my brother in January, now me!

User

Posted 17 Mar 2016 at 08:08

Hi guys,

So my 60 yr old brother was diagnosed in January, having ignored some toilet symptoms for a while. Some growth on the outside but ok for RP which he had 2 weeks ago. So I thought I had better be checked. Im 56 just. In January my psa result was 13! I had 4 DREs, all smooth and soft, but biopsy showed 5 out of six hits on one side only. MRI has indicated no spread and I have no symptoms. Only got checked coz of my brother!

So tomorrow I see the top guy in Cambridge to discuss RP, and on Monday another guy about RT. The diagnosis consultant said the multidisciplinary panel were recommending surgery, but that its upto me, of course. I guess I agree as one side may still develope cancer, I am young, and my brother has it, so RT may work now but not for whats to come. Gleason 3 and 4. My brothers was 4 and 3.

All tips very welcome!

User

Posted 18 Mar 2016 at 20:22

David

If survival rather than quality of life is the aim then go for the treatment that you feel is the best for that as no one can predict severity of side effects for each person
of whatever chosen treatment.

Chris/Woody.

As regards ED its RT nerve damage rather than HT. Feedback from long term guys I know on Zoladex seems to suggest the longer on it the greater ED issues.

However you could be lucky - I sincerely hope so.

Ray

User

Posted 30 Mar 2016 at 21:53

No, you haven't missed anything. If all other things are equal then there is no difference in success rates between surgery and IMRT (survival to 10 years and reaching 10 years disease free) and when you look at 5 year data there is no apparent difference between surgery, IMRT and brachy.

What I was saying was that if a specific man's best chance of cure is advised to be RT + 3 years HT but he doesn't like the idea of HT side effects, he may decide to opt for RT with 1 year of HT, understanding that this might reduce his chance of cure very slightly. Another man may be told that surgery is the best option for him but he decides to opt for AS, understanding that this may be a bit riskier in the long term but more acceptable to him in the short term. Or the man who could have surgery but is frightened of general anaesthetic might opt for radiotherapy.

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

Show Most Thanked Posts

User

Posted 17 Mar 2016 at 16:29

Hi David

I'm the same age, and broadly similar pre op stats. I'm now 1 month post op a robot assisted prostatectomy. I'd guess your focus at the moment is on just getting rid of the thing. I wonder if you have the sort of relationship where you can talk things through with your elder brother as well as draw advice and support from this group?

All you can really do is make informed choices . Now that you have the PSA and biopsy results, and are gathering information to shape your choice, it can seem like you may arrive at certainty of decision as to the treatment path you choose, only the next day for some doubt to rear its' head. This is perfectly normal. You will never have all the information, no matter how long you take. Ultimately, your decision on treatment will be from a position of relative ignorance.

As an example of relative ignorance with which we arrive at our decisions( and this is in no way meant to scare you), the side of your prostate that is apparently free of cancer- in reality, an MRI will not often pick up a low grade prostate cancer, and the biopsy doesn't sample the entire gland- it's more like lucky dip. But you'll still have to make a decision based on that incomplete understanding. Doing nothing is a choice, but be sure you arrive at it for the right reasons.

When you think about it, this is probably much the same as most of the other important decisions you've taken through life. Work towards accepting that element of uncertainty. It sounds like you're doing this already. Take your time, don't be guided by fear and arrive at a hasty decision- for it is ultimately your decision.

I hope that doesn't sound too harsh.

atb for your journey.

User

Posted 17 Mar 2016 at 19:31

Hi David welcome to this site and sorry that you have to be here but we are all in the same boat as you either by being the patient or other halves or family, it touches us all.

I was diagnosed in Feb 2015 with PSA 63 Gleason 3+4=7 aggressive PCa confined to the capsule I was only offered HT and RT as my prostate is too close to the rectum wall with a risk of leaving a trace or breaching the wall, either way I did not have the choice to make.

I can only say that for me my PSA went down to 0.5 after six months on HT and following RT has dropped to 0.01 and undetectable, so am in a good place at the moment.

All the side effects of both HT and RT were tolerable although tend to get me down occasionally but my view,is it is better to be alive.

