Second Opinions: How do you go about... - Advanced Prostate...

Advanced Prostate Cancer

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Second Opinions

Davey77 profile image
12 Replies

How do you go about getting second opinions on treatment?

I had a bladder tumour removed and even though the initial biopsy said it was non-muscle-invasive, the first recommendation of the doctor was bladder removal.

An MRI subsequently showed a currently fairly small mass just outside the bladder. I have been advised that my only treatment option is complete removal of the bladder and prostate.

While waiting for a CT scan to see if it has spread to my lungs, I have been becoming more conscious that I am being told Chemo or Radiotherapy is not possible by a surgeon with a very fancy piece of new equipment to play with.

It's sad that any doubts on treatment should arise, but how do you make sure you are happy with the treatment being offered

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Davey77 profile image
Davey77
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12 Replies
Huzzah1 profile image
Huzzah1

Here in the States, getting more opinions is as easy as making an appointment with the Dr. of your choice. When I was given my Dx, I saw 9 different Dr's while putting together my team of 3 (Uro, RO and MO). I later added a MO at MD Anderson so I have 2. I'm not sure how you navigate that with the NHS.

Davey77 profile image
Davey77 in reply toHuzzah1

In the UK, making an appointment with any doctor is as difficult as possible. If I see my GP, they might do something but it's unlikely. I could possibly ring the nearest private hospital, but even the consultation would cost a fortune

Doctorsceptic profile image
Doctorsceptic in reply toDavey77

No it should not be difficult so go ahead and ask. Dont ask you dont get.

If it is, put it in writing with a copy to the consultant. Then it is on the record. It is your life and well being and these are major decisions you are signing up for.

If necessary copy it to everyone you can think off - the local NHS commissioning board, your MP . It is your right to have a second opinion.

Be polite but absolutely firm. Do not take no for an answer.

Tall_Allen profile image
Tall_Allen

In the UK, can you ask your Consultant for a second opinion? It may help if you can give your Consultant a list of suggested specialists.

Maybe these articles can help you find suggested specialists:

prostatecancer.news/2017/12...

prostatecancer.news/2017/12...

I'm sorry I don't know who the bladder cancer specialists are in the UK.

My friend, who had early non-muscle invasive bladder cancer, was treated with BCG, which was delivered with a catheter.

Doctorsceptic profile image
Doctorsceptic

You just ask for second opinion either from the oncology team or your GP. Just tell them it’s not that you don’t trust their decision but you need to clear your head and be confident of way forward. A good team will welcome that and support your request.

There are major oncology services in all the big cities so depends where you live - London, Manchester, Edinburgh etc

Do a quick google search to find your nearest.

Aardvark4 profile image
Aardvark4

You can certainly get a second opinion privately at The Royal Marsden Hospital. You can do so face to face or send them your medical details and arrange a phone consultation. privatepatients@rmh.nhs.uk.

Private Patient Administration Officer

The Royal Marsden NHS Foundation Trust

2nd Floor Carew House

Station Approach

Wallington, Surrey

SM6 0DX

Tel 0207 811 8111 Option 2

Email: privatepatients@rmh.nhs.uk

Aardvark4 profile image
Aardvark4 in reply toAardvark4

This guy seems to fit your needs

royalmarsden.nhs.uk/our-con...

Aardvark4 profile image
Aardvark4 in reply toAardvark4

I'm guessing that if your CT scan shows spread, then the surgery will be cancelled and systemic treatment started??

MelodyCat profile image
MelodyCat

In the US there are two online services from Stanford University in California and Dana Farber in Boston. I did the Dana Farber version which was $2400. Insurance did not cover. It was pretty much Standard of Care without any miracles added but it was very competent. They requested the files from my other doctors. I assume someone from the UK can use the service.

Good luck!!!!

SsgCulldelight profile image
SsgCulldelight

Hey you got do research into Your networks provider by Your coverage in proximity to where you live unless u are able to travel. Yes it's serious for you my friend, but you gotta trust your gut feeling, what is your spirit Telling you is right? Go with that first feeling because I know you trust Yourself. Bladder removal means a urostomy or continence retention bag, which is uncomfortable to say the least but doable. This contingent on if you decide to watch and wait or remove tough decisions I know but a reality you gotta address my friend. Love and Light always and Trust Yourself.

pj1121 profile image
pj1121

search for a cancer center near you call and ask for a second opinion your primary will foward all tests. I toldmy MO i was going to get a second and she said great this bolster my confidence in her. I went to UCSF they reccomended more extensive radiotherapy which i got from my primary

j-o-h-n profile image
j-o-h-n

FYI If you should have a lung issue.......(which you mentioned in your post) you should keep the medical name KEYTRUDA in the back of your mind.

Good Luck, Good Health and Good Humor.

j-o-h-n

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