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PSA raising 1 year post RP

User
Posted 18 Jun 2023 at 20:20

Hi


My husband is 54, been diagnosed in March 2022 with PC, by pure coincidence, he was suffering from indigestion for quite a while, lost weight, so i told him to ring GP and ask for full blood count, PSA came back 7.4, straight away was sent to urology for scan, then MRI, then biopsy: suggested grading was: T2C N0 MX Prostate confined, cribriform cells present. Gleason (3+4) 7.


Bone scan June everything fine


RP July 2022.


Path lab post RP:


Single Adenocarcinoma, Gleason (4+3) 7 grade group 3.


Cribriform/intraductal type architecture present 


Tumour extend to the basal margins


Tumor infiltrated arround the ejaculatory ducts


Now upgrade to PT2+ NX


PSA post RP:


Oct 2022: 0.01


Dec 2022: 0.01


Mar 2023: 0.02


Jun 2022: 0.18


Had a phone call from the urology saying that they want PSA again 6 weeks, arround 19 July 


We are having hard time now with the wait, very worried, my husband is asking himself a lot of questions:


what will happen, is it reoccurrence?


Is it in lymph nodes?


Is it in bones?


Is it in bedding?


What are next steps?


We have 2 children 13 and 9, he is extremely worried about them.


He suffered already with ED post RP specially his mental health was affected, he is worried more now what will Radio and HT do?


Any similar situation


Any advice please 


Thanks


 


 

User
Posted 20 Jun 2023 at 00:34

Thank you everyone for your reply, it is so important to find yourself not the only one in this nightmare, Elaine I will keep you posted after the 18 th of July on his 6 weeks PSA.


Hoping for the best.


Thanks everyone for the support 

User
Posted 16 Sep 2023 at 08:24
Sandra80 the cribiform found at final pathology is a concern, make sure you onco addresses that issue as part of the proposed treatment plan.
While it is good news PSA went very low post OP the rate of doubling means you need to keep on top of follow up appointments - don't let the NHS forget about you!
User
Posted 23 Oct 2023 at 20:28

Hi 


Update: 


Following PSA rise to 0.38 seen onco on the 13/10, his plan is an aggressive approach, 20 RT session to pelvis lamph node plus HT. PSMA scan said  would take time long waiting list, chances of results on PSMA minimum as onco said less than 0.40 not visible, his opinion is that recurrence probably in bedding and possibly lamph nodes.


He said any delay is not welcomed, treatment needs to start straight way, first HT injection was given on the same day.


Obviously we are very worried about the treatment the outcome, side effects on bladder and bowel, my husband is worried about his work and whether he is going to be able to work or not. I am more worried about what outcome will be after the salvation RT+HT.


RT should start on the 10/11


Any experience sharing would be much appreciated.


Thank you for all your support 


 

User
Posted 24 Oct 2023 at 08:28
Sandra, most men tolerate RT pretty well. The side-effects of the radiation are cumulative; when I had my (primary) RT I had 32 sessions over six and a half weeks. No real side-effects for the first three weeks, then a gradual increase in bowel issues and urinary irritation and urgency. Side-effects typically peak 10-14 days after the end of treatment. For me, the urinary issues sorted themselves out within a few weeks after that, but bowels didn’t achieve anything like normality for about six months. It was inconvenient, but not a “show stopper”; if I went out I took an Imodium tablet and everything was fine.

Hope all goes well,

Chris
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User
Posted 19 Jun 2023 at 09:45

Sandra, a few years ago it would be salvage RT when the PSA was around 0.2. More recently some guys are having PSMA scans before SRT, although there are circumstances where having SRT before exceeding 0.25 is recommended.


Hopefully some of the scholars will be along to explain the significance of the particular cells you mention. 


Perhaps a call to the number at the top of the page could give you some reassuring info.


Thanks Chris 

User
Posted 19 Jun 2023 at 11:51

Hi,


You have many questions, which is natural. First thing is not to panic. As Chris says, talking to the Specialist Nurses will give you access to a range of different information. There will be several folks on here that are (or have been) in similar situations - I am myself. My PSA rose steadily a year after prostatectomy and at almost exactly two years post-op I just started hormone therapy. Last Friday I started radiation treatment. So far so good and I feel fine, but its early days. If your other half wants a private chat send me a message. Our cases won’t be identical but we’ll have something in common for sure.


My PSA was undetectable (<0.01) for three consecutive tests then 0.04, 0.08, 0.10. Then it jumped to 0.2 in 28 days (different lab), then two months later is 0.06 at original lab, but thats ten days after HT started. So it can fluctuate and different labs get different results depending on equipment, test resolution, analyst, etc.


