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Is it ok to be scared.

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User
Posted 08 Jun 2024 at 21:18

After having had my diagnosis recently upgraded from 3+3 to 4+4, and awaiting a further MRI and bone scan, I am finding now that my fear for my future has now become a reality rather than a possibility with my previous diagnosis. 

Am I right to feel this way.

 

User
Posted 09 Jun 2024 at 09:39

Hi Trev,

Oh Yes! Being Scared is the first emotion I got when diagnosed, facing you mortality is very frightening. Once you have your test results and a treatment plan in place you should start to feel a lot better, and hopefully you will still be on a curative path. Anxiety, anger(why me?), sadness are other emotions you may have to deal with, I had them all. The good news is though that there IS plenty of support out there and you’ve made the first step by joining this forum where there is a wealth of knowledge and support…and remember there is NO such thing as a silly question so ask away😊

I am now(hopefully🤞) nearing the end of my journey and I’ve dealt with emotions by….

1. Joining this forum and being an active contributor.
2. Calling the Specialist nurses on here who are very knowledgeable and will make time for you.
3. Joining a Maggies Men’s Cancer support Group which’s has been transformational in the way I have coped with this disease, and I have made many close friendships.
4. being proactive with my treatment
5. Staying as active and fit as my treatment has allowed me to
6. Being able to laugh at some of the treatments and side effects that treatment has brought to me
7. Being good to myself and family, giving us lots of treats, going on lots of holidays and having fun.
8. Living for the moment.
9. being prescribed Sertraline for anxiety brought on by HT.

I realise that’s quite a list but even if you manage some of them it will help you get through all the emotions.

I wish you ALL the best and ‘Don’t let PCa define you’

Derek

User
Posted 09 Jun 2024 at 08:17

Morning  Trev.

Welcome to the forum.

I see that you were diagnosed six years ago. Have you been on active surveillance since then? Was your second biopsy as a result of your active surveillance? Did your PSA rise during the 6 years. During this monitoring period did you have any other follow up DREs or scans?

If you read my profile, you'll see our circumstances are very similar but my 'progression' was over a period of less than two years. Coincidentally, we used the same hospital. 🤔

Apparently it is rare for the Gleason score to progress. The chances are, if its the same tumour, you were higher than Gleason 6, but the first biopsy may have missed the more aggressive cells.

You're bound to be concerned, that's natural.

Best of luck mate.

Edited by member 09 Jun 2024 at 08:50  | Reason: Additional text

User
Posted 10 Jun 2024 at 17:03

Started around the 8 mark has gradually crept up to around 12/13. That is over the 6 or so years.

 

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User
Posted 09 Jun 2024 at 00:39

It’s natural to fear what’s ahead as everything’s uncertain right now. Hopefully once your tests are complete and you’ve decided on treatment you’ll feel better once it starts. 

User
Posted 09 Jun 2024 at 01:09

Originally Posted by: Online Community Member
Am I right to feel this way.

Absolutely! It would be extraordinary if you didn't.

You've joined this forum and that's a positive step in itself. Waiting for a full diagnosis is the worst part of this and so far all you have is the G8 but prostate cancer treatment now, is very good and much better than it was even 5 years ago so the odds are in your favour. The next step will be that you'll have to decide what form of treatment is going to be the best for you next, preferably with advice from both a urologist and a radiation oncologist.

Jules

 

User
Posted 09 Jun 2024 at 08:17

Morning  Trev.

Welcome to the forum.

I see that you were diagnosed six years ago. Have you been on active surveillance since then? Was your second biopsy as a result of your active surveillance? Did your PSA rise during the 6 years. During this monitoring period did you have any other follow up DREs or scans?

If you read my profile, you'll see our circumstances are very similar but my 'progression' was over a period of less than two years. Coincidentally, we used the same hospital. 🤔

Apparently it is rare for the Gleason score to progress. The chances are, if its the same tumour, you were higher than Gleason 6, but the first biopsy may have missed the more aggressive cells.

You're bound to be concerned, that's natural.

Best of luck mate.

Edited by member 09 Jun 2024 at 08:50  | Reason: Additional text

User
Posted 09 Jun 2024 at 08:52

Yes, I had been under surveillance since the original diagnosis, the reason for second biopsy was the sudden rise in my PSA from 9.8 to 12.8.

However, the result of the biopsy came as a complete shock. 

User
Posted 09 Jun 2024 at 09:32

Originally Posted by: Online Community Member

However, the result of the biopsy came as a complete shock. 

Me too Trev, me too.

Can you remember what your PSA was when you were diagnosed 6 years ago and your cancer staging at that time?

As far as I'm aware NICE guidelines then and now (although amended in 2021) state that whilst on active surveillance you should have had a follow up MRI and DREs within 12 to 18 months. Were these never offered to you?

 

Edited by member 09 Jun 2024 at 10:30  | Reason: Additional text

User
Posted 09 Jun 2024 at 09:39

Hi Trev,

Oh Yes! Being Scared is the first emotion I got when diagnosed, facing you mortality is very frightening. Once you have your test results and a treatment plan in place you should start to feel a lot better, and hopefully you will still be on a curative path. Anxiety, anger(why me?), sadness are other emotions you may have to deal with, I had them all. The good news is though that there IS plenty of support out there and you’ve made the first step by joining this forum where there is a wealth of knowledge and support…and remember there is NO such thing as a silly question so ask away😊

I am now(hopefully🤞) nearing the end of my journey and I’ve dealt with emotions by….

1. Joining this forum and being an active contributor.
2. Calling the Specialist nurses on here who are very knowledgeable and will make time for you.
3. Joining a Maggies Men’s Cancer support Group which’s has been transformational in the way I have coped with this disease, and I have made many close friendships.
4. being proactive with my treatment
5. Staying as active and fit as my treatment has allowed me to
6. Being able to laugh at some of the treatments and side effects that treatment has brought to me
7. Being good to myself and family, giving us lots of treats, going on lots of holidays and having fun.
8. Living for the moment.
9. being prescribed Sertraline for anxiety brought on by HT.

I realise that’s quite a list but even if you manage some of them it will help you get through all the emotions.

I wish you ALL the best and ‘Don’t let PCa define you’

Derek

User
Posted 10 Jun 2024 at 17:03

Started around the 8 mark has gradually crept up to around 12/13. That is over the 6 or so years.

 

User
Posted 10 Jun 2024 at 21:18

Originally Posted by: Online Community Member
Started around the 8 mark has gradually crept up to around 12/13. That is over the 6 or so years.

Cheers Trev.

I'm just trying to ascertain, during your 6 years active surveillance, apart from PSA checks, what other monitoring you had?  During that time, did you have any periodic follow up DREs or MRIs as part of your AS?

It appears that during your AS your PSA gradually rose, but it was only the sudden recent rise from 9.8 to 12.8 that triggered your 2nd biopsy. Did you have an MRI prior to this to help guide it.

As I said earlier, our journeys have been quite similar. We've both had disease 'progression' during AS. I feel my monitoring was inadequate, yet on your profile you state you were well cared for. I'm just trying to compare the extent of our AS monitoring, which may help explain our differences of opinion.

If you don't mind, to aid this comparison, can you recall what your cancer staging was when you were first diagnosed. Mine was T2a and my PSA was about 5.

Also, what sort of biopsies did you have? My first was a TRUS biopsy, the second was transperineal, done under general anaesthetic.

 

Edited by member 10 Jun 2024 at 21:25  | Reason: Typo

 
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