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In limbo after RP

User
Posted 10 Jun 2020 at 08:54

Hello,

This is my first post. My husband is 6 weeks post surgery and I now feel more emotionally empty than ever. I wondered if others felt the same. The initial shock has passed, the resolve and ‘fighting spirit’ that was needed in the first few weeks is fading. The reality and worry are perhaps only just arriving now. I also feel hopelessly uninformed, with no idea about how optimistic, or otherwise I should be. Maybe there just isn’t more to know at the moment.

Also, if there is anyone else that has been in a similar situation to my other half I would be grateful to hear from you as I am trying to get my head around his treatment plan, and the pros and cons of each stage and decision.

Since he is the kind of person, like many others, that finds any contact with hospital overwhelmingly anxiety inducing, he chooses to know as little as possible, and I take the role of information gatherer. This has been difficult for us as I’ve not been able to attend hospital meetings due to Covid precautions.

He has been on HT since diagnosis, then had RP,  with plans for adjuvant RT, we don’t know when this might take place, I believe that they want him to recover first from the surgery. I’ve not found much information about other people that have had HT right away followed by the other treatments.

I’m very grateful for any replies

Jacqueline

User
Posted 10 Jun 2020 at 13:09

J

I think surgery after HT is a product of the covid situation so there may be little information about it. The anticlimax syndrome after surgery or RT is fairly common. 

Give the nurse specialists on this site a call, they are lovely people and may well put your mind at rest.

Thanks Chris

 

 

User
Posted 10 Jun 2020 at 18:18

Given he had positive surgical margins the HT will keep things under control, even shrink any remaining cancer. The HT will also make his adjuvant radiotherapy work better when it can be done.

I hope It all goes well.

 

Ido4

User
Posted 10 Jun 2020 at 23:09

Hi Bluebell,

It seems he's being treated quickly and given a good range of treatment.  That must be encouraging.

While people are being given curative treatment there is reason to be positive.

You haven't mentioned his post op PSA.  Perhaps he hasn't had a test yet.

That's the upside, the downside is the uncertainty.   Although until you have evidence, most likely via a psa test, and then from a second test, the worry might be mis-placed.

It's easy to come up with platitudes but some good advice I got from a Prostate Cancer UK nurse was that I was getting ahead of myself.  Worrying about things that hadn't been found.  I still tell myself that if something happens.

As to how the HT might have affected his surgery.  I read that a clinic gave HT before the op and when I suggested it to my urologist he said it might be because there is a longer waiting list.   So some places offer HT before the op as standard.

All the Best, Peter 

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User
Posted 10 Jun 2020 at 13:09

J

I think surgery after HT is a product of the covid situation so there may be little information about it. The anticlimax syndrome after surgery or RT is fairly common. 

Give the nurse specialists on this site a call, they are lovely people and may well put your mind at rest.

Thanks Chris

 

 

User
Posted 10 Jun 2020 at 13:49
Thank you, and others that have messaged me, it is good to be pointed in the right direction. One of my concerns is how the HT may have impacted the diagnostic scans, and even the surgery too, and the implications of this, so speaking to a nurse specialist would probably be very helpful. Thanks again.

Jacqueline

User
Posted 10 Jun 2020 at 18:18

Given he had positive surgical margins the HT will keep things under control, even shrink any remaining cancer. The HT will also make his adjuvant radiotherapy work better when it can be done.

I hope It all goes well.

 

Ido4

User
Posted 10 Jun 2020 at 23:09

Hi Bluebell,

It seems he's being treated quickly and given a good range of treatment.  That must be encouraging.

While people are being given curative treatment there is reason to be positive.

You haven't mentioned his post op PSA.  Perhaps he hasn't had a test yet.

That's the upside, the downside is the uncertainty.   Although until you have evidence, most likely via a psa test, and then from a second test, the worry might be mis-placed.

It's easy to come up with platitudes but some good advice I got from a Prostate Cancer UK nurse was that I was getting ahead of myself.  Worrying about things that hadn't been found.  I still tell myself that if something happens.

As to how the HT might have affected his surgery.  I read that a clinic gave HT before the op and when I suggested it to my urologist he said it might be because there is a longer waiting list.   So some places offer HT before the op as standard.

All the Best, Peter 

User
Posted 15 Jun 2020 at 08:22

Thank you for your reassurances. You are all quite right, talking to a nurse helps get gets my thoughts back in order, and accepting the uncertainty is a big part of this too. 
He will have a PSA test next week (8 weeks post surgery), and then there’ll be a consultation to discuss the scan results and next steps. 

 
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