Although I have no libido (part of side effect) and have hot and cold flushes with general fatigue I am glad that I did not have to go through the ED and incontinence issues that so many others have after having a radical prostectomy. It would still have been my decision if a prostectomy had been offered.

There may be others on here that will tell you their story or experiences and once you have divulged all the information from all sources I am sure you will make the right decision for you, unfortunately only you can make it.

You can call the nurses on this site and talk to them for anything that you feel that needs explaining better, they are really knowledgable and will help you tremendously.

Best of luck with whatever treatment path you choose.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 17 Mar 2016 at 20:15

Thanks you two for those helpful replies. Chris/Woody, although your treatments seem to have worked, which is great, are you still on them, and will it be longterm, or have they done their job?

Thanks
David

User

Posted 17 Mar 2016 at 20:40

DW, I am sure the oncologist will explain - if he believes it would be true for you - that all other things being equal, surgery has exactly the same success rate as radiation & hormones in terms of total remission at 10 years, but is more likely to result in permanent side effects. I am always impressed by any hospital that routinely arranges for newly diagnosed men to see both a surgeon and an onco - the opportunity to talk through possible outcomes and impact is priceless.

Good luck with your decision-making

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

User

Posted 17 Mar 2016 at 21:28

Good point Lyn about hospitals that enable you to see both a surgeon and an oncologist. This is what happened to me at Clatterbridge and I was grateful that neither specialist "pushed" their own specialism and just set out the facts as they saw them. Of course that puts the onus on you if you are fortunate enough to have a choice but you can then weigh up the pros and cons of each treatment path and decide what is more tolerable for you in terms of side effects etc etc.

User

Posted 17 Mar 2016 at 21:35

David, I will be on HT for another twelve months with nothing else planned but only time will tell as when the effects of HT wear off after another two years it is possible for my PSA to rise if there is some PCa surviving. No one knows if they are ever cured or if cancer will come back so it will be monitored.

I am 66 at present and have also started the add Asprin trials which will be for the next five years. If something occurs within that time it will be closely monitored and dealt with, I hope.

The hormone treatment has done and will carry on doing its job and I personally think that for my situation it has been the best way forward.

The side effects have been tiredness and some muscle loss, hot and cold flushes day and night, loss of libido and extreme tearfulness for no reason and also when seeing anything happy or sad. whatever way you go for treatment there will be side effects and as Lyn says there will be permanent side effects with surgery. Possibly prepare a list of questions for each of the specialists and see what you are told by them, it may be easier to make your decision then.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 17 Mar 2016 at 21:55

Thank you all.....I was fairly certain I would go for surgery, like my brother 2 weeks ago, but his was just outside the prostate, and I believe mine is within, so maybe RT may work. It's just if it doesn't, I'm in trouble. I'll see what happens tomorrow with the RP guy at Addenbrookes, and get back to you all.

Thanks

David W

User

Posted 17 Mar 2016 at 23:20

Unfortunately, no treatment can 100% guarantee that no cancer cells have escaped even where the cancer is contained within the prostate, though in such cases the risk is much reduced.

This is not a recommendation but there are other treatments apart from surgery and radiation/hormone therapy that patients are not often informed about. This is largely because these are not generally available at treating hospitals and long term outcomes are not so well established. However, some patients feel these can have advantages. Cryotherapy and High Intensity Focused Ultrasound are two of these, the latter being an alternative where the cancer is localised, especially where it is on only one side of the Prostate. Of course, looking at other alternatives will be regarded by some as adding to the dilemma of making a treatment choice but for a few may provide a preferable option for suitable patients prepared to research alternatives.

Barry

User

Posted 18 Mar 2016 at 10:44

Well, just back from my meeting with the surgeon. I had to do another pee strength test and it came out good. He is now the fourth man to feel my prostate in 5 weeks, and this time only he said the side with the 20% cancer does feel a bit firm. This . means that in surgery one nerve bundle will have to be removed, even though it's all within the gland. This I was not expecting. Some lymph nodes too just in case.

He also said there would be only a 40-50% chance of NOT having ED. Another blow. Worse than I thought.