“Chippers” (Mark), 55, Cheshire.

Edited by member 24 Jul 2023 at 14:18  | Reason: Typo

User
Posted 19 Jun 2023 at 15:55

Thanks Mark and Chris for your reply, 


What  worries me is the jump in 1 year from 0.01 to 0.02 then 3 month and it was 0.18.


Mark I think yours was quite steady.


I would love to hear about other similar cases


Many thanks 


Sandra

User
Posted 19 Jun 2023 at 20:48
I would ask for a retest now rather than wait 6 weeks, that is a massive jump in 3 months and it's not beyond hope that it is a lab error.

Unfortunately there is no easy option for dealing with the stress of PSA anxiety or worrying about recurrence.

My only advice after 8 years of both is it really doesn't help or improve your outcomes and probably makes you prone to rushed treatment decisions.

So try and focus on the positives, acknowledge non of us is here forever or knows when our time will be so just make sure you are enjoying life the best you can while you have it .



User
Posted 20 Jun 2023 at 00:12

Hi Sandra,


We’re in a similar position in that my husbands PSA started to rise around 14 months after surgery. He did have a positive lymph node initially which was removed during surgery along with 13 others.


I’ve been having his psa checked every 6 weeks and these are the latest figures:


0.029(was the first rise above undetectable)


0.044


0.115


0.164


I got a shock when it more than doubled in 6 weeks but then the next one didn’t….this might be the case for your husband. It will be interesting to see what the next one is…there could be other reasons for this sharp rise 🤞🏼


It’s so hard not to worry and the waiting doesn’t get any easier. I want everything done yesterday! I’m slowly finding out it’s really not that easy with this disease though and unfortunately there are times when we have to wait and feel in limbo. We’re going away for a few weeks (been unsure whether it’s the right call) and we’re going to see where we’re up to when we return.


Really hope all will be ok and you get some answers soon x


 


 

User
Posted 20 Jun 2023 at 00:34

Thank you everyone for your reply, it is so important to find yourself not the only one in this nightmare, Elaine I will keep you posted after the 18 th of July on his 6 weeks PSA.


Hoping for the best.


Thanks everyone for the support 

User
Posted 24 Jul 2023 at 13:57

hello, i (raoul) am new in the forum and in a similar situation:


48, gleason 7 (3+4) pt2c, negative margins


my psa after surgery (rp, aug 2021) was stable about 9 months  0.01 ng/ml


then started to rise 0.02 (10 months post rp)


after 13 months  0.03 ,


0.03 again after 16 months (dec 2022)


0.05 after 19 months, 3 months after that it was 0.05 again, that was at the end of may 2023


but because my oncologist is on holiday and i was unsure i took a psa by myself in a different lab 2 weeks after the last test and it was 0.068 (panic), i tested again 0.07 in another lab from the urologist. the uro told me that testresults maybe different, but i am quite anxious now cos i have to wait till my oncologist  is back from holiday and the next meeting we have on 5th sept,  then psa will be done...


 


 


 

Edited by member 24 Jul 2023 at 13:59  | Reason: Not specified

User
Posted 24 Jul 2023 at 14:08

Firstly, don't panic. You are moving towards (if not already at) BCR (biochemical recurrence) - based on three consecutive rises or PSA>0.2.


You will be having the discussion on salvage treatment - likely at least radiation therapy which is pretty painless but carries some immediate common side effects. These are a bit unpleasant but (apparently) will pass - I'm right in the middle of them right now at 10 days after 20 fractions of treatment. There is also the potential for less common long-term effects so make sure you understand these. You might have the option to get a PSMA PET scan to detect precise location(s) of recurrence, otherwise they'll just use the educated guess approach and target the prostate bed.


Depending on your overall risk profile they may bolt on some hormone therapy - something else to research and understand if that enters the conversation.


Check my bio if interested. There are plenty of others on the forum that have had salvage treatment and have shared their various experiences and progress since.

User
Posted 24 Jul 2023 at 22:59
Raoul you are not yet at the BCR level as all your readings are all less than 0.1.

Readings less than 3 months apart apart especially from different labs are probably a waste of time. Readings that are 0.002 apart are the same for all intents and purposes.

So I would suggest you give yourself a break and try to stop worrying about PSA until your next official test and appointment.

User
Posted 16 Sep 2023 at 01:38

Hi everyone little update today PSA results were concerning: 0.38.


Referred to Consultant, now waiting for appointment.

