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User
Posted 14 Mar 2022 at 22:29

Hi

It's been a few months.... Returned to work after RP in July 2021, PSA undectable for several months. PSA has gone from undetectable to 0.2 in several weeks. My next blood test is on the 30th March.

Just when I had become comfortable with the prospect of a lengthy remission and even being cured. 

My Gleason score was 8 on the biopsy and my tumour was bigger than originally thought and had breached the prostate.

So, always that niggling doubt at the back of my mind.

As I always say - life is never simple!!

Any information on my likely treatment - hormone therapy, radiation therapy, common side affects - would be very useful and much appreciated.

Trying to remain positive and keep on top of my ongoing commitments - work, carer for my wife, working towards semi retirement and getting work done on the house. 

I hope this finds you OK and positive. 

 

User
Posted 21 Mar 2022 at 20:39

Hi

Has anyone experience of salvage radio therapy, with or without hormone therapy?

It would be good to have a better idea as to what is involved in the therapy and likely side effects.

Many thanks in advance. 

Mike 

 

User
Posted 05 Apr 2022 at 22:41
You have hit 0.2 to have a good chance of remission you should be having RT now..
User
Posted 05 Apr 2022 at 22:58

Come on, don't panic. Apparently you've gone through a Biochemical Recurrence (BR), but the fact of having detected it at that low  PSA ( 0.2) results to be a positive point.

I guess you'll be offered hormone therapy and radiotherapy, as my husband has. I'm sure you'll do ok. In addition, as my hub's oncologist says, more weapons are available these days in case it didn't work👍.

Good luck.

 

User
Posted 05 Apr 2022 at 23:29

Originally Posted by: Online Community Member
No results yet, consultant had also sent a letter asking me to book another test in May for a consultation in June!!

I am with franci - this appears to be unacceptable. Can you just clarify though - is it the urologist that has sent a letter saying they will see you in June or the oncologist? If the urologist, they are delaying / in denial and should refer you to oncology now without any more faffing about. Perhaps phone the urologist's secretary or your urology nurse (if you have one) and just tell them that you want to be referred to oncology now as NHS guidelines are clear that you are in biochemical recurrence and you need to see an appropriate specialist. 

If it is the oncologist who has said they will see you in June, then at least you are in the right hands. 

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

User
Posted 06 Apr 2022 at 00:02

PJ.

All pre covid but, I was referred back to my urology surgeon / consultant at 0.1, all that meant was I had more frequent PSA checks. As i was heading towards 0.2 my surgeon consultant started the ball rolling and got radiology and oncology involved, at 0.27 I started salvage RT. 

Thanks Chris

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User
Posted 15 Mar 2022 at 00:16
I hope that your urologist has already made the referral to oncology and hasn't suggested "waiting to see what the next reading is"?

As the post-op pathology was that the tumour had already breached the prostate, and you did go down to undetectable for a while post-op, the likelihood is that this is cancer cells left behind in the prostate bed or in pelvic lymph nodes. My assumption is therefore that you will be advised to have salvage radiotherapy to the prostate bed - most likely in combination with HT. Did they take any lymph nodes during the op? Does your pathology letter say anything about the nodes?

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

User
Posted 15 Mar 2022 at 21:01

Hi Lynn 

Many thanks for the post. 

All sounds similar to what I have seen thinking... Which is reassuring in that I am not over thinking this. 

Thy did take some lymph nodes out and pathology was negative for cancer. 

It was definitely not sparing surgery!!

I have a blood test on the 30th of March, so not a long wait... I will be pushing for information and an appointment very soon after.

Thanks again.

Mike 

User
Posted 17 Mar 2022 at 16:14

Hi Mike,

I looked at your previous post and a useful reply beneath it about how they rounded up the psa results.   Could it be that your 0.2 is actually lower.  I would have thought they'd use 2 decimals above 0.1 as they must need to know with more accuracy than that but perhaps not.

All the best, 
Peter

User
Posted 18 Mar 2022 at 08:20

Thanks Peter. 

My next test is 30th March and that bring more clarity... My telephone discussion with the consultant was along the lines of a probable relapse.

We will know soon... Fingers crossed 🤞

Mike 

User
Posted 21 Mar 2022 at 20:39

Hi

Has anyone experience of salvage radio therapy, with or without hormone therapy?

It would be good to have a better idea as to what is involved in the therapy and likely side effects.

Many thanks in advance. 

