A Better Update.

[Ern007]

Hi all. This update in a way is more upbeat than others.

I went into hospital yesterday and had a Cysoscopy. This is an investigation into me bladder , as I have cancer there,,

This was my 5th I think and best - I went in 7-30 am and got my op about 11-30. Considering I have CIS which is aggressive. it went well .

I was rally having this for 4 biopsies - but they found a red lump which did not look good, so they zapped it.

At the moment my bladder is clear.

In three weeks I will have a follow up to see consultant - I know I will be asked to take away my bladder, prostrate and lymph nodes.

I am going to refuse and ask for alternative treatment - Bladder Cancer removal is dangerous and I am 77 and not in good health.

There are alternatives, a mix of chemo and radiation - also cysoscopy which I had yesterday.

The MDT seem to want to package me up in a radical cystectomy - Well until it is the final option, they can want all they wish..

[Oshgosh]

xx

[CDPO16]

A difficult situation for you Ern but you seem to have taken everything into consideration and decided what you can cope with. Wishing you well. Carole xx

[Ern007 in reply to CDPO16]

Thank you, I am ruling nothing out but the nuclear option is for when everything else has failed. x

[sassy59]

Whatever is decided Ern, I just want to wish you all the very best. You know what’s right for you so good luck. Thinking of you. Xxx👍😘

[Ern007 in reply to sassy59]

Thank you. I am not ruling anything out, but I want to try all the less drastic options - I am at my GP on another matter on 20th, I will seek her opinion also.. I am wishing you well also at this time x

[sassy59 in reply to Ern007]

👍🤗😘

[Katinka46]

Wow…. You have so much going on. I admire your ability to hold it all together, and the confidence to challenge the doctors.

All the best and let us know how things develop.

K x

[Ern007 in reply to Katinka46]

Thank you. The hospital surgeons have all been great. My surgeon wanted me to have simple BCG treatment earlier this year, the MDT intervened and said Bladder removal. My big test now is in three weeks - when yesterdays results are back from lab - if the is no spread, then I will hang on longer to treatment I have, if it is spreading.I may give way. I do not rate our MDT system at all.

[Donald_1931]

Sounds like you have a bit of pondering to do over the next three weeks, Ern. We will be rooting for you whichever way it goes 😀

[Ern007 in reply to Donald_1931]

Thank you Donald. Last Feb my consultant said I was 100% sure to have BCG treatment - the MDT (multidisciplinary team ) wanted me to have a bladder removal. A team made up from all kind of medical groups. My consultant said OK we shall, you can have BCG but the next time you come after a cysoscopy you will be seeing a surgeon, not me. BLACKMAIL? I will know in three weeks or so. If they can prove to me my BC is spreading. I have nothing to lose with bladder removal, but while other treatments are working. Thank's for your support Donald

[Oshgosh]

it’s good that you have made your decision about future treatments.the MDT don’t always explain their decisions .

When I was first diagnosed,the MDT wanted me to have a lung biopsy,even though it was of no benefit to me.

I initially agreed,but researched it,I thought that it wasn’t a procedure,it was an operation .so I decided to refuse the biopsy.I’m so glad I did.

I’m wishing you all the best in 3 weeks.

[Coolcat6103 in reply to Oshgosh]

O actually read a comment yesterday on the pulmonary fibrosis forum about a woman who had a lung biopsy and, although it was able to diagnose which type it was she was never the same afterwards and suffered breathless ever since. They don't always tell you that these also have a negative effect. I'll always remember what my father in law said after refusing chemo for an incurable cancer..........Some of these people only get paid AFTER the operations are done, meaning if lung biopsy is their profession then it's in THEIR interest to preform them not yours and to never assume that every surgeon or medical professional has a halo! That will always stick with me especially now that I have COPD and no matter how many times I call the surgery it's impossible to see anyone other than the nurse. She's so swamped under she's fully booked for months, whilst the "doctors" seem to work for three short days a week!

[Oshgosh in reply to Coolcat6103]

agreed fully.

I suffer from pain over my lungs especially in the area where the biopsy would have been performed.

If I’d had the biopsy I would have blamed the pain on it.

