Hello fellow forum members from a male with a new diagnosis

Hi makem, all this assume business imho should be called out. Just as when you take investment advice, you are asked your 'attitude to risk' I feel one should be given info that is not biased by the profession of the speaker [eg surgeon, who has chosen to do surgery for their career]. My OH's cancer was not muscle invasive but he was still offered RC as an 'equal' choice after a 2nd TURBT because there was a single recurrence after just 6 BCG. He has had 5 clear years on nothing more further than a course of Mitomycin, so is incredibly glad he resisted an op he really didn't want. We managed never to even miss a day we were supposed to mind our grandson, for which we had just moved house. Wouldn't have been as easy if he'd had the RC. I accept the choice is there for those who want it, by the way, before I get challenged about that....

best wishes, keep us posted,

Denby

Yes, I think many of the professionals tend to have things go their way for many reasons. They often U turn when questioned with apparent knowledge. Maybe they think we would not know much about the subjects.

Did your husband tell the surgeon about the 70% mentioned by the radiation consultant?

70% is quite high and if you are in that group it would make a major difference to both your lives.

I gather if the BCG and radiotherapy fail then surgery is still possible although it may be more complicated due to the radiotherapy.  But I would go for two bites of the cherry!

I thought these MDT talked to each other but maybe some things are missed as we are only human.

Do they do a full body yearly scan or just the lower body?

Give your husband my best wishes for his scan result.

I totally agree.

All the best Denby

Thanks for your good wishes. I believe the CT scan was just for kidneys and bladder. The surgeon stated very firmly that if the cancer returned it would be an automatic cystectomy. It sounds strange but we were delighted for him to be offered BCG to deal with the reoccurrence of CIS.

My husband already had a hearing loss and tinnitus which has worsened since the chemo, but a price he's happy to pay. He is due an MRI scan for his heart next week having had an aortic valve replacement 10 years ago. 

Health is complicated and we've learnt to live with all the uncertainty and carry on with our lives as best we can. Hope that helps. Mo

Hi makem,The next stage would be a meeting with the surgeon/consultant to discuss the results and treatment plan.Scans are usually chest to pelvis.If you have bladder removal they will be every few months following the surgery.

Hi makem, sorry to hear about your diagnosis. 

Moving home is always stressful so this certainly doesn't help.

Welcome to Essex ( if you've moved from somewhere else).

Best wishes for the future.

Trevor 

Hi

You will probably be given an appointment with a consultant who should explain your results and discuss treatment.

I definitely agree that patients should be given all the info (pros & cons, risks & benefits) and all options available. My concern is for the ones with G3 non muscle invasive, who are simply told they are having BCG & not offered surgery as an option. This is equally remiss as to assume surgery when eg radio-chemo might be an option. 

I guess it depends on many factors - the experience & expertise of the consultant, local protocol (despite NICE guidelines). Maybe not all hosp can offer the same treatments. Best wishes.

Hi Makem,  all of these replies are coming from a good place . Mostly from folks who have made decisions about their therapy and are satisfied with them. I will toss in mine for what it’s worth. I’m a bit of a gambler by nature so when I was confronted with my diagnosis I took the time to closely examine the cards that were face up on the table , calculated the risks and how much I was willing to wager. I love my life and I needed to make a decision that would give me the longest life possible. The stats are all out there to help you get a clear picture and for me , at T1 , an RC was not the only option but for me with all things considered it was the best. For me , the right decision was the one that through my own research proved to me to be the one that would give the best shot at a long life . Period. I truly hope that you find and are confident with yours. Orillia.

Hi Orilla and thank for your input.

I have not had my stages given yet but am told I have muscle-invasive cancer which I think will be T2.

I put my cards on the table and came to the conclusion there were 4 options and would ask those wiser than me which:

1. BCG + radiotherapy,

2. Partial resection + BCG+ radiotherapy,

3. RC + neo-bladder + BCG + radiotherapy,

4. RC + stoma + BCG + radiotherapy,

because I have no idea at the moment.

Did you have any treatment after the RC? Are there regular checks?