I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

First appointment with NHS consult went from bad to worse!

Email this conversation Print this conversation

User

Posted 08 Oct 2016 at 17:06

How did you receive your diagnosis on the 21st September, was it at the same hospital of was it at a private hospital ? Have you had any scans or MRI.

I know hospitals operate in different ways, my diagnosis was given to me a week after the biopsy by my consultant and I was given the choice's of treatments subject to scan results, then I was seen by a urology nurse who gave me reams of info and we had a 40 minute chat about most things prostate. I then returned to the hospital about 2-3 weeks later after scans and gave them my preferred choice of treatment.

Thanks Chris

User

Posted 08 Oct 2016 at 18:42

Originally Posted by: Online Community Member

How did you receive your diagnosis on the 21st September, was it at the same hospital of was it at a private hospital ? Have you had any scans or MRI.

I know hospitals operate in different ways, my diagnosis was given to me a week after the biopsy by my consultantand I was given the choice's of treatments subject to scan results, then I was seen by a urologynurse who gave me reams of info and we had a 40 minute chat aboutmostthings prostate. I then returned to the hospital about 2-3 weeks later after scansand gave them my preferred choice of treatment.

Thanks Chris

Thanks for message.

I received my diagnosis by a specialist nurse. Had a chat with her for about 20 minutes. She gave us a very quick rundown of my biopsy. Did not take much in as I was still trying to accept that I had Prostate cancer.

Had an appointment with the consultant this Thursday.....dreadful experience. Did not give me any details about my biopsy test. All he offered was Active Survellience or surgery. Told by him and the nurse that I had to make a decision by Monday!!! 3 full days to make one of the most important decisions in my life!

He made an appointment for me to have an MRI scan.

Am going back to my GP to ask to be refered to another consultant.

Have been advised by Patiient Advisory Service to make an official complaint.

What treatment did you finally opt for?

Hope it went well.

Regards.

User

Posted 08 Oct 2016 at 20:02

Hello. I am not an expert but did I just read you've still got to have an MRI? Surely that comes before you make a decision on treatment? It sounds like you have no rush for treatment anyway. So you have plenty of time to see someone else.

I said earlier that my OH was offered another biopsy if he took up active surveillance. This was offered but not done as he decided to have brachytherapy instead. He has suffered bad side effects, not quite sure why as I can't find anyone else that has suffered the same. (Basically a sort of radiation induced cystitis) But on the plus side his PSA is 0.4 at 22 months after treatment.

There are other on here that have had good brachytherapy experiences.

All the best.

User

Posted 09 Oct 2016 at 08:27

As sjtb says you should have had an MRI. It will show if the cancer is contained and if it is, given the other scores, you should have a number of options available to to you.

*******

We can't control the winds - but we can adjust our sails

User

Posted 09 Oct 2016 at 09:04

Originally Posted by: Online Community Member

As sjtb says you should have had an MRI. It will show if the cancer is contained and if it is, given the other scores, you should have a number of options available to to you.

*******

As far as I am aware an MRI scan is not always 100% accurate. It depends on the clarity of the picture and the expertise of the person viewing it. MRI MAY show whether or not the cancer MAY be contained. It may be interpreted wrongly. Plenty of examples of people who's MRI has been inaccurate or misread. It is another guide to be considered along with other investigative techniques.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 09 Oct 2016 at 15:33

Just to clarify, we didn't find a better consultant "based on hearsay" we are fortunate enough to hava a professor of oncology in the family, she did some background work for us, asked around. She was not based at the hospital we went to but she came up with the name of a highly regarded person by his peers and we were so thankful to her.

As I say, we were fortunate but we've had our ups and downs the hospital PALS are a great resource.

Good luck

User

Posted 09 Oct 2016 at 15:40

Originally Posted by: Online Community Member

As I say, we were fortunate but we've had our ups and downs the hospital PALS are a great resource.

Good luck

Thanks for message.

We have been doing lots and lots of research. Have 'found' a consultant in another hospital who, according to the facts/figures has complted more robotic procedures and - by chance - a friend of my brothers had him as his surgeon. He was very, very satisfied with him and said he would highly recommend him. Issue is...we have got to get our Commissioning Authority to agree to us being refered to the other hospital in another Commissioning Authority. Just seems so sad that one is battling with cancer...and at the same time battling with the NHS to get the best treatment possible.

Regards.

User

Posted 09 Oct 2016 at 16:13

Blueytruey my comment was in response to Ramuk not you - it seems a bit early in the process for him to be deciding precisely who he wants before he has spoken to the GP tomorrow.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Oct 2016 at 16:19

Hope things are progressing a lot better. AS is perfectly fine . The key is to keep control and ensure as you are doing get facts. Keep asking questions and if possible keep notes. Ie see Alan excellent post. Thousands of men could have Gleasson 6 or less.. and not know and never know.

I was treating very well by nhs. However the mind set tends to be if you don't ask. Info isn't voluntered.

Only in hindsight do you realise, that even agressive pc tumours don't seem like others cancers to require urgent urgent attention. Ie 2 to 3 months seems a reasonable time for you and partner to take the emotional impact on board. AS will be part of a journey. Some men I know at the extreme may just carry on and ignore and do absolutely nothing. Everyone is unique. Partners and family can put undue pressure, trying to help. My mother in law is very good, however I don't think see can understand the complexity and unknown direction pc may take. Thanks for sharing your experiences. . There should be a local support group that meet in your area, a wealth of knowledge. ...

Edited by member 13 Oct 2016 at 16:23 | Reason: Not specified

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.