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User
Posted 21 Sep 2023 at 15:16

Hi all,

I'm new here and have been reading a few of the threads for information.

I'm 58 years old. I had an amber PSA in October 2020 but my doctor gave me a digital exam and told me it was nothing to worry about.

By August last year I had a red PSA, another digital exam and a dismissive doctor. I so wish I had insisted on an MRI, more fool me for not.

August of this year and a PSA through work of 9 and then 14 when redone by the doctor nearly 3 weeks later.

I have had an MRI which showed numerous areas of concern. Biopsies have been done and I am awaiting the results.

Unfortunately I have had some discomfort in my right side under the rib cage for several months which I had not given too much thought too, blaming indulgence and being overweight. Again more fool me.

So that's where I'm at. I'm scared that the discomfort in my side is an indicator that my cancer has moved to my liver. It seems 3-5 years would be the most I could hope for it that's the case.

I have a wife and adult children who are supportive but cannot be in my head when I'm awake through most nights.

Thanks for reading.

Mel

User
Posted 21 Sep 2023 at 15:16

Hi all,

I'm new here and have been reading a few of the threads for information.

I'm 58 years old. I had an amber PSA in October 2020 but my doctor gave me a digital exam and told me it was nothing to worry about.

By August last year I had a red PSA, another digital exam and a dismissive doctor. I so wish I had insisted on an MRI, more fool me for not.

August of this year and a PSA through work of 9 and then 14 when redone by the doctor nearly 3 weeks later.

I have had an MRI which showed numerous areas of concern. Biopsies have been done and I am awaiting the results.

Unfortunately I have had some discomfort in my right side under the rib cage for several months which I had not given too much thought too, blaming indulgence and being overweight. Again more fool me.

So that's where I'm at. I'm scared that the discomfort in my side is an indicator that my cancer has moved to my liver. It seems 3-5 years would be the most I could hope for it that's the case.

I have a wife and adult children who are supportive but cannot be in my head when I'm awake through most nights.

Thanks for reading.

Mel

User
Posted 04 Oct 2023 at 18:24

Hi Mel,

So sorry you’ve found yourself on here but it’s one of the best places to be if your diagnosed with Prostate Cancer. There are so many knowledgeable and supportive members on here as youve already found out.
the waiting is always the worst…I was a wreck waiting in my first PSA test following my RT and my poor family also suffered from my increase tetchiness! 
Having a supportive family is so important in getting through this, but if you are struggling(even if you aren’t) see if you can find a local support group such as Maggies. Your CNS should be able to advise on what groups are available. It has been transformational in the way I have dealt with this disease….just talking to other men with Prostate Cancer, or any other cancer for that matter, really helps you come to terms with it.

Good luck with your ‘journey’

Derek

User
Posted 21 Sep 2023 at 16:54
I agree 100% with Dave. Unless the cancer was seriously advanced and metastatic then you don't get pain - that is either unrelated or psychosomatic. My PSA was 12 by the time I had the RP and plenty of others have had it much higher and mine is now <0.01 so although we never say it is cured, it is in remission and I expect a long life unless something else gets me :)

Remember also that PCa is a slow growing cancer, especially in the early stages.

So please put everything in perspective and don't let it control your life or affect the relationship with your family. Most men die WITH prostate cancer, NOT because of it.

User
Posted 21 Sep 2023 at 19:18

Hi Cymro65,

Sorry that you have found yourself here.  I can only add to what others who are more knowledgeable than I have already said. 

My PSA score was 13.5 or thereabouts, so almost identical to yours.  I had an MRI scan and a biopsy, and was then offered a choice of either surgery or radiotherapy with hormone therapy.  They gave me time to think about it and I eventually chose surgery.  I was also told that I could wait a few months  to have the surgery so that I could have a Summer holiday first if I preferred to do so, as they didn't think it was urgent.  They said that the treatment was intended to be curative, and not just to 'contain' it.

So, it seems very unlikely that the pain you're experiencing is due to a spread of cancer.

However, I completely understand your anxiety and hope that you can get answers soon that will put your mind at rest.

Best wishes,

JedSee.

User
Posted 22 Sep 2023 at 15:42

Hi,

Thanks for your post.

It's good to read your positive journey. 

Unfortunately I'm a born pessimist and stress easily! Not the best for my current scenario.

10 days since I had my biopsies so hopefully I might hear something next week.

Thanks again,

Mel 

 

User
Posted 04 Oct 2023 at 17:26

Just an update.

I now have an appointment on Friday as the results of the biopsies are in.

However having already seen a letter sent to my GP after the biopsies were taken I have no doubt that it is cancer.

The letter said

MRI conclusion

Prostate volume 48cc

PIRADS 4, Likert 4

No pelvic lymphadenopathy

MRI staging = T2c, N0

I guess all I'll get to know on Friday is my Gleason Scores/Grade and told I'll need Bone and CT Scan. The waiting feels never ending.

User
Posted 05 Oct 2023 at 19:53

Try to avoid speculation, particularly of a negative kind. It always seems a long time waiting for a full prognosis and subsequent discussions with Consultants on way(s) to treat. It might help you understand more about PCa and it's treatment (although not all of the latter may be suitable), if you download the 'Tool Kit' here - https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 06 Oct 2023 at 01:24  | Reason: to highlight link

Barry
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User
Posted 21 Sep 2023 at 15:51

Tests done at different times in different labs are not great for comparison, so don't read too much in to how fast you might think your PSA is rising. My PSA was 28 on one test and a few weeks later 21, that didn't mean I was getting better it just meant PSA tests need to be done consistently if you want to try and use them for diagnosis.

