Coping with the wait

User

Posted 16 May 2022 at 19:58

Hi everyone,

My 64 year old dad has been diagnosed with prostate cancer incidentally when having tests for something else. His PSA is 170 and we are all in complete shock because he has no symptoms of anything. He has the results of his MRI (which was done on 12th April) PIRADS 5 which obviously isn’t unexpected with his PSA. He had his bone scan last Monday 9th May. We are terrified it has spread to his lymph and bones too but haven’t heard anything and have just been given an appointment for 24th May. We’re all left wondering whether someone is going to phone if the bone scan is bad news or whether they’ll just give us a diagnosis as serious as it could be on 24th May. Does anyone have any experience of this please? The waiting and unknown is so painfully hard. It’ll be 6 weeks since we first found out about the cancer by the time we see the consultant again.
Thanks for reading.

User

Posted 16 May 2022 at 19:58

Hi everyone,

User

Posted 16 May 2022 at 23:31

Hi Reb,

As Dave has said, we all know how agonising this wait is and I think regardless of what is said you will still all feel better when you know what is going on and have a plan in place.

When my husband got the call to book him in for a bone scan even before we had any MRI results our world just fell apart and we just thought the absolute worst was coming.

When we got the final diagnosis we were told it had spread to his pelvic bone and to atleast 1 lymph node. Even with this news (it was better than where my mind took me) we felt we could move forward and get a plan for treatment. We ended up getting a second opinion which disputed the bone mets but still in lymph nodes. He has since had his prostate removed and 14 lymph nodes and is doing really well.

So as difficult as it is try not to worry too much and hopefully things will be much better than what you are thinking. So much that can be done these days and new treatments becoming available all of the time.

Keep us posted, best of luck for the appointment

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User

Posted 16 May 2022 at 23:13

Sorry Reb, I think everyone on this forum would agree the first few weeks when you do not know what you are dealing with are the worst. Once you have a clear diagnosis a plan can be put in place, and things get easier.

Mid 60s is the age most people are diagnosed with PCa . This is a very slow disease, I suspect if it hadn't been discovered by accident it would have been another five years before it was fatal. Now it has been discovered it will be treatable and hopefully curable.

I was diagnosed at 53, the first thing I said to anyone when I told them my diagnosis was "I'm more likely to die of a road traffic accident than die of cancer before 60". Now 70 I wasn't so sure about, but having been treated with curative intent and things seem stable I'm pretty confident I'll make 70, but I won't make any promises that I'll be here at 80.

So you will just have to wait for the diagnosis. Even if it was really bad news I think he would still be around in ten years time and if it is better news he may be around in 20 years time.

Dave

User

Posted 16 May 2022 at 23:31

Hi Reb,

As Dave has said, we all know how agonising this wait is and I think regardless of what is said you will still all feel better when you know what is going on and have a plan in place.

When my husband got the call to book him in for a bone scan even before we had any MRI results our world just fell apart and we just thought the absolute worst was coming.

Keep us posted, best of luck for the appointment

User

Posted 17 May 2022 at 06:20

I'm afraid that with a PSA of 170, it is extremely likely that it has spread outside the prostate, so you should be prepared for that. However, the fact that it has been found means that it's now treatable. Advanced prostate cancer can't be cured, but there are many treatments available which will hopefully keep your dad around for many years to come. "Incurable" does not mean "terminal".

Waiting for test results is the hardest part of the entire process; you'll know where things stand once you have the test results back.

All the best,

Chris

Edited by member 17 May 2022 at 07:11 | Reason: Not specified

User

Posted 17 May 2022 at 08:37

Hi Reb,

Sorry for your news but as Dave said this is the worst part.

I had a psa reading 162 and they told me to expect it had gone to the bones.After ct MRI and pet scans it had spread but to the lymphs only.

I had 38 radiotherapy sessions and prostap hormone non of it was as bad as I thought it was going to be.I am coming up to my third year still on hormones,psa now 0.2 feeling fine.

Good luck

User

Posted 17 May 2022 at 08:48

You don't mention whether he has had a biopsy yet - if not, you may still have to wait for that before they can give a full diagnosis.

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

User

Posted 21 May 2022 at 21:29

Thanks for all the replies - so helpful to read other peoples experiences.
My dad contacted the hospital the other day- the MRI showed spread to the lymph but she didn’t specify to what degree. She didn’t mention anything about bones - would bone spread show up on an MRI or only on the bone scan? And I’m sorry I forgot to say on my first post- he’s had a biopsy but no results from that either.
Finding the wait so tough, I had a baby last year and my maternity leave finishes Monday. My parents were so excited to be on grandparent duty a few days a week and I’m so gutted for them this is now hanging in the way.

User

Posted 21 May 2022 at 23:30

Grandparent duty - statistically, even if there is spread to the bones, your dad is likely to see his grandchild start school and maybe even move on to high school. treatments are improving all the time and many men now live for 10 years + with advanced PCa

Good luck on Monday!

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

User

Posted 22 May 2022 at 08:15

Hi Reb ,the waiting is the worst part .
My OH had lymph spread 6.5 years ago ,had no grandchildren then but have just welcomed our 6 th !
I’m sure once treatment starts things will get easier .
Best wishes
Debby

User

Posted 22 May 2022 at 09:03

Hi again Reb,
Two and a half years ago I was diagnosed with PC Gleason 4+5 _ 9 spread to lymph nodes,after radiotherepy and hormones I,m feeling good in fact we are going to Canada to see our 3 grandkids we have not seen .The only thing is it was expensive insurance wise,but worth it.we also have six grandkids here and we have been on grandparent duty throughout my treatment

Good luck pungle

User

Posted 23 May 2022 at 17:53

Hi,

The NHS is great in principal but no one seems to realise the sheer agony of waiting for treatment results and treatment/surgery dates. Some points:

1. Get the telephone number of the consultant's secretary and keep phoning.

2. Make sure you are on the computer, which at least means that they know about you properly and are in the system, so to speak. Some people wait and wait and they are not even on the computer. Be on the lookout for questions like "when did you have the treatment" ... they should know that if it's on the computer. Always keep mentioning your hospital number, that's the hook for everything.

3. Your GP can also put pressure on. But, sometimes they say "Why don't you phone the hospital?". You can then say "I did but I am not getting anywhere".

Cheers,

Otto

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