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Concerns post RP @ 8 weeks

User
Posted 07 January 2017 08:43:28(UTC)
Hi, I've posted on the treatment forum as well but I got up this morning and feel quite low.....I had the RP 8 weeks ago, previous MRI and Bone Scans indicated that all was within the Prostate.....my Histology meeting didn't go well as the report hadn't arrived....but the PSA test taken 6 weeks post op was reading 2.9. I was expecting it to be almost zero....The surgeon has requested another test in 3 weeks, he felt the 6 week test might still be showing residual PSA in my blood......but my gut feeling is is that the RP wasn't successful and the cancer is still lurking....meaning more treatment.....and stress.... I feel really fit, my incontinence is well on the way to going away already and I was hoping to put the worry behind me.....I am now concerned about the side effects of Radiotherapy......is permanent incontinence likely?...also what is the situation with possible damage to the bowel......just when I thought I was starting to climb out of the swamp I feel I'm being sucked back in.......Paul....
User
Posted 07 January 2017 16:53:00(UTC)

Ulsterman, if you were my partner or brother I wouldn't allow any hormone at all near you until after that first PSA test ... I would want to know what the level is without the complication of wondering whether the HT had artificially lowered it.

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


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User
Posted 07 January 2017 09:53:43(UTC)
Hi Paul
I well remember that same feeling of disappointment when I was told that my first post op PSA was 0.2. I chose to wait for another few PSA tests before choosing what to do next as the onco explained to me that initially it could be residual but he wanted to see how quickly the PSA changed. He said that if cells were left behind then a slow increase in PSA would indicate they were in the prostate bed and therefore could respond well to salvage RT but if the readings increased quickly then they were elsewhere and HT would be advisable. He also said that we could use both. Now this is going to sound strange to many but all through this PCA thing having cancer has never actually bothered me it has been trying to just get on with life while dealing with the side effects of treatment that has been the challenge. You have done well with recovery from the op and have managed the incontinence so now there might be a new challenge. While waiting for my RT I read the information from the hospital, took note of the wealth of experience on this site and then made my plans for the worst case scenarios. I have to say that I finished the salvage RT in June and didn't really have any side effects. I know they could arrive at some stage in the future and I will deal with that problem then. In the meantime I am waiting to find out whether the salvage RT has worked but it is not something I spend time worrying about as there are too many lovely things to be getting on with. If you do have RT rest assured that your team will ensure that you will have all the information you need to minimise any long term risk to your bladder or bowel. I have to say that I am glad I hung on to a few pads as this is the first time I have had a cold since my op in 2015 and a high energy sneeze still has the ability to to empty a fair drop of urine from the bladder.
I hope that your results turn out to be good but in all honesty for me the salvage RT has passed by pretty smoothly.

Kind regards

Kevan
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User
Posted 07 January 2017 11:09:35(UTC)

My instinct is as yours Paul, your post op PSA is as high as a healthy 60 year old with a prostate :-( There is a possibility that the test was flawed in some way but wise to start preparing and reading round your options I think. If the next test is still high, I would hope they offer you a high definition scan before assuming it is just cells left behind in the prostate bed.

Incontinence is not guaranteed to get worse with RT, and bowel damage is less common these days as most if not all hospitals use IGRT rather than the older scattergun approach. John had salvage RT five years ago and has had no problems whatsoever so it's not all doom and gloom.

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


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User
Posted 07 January 2017 09:53:43(UTC)
Hi Paul
I well remember that same feeling of disappointment when I was told that my first post op PSA was 0.2. I chose to wait for another few PSA tests before choosing what to do next as the onco explained to me that initially it could be residual but he wanted to see how quickly the PSA changed. He said that if cells were left behind then a slow increase in PSA would indicate they were in the prostate bed and therefore could respond well to salvage RT but if the readings increased quickly then they were elsewhere and HT would be advisable. He also said that we could use both. Now this is going to sound strange to many but all through this PCA thing having cancer has never actually bothered me it has been trying to just get on with life while dealing with the side effects of treatment that has been the challenge. You have done well with recovery from the op and have managed the incontinence so now there might be a new challenge. While waiting for my RT I read the information from the hospital, took note of the wealth of experience on this site and then made my plans for the worst case scenarios. I have to say that I finished the salvage RT in June and didn't really have any side effects. I know they could arrive at some stage in the future and I will deal with that problem then. In the meantime I am waiting to find out whether the salvage RT has worked but it is not something I spend time worrying about as there are too many lovely things to be getting on with. If you do have RT rest assured that your team will ensure that you will have all the information you need to minimise any long term risk to your bladder or bowel. I have to say that I am glad I hung on to a few pads as this is the first time I have had a cold since my op in 2015 and a high energy sneeze still has the ability to to empty a fair drop of urine from the bladder.
I hope that your results turn out to be good but in all honesty for me the salvage RT has passed by pretty smoothly.

Kind regards

Kevan
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User
Posted 07 January 2017 11:09:35(UTC)

My instinct is as yours Paul, your post op PSA is as high as a healthy 60 year old with a prostate :-( There is a possibility that the test was flawed in some way but wise to start preparing and reading round your options I think. If the next test is still high, I would hope they offer you a high definition scan before assuming it is just cells left behind in the prostate bed.

