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So scared for bad news and cancer has spread

User
Posted 17 Sep 2019 at 19:30

Hi everyone I’m new to this and looking for some encouragement. -i  am having a hospital meeting with my 56 year old husband tomorrow and am so scared. He’s had a positive biopsy and has been given a Gleason score of 4+4 ( I know that is not good and means likely to grow at a moderate rate) he’s been booked in for a bone scan and  I’m so scared that it’s spread to other organs and that there will be no hope. I’m so worried for the future with two teenagers and elderly parents and don’t want to stress out my husband anymore than necessary. Any advice welcome. 

User
Posted 17 Sep 2019 at 19:39
The Gleason score is important but in term of obtaining a durable remission the staging is equally (maybe more so) important. Do you have an indicative staging yet? What was his PSA?

The bone scan is normal routine BTW and will help with the staging.

User
Posted 17 Sep 2019 at 20:07

It is only after all scans/tests have been done and the patient's case reviewed by a Multi-disciplinary team that a full diagnosis is made and relayed to the patient along with treatment options that may be open to him. This may involve a meeting with a surgeon and another with an oncologist.

Try not to panic! There are treatments for the various stages of PCa even where it has spread and hubby could live for many years.

I suggest you download or obtain a copy of the 'Toolkit' as here https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880


This  provides a lot of useful information about the disease and pros and cons of various treatments.

Edited by member 17 Sep 2019 at 20:08  | Reason: To highlight link

Barry
User
Posted 18 Sep 2019 at 20:22
Hi,

Waiting is always the most anxious and worrying part. I assume that bone and CT scan would follow the dx. Its easier if the both of you can discuss things between yourselves before and after results so you know what each are thinking. If you don’t talk about it you both worry about how it is affecting each other and things can spiral. I was dx almost 5;years and we didn’t tell our girls til last month, when they would notice I was spending more time at home. Even that is just prostrate disease, cancer not mentioned. Once you know what treatment is involved hopefully gets easier. I was likewise your OH and didn’t want to believe what was happening.

Good luck

Steven

User
Posted 22 Sep 2019 at 16:19

 I understand your worry - we are kind of at the same stage. This forum is a great help for information and support.

User
Posted 23 Sep 2019 at 16:52

Try to enjoy the time with your friends. We’re off to Mexico on Saturday- hubby has biopsy on the Monday we get back. We are determined to enjoy our holiday - as he says ‘what will be will be’ . 

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User
Posted 17 Sep 2019 at 19:39
The Gleason score is important but in term of obtaining a durable remission the staging is equally (maybe more so) important. Do you have an indicative staging yet? What was his PSA?

The bone scan is normal routine BTW and will help with the staging.

User
Posted 17 Sep 2019 at 20:07

It is only after all scans/tests have been done and the patient's case reviewed by a Multi-disciplinary team that a full diagnosis is made and relayed to the patient along with treatment options that may be open to him. This may involve a meeting with a surgeon and another with an oncologist.

Try not to panic! There are treatments for the various stages of PCa even where it has spread and hubby could live for many years.

I suggest you download or obtain a copy of the 'Toolkit' as here https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880


This  provides a lot of useful information about the disease and pros and cons of various treatments.

Edited by member 17 Sep 2019 at 20:08  | Reason: To highlight link

Barry
User
Posted 17 Sep 2019 at 20:39

Thank you - I’ve already ordered a couple of booklets for myself and my husband from this site but will look again. 

User
Posted 17 Sep 2019 at 20:45

Thank you - I’m not sure about his PSA as he’s been kind of burying his head in the sand and thinking everything will be fine and trying not to worry me with the details -  Whereas I’m more of a ‘glass is half empty’ mentality.  It’s the waiting that is so scary. 

User
Posted 18 Sep 2019 at 20:22
Hi,

Waiting is always the most anxious and worrying part. I assume that bone and CT scan would follow the dx. Its easier if the both of you can discuss things between yourselves before and after results so you know what each are thinking. If you don’t talk about it you both worry about how it is affecting each other and things can spiral. I was dx almost 5;years and we didn’t tell our girls til last month, when they would notice I was spending more time at home. Even that is just prostrate disease, cancer not mentioned. Once you know what treatment is involved hopefully gets easier. I was likewise your OH and didn’t want to believe what was happening.

Good luck

Steven

User
Posted 22 Sep 2019 at 16:19

 I understand your worry - we are kind of at the same stage. This forum is a great help for information and support.

User
Posted 23 Sep 2019 at 11:31
It’s like being in ‘no man’s land’ awaiting the next stage and trying to get on with normal life. My husband had his bone scan on Friday and they had a local case meeting that afternoon with the area case meeting next Friday. We’re due to go away with friends this weekend and still waiting for bone scan results is putting a real damper on what should be a lovely time. I know there are people in much worse positions but it’s so hard.

Sorry for the moan. 🥺

User
Posted 23 Sep 2019 at 16:52

Try to enjoy the time with your friends. We’re off to Mexico on Saturday- hubby has biopsy on the Monday we get back. We are determined to enjoy our holiday - as he says ‘what will be will be’ . 

 
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