Help! Any reassurance out there?

User

Posted 24 Nov 2015 at 17:09

My husband was diagnosed with locally advanced prostate cancer on Xmas Eve 2011. Although he had no symptoms his PSA was 229.

After 3 years of "hell" involving chemo, radiotherapy and 3 monthly hormone injections, his PSA came down to 1.42 and the consultant took him off the hormone treatment so that his body didn't get resistant. Blood tests in April and August showed slightly raised PSA (which apparently is normal after stopping the hormones) but PSA presented at 10.8 in October.

GP thought it was prostatitis so he has been on a course of antibiotics but was sent an emergency appointment to see the oncologist. On 6th November he had another PSA test and today has the results which shows PSA of 16.67, despite being on antibiotics for a month. Scan booked for 7th December and consultant appointment booked for 9th December.

I was just wondering if any of you have experience of PSA going up with prostatitis but after treatment. He hasn't had any scans since finishing his treatment in August 2012 so I am now thinking the dreaded big C has returned. He is extremely tired most of the time, to the point that he is close to tears by the time I get home from work. He is in bed by 9pm each evening and gets a good 10 hours sleep but is tired again by 12pm the following day. Surely this tiredness should have gone by now, it can't still be related to the chemo/radio can it?

Also, we are considering asking to have the prostate removed... obviously we need to speak to the experts to give us the full story but if any of you have experience of this, I would be grateful to hear your views etc.

Thanks for reading.

Edited by member 24 Nov 2015 at 17:31 | Reason: Not specified

User

Posted 24 Nov 2015 at 18:50

Hi Carra23 sorry to hear of your husbands ongoing problems , although my path is different to his I do still feel tired at the end of the day six months on from RT hopefully you will find out more after the scan in December all the best Andy

User

Posted 24 Nov 2015 at 19:42

Dear Carra

I am very sorry to read you post. My OH was diagnosed in November 2011 and so I understand it is a long period of stress and worry.

We had a different treatment path and all that I can suggest is that you await the results of all the tests that are upcoming for your husband. Not easy I know.

My OH remains very tired ( as do I ) but it could be the worry and the stress as well as the side effects of the treatment.

I hope that you can get some answers quickly, and if need be get on to the next stage of fighting this disease.

I have not had chance to look at your profile before responding to this, but if it is up to date, others may be able to assist more.

Alison

User

Posted 24 Nov 2015 at 23:15

Hi Carra,
christmas 2011 is a long time ago and I wonder whether time has dulled what was explained to you at the time. If your husband had chemo, it must be assumed that he had been diagnosed with prostate cancer that was already too advanced to be cured - the hormone treatment could control it but not get rid of it. On that basis, the rising PSA indicates that having had a successful hormone holiday (often referred to as intermittent hormone therapy) it is now time to go back on it. Some men can stay well for many years by carefully balancing the time they are on the hormones and off the hormones.

If I have assumed correctly, and he was diagnosed with advanced cancer in 2011, he probably will not be suitable for prostate removal because it has already escaped.

There is a niggling doubt in my mind about all this though - is it possible that the chemo was given for another cancer rather than for the prostate?

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

User

Posted 24 Nov 2015 at 23:34

Thanks for your responses, you are all very kind.

Lyn... my husband only had chemo because he was offered the Stampede trial and the random arm he got was chemo, radio and 3 monthly injections. He had locally advanced PC, just outside the prostate and in a couple of lymph nodes but no further spread to any other organs or bones. All scans were clear.

I dont know if you are aware of the Stampede trial but it has many arms and the point of it is to offer sufferers with local or locally advanced PC the option to have treatment that would normally be offered to sufferers with more advanced PC. I could recite every conversation that we have had with the gps, consultants, cancer specialists word for word from over the last 4 years... and any words I may have forgotten are written down (I have an acoount of eveything).. it is my way of dealing with it all and trying to control what is happening.. plus I have a little boy so need to be on top of everything to protect him.

The consultant felt it was right to bring him off the hormones in January as he had been on them for 3 years. The PSA had risen very slightly but it jumped from 2.99 to 10.8 between August and October.

He now has a bone scan a week tomorrow, more blood tests and then more scans on 7th Dec.. just hoping we get some answers on 9th from consultant.

User

Posted 25 Nov 2015 at 00:41

Yes we have a number of members on various Stampede arms. Perhaps I misunderstood - as far as I was aware, men in the curable camp are not eligible for the chemo/RT/HT arm and so there is an expectation that the cancer will become active again at some point. Did the GP speak to the trial team before deciding that the rise could be down to prostatitis? The doubling time based on the figures you have given here would be around 3-5 weeks depending on whether it was the beginning or end of August and the beginning or end of October.

Re your other comment about fatigue - some side effects of HT are temporary while others are permanent and the general rule is that it takes as long for the side effects to wear off as they were actually taken so it could be that it takes up to 3 years for your husband to get fully back to how he was before in terms of energy, muscle strength, etc.

It is sad to read of yet another member with young children - you will find a number of wives and partners in a similar situation to yourself and hopefully, some of them will pick up your post tomorrow.

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

User

Posted 25 Nov 2015 at 07:20

Dear Carra

I do not fully understand your diagnosis, but it is similar to ours.

My OH was diagnosed Nov 2011 and had RT and HT for 3 years.

He completed the HT this October.

He was on stampede Arm Abiraterone for 2 years.

We'd have 2 little boys, the youngest who is 3 and I am 42.

I totally understand how you are feeling and hope you can get the answers you need quickly. As we all know the waiting is the hardest part.

As I said above, My OH is exhausted too, and has to get up a lot In The night to urinate so this does not help.

Thinking of you..

Alison

User

Posted 01 Dec 2015 at 12:32

Thank you all for your comments and support.

My husband had another blood test yesterday, is due a bone scan tomorrow and then a full body scan on 7th December. We then have an appointment with the specialist on 9th December so hopefully find out then what is happening and if there is any further treatment he can be offered.

Fingers crossed and I will let you know how we get on.

Thanks again for your suppport

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