My Dad has prostate cancer - how do I help him through treatment?

[tiokiko]

My lovely dad (67) has been diagnosed with prostate cancer. It's what killed his dad so a) he was on the lookout and diagnosed swiftly and b) pretty scary for us all.

It seems to have been caught early - biopsy gives Gleason score of 6, CAT scan shows it is localised (but cons thinks potentially may be going to 'leak' into surrounding tissue. No symptoms, picked up through bloods only.

They will make a decision on treatment next week but looks likely to be radiotherapy rather than surgery at this stage, possibly with hormone treatment. He is very overweight and has been advised to lose weight before treatment starts.

Does anyone have any experience/advice of a similar situation? How can I help hm (and my mum) through the next few months - what should he (we) expect in terms of side effects etc?

I don't have direct experience of any close relatives having prostate cancer - hopefully someone else will come along soon. HOWEVER, I had radiotherapy myself last year and often sat waiting for my 'turn' with gentlemen who were having radiotherapy for pc. Many of them commented (and I found this myself) that at the beginning of six weeks of radiotherapy the time just seems to be stretching out in front of you in a daunting way, BUT sure as many people said, the time will go by amazingly quickly. Honestly!
It will undoubtedly be uncomfortable for him - be sure to mention everything to the health professionals - they usually have SOMETHING they can give to help with side effects. Obviously, it's an awkward area. The skin in the affected are will become kind of 'sunburned' so obvious discomfort when sitting. He may well become tired as the treatment goes on.
A nutritionist (rather than a dietitian) would give very detailed info and advice about a suitable diet, supplements etc to protect the healthy tissue from damage and aid recovery.
Your dad will be assigned a MacMillan nurse - who will probably be lovely - and a useful source of advice and help with any issues of hospital admin.
There are lots of internet forums for cancer patients, their carers and cancer survivors. Maybe approach with a modicum of caution, but they often have useful advice from people who understand what your DF will go through. I found the American Cancer Society particularly useful.
A 'score' of 6 is very encouraging for a good prognosis.

It might take the interdisciplinary team longer than you think it should to get his treatment started......

Hi tio I haven't any knowledge on prostate cancer, but I know my neighbour who is 70 has just recovered from it. He was on hormone injections. Sending you, your mum and dad love.x

Thanks both, v helpful.

It sounds like they (inter disciplinary team) will meet soon - for various reasons he is being seen v quickly which is amazing. They don't think there is an immediate/urgent need to start treatment but I think he will have his plan in place within the next few weeks.

I know it's very treatable but I really remembers grandpa dying (mum nursed him at home at the end) and it makes this all very real, must be the sane for dad. Just want to help him get through this as much as I can.

Tiokiko, please tell the MacMillan nurse about your previous experience and your fears. They will probably have helpful, up to the minute information. I completely understand how you feel as my cancer was the same type that had done for my mum four years before I got it.
On the other hand, hormone treatment for your father.....Now, you do realise that he'll be asking to borrow your tights and lippie after a while? :o

MANY apologies, if my attempt at humour overstepped the mark.

Tio, I'm sorry to hear about your dad, but with Gleason 6 and I guess a pretty low PSA, he has a very, very good chance of not being troubled by it again after treatment.

If your dad is very overweight, radiotherapy can be problematic, but has anyone talked to him about brachytherapy ? This is a form of radiotherapy given from the inside, either with tiny radioactive seeds which are left there, or with a machine that quickly places a source in needles (High Dose Rate). As the treatment is given from the inside, it is not affected by how big someone is.

Wrathomum thanks for your info and personal experience - hope things are going well for you now. No need to apologise for humour - always good to have a smile!

CMOT thanks so much, that's very reassuring. From what I have read and what Dad has been told, it sounded like the best sort of bad news (if you see what I mean?) but it's good to hear from you too, think you have lots of experience/professional in this field?

I don't know if they are talking about brachytherapy - again, I have read a little about it but didn't know that it could be particularly useful in this sort of case. So does that mean that his weight could affect the accuracy of the radiotherapy under standard treatment?

I thought that maybe they wanted him to lose weigh to be able to get through the treatment more easily but it sounds like there are physical/practical reasons too?

I don't know (obv) how overweight your dad is, but the trouble with very large people and external beam radiotherapy is that the radiation has to go through the outside first, before getting to the tumour. So if you are large , they have to use more radiation, and if he has folds of skin, then they can get very sore. Its also harder to get everything in the right place as the skin marks are more movable.

My dad was diagnosed with Prostate Cancer almost 18 mths ago.
There was some spread from the prostate and he had a gleason score of 9.

He is currently on hormone treatment and has received 7 weeks of radiotherapy. His PSA levels are now down to below 1 and we are hoping that he can come off the hormone treatment within the next few months.

First thing I would tell you is not to panic. Prostate cancer is one of those cancers where there are lots of treatment options. Sounds like they have got your dads cancer nice and early and he has a relatively low gleason score, which is all quite positive.

Secondly I would say go to the Prostate Cancer Charity web site and request a Tool Kit from there. It will give you all the information you need regarding treatment options and what each diagnosis means. Very useful. There is also a forum there where you will get lots of advice and support from others and their families who are living with PCa.