So on Monday I will see someone about RT, preceded by a month of HT to shrink the prostate if I choose this.

Now if RT fails later on, what would happen as a later treatment, as surgery would be off limits now? They say both RT and RP are equal in getting rid of it. And what side effects would these later treatments have in terms of ED, compared to surgery to begin with?

I'm really struggling here. 50-60% chance of ED with surgery. ..and I've only been married 6 years...not fair! How is ED with RT and whatever MAY be needed in a few years?

I will call a nurse to discuss this too.

Thanks guys!

David

User

Posted 18 Mar 2016 at 10:58

Hello. I just thought I'd say we went to Addenbrookes too. Though surgery was never mentioned. My other half was suggested radio therapy or brachytherapy. (Gleason 6) or surveillance. I don't know why but surgery just wasn't mentioned. Only by the Macmillan nurse when we were in a room with her and she gave us all the paperwork of various treatments. Surgery was in the paperwork but the oncologist said radio/brachy best. So referred us to Addenbrookes.

I don't know if you'll see the same chap we see. (You're not allowed to say names on here) but he said my other half would need no hormones whichever treatment he chose. I think because his prostate was normal size.

He had brachytherapy Jan 2015. Although he's had a bad year with side effects. (Prostatitis and radiation induced cystitis) The good news is psa now 0.6 the consultant said if it's below 2 still in 18 months then there is a 90% chance the cancer will not return.

Also a friend of ours had brachy at Addenbrookes when he was 50. He asked whether he could have surgery if it returned. The consultant replied that it won't return. But to answer the question he said he would perform surgery but incontinence is a lot more likely (and ED)

All the best.

Edited by member 18 Mar 2016 at 11:05 | Reason: Not specified

User

Posted 18 Mar 2016 at 11:14

Hi David,

This is not intended as advice or to influence your decision in any way....

I'm not sure what your clinical 'T' staging is at present?....

Mine was T2b before surgery ( tumour(s) in more than half of one side ) The other side was 'clear' ...

The surgeon told me he would almost certainly remove the nerves on the affected side....... but he also said it's usual to find evidence of a smaller tumour on the 'clear' side when it has been dissected in the lab after surgery.

In his words, " T2b's usually turn out to be T2c's "

In my case he was dead right as my histology was uprated from T2b to T2c ( tumour in both sides ) even though biopsies did not pick it up.

I had nerves spared on the 'good' side as the tumour found was only small and well away from the edge of the capsule...

Luther

Edited by member 18 Mar 2016 at 11:25 | Reason: Not specified

User

Posted 18 Mar 2016 at 11:39

Luther, thanks. Mine is probably 2b, one side only, with some PIN on the other side. So when did you have yours done, and any help on ED?!

dAVID

User

Posted 18 Mar 2016 at 12:19

Hi David,

I was given the choice of RT or RP. I chose open RP because I just wanted the thing out, also if it failed I could follow it up with RT (much more difficult the other way round). In terms of ED that was of course a major consideration but not top of the list, I just wanted the Pca sorted. Now 2 weeks post op and feeling pretty good, seeing surgeon on Monday for path results and to have catheter and staples removed. No regrets so far. Best wishes to you with whatever you decide.

Regards

User

Posted 18 Mar 2016 at 13:18

Thanks Al. Was Brachy an option for you? I understand that as mine is contained, is T2a/b, and Gleason is 3+4, PSA 13, I could possibly qualify for Brachy?

David

User

Posted 18 Mar 2016 at 13:40

Originally Posted by: Online Community Member

Luther, thanks. Mine is probably 2b, one side only, with some PIN on the other side. So when did you have yours done, and any help on ED?!

dAVID

David,

I had surgery 21 months ago... ( you can check out members profiles by 'clicking' on their avatar.. )

I still suffer with ED ....... but it is improving with the help of medication ( muse ) and I'm pretty confident I will get there eventually....

I use a vacuum pump regularly to help keep the fibrous tissue of the penis healthy meantime...

It can take 2 - 3 years in some cases for remaining nerves to repair so I'm told..

Not what you want to hear I'm sure....