Mike 

 

User
Posted 05 Apr 2022 at 22:28

Following on from my earlier email. 

I've had the PSA test on 30th March. No results yet, consultant had also sent a letter asking me to book another test in May for a consultation in June!!

I booked test for 29th April as May completely booked out. 

I am, I feel, justified in thinking this is taking too long. I understand the desire for the second test. 

Is this time period too long, are they wanting to find out more about the aggressiveness of the recurring cancer / doubling time of the PSA. 

Any comments welcome... Might there be a delay in treatment due to Covid backlog? 

How long a wait is normal in non Covid circumstances. 

Again, any comments, knowledge or opinions very welcome. 

Hope you are all doing well. 

Thanks

Mike 

 

 

User
Posted 05 Apr 2022 at 22:41
You have hit 0.2 to have a good chance of remission you should be having RT now..
User
Posted 05 Apr 2022 at 22:58

Come on, don't panic. Apparently you've gone through a Biochemical Recurrence (BR), but the fact of having detected it at that low  PSA ( 0.2) results to be a positive point.

I guess you'll be offered hormone therapy and radiotherapy, as my husband has. I'm sure you'll do ok. In addition, as my hub's oncologist says, more weapons are available these days in case it didn't work👍.

Good luck.

 

User
Posted 05 Apr 2022 at 23:29

Originally Posted by: Online Community Member
No results yet, consultant had also sent a letter asking me to book another test in May for a consultation in June!!

I am with franci - this appears to be unacceptable. Can you just clarify though - is it the urologist that has sent a letter saying they will see you in June or the oncologist? If the urologist, they are delaying / in denial and should refer you to oncology now without any more faffing about. Perhaps phone the urologist's secretary or your urology nurse (if you have one) and just tell them that you want to be referred to oncology now as NHS guidelines are clear that you are in biochemical recurrence and you need to see an appropriate specialist. 

If it is the oncologist who has said they will see you in June, then at least you are in the right hands. 

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

User
Posted 06 Apr 2022 at 00:02

PJ.

All pre covid but, I was referred back to my urology surgeon / consultant at 0.1, all that meant was I had more frequent PSA checks. As i was heading towards 0.2 my surgeon consultant started the ball rolling and got radiology and oncology involved, at 0.27 I started salvage RT. 

Thanks Chris

User
Posted 06 Apr 2022 at 02:28

It's the Urologist who said he would see me, not an Oncologist. 

So, I guess I should chase latest test results and ask for a referral to the side effects. 

Thank you Lynn 

User
Posted 21 Apr 2022 at 22:03

Hi 

Update on possible relapse... March PSA still 0.2.

Urologist wants another psa test in June. No referral to an Oncologist as yet. 

I have emailed his secretary asking for clarification as to whether I will be referred and what he is watching or waiting for.

I highlighted that my psa was never particularly high, yet my gleason score was aggressive 4+4 and the tumor larger than expected etc. And that if salvage radiation treatment is to be carried out then the sooner the better. 

Hopefully I will have a reply soon.

Any comments welcome.

Mike 

User
Posted 21 Apr 2022 at 22:24

In case this information may help, my husband's just gone through a similar situation. When his PSA level raised to 0.30, four years after RP the uro offered a PSMA PET -out of our pocket as the private insurance did not cover this test yet-. Two spots were seen in his pelvis. At that very moment the uro send my hub to the onco for a decision. 

Good luck.

 

User
Posted 21 Apr 2022 at 22:36

Thanks Iola. 

Is it common practice for people to pay for scans privately?

Was there any reason given as to why they did not offer scan on the NHS?

At least it's an alternative to doing nothing!! 

Hope your husband is doing well. Its must be both supportive and a comfort that you take an interest in treatment. 

Take care

 

User
Posted 21 Apr 2022 at 23:14

Paco (my hub) has always been treated for his prostate issue by the insurance doctors,  just because we also have it available and it works faster. Not for the rest of health matters.

This test is extremely expensive due to contrast medium, I hope over time it will be cheaper, but time is gold when it comes to dealing with cancer. Few insurance companies cover it so far. As for our national health care, I'm afraid they're not willing to give it easily adducing that this cancer growth is not that fast, it depends on the patient's age, blablabla. So, we took it and we're glad we did as it's the only image test that can tell specific prostate cells from other tissue yet at a low PSA level.

Tomorrow he's having another protocol MRI and blood work in other to start radiotherapy.

Feel free to ask me for whatever you may want to know about the procedure.

Best.

 
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