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User
Posted 09 Dec 2018 at 04:43

I was diagnosed with prostate cancer on Tuesday 4th December, Gleason score 3+4, PSA 7.9. I was given the option of surgery or radiotherapy. I was told to go away and consider which I required and get back to my liaison person at the hospital. After reading the information I am tending towards surgery but required more information to make an informed choice. Also, I wanted to know whether I could have an MRI, CT scan or bone scan to see if the cancer had spread. I got back to the liaison person but was told I could not see the radiotherapy consultant unless I was going to go down that route and I could not have an MRI, CT or bone scan if I opted for surgery, but could have an MRI if I was going down the radiotherapy route. I am therefore at a crossroads not knowing which way to go.

User
Posted 09 Dec 2018 at 16:56
Hi Ian,

Thank you for your very welcome advice. I thought the whole first telling I had seemed very rushed and chaotic, you had just been told you have cancer, the consultant is trying to get across his message, the nurse is butting in cutting him off and you are sent out with a load of bumf to digest on your own.

Having read your profile you seem to have been through the mill. I am glad things seem to be moving in the right direction, I hope things go on in the same way.

Thank you once again for you advice, much appreciated.

Paul

User
Posted 30 Jan 2019 at 14:47

Hi,

After much badgering, I have finally got my bone and CT scan results. All clear!

So it looks like my op can go ahead in March! Such a relief.

User
Posted 31 Jan 2019 at 18:40

That's great. Now you can go ahead knowing those scans are clear.

All the best,

Ian

Ido4

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User
Posted 09 Dec 2018 at 09:52
Please download or order the ‘Toolkit’ information folder from this website. It contains invaluable information to help with your decision.

Of course you can get a second opinion from an oncologist, so insist on one, and ask nicely for a bone scan and an mpMRI, but ask the consultant, or the secretary, not ‘the liaison person’.

Others here will no doubt contribute further opinions.

Cheers, John.

User
Posted 09 Dec 2018 at 10:13

Hi John,

Thanks for your reply most helpful.

User
Posted 09 Dec 2018 at 14:13
Hi Trixiebelle.

I am about 4 weeks ahead of you I was diagnosed 13th November with very similar results as yours so I know exactly what you are going through.

Take your time, the only good thing about PCa is that it is slow growing so you don’t need to rush your decision.

Read all you can the PCUKweb site has everything you need to know. Check the pros and cons of all the treatments you have been offer then you will be able to make an informed choice as to which way to go.

We are all deferent and make our choices for different reasons.

As is said by others here not a club you really want to be a member of but welcome.

Bob

User
Posted 09 Dec 2018 at 15:59
Hi Bob,

Thank you fot that. How are you going?

Paul

User
Posted 09 Dec 2018 at 16:33
Trixibelle, how can you, the surgeons or the oncologists make an informed decision without an MRI?

Surely both need to know where exactly the cancer is in order to treat you.

That’s not helpful. I saw a surgeon and an oncologist to discuss my situation and options. That did take time though, a few weeks between seeing the surgeon and then seeing the oncologist.

I didn’t get offered a bone scan at that time and I was unaware that would be useful in decision making.

I would telephone the specialist nurses at PCUK for advice on 0800 074 8383.

Best wishes,

Ian

Ido4

User
Posted 09 Dec 2018 at 16:56
Hi Ian,

Thank you for your very welcome advice. I thought the whole first telling I had seemed very rushed and chaotic, you had just been told you have cancer, the consultant is trying to get across his message, the nurse is butting in cutting him off and you are sent out with a load of bumf to digest on your own.

Having read your profile you seem to have been through the mill. I am glad things seem to be moving in the right direction, I hope things go on in the same way.

Thank you once again for you advice, much appreciated.

Paul

User
Posted 09 Dec 2018 at 17:00

Originally Posted by: Online Community Member
Hi Bob,
Thank you fot that. How are you going?
Paul

 

i have a post running at the moment called My Journey, if you read it you will see my decision and how I reached it 

 

Bob

User
Posted 09 Dec 2018 at 17:05
Thanks Bob will look,at 'Your Journey' with great interest. Please keep in touch.

Paul

User
Posted 15 Jan 2019 at 14:52

Hi Paul

I was diagnosed in September with very similar results (PSA 7.9; Gleason 4+4). I was also given 2 options - surgery (robotic) and radiotherapy. Given my (relatively young) age of 59 and my health (healthy other than the cancer), my urologist strongly recommended the robotic surgery. 

To be honest, one other reason why he may have recommended the surgery was because he is a surgeon himself but I am happy with the choice I made. He strongly believed that I would make a speedy recovery and should the surgery unable to remove all traces of cancer, we could always add the radiotherapy. My surgery took place towards the end of November and I am recovering well, although I do have some incontinence issues. This is getting surely better though!

I do, however, strongly recommend that you insist on a bone scan and MRI. I was offered both and these results really helped me to make a wise choice and to have confidence in my treatment. These scans are also crucial in determining your cancer stage. 

All the best!

User
Posted 30 Jan 2019 at 14:47

Hi,

After much badgering, I have finally got my bone and CT scan results. All clear!

So it looks like my op can go ahead in March! Such a relief.

User
Posted 31 Jan 2019 at 18:39

That's great. Now you can go ahead knowing those scans are clear.

All the best,

Ian

Ido4

User
Posted 31 Jan 2019 at 18:40

That's great. Now you can go ahead knowing those scans are clear.

All the best,

Ian

Ido4

User
Posted 15 Mar 2019 at 16:32
I have not posted for sometime, my op has been cancelled and should now take place in April.

Heigh Ho, such is life.

User
Posted 16 Mar 2019 at 15:02

No problem you decided op,when i had to make a decision , i was influeced by my what my mates been thru and what they decided ? i personally knew 5 who had different treatments 2 had rt and their treatment and following recovery swayed me to that myself . i found it ’ reassuring ’ knowing friends have been thru it . 

User
Posted 15 Apr 2019 at 08:28

Just an update.

Had my op on Monday 8th April. Have spent the last 7 days in hospital. I came home last night. 

The seems op to have gone ok and will have to wait and see what happens in the coming weeks.

one question has anyone been given Inhixa injections to counter DVT's?

If so have they given you terrible sweats?

User
Posted 15 Apr 2019 at 10:52
No idea about the injections I had clexane.

Check you don't have a fever, if you do get straight back to hospital.

If in doubt call the ward or you GP anyway.

User
Posted 15 Apr 2019 at 21:21
If you are concerned, contact the ward or your GP just to check you haven't got an infection
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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