I wish you and your dad well. It's such a worry, but by the sounds of things your dad has a great chance of a CURE!!!!!!!

Please down load the Tool Kit. Information is power!

DH was diagnosed with prostate cancer this time last year. he was 55 at the time. It was pretty scary, especially as we have have three young children .

His gleason score was 6, like your Dad's. This is considered to be a low score. he had bracytherapy 6 months after his diagnosis, and is doing really well. As many say 'it's a thing you die with, rather than a thing you die from'.

Cmotdibbler was incredibly helpful at the time . DH is a scientist and really appreciated the measured advice offered by you.

I suppose what I really want to say to you tio, is that prostate cancer is very treatable and that there is a lot of support out there.

A year on, I have to remind myself that DH was diagnosed with prostate cancer. His biggest complaint is that we all make light of it!

My Dad is 55 and was diagnosed with prostate cancer last Tuesday. He had an MRI scan yesterday and is due a bone scan next Tuesday. They will then decide what treatment he will get. The biopsy indicated cancer in both prostate lobes. Does anyone know what this means? I really don't want to google! The positive stories that have been shared are helping.

Elderflower, its great to hear your dh is doing so well.

30ish, all it means is that there are cancer cells on both sides of the prostate. TBH that doesn't mean much as there are normally multiple tumour areas in the prostate. The main things that matter are the PSA level, the Gleason score of the tumour (this is how abnormal the cells look under the microscope), and the lengths of tumour on biopsy or tumour seen on MRI.

Peppa and Elderflower thanks both for your posts, it's really great to hear these positive stories, it all echoes what he has been told but I am a worrier so this is so helpful.

It's great that there is so much information available, I have had a quick look at the site and will spend some time this week looking in more detail and will make sure my DF is aware too.

30ish sorry to hear about your dad, hope the scan goes well and he can get on with treatment and recovery soon.

Sorry posted too soon - also thanks again CMOT that makes sense. He is big, too big for MRI scan for example. I understand now what you mean, will talk to him properly when I see him later in the week but v v useful to have this additional info now, really appreciate your help.

Thank you Tiokiko. My dads PSA is 8.3. It's the waiting that's the worst! We were all due to go on holiday in 6 weeks time but think he will have started treatment by then and will be unable to come.

30ish I'm sorry to hear that your dad has this terrible disease.

This is one of the hardest times, waiting for the diagnosis.

Here's the link for the Prostate Cancer Charity web page
prostatecanceruk.org/information/our-publications

Please down load the tool kit. It gives you all the information you need about PCa, diagnosis, treatments and living with cancer.

8.3 is a low PSA reading. I've seen men with PSA's in the thousands!
Good luck and I hope all goes well for you and your dad.

My dad has had the results of his MRI & bone scans. They haven't found cancer anywhere else, but believe that his prostate has leaked. He will have hormone therapy, tablets then injections & then radiation every week day for a month. The consultant said that on a scale if 3-10 it is a 9. What does this mean? All in, they think treatment will take 2 years. Is this good news or not? I'm a big confused tbh!

What they are saying is that the cells have managed, or they probably have managed, to get out of his prostate, into the tissues around it, but no further.
The number would be his Gleason score, and says how abnormal the cells are - 9 is very high, showing that the tumour cells have probably forgotten totally where they are supposed to be, what they do, and how often to divide.
The hormone therapy will cut off the supply of testosterone, which slows their growth right down, then the radiotherapy will treat the cancer in his prostate and just around it.

Its very good news that theres no cancer elsewhere, and your dads PSA isn't very very high so he doesn't have lots of tumour cells in his body, but the Gleason of 9 means that what cells he has could grow fast if not treated. That all puts (based on what you've said) your dad into the intermediate risk group, so he has a good chance of being a long term survivor

Thank you! They have said that it's not aggressive so fingers crossed! It's the first time I've had to worry about my parents!

To the poster who mentioned brachytherapy. You can ask... But...

Typically, permanent low dose rate brachytherapy is for very low risk cancers and is a treatment on its own (monotherapy)... Temporary high dose rate brachytherapy is for higher risk cancers and typically delivered along with radiotherapy, not as a stand alone treatment.

Therefore you need to ask where he falls in terms of risk (seminal vesicle involvement, spread) and what are the most suitable methods of treatment. Has he had his core biopsy yet?

Oh right I've now read your update... I'm just about to have dinner I'll get back to you...

I can't really add to peppas post... I don't know what the consultants scaling is I'm afraid.

Prostate cancer is a very slow growing cancer and for treatment to take a long time is not unusual. Hormone therapy for anything up to 6 months before radiotherapy/brachytherapy commences is very normal.

The website peppa suggested is very good. All you can do now is support your dad and get him through the treatment.

Best wishes to you x

Gary, HDR brachy as monotherapy is available at a few centres in the UK

@Elderflowergranita Hello How is your husband doing now?

Hi there, it’s a long time since I’ve used this username! DH is hale and hearty, now 69 and just retired from a very busy and stressful job.
The prostrate cancer never returned - in fact we were just reminiscing the other day on how dd couldn’t sit on his lap for 6 months after the treatment because of the radiation, much to her annoyance lol.
He’s had no negative side effects either such as incontinence/impotence.