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Confused diagnosis letter

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User
Posted 25 Jan 2023 at 20:27

Hi there.

My dad is 64 and the most special person to me. He's been diagnosed with T2 cancer and he is frightened but hiding it well. 

I am not coping. I am a single parent to his only two grandchildren, work full time in the same company and he's a very well known lorry driver in the business. 

He had a PSA of 7.9 and a Gleason score of 7 (4+3) with moderately aggressive cancer. (Ironically 7 used to be my favourite number. Not so much now)

He was told in his consultation they'd caught it early, it's contained and due to his colostomy bag they will remove his prostate and from what I've read and been told by other survivors (working in a quarry a lot of men or their friends have had this) they've told me don't worry he will be okay. I relaxed somewhat and thought this is a journey is recovery rather than a death sentence.

However, the letter that came today explained he has moderately aggressive cancer (this I understand) at a 'high volume' and his appointment with the surgeon is to discuss the possible surgery he MAY have. What is a high volume?? I dont dare keep looking on the internet as it scares me. 

I have no experience of cancer. None. Ziltch. I can't eat, sleep or feel emotion. I'm so confused by the letter now.

Can someone explain? Also, it's going to be two weeks until his next appointment. Can cancer spread outside his prostate in 2 weeks?? He had a biopsy and MRI previously - does this mean they can tell it hasn't spread through these?? I have no clue and I feel I'm on the verge on a mental breakdown. This is a shock as we assumed it would be an enlarged prostate and end of. I'm broken. Any advice is appreciated. 

User
Posted 26 Jan 2023 at 06:52

Caroline , sorry you find yourself here. I would suggest you call the number at the top of the page and speak to one the brilliant nurses. It is sometimes easier to have a conversation rather than to and fro with messages.

Thanks Chris 

User
Posted 26 Jan 2023 at 21:50
Not much to add to the excellent replies you have already had. Just wanted to add that 'moderately aggressive' doesn't mean what it sounds like, when used to describe prostate cancer. It just means that his Gleason score was (4+3) rather than 3+3 or 3+4. a Gleason of 4+4, 4+5 or 5+5 would be described as aggressive.

I think when you hear or read the word aggressive in relation to cancer, it is easy to imagine that this cancer is running rampant all over his body as we speak. It isn't that at all, it is just a description of how distorted the positive cells looked under a microscope. Sometimes, 'aggressive' is also used to describe how high the PSA is and the staging (where the cancer is situated in the prostate). T2 is not usually considered to be aggressive in this sense.

The 'may' be suitable for RP is a sensible thing to add to the letter. Not all men are suitable for or want surgery so it would not be helpful if the letter implied that this was definitely his treatment path. His colostomy may impact on that decision; scar tissue might mean he would not be suitable for keyhole surgery and would need to have open surgery instead (not a deal breaker at all though) or the hospital may advise that RP is the best option because the colostomy would affect radiotherapy. No point guessing until you have all the facts.

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

User
Posted 26 Jan 2023 at 09:51
I agree with Colwickchris. When I have spoken to the Prostate Cancer UK nurses, they have been very patient, answered my questions and have explained things clearly. They should be able to put your mind at rest. Generally, prostate cancer grows and spreads slowly. When I was waiting for my final diagnosis and for treatment to start, a nurse told me 'we could delay things by 6 months and it would make no difference'. Best of luck,

Hermit

User
Posted 26 Jan 2023 at 17:40

Hi Caroline,

It is so normal to go into complete panic mode at this stage. You sound just exactly as I was when waiting for my husbands diagnosis. 

All the info is on my profile if you’re interested but he was diagnosed with spread outside the prostate. He had the prostatectomy just over 12 months ago and he’s been doing great. His psa has been undetectable since, although we know this could change for us at any point.

When your dad has a proper plan in place and you know more it will definitely make things a bit easier. 

Best of luck you and your dad x

User
Posted 26 Jan 2023 at 19:09
All normal reactions , same as you I looked on net but it gets all muddled the information , best stay on this site and NHS site .
User
Posted 26 Jan 2023 at 19:12

Thank you Elaine. This response means the world to me, I really appreciate the time you've taken to respond. 

I'm glad your husband has recovered well, it's wonderful to hear good news stories. 

User
Posted 26 Jan 2023 at 21:15

Caroline,

Hi and welcome,   Weird thing to say to welcome you to someplace like this.

My experience is ongoing but  as others have already said the diagnosis period is so so stressful.
it was only a week ago that I had my meeting with oncologist who was very kind and clear sharing scans and explaining my diagnosis.
This week my attitude and spirit has lifted significantly and I don’t really know why but I feel it is because I now know my situation but more importantly that I am on a curative treatment plan…… Key word being curative.

