which kind of prostate cancer?

User

Posted 30 May 2017 at 11:47

Hi- Here is my background: My father (in his late 60's) was diagnosed with prostate cancer 3 years ago. His PSA was around 12 (though at one point shot up to 40 something) and his gleason score was 4+3=7. It has spread outside the prostate into surround tissue and they thought from the MRI there was possible lymph involvement. He opted for hormone therapy over radiotherapy as he wanted quality not quantity and was concerned about continence issues. His PSA dropped down to 2.2 after a year and has now crept back up to 7.5or there abouts.. His doctor booked him a visit to the oncologist who said that he was fine and wouldnt need more tests or treatment until his PSA went over 10... He was also told that some of his results were higher as they were taken at a different hospital who use a different measuring system so they come out higher???

What I am struggling with is that I live several hundreds of miles away from my father and he does not have any real support where he is should he need it. And I guess I am trying to work out how likely he is to need it.

My children are getting to exam age- so where ever were are in 1.5years we really willl need to stay for 5+ years.. My fathers view is that I shouldnt disrupt my life because of this and we would just have to deal with it at the time... but having recently lost a very close family member to cancer I am concerned he is underestimating the level of support he might need. I love my Dad very much and want to be there for him if he is likely to need supporting- but I would need to be bullish about it as he is fairly stubborn! So I suppose I am looking for advice as to whether this sounds like the kind of PC that you can live with with little ill effect for a decade or so, or if it sounds like it would be prudent to plan for less time, and being around to offer support and care.

I know I have rambled and this really is a 'how long is a piece of string' kind of a question- but I thought perhaps some of you might have more experience of string than me! xx Thanks for listening.

User

Posted 30 May 2017 at 16:55

I think it is going to be really hard to answer your question - partly because it seems to me that either you have a bit of the story missing or your dad has chosen to give you some of the information rather than all. Do you know which hormone he is on, and do you have the last few PSA results rather than just the recent 7.5? Do you know exactly which 'surrounding tissue' was affected? And has he had a scan recently?

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

User

Posted 30 May 2017 at 17:17

Hi Lyn, thanks for getting back to me. I don't have a record of what the exact PSA results have been, irritatingly I have not had the foresight to write them down. The hormone therapy is Prostap every three months... He has not had any scans since he was diagnosed. I don't know exactly where it had spread to - just the surrounding area- but I don't think this was hugely extensive. I expect I am asking an impossible questions, but thought I would ask incase any one had anything that illuminated the situation for me xxx

User

Posted 30 May 2017 at 18:33

Personally, I don't think I could contemplate making house move decisions based on dad. We have had members on here with similar diagnosis who have still been around, fit & healthy 10 years later. There are also men for whom the hormone treatment never works or only works for a couple of years. That is why the PSA results would be helpful - PSA that is rising slowly may just need an extra hormone adding at some point (sounds like the onco is thinking about when he gets to 10) and the PSA often comes back down for a good while. If the PSA is rising quickly then it becomes more likely that HT will fail sooner rather than later and then you are into the world of chemo and the newer breeds of hormones that work in a different way to Prostap.

How able are you to drop everything for a few weeks if necessary? There are exceptions but many men do not need 'care' until they get to their final days. If it had escaped the gland but not invaded any local organs then he may be around for much longer than if it had spread to his bladder, for example. Even if dad's treatment failed sooner rather than later, the end stage is different for each person. My father-in-law went from absolutely fine to dead in about 48 hours; if dad's lymph nodes were affected then lymphodema and eventually heart failure would be the thing to look out for. If he needed chemo at some point you might only need to travel to stay with him for a couple of days every three weeks.

If you haven't done so before, perhaps make sure you are there the next time he has an onco appointment so that you can ask these questions. Alternatively, you could ask dad to ask the GP to print off a list of all PSA tests to date plus copies of the onco letters.

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

User

Posted 30 May 2017 at 20:36

Although Dad rejected RT earlier, if he would now consider it, it might be worth asking the onco if this was still an option, although as a main treatment, consultants prefer to have given it earlier when HT brought the PSA down and before the PSA starts to rise appreciably. Most men cope well with RT, although ED can become more of an issue and in a very few cases it may lead to problems in the long term. In some cases treatment(s) can delay the advance of the cancer but much depends on which type of prostate cancer a man has and the ability of the cancer to get round this. I would think a frank discussion with Dad's onco on the best way forward in his situation is worthwhile. It is possible that various other HT options or combinations thereof with perhaps Chemo and other drugs may still give him quite a few years along the line but this is almost impossible to forecast with any degree of accuracy at this point in time.

With Dad's sort of PSA level I would not have thought the difference between assessments from one center and another would be so different as to make an appreciable difference.

Barry

User

Posted 30 May 2017 at 21:42

Thank you both so much for this. I think even just having someone to ask is a bit of a weight off- its been buzzing around my head so much... I think that it sounds like a good idea to go to the next oncology meeting with him and see where we get to... Lyn it is good to hear your views on 'care' not always needing to be constant- I have three children and am self employed- but can see how when you put it like that it might well be all a mangable without a move, even if things weren't looking so positive. Barry also really appreciate your take on the results not being appreciably different. A problem shared is a problem halved... thank you :)

User

Posted 13 Jun 2017 at 13:45

Hi... I thought I would just post a little more information, as my Dad has shown me a letter from the oncologist and some PSA results.... I am not sure if anyone will be able to specualte on these but thought I would post for continuity.

So on the oncologist letter it says at the top :

PSA 44

Gleason 4+3=7

Stage T3a N1 M0

On LHRH antagonists since diagnosis Dec 2013

I am guessing that was his PSA at the time of diagnosis, as it is now much lower... The oncologist letter says he was offered another consultation which he has gracefully declined (not sure what this is about he hasn't mentioned it). He also said he won't need to see him until the PSA is over 10 with a doubling time of 3 months.

Here is a list of his PSA results, but only some known which measuring system we are using... I find this very confusing to get an idea of doubling time etc, and it makes little sense to me :

March 14 9.2 ng/ml

June 14 5.3

Oct 14 4.9

Jan 15 5.4

April 15 4.5

July 15 6 microg/l

Aug 15 2.7ng/ml

Oct 15 3.77

Jan 16 3.38

April 16 2.52

July 16 2.26

Sept 16 3.4microg/l

Dec 16 5.52microg/l

Feb 17 2.5ng/ml

March 17 6.35 mircog/l

June 17 5.5ng/ml

Woner if anyone can make any sense of that what so ever! Thanks for listening xx

User

Posted 13 Jun 2017 at 18:52

Okay so assuming he is still taking the hormones, his PSA is bouncing around a little bit but is fairly stable when seen in the longer context and there is no reason to think he is going to die any time soon. The PSA doubling time is at the moment very long, it may take him another 2 or even more years to get to 10 and when he does get to 10 they are likely to just add another kind of hormone - quite a long way off being hormone refractory and needing some more radical treatment.

Have you asked him why he declined follow up appointments?

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

User

Posted 13 Jun 2017 at 18:58

PS microg per litre is exactly the same as ng per millilitre so does not make the reading higher or lower. It is like saying you have a litre of wine or 100 centilitres of wine or 1000 ml of wine.

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

User

Posted 13 Jun 2017 at 20:49

Lyne,

Thanks so much. This is extremely helpful and relaxes me no end. Many thanks for your time.

M xxx

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