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Time from diagnosis to treatment

User
Posted 22 Jan 2023 at 19:19

Hi everyone

I had a PSA test in June 22 which came in at 9.5.

July 22 had an MRI scan showing a 25mm lesion, PI-RADS 5

October 22 - TP biopsy

Nov 22 - Post biopsy consultation where I was told that as well as the above the other scores were T3aN0, M to be determined by bone scan which took place in Dec 22 and came back as no spread so T3aN0M0. Currently waiting for a PET-CT scan which will take place next Wednesday 25th Jan 23.

A couple of questions if I may:

I have been reading the forums for a while now and feel that the time from the PSA test in June 22 until now is not normal. Am I correct in thinking this and with the diagnosis/scores so far should I be worried that things have not moved a lot quicker? The consultant at the post biopsy meeting told me that because of the location of the lesion I would be looking at some kind of treatment so RT or RP I expect. 

Has anyone had any experience of RARP at the University hospital of Wales in Cardiff as I am sure that if I go for RP this is where it will be done.

If RT makes it difficult for salvage treatment surgery if PSA starts to rise again, and I am sure that I have read that 30% of patients will have a rising PSA some time after RT, why would anyone choose RT over RP? Is it down to age and at 59 would RP be the preferred option?

I currently have no symptoms whatsoever and a huge part of me wishes that I had never asked for a PSA test. My mind, as is the case for a lot of people here from what I have read, is all over the place at the moment. After the PET scan next week I have booked a short break to Tenerife and when I get back I guess there will be a big decision to be made.

Sorry for all the questions that I am sure have been asked before.

Best wishes and good luck to all.

Ian 

 

User
Posted 22 Jan 2023 at 22:39

You could turn that question around. Since 30% of men need salvage treatment after RP, why would anyone choose surgery if there is a significant chance of needing RT anyway.

Personally, I think it is shocking that it has taken so long to get you to this stage but until you have the full diagnosis and have seen an oncologist you can't really make a decision ... is the urologist saying that he may be able to save some of the nerves or not?

My husband was 50. He had RP and then salvage RT 2 years later. He says that if he had understood the reality of life after RP he would never have had it. Some men opt for RP knowing that further treatment will be needed. Each man has to make a decision based on his own stats and his approach to risk.

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

User
Posted 23 Jan 2023 at 09:00

Recurrence after RT is usually due to unknown disease that was already outside the treatment area (and hence would have similarly caused recurrence after prostatectomy). Recurrence in the radiotherapy treatment area can happen, but it's significantly rarer and it would only be in this case where a salvage prostatectomy might be suggested.

Yes, your treatment delay failed to meet the 62 day target measured from GP referral. Unfortunately, this is now really common. This is less likely to make a difference in the case of prostate cancer than some other cancers, but there will be some people whose outcomes are impacted by failing to meet that target.

Edited by member 23 Jan 2023 at 09:15  | Reason: Not specified

User
Posted 23 Jan 2023 at 09:21

Hi Ian,

Yes not an easy decision to make. Cannot offer any advice you just have to weigh up what the professionals are telling you and consider how the treatment might affect your life style.

I had to wait 4 months for RP from biopsy. I noted others on here who were in the adjacent trust to mine had to wait less time. Post operative treatment differs from trust to trust as well, it is a postcodes lottery.

If you had not asked for a PSA test then by the time you had shown symptoms then you would have been in a much worse position. I had zero symptoms other than going for a pee three times a night. Many of us on here find out we have PCa by chance.

 

Edited by member 23 Jan 2023 at 10:33  | Reason: Not specified

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User
Posted 22 Jan 2023 at 22:39

You could turn that question around. Since 30% of men need salvage treatment after RP, why would anyone choose surgery if there is a significant chance of needing RT anyway.

Personally, I think it is shocking that it has taken so long to get you to this stage but until you have the full diagnosis and have seen an oncologist you can't really make a decision ... is the urologist saying that he may be able to save some of the nerves or not?

My husband was 50. He had RP and then salvage RT 2 years later. He says that if he had understood the reality of life after RP he would never have had it. Some men opt for RP knowing that further treatment will be needed. Each man has to make a decision based on his own stats and his approach to risk.

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

User
Posted 23 Jan 2023 at 09:00

Recurrence after RT is usually due to unknown disease that was already outside the treatment area (and hence would have similarly caused recurrence after prostatectomy). Recurrence in the radiotherapy treatment area can happen, but it's significantly rarer and it would only be in this case where a salvage prostatectomy might be suggested.