I would encourage you to have patience and faith the NHS know what they are doing

N,

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User
Posted 26 Jan 2023 at 06:52

Caroline , sorry you find yourself here. I would suggest you call the number at the top of the page and speak to one the brilliant nurses. It is sometimes easier to have a conversation rather than to and fro with messages.

Thanks Chris 

User
Posted 26 Jan 2023 at 09:51
I agree with Colwickchris. When I have spoken to the Prostate Cancer UK nurses, they have been very patient, answered my questions and have explained things clearly. They should be able to put your mind at rest. Generally, prostate cancer grows and spreads slowly. When I was waiting for my final diagnosis and for treatment to start, a nurse told me 'we could delay things by 6 months and it would make no difference'. Best of luck,

Hermit

User
Posted 26 Jan 2023 at 12:12
The better part of this assuming T2 is correct, (one can never be absolutely certain at this point), means that regardless of high volume (a lot of it) or Gleason score, it is believed to be contained within the Prostate. So if that is the case it should be possible to remove all the cancer along with the Prostate. However due to Dad's other complication, RT may be an alternative or used as an adjunct if they find when they open him up that the cancer is beyond where they thought. Don't panic, on the admittedly sparse information you have given, Dad's chances of treatment being successful look good. But it is neither we nor the nurses here that can give specific information and it is Dad's clinicians that are the ones to speak with or a specialist nurse if Dad has been appointed one by his hospital who would have more access to histology, test, scans and his Consultants.
Barry
User
Posted 26 Jan 2023 at 14:58

Thank you so much, this has all really helped me calm down and look at it realistically. 

I keep trying to get into the frame of mind of what will be, will be but sometimes it's a struggle. 

User
Posted 26 Jan 2023 at 17:40

Hi Caroline,

It is so normal to go into complete panic mode at this stage. You sound just exactly as I was when waiting for my husbands diagnosis. 

All the info is on my profile if you’re interested but he was diagnosed with spread outside the prostate. He had the prostatectomy just over 12 months ago and he’s been doing great. His psa has been undetectable since, although we know this could change for us at any point.

When your dad has a proper plan in place and you know more it will definitely make things a bit easier. 

Best of luck you and your dad x

User
Posted 26 Jan 2023 at 19:09
All normal reactions , same as you I looked on net but it gets all muddled the information , best stay on this site and NHS site .
User
Posted 26 Jan 2023 at 19:12

Thank you Elaine. This response means the world to me, I really appreciate the time you've taken to respond. 

I'm glad your husband has recovered well, it's wonderful to hear good news stories. 

User
Posted 26 Jan 2023 at 21:15

Caroline,

Hi and welcome,   Weird thing to say to welcome you to someplace like this.

My experience is ongoing but  as others have already said the diagnosis period is so so stressful.
it was only a week ago that I had my meeting with oncologist who was very kind and clear sharing scans and explaining my diagnosis.
This week my attitude and spirit has lifted significantly and I don’t really know why but I feel it is because I now know my situation but more importantly that I am on a curative treatment plan…… Key word being curative.

I would encourage you to have patience and faith the NHS know what they are doing

N,

User
Posted 26 Jan 2023 at 21:50
Not much to add to the excellent replies you have already had. Just wanted to add that 'moderately aggressive' doesn't mean what it sounds like, when used to describe prostate cancer. It just means that his Gleason score was (4+3) rather than 3+3 or 3+4. a Gleason of 4+4, 4+5 or 5+5 would be described as aggressive.

I think when you hear or read the word aggressive in relation to cancer, it is easy to imagine that this cancer is running rampant all over his body as we speak. It isn't that at all, it is just a description of how distorted the positive cells looked under a microscope. Sometimes, 'aggressive' is also used to describe how high the PSA is and the staging (where the cancer is situated in the prostate). T2 is not usually considered to be aggressive in this sense.

The 'may' be suitable for RP is a sensible thing to add to the letter. Not all men are suitable for or want surgery so it would not be helpful if the letter implied that this was definitely his treatment path. His colostomy may impact on that decision; scar tissue might mean he would not be suitable for keyhole surgery and would need to have open surgery instead (not a deal breaker at all though) or the hospital may advise that RP is the best option because the colostomy would affect radiotherapy. No point guessing until you have all the facts.

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

User
Posted 26 Jan 2023 at 22:09

Lyn

Your post was spot on

kind and informative 

well done you 

User
Posted 29 Jan 2023 at 22:29

Hi Caroline. Sorry you find yourself here. It is such a worrying time especially if you are not familiar with these medical terms. As lynn has said not all men are suitable for surgery and both surgery and HT/RT should be explored fully for your dad before making a decision. Have a look at my bio. My husband is 1 year from dx and coming up to a year since his RP. One step at a time.  Once decisions are made and you have a plan you will feel more in control. The nurses on this site are fabulous. Give them a call. This site has been invaluable for us and offers much needed support. No question is a silly question. Best wishes x

 
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