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Does everyone forget to ask the right question😶

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User

Posted 03 Aug 2018 at 21:54

Hi all, diagnosed today, Gleason 8, psa 6.8.

but although I asked questions and had my wife with me, not sure I took in the responses. This happened all in the last 4 weeks. Due for a bone and ct scan next week. Other info 8 of 14 core positive and T2.

key question I didn’t ask was prognosis.

can anyone help put this into context.

Mike

User

Posted 04 Aug 2018 at 00:06

If your bone and other scans are clear, your prognosis will be that you will live until something else kills you. T2 is usually curable although there are no guarantees.

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

User

Posted 04 Aug 2018 at 08:55

I know the feeling! At this stage it's like an avalanche of info, and then when you sit down quietly to have a think it's difficult to sort out the wheat from the chaff.

What happened to me is that I remembered the consultant telling me that if so chose RT nothing could be done if it wasn't successful, but I still chose RT. This kept eating away at me and I worried about it more and more.

I had been given the name and number of the consultant's specialist nurse, so I gave her a ring. She was fantastic and explained that I had misunderstood, and what he actually said was that after RT, I couldn't then have more RT or surgery (obviously), but we would go back to hormone-type therapy, plus other concoctions and have a long life

The message from this is that these nurses are fantastically kind and knowledgeable, and have access to the consultant to get your queries answered. The advice you get is specifically for your situation. Find them in the oncology unit looking after you.

User

Posted 04 Aug 2018 at 11:01

Thank you, you have no idea how much that helped

User

Posted 04 Aug 2018 at 11:04

Thank you for taking the time to reply, I will make contact with the nursing specialist on Monda, have a good weekend

User

Posted 04 Aug 2018 at 11:44

Be aware that until you have completed the scan and probable biopsies, a prognosis might be just general. A prognosis specifically for you can be expected at your consultation at that stage. But stay optimistic🙂

User

Posted 04 Aug 2018 at 12:15

Hi and Welcome,

I think when you are first told you have PC like me as well we all panic and start looking for answers but because of the stages of detection and diagnosis it seems to drag in the early weeks for all the procedures to fit into place.Once you get the all clear on the bones and T levels and Gleason score is worked out you will get a fair idea of your decisions going forward .

It will pay you to read up as much as you can about the different choices you have and i think you may have a few,I found it helpful in my early stages to talk to members on this site and i felt reassured with the help that followed.

I am 22 months on from Brachytherapy and doing well, if you take that route please ask me more questions and i would be pleased to help you.You can also click anyones Avatar to see their journey.

Good luck John.

User

Posted 04 Aug 2018 at 14:24

When my husband was first diagnosed we were shell shocked just like you and your wife.

We got into a routine, discussing what we needed to know and I got a notebook to jot our questions down in, plus the answers when the specialist gives them.

it’s been a long time between diagnoses and now, eleven years in fact! We’re still here, asking questions and noting the answers, it’s a long haul but take heart, there a number of men who’ve made it.

User

Posted 04 Aug 2018 at 18:46

Can I thank you all for your consideration and perspective. It has actually help clear the fog from the initial shock. I will do my research whilst the test are ongoing, and come back to the forum to Leverage of your knowledge and experience. It is strange that for such a high volume cancer there is no singular definitive treatment.

thanks once again

Mike

User

Posted 04 Aug 2018 at 21:37

A complete diagnosis cannot be made until all the intended test/s scans have been done. I was given a provisional staging of T2A but this was upgraded to T3A after the result of the MRI which was done after biopsy. The surgeon no longer wanted to surgically remove my Prostate following this assessment, so it reduced my treatment options. It can also happen that even after all the tests/scans have been done, surgery reveals the cancer has not been contained within the Prostate. so further treatment is required. Clearly it is upsetting when this happens and I hope it will no be the case here but better to be aware of the possibility.

There are different aspects to consider when making a treatment decision so many consultants just advise patients of options suitable to them and leave the final decision to the man who after all has to live with potential side effects of treatment.

I recommend downloading or obtaining a copy of the 'Toolkit' available from the publications section of this Charity. It provides a lot of reliable information about PCa and various treatments including AS (Active Surveillance) where this is considered to be an appropriate long or short term option.

Barry

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