Daughter wanting to help dad with Prostate Cancer

you must be gutted with this news so sorry 

has he had a biopsy done and been given a gleason score ? 

11 if that is his psa is not very high ?

whats helped me is positivity i said right at the start i wasn't gonna let it get me down or stop me doing things !

my g/f and daughters and family/friends are all on board with the positive vibes 

use ur macmillian nurse dont wait if u think of things to ask , write stuff down when u think of things 

Hello,

So sorry to hear your Dad's story. 

You are already helping him greatly by wanting to be proactive.

You have his PSA at 11 do you have any other tests/scan results are are you still waiting?  I presume the scan he had was a PET Scan?  Has he or is he waiting for a bone scan?

The Hormone Treatment (HT) Injections he will receive are to lower his PSA count, stop further spread and I was told they also weaken the cancer cells in readiness for further treatment if there is any suitable further treatment.  You don't say if your Dad had HT before his previous radiotherapy and what HT he was given then.  If he did and this is the same HT then he will know what side effects to look out for and how he can deal with them.  If he did not have HT previously then the main side effects to look out for are Hot flushes, fatigue, mood swings, muscle wastage, and weight gain especially round the belly.  Some of us do not have any of these side effects and others to a greater or lesser degree - we all react differently.  The best way I found to deal with these was to carry on exercising going to the gym at least 4 times a week all the way through HT and radiotherapy and I didn't put on wieght or get excess belly fat.  I did feel more tired and quite often would fall asleep after lunch and fall asleep in the evening watching TV.  The hot flushes were not a problem with me and I only really noticed them when they were receding after the HT stopped.  Continue to eat healthily and cut out any hidden extra fats and sugars - remembering to have the odd treat.  The hot flushes can be dealt with as most women deal with them at menopause - wearing layers sleeping under a sheet with light quilt so that the quilt can be removed when you get a hot flush and so on.  If the side effects are unbearable then the injection can be changed or medication added in to help.  So always know that you can ask for something to be done and don't suffer in silence.

Look on the Prostate Cancer UK website prostatecanceruk.org for their pamphlets on prostate cancer to get further information and you can also call their specialist prostate cancer nurses on 0800 074 8383.  Its a free phone call and they are available Monday to Friday 9am to 6pm and Wednesdays 9am to 8pm.  I found the prostate cancer specialist nurses invaluable as it was almost impossible to contact my key worker at the hospital with questions- infact I got more information and help from my urologists secretary who's father had had prostate cancer.  I am not saying that when I asked for information from my key worker I didn't receive the information it was just that I could hardly ever contact her as she was so busy.  So much quicker to contact the specialist nurses on prostate cancer UK with a question.

The things I would ask your consultant next time you see him is what other tests/scans should he have if there are any - what these tests might show and how that would change a projected treatment plan and what other treatment your Dad may be given on top of the HT if there are any suitable.

I hope this helps. Most of all be positive and carry on as normal as much as possible.

All the best

Des

Make notes of any questions, check what your father might and might not want to know, 

I was reluctant to know exactly where the cancer had spread so I didn't over think it. I relented in the end but it was my choice when. Some questions are Pandora's box you can't unask.

Treatment options can vary depending on aggression of cancer and age. I'm young at 51 so my treatment plan might be different to your father.

My assumption from what you've written is that your father will be on hormone therapy for life (same for me) this hopefully will restrict it's growth and spread for many years to come.

We're only human and will have down days, it takes time to come to terms that it's manageable but not curable (unless his consultant thinks radiotherapy is an option)

Just be there for your father, be kind when needed but be normal (as much as you can) he will struggle with cancer thoughts so don't ignore when he wants to engage 

Rambling I know, in essence there's no right or wrong We're all different. We sometimes get it right and sometimes wrong

Thank you so much, I really appreciate the reply.

They have not done any biopsy just a pet scan which came up with the spread of cancer into the nodes 

But absolutely we are all keeping positive and wait now wait till November to see the specialist again.

Thanks again

Thank you Freefaller Des,

His PSA is low but In the Pet Scan it showed cancer was in lymph nodes but not in his bones.

No more test at this stage just waiting to see PSA level in November from the specialist.

