Dad's cancer is back

User

Posted 28 Feb 2019 at 14:41

Hello all,

I’m hoping for some advice and comfort.

I joined this site originally in 2012, when we found out that my dad, then aged 75, had been diagnosed with prostate cancer. Gleason score 9. PSA 16 at diagnosis. He has a strong family history of prostate cancer, which made him ask GP for test in the first place, he had no symptoms.

After all the usual tests, thankfully no spread detected and Radical Radiotherapy started in June 2012 (every day for 6 weeks, Monday to Friday), after an initial 3 months of hormone treatment. 3 years of hormone therapy followed thereafter – injection every 3 months.

My dad responded very well, with few side effects, lived life normally. PSA score went down to 0.02 from memory and stayed low. He had regular check-ups, blood tests etc. over the years and lived life to the full.

He has other health issues, which also need regular monitoring (liver cirrhosis from non-alcoholic fatty liver disease, which he has been aware of and monitored for 10years+). He is a widower and my brother and I keep an eye on hospital appointments and tests, etc. but don’t hassle him too much as he wants to live his life as freely as possible.

Recently (early November 2018), my father has returned from spending some time abroad (approx. 7 months) and we suddenly realised that he has not had any prostate check-ups in a while. My brother and I could not find any upcoming appointment letters etc. for him. We encouraged him to see his GP immediately to explain the situation, who quickly arranged for a blood test, which has shown that PSA level has risen to 28. He was urgently referred on for further tests. In the last 2 months he has had a prostate biopsy, which showed no cancer in any of the samples. A bone scan (clear), an MRI test, and a CT scan, which shows enlarged lymph nodes near the pelvis area.

He has just started a 21 day course of Cyproterone Acitate tablets (x3 per day) on 27 Feb 2019 and then 3 monthly Zoladex injections, the first one of which is scheduled for 11 March. He has a follow up with oncology team on 26 April 2019 and we will see then whether PSA drops. The consultant mentioned chemo down the line but we were all pretty frozen on the day and didn’t ask any further questions re possible radiotherapy to lymph nodes etc.

He is now just turned 82, in robust heath, is very active, swims x 2 per week, goes to gym classes etc. and is very socially involved. What can we expect please? I want him to live a long, happy, active life and am scared that this will now not happen. He has liver issues which I fear may stop further treatment options down the line.

Thanks for any replies,

User

Posted 28 Feb 2019 at 23:08

How interesting that you are taking completely the opposite stance to my family, my dad being the same age as yours. I think at 82, he has already lived a long and happy life and so decisions about how best to extend that become a balance between treatment and quality of life. My dad dances 5 times a week and does long distance hiking, etc so has decided not to have any treatment until his doubling time is below 6 months which the uro predicts will be in about 10 years.

Radiotherapy to the pelvic lymph nodes is unlikely as he has already had his maximum dose and although there doesn’t seem to be any evidence at the moment that there is cancer in the distant nodes, if there was then RT would not work. There is a really good chance that the HT will control your dad’s cancer for many years.

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

User

Posted 01 Mar 2019 at 00:00

Hi Rosa, I don't know much about this but he's done well, at 82 over 7yrs since radiotherapy with Gleason 9. If he only has signs in his lymph nodes could they be removed or are they a sign of something elsewhere. Removing lymph nodes if they know which ones doesn't seem too arduous. There could be other forms of more pinpointed treatment to the lymph nodes.

User

Posted 01 Mar 2019 at 03:07

Sorry to learn Dad's situation. It is of particular concern that having had a low PSA for several years it has now up to 28. MRI like other scans does not always show cancer. You don't say whether the biopsy was a TRUS one of about 12 cores or a Transperineal Template one that is a more wider embracing one which is more likely to find any cancer in the prostate than the TRUS one. Sometimes some greater precision RT can be directed at a very small number of lymph nodes but there are limits. A PSMA scan if Dad had one of these, either within the NHS or privately may well show the extent of the cancer and show whether RT delivered to a couple or so nodes is worthwhile. It is also worth asking about the possibility of removing a few lymph nodes if shown to be cancerous but apart from other considerations, the number and location could make this not viable. Much depends on Dad's attitude to having more radical treatment (assuming this was offered). If further RT or surgery is ruled out, it's systemic HT and maybe at some stage Chemo.

Barry

User

Posted 27 Apr 2019 at 17:26

Hello again,

I wonder whether anyone has any thoughts on what may be happening to my dad.

As per my earlier post, he has just started (on 11 March 2019) further hormone treatment (zoladex every 3 months), as his psa was found to be high, initially 28 in Nov 2018, then up to 31 in feb 2019 and then by the time he started the hormone therapy, was 40. We have never had this in writing from the hospital, just looking back on notes i had made. His prostate seems clear of cancer after having a biopsy, as do his bones but he has suspicious looking lymph nodes (not sure where they are located in the body though).

He’s gone back for a follow up appointment on 26 April and we are really shocked to be told that his psa is now at 163. I really thought that after commencing the hormone treatment it would have lowered.

Am now very worried what this may mean. He feels very well in himself, as he has always done really.