I'm older than you ( 64 ) and have been married for 36 years to a very understanding wife.......so my situation is slightly different in terms of 'time together' etc...

Not everyone who has surgery will suffer with long term side effects, but you really do need to consider all your options before deciding.

On a personal level, I have no regrets about having surgery as I had reliable feedback from the histology report afterwards as to the extent of my disease and a good indication as to how successful the procedure had been.

Everyone is different... there are risks of side effects whatever route you take... there is no easy ride in this game..

You have to choose the route that you feel will give you the best chance of a cure first time around.... hopefully without the need for adjuvant or salvage treatment in the future....

Side effects,and their severity can be managed or overcome in time whichever treatment you decide on..

Luther

User

Posted 18 Mar 2016 at 13:41

Hi David

Didn't really discuss rt options , had decided early on to go for surgery. I don't think brachytherapy would have been appropriate anyway as mine is a t3b with some seminal vesicle involvement.

Cheers

User

Posted 18 Mar 2016 at 13:51

and what about HIFU, like Barry said....?

User

Posted 18 Mar 2016 at 14:04

Hi David,

This wasn't mentioned but again probably not suitable for me. I understand that the side effects of hifu can be much less that other treatments.

Cheers AL

User

Posted 18 Mar 2016 at 14:09

David, I should mention that the ed side effects with HT and RT are not permanent and normal service can be resumed after completing HT with a little bit of time for system to wean itself off the hormones.

As you can see it is not an easy decision for you to make and taking all the info in is mind boggling.

Best of luck and hope you are happy with whatever choice you make in the long term.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 18 Mar 2016 at 15:46

But in reality, how many have Brachy when their PSA is 13, Gleason 3+4, even when confined within just one side of the prostate (PIN in the other side) ? And how many need further treatment 'later on'? Any stats anyone?! If it works, I'm in favour, but I'm not sure it's being offered to me....so far.

David

User

Posted 18 Mar 2016 at 15:58

David,

I was not deemed to be suitable for Brachy when I asked...

Apparently the size of the prostate... the volume / extent of the disease..... together with Gleason score and PSA level are all deciding factors when considering suitability.

Maybe you should discuss this with your consultant?.... He/ she will be able to advise if you are a suitable candidate

Luther

User

Posted 18 Mar 2016 at 15:59

Hello. Did you read my post above? Consultant at Addenbrookes said if psa remains low after 2 years then 90% chance it's cleared forever Other half was told he could have brachy up to psa of 15. But it varies I think on hospital.

I know it depends on how much cancer is in the prostate.

Edited by member 19 Mar 2016 at 14:08 | Reason: Not specified

User

Posted 18 Mar 2016 at 16:51

David

By now I expect your brain is going into overload.

"""I'm really struggling here. 50-60% chance of ED with surgery. ..and I've only been married 6 years...not fair! How is ED with RT and whatever MAY be needed in a few years?

You do not need an erection to have intercourse with a women and if you are lucky the experience is out of this world.

Hopefully you spoke to one of the site nurses as I feel some information given in this convesation contradicts prostatecanceruk and cancerresearhuk information regarding RT treatments and ED.

All treatments can carry risks and not all potential side effects are guaranteed. I looked at various options before my treatment and picked surgery with the hope of cure but knowing I still had options if it failed.

I am probably the worst advert for surgery (read my profile) but 4 days post catheter I was almost dry, CJ was dry from day one so was Fozzi Bear, quite a few others have been dry within a few weeks.ED is still work in progress but it is fun trying to find the right solution.

Once you have decided on your treatment you might then wish to research your surgeon or oncologist.

I wish you well with you choice of options.

Thanks Chris

User

Posted 18 Mar 2016 at 17:36

Originally Posted by: Online Community Member

You could be lucky but for me

RT 2005 -HT 2004 to 2008 ED is still an issue

Ray

User

Posted 18 Mar 2016 at 18:14

Not sure I can figure intercourse with ED....?