I asked if they could take the prostate out and they said no because of my dads age but he is only 75 years old and because it was now in the lymph nodes.

My Dad had his first HT injection  today, he is so upbeat today about it,  I know the last week he had struggled mainly because they won't take out the prostate which I think made him feel like he does not have as many options.

Dad said this afternoon he would prefer not to think about it now until November and he sees the specialist the less information he has at this time the better because he does not want to start thinking of symptoms he wont have and just take each day which is fine.

I was a little frustrated with the doctor as he did not have my dads report so there was not a lot of questions he would answer, I hated that he was given the drug with not a great deal of information.

Dad has not had hormone treatment I don't think it was given to him when he had radiotherepy but this was nearly 9 years ago and I was 8 months pregnant when I was taking him to his appointments. 

We actually live in Australia, I stumbled on this site late last night so we have a cancer council in which I spoke today and they where wonderful so much better than his Doctor/specialist.

I really appreciate the advice  and taking the time to reply to me  it has helped so much.

Thanks Vicky

Thank you YoungMan 

My dad opened up to me and said at the moment the less he knows the better as he does not want start thinking he has symptoms when he doesn't.  Which I can totally understand and he was in a great mood today.

They said he will need two injections every year of HT and our last consultants

I will be there for him thank you for your advice, its not ramble it helps so much.  Good like with your treatment.

that sounds fairly standard.  There are a number of reasons why surgery is not an option 

1. Because it's not contained then surgery would not cure the cancer. Surgery is reserved for cure. He would still require hormone therapy so he'd go through it for no benefit 

2. Since he's already had radiotherapy then the tissue would be damaged and make surgery difficult and dangerous 

3. His age, hormone therapy can control cancers growth for many years with less impact (at 51 this is what I'm betting on) I've undergone chemo which wasn't pleasant 

Hi

Its bad to know that it has come back for a second time, he may have thought that was an end to it.

Was he offered any radiotherapy? November may seem a long way away. The injection he has I have every three months, the worst thing about it is the hot flushes he will experience, plus some tiredness and fatigue.
Although your dad may not want to know about things, it’s important that he tells you of any problems, men don’t seem to like talking about it, wives or family usually ask questions, it’s not easy for men to do this.

Best thing is always to keep his spirits up keep him positive, hope he gets through this.

stay safe.

joe 

Hi Vicky,

It seems that your Dad has a good attitude and if he can keep from thinking about his cancer as much as possible until nearer the next PSA test in November that is great.  We all have a wobble as the next PSA test comes nearer and there will be times when he can't help but think about it. Sometimes when there is a news story or something like that or just when he is down.

As he already has had treatment in the past an operation to remove the prostate is challenging and rarely done.  It is also not unusual to not suggest an operation for someone in their seventies although a neighbour of mine did have a radical prostatectomy at 76 around the time I was diagnosed at 73.  However it does depend on the position and spread of cancer - for me because the cancer was pressing on the edge of the prostate radiotherapy was considered better as the radiotherapy would be better at "mopping up" any possible microscopic cancer spread in that area which may very well have been missed in the removal of the prostate. If the cancer has spread out of the prostate it is generally thought as pointless to try and operate as most unlikely that all the cancer will be removed and therefore you will have gone through a drastic major operation without chance of success.  As I said my neighbour had a radical prostatectomy at 76 but he is extremely healthy with no other problems such as lung, heart or as I had bowel and bladder problems which would affect recovery from the operation and he recovered as well as, if not better than some people a decade younger. 

I don't know how the medical system is coping with C19 in Australia or how it manages to cope in busy cancer units at the best of times but certainly I have great sympathy with any one trying to get the information they need from busy Doctors and Nurses at the best of times in Cancer Units and now things must be so much worse.  You are doing a great job and I am glad you have found a cancer council where you can ask questions and talk to others as this is a great help.

Here's hoping that everything goes well for your Dad and the HT works for him for a long time.  For my Brother-in-Law it worked for nigh on 14 years and his consultant has often said to his family -who he sees regularly at cancer support groups that if things like abiraterone had been available during the time of his treatment then he would have lived longer still.  There are lots of treatments and new ones coming along all the time.

All the best, stay positive, stay active and make every moment count.

Des