Any ideas please? He has another blood test and appointment in approx 4 weeks and I will go with him to that one as I was unable to attend this one.

What should we be asking? My dad said that the consultant seemed vague and was not too sure what was going on. Has asked for a urine sample to check for infection, i think. Would this be possible? My dad shows no signs, no blood, no fever, no pain when peeing etc.

Am very scared of what this means, feeling very low and scared for him, he just wants to live and carry on enjoying his life and I thought he may have a few years of this left. Now not so sure.

Rosa

User

Posted 27 Apr 2019 at 18:00

I'm trying to put the timeline together from what you've said.

If i understand correctly, A PSA test after 6 weeks on Zoladex is significantly higher. If the Zoladex was working, it should have dropped significantly. I'm not familiar with the use of Cyproterone Acitate, but I presume it was to prevent the testosterone flare which happens when starting on Zoladex reaching the prostate cells. Was there an overlap of the Cyproterone Acitate and the first Zoladex injection of 1-2 weeks?

He probably had hormone therapy when he had radio therapy before. Any idea how long for?

It could be that the cancer that remained became resistant to hormone therapy last time, or at least that particular hormone therapy. There are others they could try, but they usually don't work for a long time.

It could be that the Zoladex injection didn't work - a testosterone blood test would show that.

It could be that if there was no overlap of the Cyproterone Acitate and the first Zoladex injection, the testosterone flare which wasn't blocked, and will cause a temporary burst in PSA, but probably not 6 weeks later. (I don't know how long Cyproterone Acitate continues working when you stop taking it.)

It could be a prostate infection or UTI, hence urine test. They don't always have any symptoms (and UTI symptoms are not at all what you might expect - tends to look like confusion or dementia).

I think I might ask for a testosterone blood test to check if the Zoladex has stopped testosterone as it should have. I might also ask for a PSMA PET scan to see if they can find where the cancer is - you probably won't get that on the NHS, and it's around £2500 privately. Alternatively, you could try asking for a Choline PET scan on the NHS - not quite as sensitive, but very similar.

If a scan shows it to be a small number of lymph nodes, they might be prepared to try salvage radio therapy on them.

By the way, your dad can ask for his hospital records, if you want to get accurate info on PSA (and other blood test) results. I always ask for mine. They have to supply them within 30 days.

Wishing you the all best for tomorrow.
I always write down a list of the things I want to ask, and go through them in the consultation. The consultants are all fine with this. My current consultant even takes the list, and writes the answers next to the questions.

Edited by member 27 Apr 2019 at 18:03 | Reason: Not specified

User

Posted 27 Apr 2019 at 19:35

Thanks for your quick reply, I really appreciate it.

I’ll try and answer some questions; my dad started the cyproterone acetate tablets prior to the injection, it was a 21 day course and he timed the first zoladex injection for around the middle of that course of tablets. Injection was on 11 March. I believe this was the correct way to do this but am now doubting it.

When my dad was originally diagnosed in 2012, he had 37 doses of radiotherapy and then commenced a 3 year course of hormone therapy, an injection every 3 months. I believe it was zoladex but cannot be 100% sure. It seemed to work wonderfully at the time, doctors very pleased and my dad handled it so well.

I will definitely ask for a testosterone test at the next appointment and also for a copy of his medical records, if possible. I’m really hoping its some kind of urine or prostate infection that’s causing this very rapid rise of psa.

User

Posted 27 Apr 2019 at 19:39

Sorry for the abrupt end to my last post, wouldn’t allow me to see what I had written earlier!

I will also investigate the PSMA scan mentioned, to see if it may shed some further light.

Is this as bad as it looks to me? Simply that the hormone therapy is no longer working and the cancer is now spreading very rapidly? We are just so shocked as We really thought all was going so well. It’s come crashing down around us really.

Thanks for reading and any replies.

Rosa

User

Posted 27 Apr 2019 at 20:41

Hard to say that the hormone treatment is no longer working, when he has only just started again ... more like it hasn’t actually started working yet. How soon after the 11th March was the blood test done?

If it was my dad, I think I would:
- ask the nurse to confirm that it was definitely the 3 month dose he was injected with, and not the one month dose (often the first injection is only for 4 weeks and then it goes to 12 weeks after that) (alternatively, it wouldn’t be the first time on here that a nurse gave the one month dose by accident)
- ask for the testosterone level to be included in his next blood test
- at next oncology appointment, ask about the possibility of PSMA scan and if that isn’t available, push for whatever choline PET scan is available in your area
- double-check that there are no decimal points missing from the scores

You shouldn’t need to ask for his medical records from the hospital; the GP surgery should be able to print out the results for him at reception. Bear in mind that if you do want to see the hospital records, it will have to be dad that requests them, not you - or he can put in writing that he is happy for you to have them and then you can ask, but that takes longer than popping into the GP practice with him.

It is rare, but there are cases of prostate cancer changing to a more rare type that does not respond to hormone treatment. If they can find the tumour clusters with a body scan, they may decide to to a new biopsy to see what kind of prostate cancer it is. Rapidly rising PSA like this often indicates spread to the lymphatic system or to soft organs, in which case he may be asked whether he wants to try chemo. They may also suggest trying a different hormone.