User

Posted 18 Mar 2016 at 18:49

)Hello David and a belated welcome from me (was on holiday)

I see Brachytherapy has been mentioned but I don't think it was specified which kind as there are two.
) ?
Was it high dose (temporary) or low dose (permanent seeds

We can't control the winds - but we can adjust our sails

User

Posted 18 Mar 2016 at 19:10

Hi Ray, sorry to hear that about your ed, I was only quoting what others have said before me as I have no experience apart from my ed now since Feb 2015. Knowing my luck it will be an issue with me as well but being 66 now and still years to,go,before clear,of hormones I would imagine that chance will be a fine thing anyway!!

All the best, regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 18 Mar 2016 at 19:17

Johsan,

Well I'm not sure....I know there are two. Neither were mentioned at my diagnosis but I will see the Radiotherapy consultant on Monday and ask if it's a possibility, rather than Beam RadioT. I'm just in more confusion than I was up till yesterday, since the surgeon today said he could feel a slight hardness whereas the other 4 DREs could not, so he says one nerve will go. That I was not expecting, so I am now less keen on surgery even though it may be 'best'. Nightmare.

David

User

Posted 18 Mar 2016 at 19:30

David

Not sure where you live but you mention Addenbrookes so I'm assuming you live around that area. I noticed Man with PC mentioned HIFU - that's something they offer at Princess Alexandra Hospital in Harlow.

Could this be a treatment possibility for you?

Arthur

User

Posted 18 Mar 2016 at 19:56

Hi Arthur,

I am certainly intrigued by HIFU and need to ask about it....I live in St Ives and use Hinchingbrooke too...I am going there on Monday to discuss RT, but I want to discuss Brachy and now HIFU as I don't think either can be dismissed.

Thanks for the tip on Harlow.

David

User

Posted 18 Mar 2016 at 20:22

David

Chris/Woody.

As regards ED its RT nerve damage rather than HT. Feedback from long term guys I know on Zoladex seems to suggest the longer on it the greater ED issues.

However you could be lucky - I sincerely hope so.

Ray

User

Posted 19 Mar 2016 at 15:33

Originally Posted by: Online Community Member

David

Hi David

No stats but my brother had High Dose Rate brachytherapy with a PSA of 14 and a Gleason score of 9. It was contained within the capsule. He also had 20 months HT and, two weeks after the HDR brachytherapy he had 15 sessions of EBRT.

User

Posted 19 Mar 2016 at 17:07

When it comes to RT, from stats I have seen and previously posted, it seems that brachytherapy of whichever form for suitable candidates is more effective than external beam and is therefore becoming increasingly the RT of choice. However, EBRT is still the most widely form of RT given and is likely to be so for some time, not least because there would not be the capacity to treat many men who would have EBRT with Brachytherapy instead. Also, EBRT can be an option where the patient's prostate is not so suited to Brachytherapy or there is a need to treat beyond the Prostate. Sometimes Brachytherapy is supplemented with EBRT. Whether the Brachytherapy is High Dose or seeds the RT is delivered to or very close to the cancer in the Prostate. EBRT deposits radiation all along it's route to the cancer target and also beyond it - more collateral damage and less RT applied to the cancer, so this is part of the reasoning for preferring Brachytherapy where this is a suitable option.

I believe the statement attributed to a consultant that the chance of a man with PSA of under 2 some 18-24 months after RT is 90% unlikely to have the cancer return is a sweeping one and does not accord with the risk I have read about, lectures I have listened to or my personal experience. My PSA two years after RT and with no benefit from HT after the radiation was 0.06 but gradually increased to 1.44 over several years at which point it was agreed I have an MRI scan. A new tumour was indeed found and I had salvage HIFU in July 2015 when my PSA immediately before the op was 1.99. Click on my avatar for more details.

Information on my HIFU experience can assessed here. http://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#post133611

http://www.ahamm.co.uk/prostate/blogdetails.htm Scroll down to video 2 for HIFU

One of the good things about HIFU is that it does not involve radiation and can be repeated in need. However, it is not widely available in the UK and agreeing to have it as part of a trial may be a good way to have it.

