishes and hoping all goes as well as possible for you. xxx🌺
Hi BronchyBronwen - When I go to bed my first thought is not sleep, it's being able to reax as my conditions are complex.
To you fair point Bladder Cancer in SITU sounds fantastic, I was told at beginning it was NOT muscle invasive - But my cancer is CIS and G2 and is aggressive and is likely to spread, this far I believe it has just spread to the lining of the bladder. I really want them to control my cancer not to try and cure it, and it is not bound to work and has dangers,
I have had this a while and it's just spread one step. I am reasonably optimistic they can treat me to keep my cancer under control. that will mean more visits but I believe a lot safer.. No worries a good post. xx
A very good explanation to enlighten us all on what’s going on with you at the moment, hoping for an outcome works well for you, fingers crossed 🤞🏻 for you, take care xx 😊💐👍🏻
Ern that was a very clear explanation. Such a lot to deal with and on top of that to try to take in all the information must be so hard. Everything crossed for you again 🤞🤞xxx
Thank you Mooka - The call yesterday was a nice surprise/
I had to somehow understand what had happened. what could happen. what treatment maybe the best, but maybe had by far the greatest danger, against treating as I go along. this would be more inconvenient if it can be done, but much safer,
Great news there is no cancer in the bone - that must be a big weight off your mind. Hope you keep on having such good control over treatment plan - i imagine it helps enormously. My husband is about to have cancer treatment here in Andalucía and its a struggle for doctors to accept that patients have opinions and a degree of understanding of what’s best . So here is a cheer for the NHS !!!
Ern007 so happy you have news you wanted re bone cancer. I must say your very good at explaining your journey and indeed very strong sharing with us. I hope you keep fighting as we route for you on here
Thank you Musicalways - I really set out to be informed as I was not happy with the status quo - I really want options. For sure I will keep fighting, while I can walk and have breath in me, I will fight to a) Cure This or b) To have it controlled - I am happy with either. I will know what is what after my Cystoscopy and the biopsy x4 results from them.
Sorry for the late reply, I missed this earlier. I’m so pleased to hear the cancer hasn’t spread to your bones. That is what happened in my husband’s case but he initially had prostate cancer, rather than the bladder form.
I do hope they are able to come up with a treatment plan for you that doesn’t involve bladder removal. I can quite see why you would prefer other treatment options.
Wishing you well for the next stage on your journey xx
Thank you - I am so sorry to hear about your husband. It's not good for patients or family.
Prostate cancer I remember as a youngster, my uncle died of that in my room - My father died of it but he was late reporting symptoms. He's had spread to bones.
I think these days a lot can be done these days I think removal and X Ray treatments are now available. I have an enlarged prostate but not malignant I get checked with a PSA Test twice a year by my GP.
Yes Bladder removal is a lot more than just that they take the prostate and the lymph nodes -
About a 7 hour operation with lots than can go wrong bleeding infection and even stroke ,
I am going to ask not for a cure - I know what that is, but simply keeping it in check with TURBT - Chemo and RT - For me bladder removal will be a last chance saloon.
Thank you Ern. Unfortunately my husband fell victim to a rogue consultant who was eventually struck off - a long story. By the time he was properly diagnosed the cancer had already spread to his spine. It was a horrific end that I wouldn’t wish on my worst enemy. Anyway, it will be 8 years this Christmas since he died and time does help somewhat. As you say, treatments are improving all the time and surveillance much improved too. I’m glad your GP is on the ball in that regard.
The potential bladder operation is indeed major surgery and I quite understand why this would only be an option of last resort for you. Interestingly, I was listening to a talk on the radio the other day where a cancer research specialist was saying some treatments they are bringing forward will allow folk to live with cancer, like any other chronic condition. I didn’t catch all of the talk as I had to go out but what I heard did make sense. So maybe, hopefully, that could be an option for you.
It is horrific my father tried to fight by walking - He went into hospital to have his testiculs removed. That did not help at all and he went down quickly. We had district nurses coming to his home twice a day - I was sleeping on the couch he could not be left alone.
This is possibly one alternative to Radical Cysectomy.
"Since our patient population has a median age of 71 [years old], many patients may not be fit for cystectomy. If they have tumors that are smaller, there is no hydronephrosis, and no widespread carcinoma in-situ, tri-modality therapy with maximal TURBT, concurrent chemotherapy, and radiation is another valid option."
I’m very sorry to hear what you and your father went through, Ern. He was lucky in one aspect though, in that he had such a caring son. My mum would love one of those but alas, my brother just doesn’t want to know. At least she has me, Heaven help her😀
The excerpt from the Cancer Network sounds promising, doesn’t it. Keeping everything crossed for you that this is the appropriate approach they’ll take in your case, too.
Look after yourself and I hope you both have a lovely weekend x
It never crossed my mind not to help,. My wife helped me to help also.. Now she gives me lots of help in both it's seems surreal as things happened so fast.
Yes I have done a lot of research into alternatives to Bladder removal and the rest that goes with it.
There seemed to be to schools of though which was depressing,but digging deeper there seems a chance an alternative will be found. It's all now Sara Sara as the song goes.
It’s good to research these conditions, I think. It leads to more active discussions with the medics treating us rather than just blindly accepting what they say.
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