User
Posted 16 Sep 2023 at 03:12

Sorry to hear this Sandra. As Chris said in a much earlier post it is either salvage RT or PSMA scan. It is either a few cells left behind in the prostate bed, or it is distant mets. A PSMA scan may be able to prove one way or the other. The problem with the scan is it has very limited availability and the radioactive tracer is hard to produce so waiting for a scan may delay things.


A rise from a low number is often just in the prostate bed. The rise seems to have a doubling time of three months that is uncomfortably fast.


 

Dave

User
Posted 16 Sep 2023 at 08:24
Sandra80 the cribiform found at final pathology is a concern, make sure you onco addresses that issue as part of the proposed treatment plan.
While it is good news PSA went very low post OP the rate of doubling means you need to keep on top of follow up appointments - don't let the NHS forget about you!
User
Posted 16 Sep 2023 at 10:18

Thank you Dave for your reply, you absolutely right the doubling time is concerning, we did not expect this.


In regards to PSMA, would you think if we go abroad and have this done, NHS would take this in consideration, as in the here in the UK the price for it is unaffordable if we privet, to gain time.


Thanks 


Sandra

User
Posted 16 Sep 2023 at 10:26

You are absolutely right franc, it has always been a concern for us, we keeping alon top of all the appointment, but you may know how NHS is, although it is a brilliant service but quite stretched.


In regards to oncologist what do you think he should be looking at with cribriform cells.


We are waiting for an appointment with the consultant, I presume like Dave said it would be either PSMA and RT.


PSMA is very expensive and we are thinking of going abroad and doing this.


What else in you experience should be looked at with cribriform.


Many thanks


Sandra

User
Posted 16 Sep 2023 at 10:41

I don't know too much about NHS bureaucracy and foreign scans. I would think the NHS would be happy to use all the information available. But if the scan is in an electronic file and the software is incompatible it may not work, or if it it written in a foreign language it could have issues and be misinterpreted.


Another issue is the unreliability of the isotope, I think in this country people often have the scan cancelled at a couple of hours notice, so you may have a few trips to the foreign country.


The following is only guesswork:


If you can get the PSMA scan I can see three possible outcomes: only in the bed, one or two mets, many mets. I would assume the three treatments would be SRT to bed, SRT to bed and target mets, No SRT just HT and chemo. I think the scan will delay things by months I think I would just accept SRT to the bed, hope for the best and if the worst happens deal with it later.


 

Dave

User
Posted 16 Sep 2023 at 10:47

Yes, the NHS would use your PSMA imaging if you had it done privately. There are some consultants who are skeptical of it, usually in centres which don't have PSMA scanning capability so they're not familiar with using it.


Make sure you obtain the full images and radiologist report to bring back, usually on a DVD, but I have noticed some private services upload them to the cloud now and you get a password to access them that way. Your oncologist will want the radiologist report, and not just the raw images to try and understand themselves, as the images are normally interpreted by a specialist radiologist.

User
Posted 16 Sep 2023 at 12:25

I have had 2 PSMA scans done ,one NHS and one through my insurance. My second scan picked up a new tumor and residual cancer in the first tumor. My local genesis centre could not treat both areas in the same session and the option was a 220 mile road trip to be treated at another genesis centre. 


It is not just the oncologist's experience but presumably it is also the experience of the physicist who actually writes the treatment plan.


My NHS oncologist is the same guy I see privately, he did say I could not keep switching between NHS and private.


Thanks Chris 

User
Posted 17 Sep 2023 at 18:50
Re the cribiform it can be indicative of a risk for intraductal prostate cancer, as you have had a RP the whole prostate should have been examined and assessed, just make sure they only found adenocarcinoma.

A fast doubling time usually means more radical treatment is required eg chemo and 2nd line HT + whole pelvis RT - Ignore Dave's suggestion Prostate bed only! Your Onco is the one who should be advising the extent of the treatment required.
User
Posted 18 Sep 2023 at 12:32

Hi Franc


Thanks for your answers and reply, I just went through the report and you are right it does mention: 


" Cribriform/intraductal type architecture present"


What it means then, I thought it was just cribriform present


Any advice on this please 


Thanks 


Sandra

User
Posted 19 Sep 2023 at 08:06

It means the treatment may need to be more aggressive. Intra ductal is a rarer form of prostate cancer.


You need a thorough chat with the onco to understand all the options. I would be asking about suitable scans and what the target if any salvage radiotherapy would be. It is probably worth asking what experience the onco has with this type of PC too. If the answer is "not much" seek a second opinion on the suggested treatment.