Edited by member 19 Mar 2016 at 21:41 | Reason: Not specified

Barry

User

Posted 19 Mar 2016 at 18:33

David I have replied to your PM

Barry

User

Posted 19 Mar 2016 at 19:02

Yes man with PC. I listened to our consultant tell my other half that if psa is still low and under 2 in 18 months time then there is 90% chance it is completely cured. My other half was very pleased. But I told him that's not what I have read online. I read more like 30% chance of it returning (same statistics with all treatment for low grade cancer) I know the return risks are higher if you have a higher Gleason etc.

But that is what the consultant said. I'm not sure how long brachy has been around to compare to the other treatments. I know it is newer that EBRT.

I am sure the consultant must have got his statistics from somewhere.

User

Posted 19 Mar 2016 at 19:17

In my opinion most of the statistics and success rates we read or look up from various sources are flawed anyway...

You have to remember that fewer people are deemed suitable for Brachy in comparison to EBRT and possibly have less disease progression?

Likewise the same can be said of RT as opposed to EBRT ..... RP is mainly deemed suitable for what is assumed to be contained PCa as opposed to EBRT which is used with HT in some cases for a more advanced diagnosis ...

Luther

Edited by member 19 Mar 2016 at 19:48 | Reason: Not specified

User

Posted 21 Mar 2016 at 17:49

Well today it was the turn of the radiotherapy man to talk to me. Brachy is on my option list as finally I saw my mri report and it's within the gland. I insisted on being referred to Harlow for consideration of HIFU which has to be my favoured option if I am accepted. Hope so, ad options are open if it fails.
Thanks for everything so far.
David

Edited by member 21 Mar 2016 at 18:39 | Reason: Not specified

User

Posted 30 Mar 2016 at 11:13

I hope all had a good Easter...a few days break for me from all this...back to it now.

So, I have a meeting with the potential Brachy man on Monday, then with a HIFU man on Wednesday. Lastly, I am hoping to get referred to the surgeon at the Lister Hospital in Stevenage as I have had good reports about him, as a second opinion on possible RP.

It will then be up to me to put all the pieces of the jigsaw together. You guys have helped so far!

My fear is choosing the wrong option: I am 56 so if I don't have RP there is longer for it to return. Stage 2a, one side only, all contained(hopefully), no symptoms etc, Gleason 3+4, but PSA 13. If I do have RP, then having certain side-effects so 'young' seems harsh. Balanced against maybe HIFU/Brachy doing the job...or NOT doing the job enough for the future, and maybe preventing surgery later.

Very tough call.....

User

Posted 30 Mar 2016 at 16:58

Hi. When I read statistics of the cancer returning, they were similar with the 3 main treatments. (RP, EBRT and brachy) but obviously if you a radiotherapy type treatment and it returns then you cannot have more radiotherapy. Whereas with prostate removal there is radiotherapy to fall back on. Though the brachy man didn't actually tell us that if the cancer returned then no more radiotherapy can be done. I have read it since. All he said was "it won't return"'got to look on his positive side I guess.

It is a hard decision to make. All the best.

Edited by member 30 Mar 2016 at 20:48 | Reason: Not specified

User

Posted 30 Mar 2016 at 17:39

I think I have already made this comment to you DW but will say it here just in case.

Statistically, anyone who needs salvage treatment of any kind is less likely to achieve remission in the long term. In other words, there is no such thing as a second bite of the cherry. If that is true, it is important to choose the treatment most likely to be most successful - it is flawed thinking to settle for a treatment on the basis that if it fails, there are still other things to go for.

Of course, once you have worked out which treatment is most likely to result in a cure, you then have to decide whether you are willing to accept the potential risks of that treatment. Some men will opt for a treatment which has less potential for permanent side effects accepting that the chance of full remission may be a little lower.

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

User

Posted 30 Mar 2016 at 20:52

Not so sure about second bite of the cherry. A distant family member had prostate cancer return 3 times over many years. He had 3 different lots of treatment and did not die from prostate cancer. (I have no other details just that it returned many years after treatment on 3 occasions) perhaps he was very lucky.

Also Lyn you say some treatments are less likely to cure. When I researched I could only find the same statistics (30% chance of recurring with low grade) for the 3 most common treatments. I could find no statistics stating either as better. Not sure where I missed the information.