Yes, your treatment delay failed to meet the 62 day target measured from GP referral. Unfortunately, this is now really common. This is less likely to make a difference in the case of prostate cancer than some other cancers, but there will be some people whose outcomes are impacted by failing to meet that target.

Edited by member 23 Jan 2023 at 09:15  | Reason: Not specified

User
Posted 23 Jan 2023 at 09:21

Hi Ian,

Yes not an easy decision to make. Cannot offer any advice you just have to weigh up what the professionals are telling you and consider how the treatment might affect your life style.

I had to wait 4 months for RP from biopsy. I noted others on here who were in the adjacent trust to mine had to wait less time. Post operative treatment differs from trust to trust as well, it is a postcodes lottery.

If you had not asked for a PSA test then by the time you had shown symptoms then you would have been in a much worse position. I had zero symptoms other than going for a pee three times a night. Many of us on here find out we have PCa by chance.

 

Edited by member 23 Jan 2023 at 10:33  | Reason: Not specified

User
Posted 23 Jan 2023 at 19:28

Hi all

Thanks for the replies

I should have added Gleeson 3+4=7 and 12 of 20 cores showing cancer to the original post but having pressed send could not work out how to amend it.

Hi Lyn. I guess what I was trying to say, rather badly, was that if the side effects of RT and RP are broadly similar and there is an equal chance of requiring further treatment then isn't it correct to say that after RP you can have RT but after going down the RT route originally further RT or RP is a no go or more difficult? I have only had contact with the Urologist post biopsy and after the PET scan Wednesday I should be seeing the "Team" in approximately 2 weeks when they should have all of the info they need. Nothing has been mentioned regarding nerve sparing or what type of treatment to have, the only thing he mentioned was that it was still contained in the capsule but was right on the edge of the RHS so if its on one side I would guess that 50% should hopefully be spared at least. Hopefully, between the MRI and the PET scan they should be able to determine if the cancer is fully contained in the prostate and in that case, after RP shouldn't I be reasonably confident of not requiring RT in the future?

I have ordered the Toolkit and hopefully this will clarify a few things and point me in the right direction. Knowing something of the radiologists/surgeons record or success rate would be a big factor in deciding which way to go if there is no definite prompt either way but the Welsh NHS seem to keep things close to their chest regarding this kind of information.

Best wishes

Ian

User
Posted 23 Jan 2023 at 20:21

Originally Posted by: Online Community Member

...Yes, your treatment delay failed to meet the 62 day target measured from GP referral. Unfortunately, this is now really common...

OP is talking of treatment in Cardiff, so we can assume lives in Wales. Healthcare is devolved so these targets may not exist in Wales. We have had several posters from Wales recently who have had long waits for prostate cancer treatment. Everyone in Wales gets free prescriptions, so it's just a case of a government deciding what is the best use of limited resources, PCa patients may be getting a bit short changed, but others are doing fine. In England you could argue, PCa patients are gaining from a blanket 62 day target for cancer, when in reality PCa could be pushed further down the list compared to other cancers (I hope no government ministers read this).

Dave

User
Posted 23 Jan 2023 at 21:12

For interest sakes in Scotland it is devolved and the targets are:

The 62-day standard states that 95% of eligible patients should wait a maximum of 62 days from urgent suspicion of cancer referral to first cancer treatment.

The 31-day standard states that 95% of all patients should wait no more than 31 days from decision to treat to first cancer treatment.

In my case NHS Fife more or less achieved these targets. The delays started only AFTER starting HT, waiting for RT, caused by poor communication IMO.

Edited by member 15 Feb 2023 at 17:56  | Reason: Not specified

User
Posted 15 Feb 2023 at 17:32

Hi everyone

So, after 7mths 2weeks of scans and tests I finally got to sit in front of a consultant for the verdict. What a disappointment. The original consultant that did the biopsy and follow up consultation has semi-retired and will not be available until April. I was initially going to have my MDT results delivered by the specialist nurse but pushed for a consultant and got one, big mistake. I was given two booklets on RALP and RT and told to read them, take my time and make a decision. I did manage to persuade him to print out my MRI and PET CT scan reports. He initially told me that the lesion was T3C and they recommended surgery which was a massive shock as the original consultant reported T3a. I queried surgery as being a good move with a T3C lesion and he then changed his mind and said "honest to god I would have RT, I have seen too many recurrences after RP". I told him to refer me for RALP in Cardiff immediately just so that I can speak to someone that can give me a better idea of what to do and if not comfortable I will ask to see an oncologist.

As I was leaving he said to me that if I had a problem with kidney stones he could help me more but this decision was entirely up to me which I completely understand but it would be nice to have all the facts to make a decision.

