Dad diagnosed and being treated for Locally Advanced Prostate Cancer

User

Posted 01 Feb 2019 at 16:42

Hi everyone

I first viewed this site a month ago following some tests my 75 year old dad had after a routine urology appointment for treatment of kidney stones a year ago. It was at this appointment he was asked if he had any other concerns which he pipped up he had been having some issues with urinating (flow) intermittent and weaker than normal.

Now lucky for him the consultant decided to do a DRE there and then and informed him he could feel that his prostate was enlarged so arranged for him to have a blood test to check his PSA levels.

Nothing that at point to worrying!

His PSA level came back at 47 ( not as high as some I have seen recorded on here ) but enough to then have a MRI which did confirm a tumour in his prostate. He had a bone scan which is clear and so are his lymph nodes. Good to know.

On 15th Jan 19 he had the biopsy (16 taken) 13 from one tumour and 3 from another suspicious area. By the 17th Jan 19 he had the call that he needed to see the consultant ASAP for the results. We went along on the 24th Jan 19 to get the official results of which we knew were not looking promising.

He has locally advanced prostate cancer with a Gleason score of 7 grade 3 (4+3) T3a aggressive cancer which has broken out of the prostate gland.

So its not the end of the world (i hope) its treatable and he has already started his HT course of tablets and 1st injection. He has a further 14 days of HT tablets then in a month a 2nd HT injection (3 month dose)

End of Feb will have another blood and flow test to see if the HT treatment has lowered the PSA.

If all that works then onto Radiotherapy for 7 weeks in the aim of killing the cancer. Surgery is not an option as they are not confident if the prostate was removed they would capture of the cancer given they know it has broken out and could be in tissue so undetectable under MRI.

For his age my dad is very fit and in good health. The only complication is that he was born with a hole in the heart, had surgery at 19 to repair which over time has reversed the surgery so does not have a regular heart rhythm and is on various forms of meds to keep his heart functioning as stable as possible.

I want to get as much information on your experiences (good and bad) so that we are fully aware of what we are facing over the next year at least and hopefully many more to come.

I am Michaela (Peter's) daughter.

Look forward to hearing from you x

Edited by member 11 Feb 2019 at 15:13 | Reason: Not specified

User

Posted 01 Feb 2019 at 23:45

Hi Michaela,

In view of your Dad's PCa diagnosis, this is a quite normal way to proceed with HT which helps shrink the tumour and weakens the cancer cells to make RT more effective. The HT can produce a number of side effects varying in intensity from man to man. Perhaps the most notable of which is premature tiredness which I feel can help be mitigated to some extent by being and staying fit. For most, sexual function is affected and for a minority personality changes among other things.

Like some others, I found EBRT, the type your Dad is having, made me yet more tired and during the time I had increased urgency and frequency to urinate, (which gradually subsided until after a couple or so months post RT urinary function was back to pre RT need.

The EBRT is painless. You just lie down while the machine (Linear Accelerator or Linac for short) directs photons as in an ongoing x -ray to the predetermined target. Before the EBRT is given Dad will attend a planning session where very small tattoo dots are made which will help him to be well aligned with the machine when treatment starts. Some hospitals require the man to swallow quite a bit of water and in some cases also have an enema before each session which is called a fraction. (Fortunately, I had to do neither of these), The HT is usually continued after the RT these days for anything up to 3 years or even longer if considered necessary.

There are too many variables to know how successful Dad's treatment will be in the long term but he will be monitored and any further treatment offered as necessary.

The 'Tool kit', which can be downloaded or a hard copy obtained from the publishing section of this Charity contains a lot of useful information, even for those that have already made their treatment decision and I recommend you obtain it.

Hope all goes well and if you have any general questions we will try to answer and/or you could contact the specialist PCa nurses on this site.

Barry

User

Posted 11 Feb 2019 at 16:18

Michaela, my diagnosis 12 years ago was rather worse than your Dad's and I'm still going strong at 75, so don't worry. He has many good years ahead of him! The appointment is almost certainly to set up the radiotherapy, which will involve a bit of dot tatttooing on his abdomen followed by 20 or more regular sessions on his back in a big white space age machine for a few minutes whilst the PCa is zapped from all angles.

All quite routine.

User

Posted 11 Feb 2019 at 17:04

Michaela,

You are of course naturally concerned about the treatment your father is having and of it's likely success. However, as I said in my previous reply, "There are too many variables to know how successful Dad's treatment will be in the long term............." It has been said that there are at least 27 types of PCa and some are more aggressive than others but not necessarily exhibiting what might be considered corresponding PSA figures. Success judged by eradication of all cancer can only be shown after many years. Some men seem to be doing well but then a tumour grows maybe a few months or say 15 years later, so it depends on what you consider success to be. Dad's team are treating him with HT and then RT with curative intent and even his consultant's cannot give an accurate long term individualized prognosis even with all the tools and Dad's histology presently at their disposal, The best they could do is point to statistical tables which for him could be well out of average. These tables are calculated on past experience so do not take into account ongoing advances and refinements of treatment. The success of RT is also dependent on it being able to reach and eradicate cancer cells some of which can be radio resistant. Then there are other further down the line treatments that can give a man more years, some of which can be more effective for one individual than another.

