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Is my Dad's cancer back?

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User

Posted 20 Aug 2018 at 10:47

Hi all

My Dad was diagnosed with prostate cancer around 7 or 8 years ago. He had surgery and we hoped that had sorted it.

However, 4 years ago we realised it hadn't and he had to have further treatment. This time it was radiotherapy.

I spoke to my Dad yesterday who told me he's got some pain, he thinks it may be related to his lower bowel. He said it's difficult to describe but it's right across the bottom of his stomach. He got this a few months ago but the pain went away so he thought nothing further of it.

He started getting the pain 4 days ago and it's still present. He originally thought he may have eaten something bad, but says he's now getting a bit worried. It's very unlike my dad to tell me he's worried about something so it's unsettled me slightly now.

He's booked into the doctors this afternoon and of course we won't know for certain what's wrong until he's seen them. For now I'm trying to think positively but has anyone got any experience of anything like this? Do you think it's likely it's come back again and if so do you know what his options will be from here? considering he's already had surgery and radiotherapy.

Thank you for taking the time to read this.

Sam

Edited by member 20 Aug 2018 at 11:26 | Reason: Not specified

User

Posted 01 Jul 2019 at 11:49

Hi all

Further to the above from last year, everything has been ok with my Dad's PSA levels for quite some time and his levels remained at 0.02 which was great.

However, 3 months ago his PSA results came back to say it had doubled to 0.04. I appreciate this is low but the fact his levels doubled is slightly worrying, especially after already going through the operation and the radiotherapy already as well.

He was advised they would do another PSA test in 3 months to see whether it was an 'incorrect reading' or whether in fact his levels were increasing.

He has now had these results back today which confirm they've now increased to 0.05.

So, the rise is minimal and his levels are still 'low', but there is a consistent rise so he is due to speak to the oncologist later this afternoon as to how he proceeds from here.

Does anyone has any experience of anything similar to this?

Edited by member 01 Jul 2019 at 12:46 | Reason: Not specified

User

Posted 03 Jul 2019 at 07:17

Thanks Lyn.

We can of course only go on what the professionals have told us, so as it stands we're waiting for the MRI date and will go from there.

I would be over the moon if what you say was right in regards to my Dad settling into his new 'normal', but this isn't what we've been told so I guess we'll have to wait and see. We should know more very soon hopefully.

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User

Posted 20 Aug 2018 at 13:12

More likely that he either ate something bad, picked up a bug or is suffering some radiation proctitis - the damage to the bowel from RT can often only appear years later.

Has he been having his PSA tests regularly? Has the number been rising? PSA is usually how you know that the cancer is back - not a bad belly.

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

User

Posted 20 Aug 2018 at 13:30

Thanks for your response.

He is still having PSA tests, I believe these are every 6 months at the moment. The last time he had a test his levels were minimal which appeared to show the radiotherapy had worked as it should.

Not long until he's at the doctors now (2 hours to go), but he just doesn't think it's something he's eaten as he isn't going to the toilet anymore regularly than normal, he just seems to have a pain.

Thank you for coming back to me anyway, I appreciate you taking the time to do so.

Fingers crossed you're right and all is well, we should know for certain soon enough!

User

Posted 20 Aug 2018 at 16:02

Certainly needs to be investigated but much too early to determine cause until more thoroughly explored.

Barry

User

Posted 20 Aug 2018 at 18:41

Hi Barry

He’s been to the doctors this afternoon. They’re getting him back in on Wednesday for some blood tests to find out the exact cause.

They actually said they think it’s a urine infection, but we’ll know more once the blood results are back.

So at the moment it looks like we were worrying for no reason and fingers crossed that’s confirmed soon!

User

Posted 01 Jul 2019 at 11:49

Hi all

Further to the above from last year, everything has been ok with my Dad's PSA levels for quite some time and his levels remained at 0.02 which was great.

He was advised they would do another PSA test in 3 months to see whether it was an 'incorrect reading' or whether in fact his levels were increasing.

He has now had these results back today which confirm they've now increased to 0.05.

So, the rise is minimal and his levels are still 'low', but there is a consistent rise so he is due to speak to the oncologist later this afternoon as to how he proceeds from here.

Does anyone has any experience of anything similar to this?

Edited by member 01 Jul 2019 at 12:46 | Reason: Not specified

User

Posted 01 Jul 2019 at 14:59

Unfortunately, once you have had PCa regardless of treatment(s) there is always the possibility that there it may recur in months or even in many years time as some men on this forum have showed. Where a few cancer cells have escaped the knife or RT or were radio resistant this can happen. This can require further treatment to again push back the advance of the disease.

However, there are a number of reasons why PSA can fluctuate and with such a low PSA Dad's consultant may want to await a further PSA test before initiating further treatment or tests. Due to Dad's imminent appointment ,he will soon know how his Consultant views it but meanwhile unless told otherwise he has not had a recurrence of cancer.

Barry

User

Posted 01 Jul 2019 at 15:20

Thanks Barry, he's due on the phone any minute so we'll see what the recommended next steps are very soon.

User

Posted 01 Jul 2019 at 16:28

Hi I would be very surprised if there were any next steps apart from more PSA tests at three or maybe 6 months. 0.05 could still be in the ‘cured’ range as the numbers are so low and variation at the level is a real possibility.