Edited by member 30 Mar 2016 at 20:55 | Reason: Not specified

User

Posted 30 Mar 2016 at 21:53

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

User

Posted 30 Mar 2016 at 21:58

I think your example of the distant family member sort of proves my point, three treatments but he never got a cure. I was making a generalisation - some men do get to full remission after salvage treatment. But all the research says that once the first treatment fails, the chance of further treatment fully eradicating the cancer is greatly reduced.

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

User

Posted 04 Apr 2016 at 12:41

Hi Arthur

Thanks for the tip re Harlow...I now have an appointment there this Wednesday to discuss HIFU treatment. My worry, with whatever I choose, is that it will return!!

David

User

Posted 04 Apr 2016 at 13:43

I think is always a worry David. I spent a lot of time looking at the various treatments open to me - surgery, high dose brachytherapy, convential radio therapy and the more recently available "dose painting" radio therapy. I have chosen the latter. A key factor for me was the possible side effects and this tilted me away from surgery. It's natural to revisit your decision and wonder if it was the right one.

Of course, with any cancer, there is always the possibility of recurrence but I think it is advisable to think of the positives. Even if it does return, modern treatments can give you many more years of useful life.

All the best

Peter

User

Posted 18 May 2016 at 09:57

UPDATE

Well, after last week's RALP I kept quiet just to have a break, to be honest!

It went well, so I was told, and the frozen pathology during the surgery showed clear margins to keep both bundles. If I hadnt had it done this way, at this hospital (patholgy during surgery) I would have lost one bundle, for sure. Lymph nodes taken as promised.

A week has gone and catheter came out yesterday. I was surprised I didnt gush at once, but in fact held on till I had to go 1-2 hrs later, and controlled it, so we will see. A dry first night.

A shorter penis for sure, but it's early days. They have given me cialis but not to use it for 3 weeks...?

Being the worrier, my fear is the lymph nodes are psoitive. The MRI says not. Surgeon said 18% chance with my stats of being positive, which is why deciding NOT to choose HIFU was probably correct.....what would happen if my nodes are positive, using HIFU?

So we will wait and see, but apart from the pain in that one hole (sneezing or coughing BURNS!!), I'm doing ok, and thank you all.

David

User

Posted 18 May 2016 at 12:44

Hello again David.

Glad that's over and done with for you. Good signs with the catheter removal - long may that continue.

I'll let the men answer the shorter penis bit since they can word it much better than me, but I know that there are exercises that can be done. Something about "swinging" I think !!!!?

Keep a positive attitude on the lymph nodes. Concentrate on getting over the op for now and deal with the other aspects IF you have to.

All the best

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 09 Sep 2016 at 07:21

Well, here we are in September. I got continent quickly after the op in May, ed still total, and the lymph nodes were clear. But there was a bit gone into the seminal vesicles so I ended up with T3b. Blast. Anyway, first psa in July was <0·02, which was brilliant.
Second psa result yesterday 0.04. Bit surprised. All was well removed so surely any rogue cells that had already escaped had had many months or even years to produce some psa, but clearly had not through to July.....yet 8 weeks later have done?!
Strangley, I had seen the RT man the day before this result, in case rt was needed down the line. He said, on hearing the slight rise, that it could be a blip, and could settle down again, especially as it is still 0.0x
So a discussion, and another psa in 6 weeks. He says 3 rises are needed and rt would only happen if we get to 0.2, or close to it. If the 0.04 is genuine, then it looks likely I will be going down the rt route, which is a real blow.....

David

User

Posted 09 Sep 2016 at 08:20

After twelve months of consistent 0.03 PSA results the 18 month test was a disappointing 0.06. The next two tests came back at 0.04 and 0.05 so at least a fluctuation and not a steady increase.(This is an extract from a previous post).

March this year was 0.07 and June was 0.13. Next PSA is just over two weeks away.

Hope yours turns out to be a blip.

Even at 0.06 my medical team kept saying it is still low and may have been caused by all the urethral procedures.

To follow on from your questions in another conversation I agree with B the less sensitive test may cause less anxiety, but provided you can get some consistency in your tests, it potentially can show a trend. With the less sensitive test I would have been classed as undetectable for two years and then detectable.

Thanks Chris

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