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My husband needs further treatment

User
Posted 02 Aug 2019 at 17:46

Hi there,

This is my first time on this forum. My husband had a radical prostatectomy in January 2019. ( his scores before op were Gleason 7 - 4+3, MRI T2c) last PSA before Op was 11. No symptoms, found by a charity PSA test.

Post op, pathology was T3a (so locally advanced as we understand it) and PSA 0.05. Next PSA was 0.9 and now at 0.22 (apologies, original post said  2.2)  ok in himself. Surgeon said was big bulky tumour with lot of cancer, no seminal visical invasion, so no T3b.

Blood taken today for another PSA, kidney and liver function test before a scan, then to consider radiotherapy. 

Feeling scared and worried. He is 57. 

Edited by member 04 Aug 2019 at 12:30  | Reason: I made a mistake in the PSA numbers

User
Posted 04 Aug 2019 at 12:43

Many thanks. They mentioned a scan, I will ask about PET scan. I told my husband about PSMA PET scan and he is looking at this - thinks you are correct in that he can only see it available at private hospitals/clinics.

User
Posted 04 Aug 2019 at 13:10
0.22 puts you in a very different situation to 2 2 and means that much of my reply above is irrelevant. At 0.22 the chance of spotting anything is very low even with the best scans. On the up side, a PSA of 0.22 is much more indicative of leftovers in the prostate bed so salvage RT has a better chance of working.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2020 at 22:40
It certainly looks as if there’s still cancer there, but the consultant probably won’t be in any desperate rush for treatment, because with that low a PSA the cancer may very well not show up on scans. My guess would be that he’ll go back onto HT and his PSA will be monitored with 3-monthly tests. The HT will, with luck, control the cancer for a significant time.

Might be worth ringing the consultant’s secretary and trying to arrange another appointment ASAP.

Chris

User
Posted 13 Nov 2020 at 23:23

There is obviously still cancer there, but unlikely to be in the prostate bed (because it's unlikely to be in a target area of the radiotherapy).

I think you need to push for an urgent oncology appointment, with a doubling time of under 2 months.

I would try to get a PSMA PET scan done to find it (before starting hormone therapy). If it's just a few small points, it may still be treatable with something like SBRT/Cyberknife (fine beamed radiotherapy), with a curative intent, and I wouldn't want to miss that opportunity.

If he does go onto hormone therapy without a scan, he will meet the criteria for newly approved Darolutamide (PSA of at least 2 and doubling time under 10 months and no known mets) by January and should ask about having that too.

If a scan finds mets which can't be treated, he would probably be eligible for Enzalutamide under the coronavirus rules just at the moment (but not in normal circumsances).

Edited by member 13 Nov 2020 at 23:31  | Reason: Not specified

User
Posted 13 Nov 2020 at 23:32

Flowergirl

In a similar situation but my PSA is rising a lot slower. I have asked about the better tracer scans but my oncologist says not until the PSA reaches 2,4,or possibly higher. My onco nurse told me I would get a tracer type scan at 1. 

Interesting info from Andy although I do not want to go down the HT route.

Thanks Chris

 

User
Posted 14 Nov 2020 at 01:01
I thought Darolutimide had only been approved for castrate resistant men? Also, disappointing that having Daro will rule out the option of enza or Abi, and vice versa.

Sorry to see the latest PSA result Flowergirl - I agree with the others that you need to get on the phone to the oncologist’s secretary or the allocated clinical nurse specialist (if you have one) and push for an appointment.

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

User
Posted 15 Nov 2020 at 16:13
The drugs suggested above are probably not relevant to your OH Flowergirl
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 02 Aug 2019 at 22:36
It is devastating to have a recurrence after treatment that you hoped was going to eradicate the cancer, particularly if he wasn’t warned beforehand that this could happen. Prior to the op, had he been told that he would need further treatment? Some surgeons wouldn’t operate on a T3 while others think it is worth trying. Sometimes men with T3 go into the op knowing that they will also be having RT afterwards.

Whether or not radiotherapy is the right way to go depends on his post-op pathology. Did they say he had positive margins or suggest that they might not have got all of the tumour out? If so, radiotherapy to the prostate bed is sensible and has a good chance of success. If his pathology was good, his high PSA might suggest that the left-behind cancer cells are further afield and RT may not get to them.