Edited by member 27 Apr 2019 at 20:42 | Reason: Not specified

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

User

Posted 27 Apr 2019 at 21:24

Originally Posted by: Online Community Member

In my area, the GP and the consultant can't see each others' records, or test results. Last time I had a blood test, I had path lab request forms from both and they were analysed from a single phial of blood taken, but my GP couldn't see my PSA result, because that was on the request form from the consultant. The next one will be interesting - again I have two separate forms, but they both asked for liver function tests, so the path lab will have to send those results to two places.

At the initial referral, the GP sent details of my last test results to the hospital. The hospital writes to my GP summarising each consultation (cc'ed to me), but it doesn't contain details like blood test results.

I take all the test results and merge them into a single spreadsheet which has all test results back to 2011, which I take along to all appointments. The consultants occasionally take a copy of it, and I can see those copies have ended up in my hospital records, because I request my hospital records periodically. (I have online access to my GP records anyway.)

User

Posted 27 Apr 2019 at 21:25

Thanks for your replies, really helping me to formulate an idea of what to ask for going forward.

I’ll definitely check with my dads Gp surgery that he has had the 3 monthly injection and not 1 month injection by accident.

Ill also see if they can print off my dads results but he has all his blood tests at the hospital so didn’t think the GP would have this info, I’ll check and see what they say.

I’ll also ask for a testosterone check and for further choline scans.

The consultant did confirm that there is spread to lymph nodes but not how extensive this spread is. I just thought that the hormone treatment would help to stop the spread for a while at least.

I do hope that the hormone therapy just needs further time to kick in; he had the first hormone injection on 11 March and had his next blood test on 17 April. He then saw consultant on Friday 26 April who gave the news of psa of 163. At the next appointment I will check for missing decimal points also.

Thanks again for taking the time to reply with ideas, it’s very much appreciated.

Rosa

User

Posted 27 Apr 2019 at 21:46

Originally Posted by: Online Community Member

This sounds correct - certainly it is in the case of bicalutamide instead of Cyproterone Acitate.

Originally Posted by: Online Community Member

He probably won't be able to get records directly from the consultant, but they should be able to tell you how to do it. The hospital will have a special department for handling those requests (it's called Patient Services at Luton & Dunstable Hospital).

As Lyn says, it could be that in your area, your GP can see them.

Edited by member 27 Apr 2019 at 21:58 | Reason: Not specified

User

Posted 28 Apr 2019 at 01:20

He doesn’t really need his medical records and the delay will be unhelpful. If the GP doesn’t have the PSA results, I am sure that if he asks at the appointment, the consultant or the urology nurse will just write them down for him.

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

User

Posted 28 Apr 2019 at 01:26

“In my area, the GP and the consultant can't see each others' records, or test results. .... The hospital writes to my GP summarising each consultation (cc'ed to me), but it doesn't contain details like blood test results.”

Gosh, it still staggers me how much variation there is around the country. John’s consultant writes to the GP every time we see him, and includes any test results. In the years since the GP practice has been arranging the PSA test the consultant just checks it online when we arrive for the appointment - when there is a rise, it is flagged to both consultants automatically.

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

User

Posted 28 May 2019 at 14:46

Hi all

I thought I would post a quick update, my dad went back for a follow-up appointment on Friday 24 May, he was told that his PSA had risen again, now to 170 (was 164 on 26 April). The consultant confirmed that now it is incurable but they will put my dad on Abiraterone treatment, and have also offered him a place on a stage II clinical trial, for abemaciclib, which he has decided to accept (depending on the various test prior to starting, I guess). He will also carry on having 12 weekly Zoladex injections too.

We were all feeling extremely distressed on Friday during and after the appointment but feeling a little better today. Maybe the shock is wearing off. Not sure what I'm after really by posting, just maybe some stories of hope?

Thanks for reading, as always
Rx

User

Posted 30 May 2019 at 18:53

Hi,

Abemaciclib seems to be an exciting recent addition in the control of breast cancer. It is given in tablet form and appears to be well tolorated.

Also being a stage 2 trial means you will definately get the drug, not a 50/50 chance of a placeabo. If sucessful, it could be a much needed addition to the prostate cancer armoury!

Good luck!

User

Posted 18 Nov 2019 at 15:52

Hello,

A quick question if I may, does anyone have any thoughts/experience to share about starting abiretarone?

My dad started this treatment nearly 3 weeks ago and it seems to have knocked him for six. He has very little energy at the moment, weakness in his legs.

He is eating well and sleeping well but just has zero energy and even seems confused to me sometimes, even his voice seems much weaker to me. Could it be the abiretarone causing this or something else? He seemed much better off the treatment than on it currently and I'm not sure what is going on? Can we expect the weakness to improve?

Any help appreciated.

User

Posted 18 Nov 2019 at 19:22

Have a look at the side effects again. Fatigue is common and legs can feel tired or ache on inclines but if you are at all concerned then ask your medical team straight away so that they can assess what is going on. Any unusual side effects should be mentioned as everyone reacts differently and might depend on any other medication too.

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