Recently, some men are given early Chemotherapy to help HT and RT and it is possible that this is for discussion or it may be that Dad will be invited to join in a Trial. There are a number of reasons why Dad should be seen - I wouldn't worry about this but Dad's Consultant's Secretary could be asked by him in advance to ascertain.

Suggest you update us and also put Dad's diagnosis under his Bio for easy reference as most members do.

Edited by member 11 Feb 2019 at 17:11 | Reason: Not specified

Barry

User

Posted 11 Feb 2019 at 19:23

He was under urology and had his results from the urologist in January. As he will not be having surgery his case had been transferred to oncology who will monitor the effectiveness of the HT and sort out the RT if he has that.

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

User

Posted 27 Feb 2019 at 15:50

What meds have they put him on for urinary flow? And was he already taking these before his most recent PSA test?Some can reduce the PSA by 50%

Edited by member 27 Feb 2019 at 15:51 | Reason: Not specified

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

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User

Posted 01 Feb 2019 at 23:45

Hi Michaela,

There are too many variables to know how successful Dad's treatment will be in the long term but he will be monitored and any further treatment offered as necessary.

Hope all goes well and if you have any general questions we will try to answer and/or you could contact the specialist PCa nurses on this site.

Barry

User

Posted 11 Feb 2019 at 15:32

Update and advice welcome -

Dad's started his HT treatment (21 tablets) the same day and has also had his 1st HT injection. The tablets finish on 14.2.19 then his next HT injection (3 month dose) is on 27.2.19. He has not reported any side effects such as mood swings etc so that's a bonus.

He has a repeat flow test appointment booked for 25.2.19 so he is hoping that all remains as is, as he has been taking the meds they prescribed to help with his flow which has vastly improved so again I feel this could be masking the real problem, so he thinks he is fine and its all Ok and it wasn't that bad at all when he mentioned it at a routine appointment in Sept 18.

Mum has told me he has had an appointment come through to see the oncology team for 19.2.19 but not too sure why as they did sit with us at the results consultation and went through everything and what the plan of action was going to be.

Is this standard practice? What would this be for and to do / discuss?

I am worrying now that they fear its far worse then they said.

He is taking mum with him to the appointment (shes not the best at taking info in ) so it would be helpful to me if any of you have any advice or you can share with me if this is part of the treatment plan - I am presuming it might be to check how the HT has been going and see how he is fairing etc.

Also I don't want to think or dwell on this question to much but as he has T3a Locally Advanced 4+3 is his prognosis a good outcome if the RT works as they have suggested given his cancer has broken through the outer layer and may of spread to tissue?

Any advice or experience you have will be appreciated .

Thanks

Michaela

Edited by member 11 Feb 2019 at 15:33 | Reason: Not specified

User

Posted 11 Feb 2019 at 16:18

All quite routine.

User

Posted 11 Feb 2019 at 17:04

Michaela,

Suggest you update us and also put Dad's diagnosis under his Bio for easy reference as most members do.

Edited by member 11 Feb 2019 at 17:11 | Reason: Not specified

Barry

User

Posted 11 Feb 2019 at 19:23

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

User

Posted 11 Feb 2019 at 21:41

Hi Michaela, my situation is very similar to your Dads. My original PSA was slightly higher.

I was diagnosed in early 2011 and have had RT and am on my second bout of HT and have a current PSA of 0.17. Check out my profile for my journey so far.

Take care and keep us all posted.

Dave C

User

Posted 12 Feb 2019 at 11:08

Hi Dave C and all

Have read your bio and timelines so gives me confidence that as this has been picked up early and treatment is in full pelt he has a good chance of getting through this. This year will be difficult for him but he is prepd and well read up on what to expect so this should see him through.

Once I get more info I will update on this thread.

Thank you everybody you have such inspirational stories and the support and love you all share through this community is testimony to human kind.

Michaela

User

Posted 27 Feb 2019 at 15:38

Hi all

So just over a month into Dad's treatment for LAPC and he has had a re test of his PSA. In Nov 18 it was 47, as of 19.2.19 this has reduced to 19.87 so heading in the right direction. Appt at oncology same day seemed happy with this result (in your experience is that what would of been expected?) after 21 days of HT tablets and 1st month HT injection?