Edited by member 19 Sep 2023 at 22:54  | Reason: Not specified

User
Posted 19 Sep 2023 at 21:00

Hi Franc


Thanks for you reply, thank you to everyone one replying, you can not imagine how your opinions and experiences are valuable.


Franc in your last phrase you said "option" did u mean it or did mean opinion?


Thanks


Sandra 

User
Posted 19 Sep 2023 at 22:54

Updated to opinion - sorry can't tyep

User
Posted 23 Oct 2023 at 20:28

Hi 


Update: 


Following PSA rise to 0.38 seen onco on the 13/10, his plan is an aggressive approach, 20 RT session to pelvis lamph node plus HT. PSMA scan said  would take time long waiting list, chances of results on PSMA minimum as onco said less than 0.40 not visible, his opinion is that recurrence probably in bedding and possibly lamph nodes.


He said any delay is not welcomed, treatment needs to start straight way, first HT injection was given on the same day.


Obviously we are very worried about the treatment the outcome, side effects on bladder and bowel, my husband is worried about his work and whether he is going to be able to work or not. I am more worried about what outcome will be after the salvation RT+HT.


RT should start on the 10/11


Any experience sharing would be much appreciated.


Thank you for all your support 


 

User
Posted 23 Oct 2023 at 22:33

Hi Sandra,


Sorry I hadn’t seen your previous updates.


Sorry to hear his PSA rose again and now more treatment is needed. Good that they want to get everything started asap though.


Rob had his first RT session today and been on HT for about 10 weeks. So far not too bad but will keep my thread updated of any changes.


Robs PSMA pet scan didn’t show anything so we’re going for best guess also with RT to bed & nodes.


Really hope all goes well for you both x


 


 

User
Posted 24 Oct 2023 at 08:28
Sandra, most men tolerate RT pretty well. The side-effects of the radiation are cumulative; when I had my (primary) RT I had 32 sessions over six and a half weeks. No real side-effects for the first three weeks, then a gradual increase in bowel issues and urinary irritation and urgency. Side-effects typically peak 10-14 days after the end of treatment. For me, the urinary issues sorted themselves out within a few weeks after that, but bowels didn’t achieve anything like normality for about six months. It was inconvenient, but not a “show stopper”; if I went out I took an Imodium tablet and everything was fine.

Hope all goes well,

Chris
User
Posted 24 Oct 2023 at 08:50

Hi Sandra,


Everyone is different so I can only speak from personal experience, I suppose the side effects it has a lot to do with your plumbing and whether there are any ‘bits’ in the way.
I had 20 sessions of RT and found it a breeze compared to HT. I had some minor bowel issues…urgency when out walking and no control, fortunately happened near home so only had to walk a few yards looking like a spaceman!🤣🤣🤣 That sorted itself out very quickly as did issues with needing to pee.
I also didn’t suffer from fatigue which many men do, although since RT I have not had the same energy as beforehand, although I think that’s mainly down to the effects of HT and joint ache. For me the side effects of HT are far worse than that from RT.


Anyway, if it has to be done, it has to be done! So the best thing to do is to stay active and busy, and don’t stop during RT, and staying positive helps a lot as well.


All the best for your OHs’s treatment.


Derek

User
Posted 24 Oct 2023 at 12:44

I had a RARP 9 months ago. Pathology Gleason 9 (4+5), Grade 5. I understand that.


Extraprostatic extension left posterior - radial distance 1 ml - haven't got a clue what that means, googled it, still non the wiser???


Invasive micoacinar adenenocarcinoma - not a clue???


Since then had 3 monthly PSA checks - first < 0.02, second <0.05, third <0.02. The first and third checks were done at one hospital the second at another. I've been told that I've got a 50% of recurrence.


I've also been told that these readings are all classed as 'undetectable' and only a rise to 0.2 would cause possible further treatment.


 

Edited by member 24 Oct 2023 at 13:42  | Reason: Typo

User
Posted 24 Oct 2023 at 22:14

Hi Elaine


Thank you for your reply, I hope that the first session will go well, please keep us updated how it went.


All the best


Sanda

User
Posted 24 Oct 2023 at 22:16

Thanks Chris and Decho for sharing.

User
Posted 24 Oct 2023 at 22:20

Adrianus thanks for sharing, hopefully your PSA will remain under 0.2, and stay at undetectable. Pleased keep us updated.


Kind regards

User
Posted 24 Oct 2023 at 22:26

Thank you everyone for your reply, it is really valuable to us.


My husband is going to have a pelvis CT scan next week before the first RT session, this is to see the bowel and bladder position.


Any tips from the ones whom went through RT from your experience, how to best get prepared.


Many thanks


 

 
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