Incontinence is not guaranteed to get worse with RT, and bowel damage is less common these days as most if not all hospitals use IGRT rather than the older scattergun approach. John had salvage RT five years ago and has had no problems whatsoever so it's not all doom and gloom.

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


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User
Posted 07 January 2017 13:04:54(UTC)

Hi Paul I had adjuvant RT after my histology report showed positive margins even though my PSA was in the undetectable , i was offered wait and see go on radicals trial or early RT , after taking advice I went for the early RT as trials are showing promising results I am two years post op and still undetectable ( next result on Monday) I found RT had no real side effects apart from having to wear a pad again for a couple of weeks .all the best Andy forgot to say i have had no HT

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User
Posted 07 January 2017 15:41:55(UTC)
Paul

I'm 46, so a bit younger than you. I had my post-op meeting last week, four weeks after surgery.

It's obviously too soon to have a PSA test. Pathology reports have upgraded me to a Gleason 9 and T3b.

Without a post-op PSA result, my urologist said I need radiotherapy. He was also going to start me on hormone therapy that day by prescribing my first tablet. He then decided to wait a week as he was able to get me a speedy appointment with the oncologist this week.

Like you, I'm disappointed. I had hoped surgery would have been the end of it. The speed with which he wants to move is unsettling to say the least. The fact that he was going to start hormone therapy without waiting for a PSA test is a bad omen, I think. He even talked about adding chemo in at the end of the radiotherapy.

It all gets very confusing. Thank God for people on the forum who have been there and bring us hope and clarity.

Walter

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User
Posted 07 January 2017 16:36:31(UTC)

When I was diagnosed I was told that I had advanced PCa. This meant that RP and RT were non-starters for me. This will sound perverse but there have been many times since then when I've been almost pleased that I'm advanced! I haven't had to make the horrendously difficult decisions you guys have had to make and I haven't had to experience the disappointments when it has turned out that further treatments are required. My life will be shorter than would otherwise be the case if I wasn't advanced but my treatment decisions are binary.

I wish you all well but I haven't been where you are now and thus my advice/opinions are of no value to you.

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User
Posted 07 January 2017 16:53:00(UTC)

Ulsterman, if you were my partner or brother I wouldn't allow any hormone at all near you until after that first PSA test ... I would want to know what the level is without the complication of wondering whether the HT had artificially lowered it.

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


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User
Posted 07 January 2017 18:10:23(UTC)
Lyn - this is why I'm so confused. The urologist was going to start immediate hormone therapy. Strangely, it's the one I fear most. I'll update on Wednesday when I've seen the oncologist.

Ulsterman
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User
Posted 07 January 2017 19:51:14(UTC)

Unfortunately, the best way forward is not always clear, even to the experts. My experience illustrates this. The advice given to me following salvage HIFU at UCLH was to start HT immediately as they interpreted my scan as showing cancer in an iliac node because it showed an uptake of Chlorine on MRI scan. I got another opinion from the Marsden in which they said they were not convinced that the amount of Chlorine indicated that this iliac node was cancerous and NOT to start HT at that point, an opinion shared by 2 other hospitals I had been involved with who had viewed my scans. I decided to see how my PSA tests moved before starting HT. Although my PSA has risen slowly, another MRI a year on has shown no further change in the suspect iliac node but a suspicious area in my Prostate. My consultant at UCLH said a year or so on that I did well not to start the HT when they suggested it. Had my PSA increased steeply, I would have started HT and might still do so at some stage but at least I will have had longer without it. It will be interesting to learn at my meeting with UCLH next month whether they propose to do a further scan or anything more on the Prostate, if not I may look elsewhere. My reasoning is that if further treatment to the Prostate can lead to any cancer there being eradicated, any subsequent rise would be due to the cancer being outside the Prostate where HT might then be appropriate.


Barry
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User
Posted 07 January 2017 21:43:22(UTC)
I agree with Lynn even thou h OH was high psa the consultant wouldn't initiate any hormone treatment until all scans were complete because it may mask any potential symptons .
Debby
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User
Posted 08 January 2017 11:42:55(UTC)
Hi Paul
What were your PSA values leading up to op. Have you any histology given to you ?
The half life of natural PSA breakdown I understand to be around 3 days. So 21 days we can only wait. Is it possible that your testicular cancer treatment may have affected PSA breakdown or are you on meds? I like you are assuming 2.9 is correct, as Lyn says could be incorrect. Obviously everyone is different, just question everything in my opinion. All the best. .
User
Posted 08 January 2017 12:21:29(UTC)
Originally Posted by: Online Community Member
Hi Paul
What were your PSA values leading up to op. Have you any histology given to you ?
The half life of natural PSA breakdown I understand to be around 3 days. So 21 days we can only wait. Is it possible that your testicular cancer treatment may have affected PSA breakdown or are you on meds? I like you are assuming 2.9 is correct, as Lyn says could be incorrect. Obviously everyone is different, just question everything in my opinion. All the best. .


Hi, Pre Op PSA was 7.7, not received the Histology yet as it wasn't available, when I attended the Histology meeting!....
Testicular Cancer was 18 years ago and not related to this at all...all I had was surgery to remove the testicle and that was it.....
Will know more in 4 weeks time......Paul.....
 
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