I have updated my Bio with the scan results but briefly, the MRI showed a 2.2cm tumour, PIRADS 5, T3CN0Mx right peripheral zone predominantly apical tumour.

The PSMA PET CT scan report showed a 2.1cm tumour within the prostate, extending from the apex to the mid gland T2CN0M0 with no spread beyond the gland or to the seminal vessels which I think is an improvement on the MRI scan. The conclusion was multiple PSMA avid intraprostatic lesions in keeping with organ confined prostate carcinoma.

At the moment I am just trying to calm down after this afternoons letdown but I think that I will be going down the RALP route.

Best wishes and good luck all

Ian

User
Posted 15 Feb 2023 at 18:04

Ian,

I’m really sorry to hear this,  that is pretty dreadful treatment😡

I hope you get some satisfaction from Cardiff.

the NHS is Scotland is far from perfect but The Cancer treatment I have had in Fife is generally good…and we get free prescriptions too.

Derek

User
Posted 15 Feb 2023 at 20:55
Thanks Derek

Yes, pretty shoddy. It was only after getting home and looking at the MRI and PET reports that I realised that lesion was T2C and not T3C as he had told me. He obviously hadn't even read my notes, or didn't understand what he was reading.

Anyway all the best to you, good luck with the rest of your treatment.

Ian

User
Posted 15 Feb 2023 at 22:37

Your treatment has been pretty shoddy. Have you been provided with a number for the uro-oncology nurses? I have found them to be excellent, only to happy to answer any questions. Usually answer phone message and call back in a few hours. Both units where I have been treated have followed the same protocols even though they are different trusts.

As for treatment options it's definitely worth talking to the specialist nurses on here, they are brilliant.

User
Posted 16 Feb 2023 at 01:04
Some confusion here I think as there is no such thing as T3c - is it possible that this most recent surgeon had referred to you being in risk group 3CPG (a different scale)?

When you see the second opinion surgeon, ask specifically whether you will be suitable for nerve-sparing surgery - the fact that the two scans are indicating slightly different stages suggests that it is very close to the edge and, if the op would be non-nerve spring, you might take a different view?

Personally, I would want to see an oncologist and a urologist before making a decision.

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

User
Posted 16 Feb 2023 at 20:49
Hi Jim

Spoke to the specialist nurse this afternoon and made my displeasure at yesterday's experience known. She was, as always, great and suggested staying in the system and going to the next meeting with the surgeon. After this if still not happy the option to see an oncologist or go the private route is still there. Just adds time to the near 8mths that I have been waiting so far though.

Hi Lyn

I am looking at the MRI report right now and it definitely states "Provisional radiological staging T3c,N0,M0" although I suspect that you are correct and there is no such stage. The nurse that I spoke to today read my MDT minutes which stated lesion was T3a. PET scan report shows T2cN0M0 so seems like its a bit of a grey area and depends on who is looking at the scans although I thought that a PSMA PET CT scan would have given a clearer picture.

I will definitely be asking about the nerve sparing and as you say the response is going to determine which route I take.

Best wishes everyone.

Ian

User
Posted 14 Mar 2023 at 16:36
Hi all

Quick update and a few questions.

So, after 1 week short of 9 months I finally got to chat with someone that knew what they were talking about and spent a long time explaining results and options. This was the consultant that would carry out the RP in Cardiff if I decide to go with that option. Again, he recommended surgery as a first option but was honest enough to say that it was a marginal call and mainly based upon my age (60 in Nov). He did say that as the tumour was "bulky" at 21mm and pressing on the RHS wall he would probably have to remove the nerves that side and as the PET scan showed multiple tumours throughout the capsule he did not think there was much chance of saving the other side. He did say that cancer wise RP or RT would give equal results so side effects would be the kicker as far as choosing which to go for. As I was leaving I mentioned that although ED was originally my main concern, having thought about it being incontinent for any length of time would, I believe, have the bigger impact on my life. He said that as the tumour was extending to the apex then possibly RT was the way to go if continence issues were my main worry even though they can be an issue with RT also.

So, final step is a meeting with the oncologist next Monday and then decision time.

Questions I have are:

How is the length of HT post RT determined? I have read a study report from a Spanish University saying that for men with intermediate risk cancer, which mine is, any longer than 4 months offers no additional benefit.

Can anyone recommend particular HT's as far as reducing side effects are concerned.

I realise that the oncologist will have the answer to these but just wanted to be ready to question her.

Thanks

Best wishes

Ian

User
Posted 14 Mar 2023 at 20:02
I don't think you are intermediate risk, Ian - with a T3, you might be better looking at research for high risk.