What really made my decision was the fact that you had to sign to accept a full thoracotomy ( hope that is the right word) if they felt it necessary.

That made me e want to run for the hills

Take care,te sun is hot again today x

[djbctla]

Hi Ern007

I wish you a good outcome whatever decision you make.

Bernardine 🥰❤️🤗🤗🤗

[Ern007 in reply to djbctla]

Thank you, it comes down to whatever offers me the best chance,, Major surgery is not guaranteed so before that, I want to try less invasive treatments like Chemo and Radiation if radical treatment is needed.

[pegbl]

you seem very clear about what’s ahead of you as difficult as it is. I truly wish you well. Xxx

[Ern007 in reply to pegbl]

Thank you, in the end I will look at survival and other options, I will ask for less drastic treatments first. Chemo and Radiation seems a good option to start with, rather than removal of half my inside, if it has spread, then I will take that chance maybe.

[B0xermad]

Good luck Ern,stick to your guns as it's your body and health that you have a right on when and how you want it to go.hope you get some good results on your next consultation

[Ern007 in reply to B0xermad]

Thank's - I will know more after my follow up in about 3 weeks. If my BC has not spread, then I do not want bouncing into major surgery, if it has, then that is different, but i think not yet,

[Ergendl]

All the best, Ern. We know our own bodies better well after a lifetime, and often better than some medics do. So do what you think best, and let us know how you get on.

[Ern007 in reply to Ergendl]

I sure will - I will post after follow up, then I will have a clear picture

[Coolcat6103]

Hi Ern I'm glad it went well and I'm also glad you are in charge and using your own wishes to direct your treatment, NOT theirs!

[Ern007 in reply to Coolcat6103]

Thank's - I will be guided by what has actually happened and not by MDT members, I will accept when no other option is posible.

[Alberta56]

Good for you Ern. Stand firm to get your preferred option. I hope all goes well in 3 weeks and you can keep to your preferred option. xxx

[Bingo88]

Sorry to hear you are having a worrying time Ern007. Pleased everything was good yesterday and hope it continues. Take care. Always here if you need to chat. Brian

[Ern007 in reply to Bingo88]

Yesterday went well -I know what I face at follow up, unless they have changed their minsd.

[Nula2]

Hi Ern, as you say, you can keep your options open, that's one thing you are able to be part of. Everyone here is rooting for you. All my best wishes. Keep us posted 🙂xxx

[Karenanne61]

Thanks for the update. You seem to have things sorted. Sending best wishes.

[Ern007 in reply to Karenanne61]

Thank you

[Mooka]

I wish you well whatever is decided. You seem to have considered all your options very carefully so I’m sure you will make the right decision for you.

[Ern007 in reply to Mooka]

Thank you, I think treatment as is necessary is fair enough, Not in case off.

[HelenAlora]

Clearly when there are suggestions of such major invasive procedures it makes good sense for you to have your considered views taken into account . Good for you to not be passive in the decision making process. Fingers crossed the test results are good . And hope your mdt and every other medic treat you and your views with respect . Wish you all the best .

[Ern007 in reply to HelenAlora]

I can't be passive if having an op with many risks is offered, except for a life saving option. To old to have 8 hours ops unless necessary, Thank You

[Izb1]

You stick to your guns Ern, you sound like you have thought this through, dont be bullied and pushed into something that is not right for you, as you say you can always change your mind later. We are with you every step of the way x

[watergazer]

Wishing you all the best You’ll make the decision which is right for you. 🤗

[Ern007 in reply to watergazer]

Thank you, exactly - Last time they appeared to try and present it as the only option, I may have fell for that as my consultant had agreed with current treatments but the MDT seemed to change hos mind

[Oshgosh in reply to Ern007]

it’s made difficult when things are told to you in a consultation. It’s good that you have got your head round things.

[Ern007 in reply to Oshgosh]

True, it has been confusing with lots of changed.

[jackdup]

I hope and pray your choice of the alternate treatment will yield the results you are hoping for. Good luck.

[Ern007 in reply to jackdup]

Thank you. I have not made a definite choice yet, I want to know all the alternatives and all the factors including risks.

[jackdup in reply to Ern007]

it sure never hurts to explore all of the options.