The statements I make below are true for about 95% of people. There is a chance you are in the 5% who have a different cancer to normal.

The pain in your ribs is almost certainly not prostate cancer. If you had came on here saying your PSA was 300 and you had a pain in your bones, then yes it could be cancer. Hardly anyone with a PSA below 30 has advanced cancer.

As you are 58 and you have a highish PSA you probably have got prostate cancer, but if you have it is highly lightly to be curable, or at the very least treatable. Until you have a biopsy we won't know anything of much use, but currently your life expectancy is about 30 years and prostate cancer won't be your cause of death.

Dave

User
Posted 21 Sep 2023 at 16:27

Hi Dave, 

Thanks so much for your reply.

Let's hope I'm not in that 5% you refer to.

It feels like a year already since I had the biopsies but it's just over a week!

I'll go and read your ongoing story. I see there’s one on questions to ask which will hopefully be helpful in the next week or two.

Thanks again,

Mel

User
Posted 21 Sep 2023 at 16:54
I agree 100% with Dave. Unless the cancer was seriously advanced and metastatic then you don't get pain - that is either unrelated or psychosomatic. My PSA was 12 by the time I had the RP and plenty of others have had it much higher and mine is now <0.01 so although we never say it is cured, it is in remission and I expect a long life unless something else gets me :)

Remember also that PCa is a slow growing cancer, especially in the early stages.

So please put everything in perspective and don't let it control your life or affect the relationship with your family. Most men die WITH prostate cancer, NOT because of it.

User
Posted 21 Sep 2023 at 19:18

Hi Cymro65,

Sorry that you have found yourself here.  I can only add to what others who are more knowledgeable than I have already said. 

My PSA score was 13.5 or thereabouts, so almost identical to yours.  I had an MRI scan and a biopsy, and was then offered a choice of either surgery or radiotherapy with hormone therapy.  They gave me time to think about it and I eventually chose surgery.  I was also told that I could wait a few months  to have the surgery so that I could have a Summer holiday first if I preferred to do so, as they didn't think it was urgent.  They said that the treatment was intended to be curative, and not just to 'contain' it.

So, it seems very unlikely that the pain you're experiencing is due to a spread of cancer.

However, I completely understand your anxiety and hope that you can get answers soon that will put your mind at rest.

Best wishes,

JedSee.

User
Posted 22 Sep 2023 at 14:27

Hi Mel - My journey was this year and I can tell you that I was most scared at your stage waiting for the biopsy results. After the diagnosis I then felt in a bit more control and with options. Don't beat yourself up on what if's or missed opportunities as we can't go back. Dave has given you an excellent scenario of what is the most likely situation, focus on the 95% rather than the 5%. Fear is not logical I chose to have mine out and whilst PSA tests still scare me my consultant tells me I am far more likely to die in a car crash than from prostate cancer and I don't worry about getting in a car. 

User
Posted 22 Sep 2023 at 15:42

Hi,

Thanks for your post.

It's good to read your positive journey. 

Unfortunately I'm a born pessimist and stress easily! Not the best for my current scenario.

10 days since I had my biopsies so hopefully I might hear something next week.

Thanks again,

Mel 

 

User
Posted 04 Oct 2023 at 17:26

Just an update.

I now have an appointment on Friday as the results of the biopsies are in.

However having already seen a letter sent to my GP after the biopsies were taken I have no doubt that it is cancer.

The letter said

MRI conclusion

Prostate volume 48cc

PIRADS 4, Likert 4

No pelvic lymphadenopathy

MRI staging = T2c, N0

I guess all I'll get to know on Friday is my Gleason Scores/Grade and told I'll need Bone and CT Scan. The waiting feels never ending.

User
Posted 04 Oct 2023 at 18:24

Hi Mel,

So sorry you’ve found yourself on here but it’s one of the best places to be if your diagnosed with Prostate Cancer. There are so many knowledgeable and supportive members on here as youve already found out.
the waiting is always the worst…I was a wreck waiting in my first PSA test following my RT and my poor family also suffered from my increase tetchiness! 
Having a supportive family is so important in getting through this, but if you are struggling(even if you aren’t) see if you can find a local support group such as Maggies. Your CNS should be able to advise on what groups are available. It has been transformational in the way I have dealt with this disease….just talking to other men with Prostate Cancer, or any other cancer for that matter, really helps you come to terms with it.

Good luck with your ‘journey’

Derek

User
Posted 05 Oct 2023 at 19:53

Try to avoid speculation, particularly of a negative kind. It always seems a long time waiting for a full prognosis and subsequent discussions with Consultants on way(s) to treat. It might help you understand more about PCa and it's treatment (although not all of the latter may be suitable), if you download the 'Tool Kit' here - https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

Edited by member 06 Oct 2023 at 01:24  | Reason: to highlight link

Barry
User
Posted 05 Oct 2023 at 21:44

Hi Cymro65,

Sorry to hear your news.  At your upcoming appointment, you will probably be given literature which will give you several options for treatment.  Take your time reading up on all the pros and cons of each.  With a diagnosis of T2c, it shouldn't be necessary to make a very quick decision.  And as Decho has said, use this forum, your Community Nurse Specialist and any support groups such as 'Maggies' to help you to get your head around it all before choosing a treatment.

Best wishes,

JedSee.

 
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