Dad’s result day today - Gleason 9 (4+5), had CT and bone scan - N1 and M0 stage results

Keeley

Thanks for sharing your dad’s diagnosis. 

I believe Radiotherapy plus hormone therapy is the most common  therapy for Locally Advanced Prostate Cancer.

It isn’t up to me to say, but I imagine that the reason for your dad not being offered radiotherapy is based on a few factors one of which will be his age.  It will also, I guess be his general health.

I presume that as he is going to receive hormone therapy he will be referred to an oncologist.  I’m afraid I have no experience of hormone therapy and Prostap, but it may be that he has his PSA tested every 3 months.

Whether urologist on oncologist, he can request to see them at any time to further discuss the treatment if no other opportunity arises.  He/you could then ask why he is not being offered Radiotherapy, I think he deserves an explanation.  However. There might be a risk in this as he might not like the answer.

You can find out more about the effects of radiation therapy here. Note that this is general.  Pelvic radiotherapy can cause problems with the bowel and the bladder,

Cancer is sometimes a matter of balancing quality of life against quantity of life.  In cases where damaging treatment can reduce someone’s quality of life, with possibly little gain in terms of length of life then it may not be considered worth it.   It may be thought that this applies to your dad.

There  is no certain way of predicting, but hormone therapy can slow down prostate cancer growth significantly and may prevent spread for years and it may be there are other threats that are just as significant.

There are now many people who are in the same position as your dad will be i.e. Living with Cancer.

In which case it seems clear that you have to do those things which promote physical and psychological well being as much as possible.

It seems as if you have already started looking at this in looking at diet and exercise.  There are a couple of Macmillan booklets on these two topics which specifically relate to cancer which I can lead you to if you wish.

He may also be interested in attending a Macmillan Hope course, a six week 2  ½ hours per week course looking at various strategies for living with cancer.

For more information about this, click here

Hi Uroboros

thanks for taking the time to reply - as you say, I think the most likely reason for the urologist’s apparent reluctance at putting forward radiotherapy as a viable / sensible option is probably due to my dad’s age and overall health.

i keep reminding myself that ultimately, it’s up to my dad if he opts for any available treatment - I have to stop being selfish and just thinking that I want him around for as long as possible - as you say, quality of life is often what matters.

my dad, certainly at the moment, just doesn’t really want to deal with the cancer - he seems to just want to bury his head in the sand and boy talk about it. I can’t imagine how he’s feeling but my dad isn’t very open anyway about his feelings/fears. All he says is that he doesn’t want to end up in hospital - it’s a shame because I’m sure he would find it helpful to engage himself with groups like this and those you suggest - maybe in time he will. I do tell him about some of the things I’ve read from people on here and I can see it helps for him to hear real life experiences as it gives him some hope.

i’ve booked to take him away for 10 days in a couple of weeks - he’s always loved going abroad but hasn’t been able to for a few years as my mum has dementia. He’s looking forward to the holiday so hopefully that will give him a bit of a boost.

am hoping that the side effects from the Prostap injection won’t affect things too much.

keeley

Ps - Uroboros - I’d be very grateful if you could refer me to those 2 booklets you refer to 

The holiday sounds good!

Here are the booklets plus I've added one

Healthy eating,  Exercise  and Coping with fatigue

As you say, you don;t want to lose your dad, you're not losing him yet, but it is his choice.

If you want to ask about the effects of hormone therapy you can visit this discussion and ask these guys.

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/142/Healthy_2D00_eating.pdf

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/142/Move_2D00_more.pdf

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/142/CopFatigue.pdf

Thank you!

Hi KeeWi

My dad is just a couple of weeks ahead of yours I think and he has suspicious areas on ribs that we have not yet had ct results to confirm.  So upto now dad had a month of bicalutamide, an injection of Prostap and will have his 2nd prostap jab next week.  He was 77 last week and we have been told if bone involvement he will have chemo if not radio.  Dad relatively fit but also has other issues COPD, blood pressure (both well controlled with minimal meds) on statins and also borderline diabetic. My dad has Gleason 8 and PSA 145 with staging currently t3a n0 m? Due to the suspicious areas.  I too am worrief of the affect of chemo and wonder how good alternatives are so will be good to see what your dad gets offered.  Fingers crossed whatever they get offered will be successful for both of them.

Hi Keewi

It could be worth getting another opinion perhaps from an oncologist rather than  an urologist.

Your dad's general health doesn't seem too bad, I would have thought RT was still an option. Some of the latest Radiotherapies are very targeted and shouldn't cause too many problems.

Did the urologist say why in particular he didn't think RT was an option?

Ok, it may turn out not to be an good source of treatment for your dad but well worth pursuing.

Regards

Steve

It is a very good idea to ask A consultant why Radiotheray has not been offered and you have right to know this.When consenting to any particular treatment, you have a legal right to be informed of any alternatives.

To some extent it may make no difference which consultant you ask, since treatment opitons for cancers are usually decided by a multipdisciplinary team, not an individual.  Therefore different individual consultants in the same trust may give the same answer.

This is not like the American heath system where you pick who you see according to your ability to pay for it.

You CAN ask for a second opinion and it will be considered if one is needed.  The second opinion may have to be another Multidisciplinary team in another trust.

In the UK, we do NOT have a legal right to a second opinion so this might be given, but then the request might be turned down.

I have known some however, pay for a second opinion.

This web site might be helpful click here

Just to emphasise the point, if I was in a posiiton where I felt I was being denied a particular and significant treatment, I would want to know why and I  have a legal right to be told  I would find this out before pursuing a second opinion, practically because this might inform the chances of a second opinion being any different.

Hello, my dad is very similar to your dad. His psa was 13.4 gleason 9. Cancer on left side of prostate and left lymph node in pelvis. Bone scan was clear. He is on homore injection called eligard given every six months and due to start radiotherapy in October he is 67yrs.and in good health. We haven't been given a T stage either. I would definitely ask why radiotherapy isnt an option.

Regards

L

Ireland 

Hello again

I was struggling to get  a very relevant Macmillan booklet for you, as it was out of stock and additionally wasn't available to download from Macmillan.

I suspect it's not available because they are updating it.

However, I have managed to track down the current version which is still very relevant. 

The booklet has very relevant sections on hormone ONLY therapy for locally advanced prostate cancer,  the Multidisciplinary team, making the treatment decision, second opinion and the types and effects of hormone therapy

I also have another booklet on hormone therapy.

Unfortunately the hospital computer I'm currently using is blocking me from uploading these.

I will have to do it later.