When you go for an appointment with an oncologist, ask whether he is also going to need hormone treatment.

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

User
Posted 03 Aug 2019 at 01:07

With a PSA of 2.2, it's worth asking for a PET scan, which has a good chance of finding exactly where it is.

In the case of a choline PET scan, which is what you are most likely to get on the NHS, I believe this should be done before starting hormone therapy. For a PSMA PET scan which is slightly better (around 5% more likely to find the cancer but usually not available on the NHS), I don't think it matters if you've started hormone therapy.

User
Posted 03 Aug 2019 at 07:27
What was his immediate. Post op psa. Maybe click my picture and read. My profile

If life gives you lemons , then make lemonade

User
Posted 04 Aug 2019 at 12:41

Many thanks for your speedy reply. I have corrected my first post. Only told T3 on post op pathology. When discussing options on his diagnosis, the hospital said their preference was surgery as radiotherapy still an option if needed. So not mentioned as possible/likely beforehand.

your point on positive margins is spot on. The surgeon said the pathology showed “some cancer cells in contact with the ink, but this could be artefact due to specimen processing. But edges on right side of prostate were clear” He mentioned that if PSA rose to 0.2 then RT to prostate bed should be considered.

thanks, will ask about hormone treatment as not mentioned to date.

User
Posted 04 Aug 2019 at 12:43

Many thanks. They mentioned a scan, I will ask about PET scan. I told my husband about PSMA PET scan and he is looking at this - thinks you are correct in that he can only see it available at private hospitals/clinics.

User
Posted 04 Aug 2019 at 12:45

Thanks, will read your profile. Sorry I got PSA numbers wrong, post op PSA was 0.05, next 0.9 and now 0.22.

User
Posted 04 Aug 2019 at 13:06
0 09?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Aug 2019 at 13:10
0.22 puts you in a very different situation to 2 2 and means that much of my reply above is irrelevant. At 0.22 the chance of spotting anything is very low even with the best scans. On the up side, a PSA of 0.22 is much more indicative of leftovers in the prostate bed so salvage RT has a better chance of working.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Aug 2019 at 14:06

Thanks. Sounds like we are aiming for RT in the prostate bed and perhaps the scan is to check no where else? A bit worrying that the scan may not show up cancer, but having read the profiles of some other replies today think you are spot on, and even the PET PSMA ones appear not to show cancer that Drs know is there.....

User
Posted 04 Aug 2019 at 15:00
I am sorry to read that your old man has had biochemical recurrence, as I have two friends who had prostatectomies at the same time as me within the last year, and despite their massive expenditure, costing £££££, with the best British private surgeons and surgery, and they both have suffered the same.

One, had very slight increasing PSA, under 0.1, but an expensive PET-PSMA found nothing to aim at. Nevertheless, they are blasting him with thirty-odd fractions of RT over the whole prostate bed.

Hopefully, salvage RT will knock it on the head in your man’s case.

Best of luck!

Cheers, John.

User
Posted 04 Aug 2019 at 15:35
My OH had a poor pathology with upgrade from T1 to T3, bladder involvement, seminal vesicle involvement. He was reluctant to have adjuvant RT so the PSA was monitored; like your husband, it started low and climbed steadily which is typical of prostate bed cells left behind so he had the RT/HT 2 years later. That was 7 years ago and he is tootling along with no issues and a steady PSA around 0.1.

My dad also has biochemical recurrence but has declined RT - he is 20 years post op and his doubling time is around 2 years so he can afford to watch and wait.

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

User
Posted 13 Nov 2020 at 19:24

Update on my husband’s journey 

After having savage RT to the prostate bed in Oct 2019 

Feb 2020 PSA 0.2

May 2020 PSA 0.16

July 2020 PSA 0.24

Nov 2020 PSA 1.13

November consultant cancelled due to COVID ( at hospital)

So after advice please and support ?