How long a man is on HT depends very much on oncologist preference. 3 years was becoming more common until a large scale piece of research (UK / EU / USA) showed that more than 18 months has a significant impact on quality of life but offers no real benefit in terms of efficacy.

Type of HT usually depends on oncologist preference; however, we have seen a number of men here recently who have found their GP practice ignores the onco recommendation and prescribes either the more cost-effective version or the one their practice nurse is most used to giving. Side effects of zoladex, prostap and decapeptyl are very similar; the main difference being that zoladex must be given every 4 / 12 weeks and it is important not to get it late whereas prostap & deca are given every month / 3 months and 2 or 3 days leeway either side isn't a deal-breaker. So if you are a keen traveller, you might want to express a preference for prostap / deca although they don't have to comply.

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

User
Posted 14 Mar 2023 at 20:43

Thank you Lyn, excellent info as always, especially re the Zoladex as I do travel for work.

There still seems to be a bit of confusion over the T stage of the tumour. PET and MRI show the tumour fully contained with no spread but it is easily felt during the DRE which was done again today. So I have reports showing T2c and 3a. Of the 12/20 cores showing cancer >4% were 4 and the rest 3 on Gleeson 3+4=7. PSA is 9.5. Both consultants have said intermediate risk. I will see what the Oncologist has to say next week and then make a decision but as mentioned previously I now think that RT is the way forward for me.

Thanks again

Ian

User
Posted 14 Mar 2023 at 21:59

I am not disagreeing with your consultants re assessed risk based on staging and Gleason; they are the doctors. My point is that the fact that you are likely to need non-nerve sparing on one side and possibly only partial nerve sparing on the other side suggests that while the surgeon is defining your cancer as intermediate risk, he is approaching the op as potentially high risk. I just think that when reading research papers on HT timing, you should be reading up on high risk cases rather than intermediate as it gives you a solid base for discussion if the onco is particularly risk averse.

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

User
Posted 15 Mar 2023 at 10:08

Thanks Lyn, that all make sperfect sense and of course I will be going along with what the Onco thinks is for the best. 

User
Posted 20 Mar 2023 at 20:35

Hi all

Spoke to the oncologist today and after 9 months I have decided on RT. The reason for the decision was that the surgeon said he would definitely have to remove at least 50% of the nerves and the tumour is mid gland to apex which increases the chance of continence issues. He also said that if continence was my main priority then to go for RT. The clincher was the onco saying that treatment would be 7 days of tablets, 3 months of HT including the final 20 days of RT and no further HT afterwards. I was expecting more HT so I am not sure why such a short period. The 3+4=7 score showed <4% grade 4 so perhaps this has something to do with it. Maggie's in Cardiff have a getting started with RT session in a couple of weeks with a specialist so hopefully find out more then. In the meantime can any of the RT club tell me what role the onco plays in the procedure apart from prescribing the type and length of HT and the type and number of fractions of RT as I have read that the planning and delivery of the RT is done by the Physicist and Therapeutic radiographer which I would have thought is the really important bit.

Thanks and best wishes all.

Ian

User
Posted 21 Mar 2023 at 18:12
I think you've made a wise decision. Overall, around 30% of men who have an RP go on to require SRT but the figure is significantly higher for those with a T3 diagnosis. You'd be likely to end up with two sets of side-effects rather than one had you gone for surgery.

If it's any consolation I went down to HT/RT route (recommended in my case) and didn't find it too bad at all.

Very best wishes for your treatment,

Chris

User
Posted 21 Mar 2023 at 19:51

I guess the role of the onco Vs physicist Vs radiographer, is that the onco is in overall control. A bit like an oil painting being described as "school of Leonardo da Vinci", he probably drew the outline of Mona Lisa and just asked one of his minion's to fill in the details, "and give her a nice smile, like someone's tickling her..."

Dave

User
Posted 21 Mar 2023 at 20:47

Thanks Chris, appreciate the comments. I think that the only reason that I was thinking of RP originally was the hope that the nerves could be spared and once that option had gone then RT became the preferred option and the short, relatively, period on HT only confirmed this.

 

Thanks Dave

As long as the minions are experienced I will be happy.

Best wishes

Ian

User
Posted 21 Mar 2023 at 21:29
The skill of the oncologist is in designing / planning exactly how much radiotherapy you need where and write the computer programme - s/he will usually do this in consultation with a physicist. Once the computer programme is written, it is over to the radiotherapy team to get you in position and then press start on the computer each day. They don't 'do' the treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Mar 2023 at 20:04

Thanks again Lyn, more useful info.

 
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