I know dad is happy and luckily feeling good. It has been a great boost for him.

He had his flow test re done on 25.2.19 which apparently was no worse although he is taking the meds to help with this so maybe could be masking the real flow. He is having his 2nd 3 month dose of HT injection today.

Not now seeing oncology for two months to re asses his PSA prior to planning RT sessions etc.

All in all I feel good news hope you all agree

Michaela

User

Posted 27 Feb 2019 at 15:50

What meds have they put him on for urinary flow? And was he already taking these before his most recent PSA test?Some can reduce the PSA by 50%

Edited by member 27 Feb 2019 at 15:51 | Reason: Not specified

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

User

Posted 27 Feb 2019 at 16:16

Hi Lyn

He is on Contiflo x 1 400 mg a day and has been on them since Nov 18.

So could this give a false reading.

Kind regards

Michaela

User

Posted 27 Feb 2019 at 16:35

Hi M.G.

The active ingredient in Contiflo is tamsulosin hydrochloride which doesn't have any effect on the measurement of PSA.

There is another drug Proscar (finasteride) which is sometimes used in the treatment of PCa which causes a 25% reduction of the measured PSA concentration.

Tom

User

Posted 10 May 2019 at 15:16

Its been a while last my last update on Dad's treatment and I feel pleased that all seems to be going maybe better than we expected.

Dad is now 4 months into Hormone Therapy injections and his last PSA level has dropped from 19.87 to 5.1 great.

He feels good other than hot flushes that occur during the evening and has a very positive approach about all of this.

His flow test was still slow.

The consultant seemed confident that his PSA will reduce enough (below 2) that he will be booking him in for Radiotherapy to start in July.

Radiotherapy based on 20 session over 4 weeks

Is anyone able to tell me how does this compare to others with a Gleason score of 7 4 + 3 advanced prostate cancer?

Is there anything / advice you have I can pass on

We have read all the documents but nothing is as good as first hand experience of what to expect good and bad (if any)

Following this review in October with consultant.

Thanks for your time in reading my thread

Michaela

User

Posted 10 May 2019 at 17:33

Michaela

i was Gleason 9. 5:4 PSA38

I had 4 months Hormone therapy before my oncologists would let me go onto radiotherapy and after four months my PSA had dropped to 8.

I had 20 fractions of radiotherapy in August 2018 after that has finished It is usual you will have to wait eight weeks to let the effects of the treatment subside. In November 2018 my PSA had dropped to 0.5.

I then went on to normal four monthly checks And in March my PSA was 0.2

And in March my PSA was 0.2

I think my treatment Has followed mainly conventional guidelines so I hope this is of help to you

Edited by member 10 May 2019 at 17:36 | Reason: Errors caused by the poor editor

User

Posted 18 Nov 2019 at 16:15

Hi all

So Dad had his RT treatment early Sept 4 weeks - no real issues to report.

Follow up with Oncologist last week to find out next step.

His PSA had dropped from 4.46 to 1.91 so they have said he has responded well to treatment.

Not sure the RT had much to do with this result given he is on HT injections and the PSA has been dropping every 3 months due to this.

He feels good other than hot flushes that occur during the evening and has a very positive approach about all of this.

He has gained around a stone and a half in weight which is now causing extra strain on his heart condition so being cautious about physical exercise.

I am a little surprised that he will not know for sure the full success of the treatment until after the HT stops in 2 years. If his PSA remains below 2 they are happy to just follow up every 6 months via telephone. Is that normal procedure?

Given he has 2 tumours that have broken out the prostate do they not do a re scan or biopsies again to see if the cancer remains contained or not?

Anyone else experienced this

Thanks for your time in reading my thread

Michaela

User

Posted 18 Nov 2019 at 21:56

This is normal. As long as his PSA is dropping or stable, there is no point doing repeated scans and there are risks from unnecessary exposure. He is unlikely to ever have a biopsy again.

Also, he won’t necessarily know in 2 years whether the treatment has worked. They will monitor his PSA 6 monthly for up to 5 years and if all looks okay, will likely drop it down to an annual PSA test for the rest of his life. If he is concerned about only having a PSA test every 6 months, his GP may be willing to arrange 3 month tests in between times.

His cancer is already not contained if it has broken out in two places.

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

User

Posted 18 Nov 2019 at 23:21

HT can keep PSA down so that it is only after this has ended can subsequent PSA tests (and in need other tests) indicate how successful the RT has been. A good result will depend on the RT having reached and severely damaged the cancer cells within and without the Prostate and that no micro cancer cells have escaped to set up elsewhere. This can only be established over time. It works better for some than others but there are other tools in the box if needed down the line. Therefore, consider one step at a time and try not to worry.

Barry

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Dad diagnosed and being treated for Locally Advanced Prostate Cancer

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