Thanks x

User
Posted 13 Nov 2020 at 22:40
It certainly looks as if there’s still cancer there, but the consultant probably won’t be in any desperate rush for treatment, because with that low a PSA the cancer may very well not show up on scans. My guess would be that he’ll go back onto HT and his PSA will be monitored with 3-monthly tests. The HT will, with luck, control the cancer for a significant time.

Might be worth ringing the consultant’s secretary and trying to arrange another appointment ASAP.

Chris

User
Posted 13 Nov 2020 at 23:23

There is obviously still cancer there, but unlikely to be in the prostate bed (because it's unlikely to be in a target area of the radiotherapy).

I think you need to push for an urgent oncology appointment, with a doubling time of under 2 months.

I would try to get a PSMA PET scan done to find it (before starting hormone therapy). If it's just a few small points, it may still be treatable with something like SBRT/Cyberknife (fine beamed radiotherapy), with a curative intent, and I wouldn't want to miss that opportunity.

If he does go onto hormone therapy without a scan, he will meet the criteria for newly approved Darolutamide (PSA of at least 2 and doubling time under 10 months and no known mets) by January and should ask about having that too.

If a scan finds mets which can't be treated, he would probably be eligible for Enzalutamide under the coronavirus rules just at the moment (but not in normal circumsances).

Edited by member 13 Nov 2020 at 23:31  | Reason: Not specified

User
Posted 13 Nov 2020 at 23:32

Flowergirl

In a similar situation but my PSA is rising a lot slower. I have asked about the better tracer scans but my oncologist says not until the PSA reaches 2,4,or possibly higher. My onco nurse told me I would get a tracer type scan at 1. 

Interesting info from Andy although I do not want to go down the HT route.

Thanks Chris

 

User
Posted 14 Nov 2020 at 01:01
I thought Darolutimide had only been approved for castrate resistant men? Also, disappointing that having Daro will rule out the option of enza or Abi, and vice versa.

Sorry to see the latest PSA result Flowergirl - I agree with the others that you need to get on the phone to the oncologist’s secretary or the allocated clinical nurse specialist (if you have one) and push for an appointment.

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

User
Posted 14 Nov 2020 at 01:47

Originally Posted by: Online Community Member
I thought Darolutimide had only been approved for castrate resistant men?

Yes, you're right. Half of me was thinking his PSA was rising on HT, but it's not.

User
Posted 15 Nov 2020 at 13:49
Many thanks all. Hubby will be on the phone tomorrow (COVID allowing, hope he gets a reply)

Will be asking about a scan and ‘treatment’ after more than doubling PSA in 3 months. Thanks for the names of drugs, so he could read up before he calls. Also about considering any scan, before going onto HT, if that is the first suggestion.

Keep safe x

User
Posted 15 Nov 2020 at 16:13
The drugs suggested above are probably not relevant to your OH Flowergirl
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Mar 2021 at 15:42

Hi all,

hope you are getting ready for a summer without COVID.

Hubbys PSA continued doubling and has now had bone and CT scans in Jan 2021. After this the oncologist requested a PET scan (Feb 21) as there was a hotspot showing in his shoulder. (But “no lymph node involvement, no nodes, no mets’ following bone and CT scans.)

Telephone appt with oncologist today, hubby is now stage 4, PSA 6.95, but with ‘one site involvement’. He is to start HT now, and RT to the shoulder ‘hot spot’. Chemo was spoken about (6 cycles of Docetaxel) but not recommended by the oncologist. He has also made referral to orthopaedics to consider pinning to stabilise and protect the bone. Has anyone had or been offered this.

Secondly, we are now wondering if we should have said yes to chemo? Would be great to hear your views.

xx

 

 

 

Edited by member 12 Mar 2021 at 17:22  | Reason: Not specified

User
Posted 12 Mar 2021 at 16:47
Lots of hospitals are steering clear of chemo right now because of Covid but I am surprised that they didn't suggest enzalutimide instead? A short course of RT to the shoulder is a sensible plan, usually effective and very little in terms of side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Mar 2021 at 10:03

Hi Flower girl.

I'm afraid I can't offer much advice on this but would have thought radiotherapy to the hotspot would have been a good idea, as Lyn says. Could your husband discuss that maybe? 

All the best, stay strong xx

'Sorrow looks back, worry looks around, but faith looks up'
 
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