My PSA following RP and RT 6 years ago has risen to 0.12. But they are just monitoring it by PSA tests. Next one in December which I am in agreement with

Bri

User

Posted 01 Jul 2019 at 19:07

Thanks for your response Bri. Unfortunately, there are next steps in this case.

My Dad has been over tonight after speaking to the consultant.

In short, they have confirmed that of course the levels are low but they’re very concerned about the rate it’s increasing. In usual circumstances they said they wouldn’t be having this conversation with the levels as they are, but due to the quick increase they are concerned.

He’s having an MRI scan within the next two weeks to try to locate exactly where it is.

If they manage to locate it (unlikely due to the low levels) then he has the option of a treatment to try to get rid of it, although there’s no guarantees. He didn’t go into exact details of the treatment but will do if they locate it. I think it’s called hifu treatment or something.

If they don’t manage to locate it then he will have testosterone suppressants.

Edited by member 01 Jul 2019 at 19:31 | Reason: Not specified

User

Posted 02 Jul 2019 at 01:13

If the cancer cells are seen to have concentrated in one location it might be possible to treat with HIFU (High Intensity Focal Ultrasound) depending on location. I had this procedure for failed RT but still have a Prostate. I now have another very small tumour in my Prostate which cannot be treated again with HIFU because it is too close to the rectum which could lead to other problems. Should my PSA continue to rise I will be offered Hormone Therapy (HT) to treat systemically.

HIFU is administered by inserting a probe in the rectum and focusing ultrasound on the tumour which causes it to heat to the point that it destroys the tumour. HIFU is nearly always done under anaesthesia although is occasionally done using an epidural alternative. If Dad is going to have HIFU, let us know and I will give you link to my experience of it.

Barry

User

Posted 02 Jul 2019 at 06:17

Thank you Barry, that's really helpful. I shall let you know if he's going to have HIFU.

User

Posted 02 Jul 2019 at 08:20

Wow they certainly seem to be proactive. But again a rise from 0.04 to 0.05 across 3 months doesn’t seem that significant. You state if hifu is not possible they will start HT. obviously they are your dads clinical team and he has to be advised by them but his PSA levels seem very low to be starting HT.

What part of the country are you in? I will follow your posts with interest

Bri

User

Posted 02 Jul 2019 at 08:32

We're in Peterborough, Bri.

You're right, a rise from 0.04 to 0.05 in 3 months doesn't appear to be a huge rise on the face of it but they expressed concern about the speed it's rising. All I can say is what he has been advised, he was <0.02 and then it went to 0.04 3 months ago and now it's at 0.05.

If he has HIFU he's been told will go to a hospital in London for it.

I don't think he's particularly keen on the idea of HT but he will of course do whatever is necessary.

In all honesty, he seemed a bit shaken and upset when I saw him last night and it's extremely rare that I've ever seen him like that before so I don't know if he's keeping something from me anyway. I think he was hoping his levels would be back to <0.02.

He does tend to keep certain details from me (I think he's worried about how I will deal with it). As a bit of background, my Mum was diagnosed with breast cancer when I was 13, I lost my Mum three days before my 17th birthday and that sent me off the rails a little bit. I'm now 31 so it's a completely different time of life for me but Dad's prostate issues have been going on since I was around 23 so cancer has been an almost constant thing for me since a young age. I know he keeps certain things from me even though he doesn't need to, but I'm positive he lets me know anything important.

Dad's consultant did say that they usually wouldn't be having this type of conversation with him or even discussing these options with his levels so low, but due to him already having surgery so having no prostate and also having had radiotherapy, they are concerned by the sudden rise.

I'll keep this thread updated as much as I can.

Edited by member 02 Jul 2019 at 09:30 | Reason: Not specified

User

Posted 02 Jul 2019 at 10:25

If Dad does have HIFU in London, particularly if is on the NHS, it is most likely to be at UCLH where I had mine and they have the most experience of this procedure. A prerequisite is the need to attend a preop for various tests to ensure a man is considered able to take the anesthetic and has no other problem that would rule the procedure out. I walked about shortly after the op but they provided overnight accommodation as you must not drive for 24 hours afterwards.

Barry

User

Posted 02 Jul 2019 at 10:46

Thanks Barry, yes it would be on the NHS so I would assume it to be at UCLH. We'll know more after the MRI scan.

Not driving wouldn't be a problem, Peterborough has a direct line through to Kings Cross on the train and UCLH is only a short distance from there so I could get Dad there and back with ease without having to stay, unless he needed to stay of course.

User

Posted 02 Jul 2019 at 13:29

Thanks Sam and sorry you have had to deal with both parents having cancer at such a young age.

I am keen to see developments as I and some others on here are in a similar position to your dad ie RP then RT and low PSA for some years but then suddenly rising. Mine got to <0.01 but then in 7 months had risen to 0.08. Just over 3 months later 0.12 but stayed at that at the next test 4 months later. My oncologist said scans would not show anything at such low numbers and treatments would not start yet as(in their words) the sooner it starts the sooner it stops working.

I am going to do a bit of research about HIFU now

Good luck

Bri

User

Posted 02 Jul 2019 at 13:45

I'll have a read up about HIFU tonight as well when I get a second.

I really do appreciate the help. Now I know you and others are interested in how this progresses I will certainly do my best to keep you updated.

User

Posted 02 Jul 2019 at 19:17

Is it definitely 0.05 and not 0.5?

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

User

Posted 02 Jul 2019 at 20:03

Hi Lyn, yes it’s definitely 0.05.

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