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Posted 22 Jan 2015 at 20:45

Hello everyone this is my first post. My dad found out just before Christmas he has prostrate cancer. Recent tests show it has spread to his bones. My parents haven't asked the question how much is it in the bones and what does this mean. They don't want to know and haven't asked or been told. I feel so worried as from things I have read if it has spread to the bones the outcome isn't good. I don't know to what extent its in my dads bones and if this an important factor. I feel I need to know either way what we are facing. I would appreciate any advise. Thank you.

User

Posted 23 Jan 2015 at 07:46

Hi Clairebax,

Welcome to the forum, but sorry about the reason you have come on due to your dads cancer diagnosis.

The fact it has spread to the bones means it is not curable, but it is treatable and there are people on this forum who are here many years after being diagnosed. It would be good if you could post your dads results, like his gleason score and PSA, it would allow people who may want to answer your post to give a more informed response.

I would imagine your dad will be put onto hormone treatment, which is usually administered every three months by an injection to the stomach area. This treatment can be very effective and can control the cancer for many years.

I know you say your mum and dad don't want to know the extent of the cancer in the bones, but they will be very frightened and the fear will make them not want to ask questions, as they fear the answer will not be good. If possible it would be good if you could accompany your dad on his appointments etc. so that you can ask the questions that need to be asked.

I presume your mum and dad are elderly, and all their generation probably new of cancer in years gone by was that if you got it you died and usually quite quickly. That is definitely not the case now, their are many tools in the box to contain this disease for many years, so you should try and reassure your dad if possible by letting him know this. There are people on this forum who have lived 10 or 15 years beyond diagnosis even when the cancer has been in the bones (metastasized).

If you want to talk to someone about this, please use the phone number at the top of this page and speak to one of the specialist nurses. They are absolutely brilliant, and will spend as much time on the phone with you as you need. They will be able to answer any questions you have and will also be able to reassure and comfort you.

If you want to read peoples stories on this site, just click on their avatar and it will bring up their profile.

Best wishes to you and your mum and dad, please keep us informed of how things are going.

Regards,

Gerry

User

Posted 23 Jan 2015 at 08:47

Hi Claire ,

Welcome to the forum , but I'm sorry that you find yourself here .

My Dad was diagnosed just over a year ago and my parents found it difficult to take in everything that the dr's said . If you can , try to go along to the appointments or ask your parents to take some notes if they can. Your Dad should also-receive a letter in the post which contains details of his test results and treatment . Reading others stories and posting these results really helped me understand what it all means and answered a lot of my questions.

The specialist nurses , number at the top of the page , are really helpful , as is the tool kit .

All the best to you and your family ,

Sarah.

User

Posted 23 Jan 2015 at 09:28

Good morning Claire

I was sorry to read of your dad's recent diagnosis and can't offer much in the way of advice as my cancer is no where near as advanced as your dads. I would say that the advice already given is good, this website and the forums are full of bits of information from other dads and mums who have been living with this disease for quite some time. Try and see if you can get to sit in on consultations with your parents, or at least let mum and dad know that you would like to chat to the specialists if they don't want to, just because this affects you as well.

Wishing you and your parents the best for the challenging times ahead.

Trevor

User

Posted 23 Jan 2015 at 11:47

Hello Claire,

Sorry to hear about your dad.

I am 74 years old and was diagnosed last September. The cancer has spread to my bones: spine, hips, pelvis and ribs. At my last appointment with the oncologist I asked about the results as I wanted to know exactly what is the extent of the PCa. On all of my visits my wife come along so we both hear what is being said. I think that it is important that we both know so there is support.

My daughter and all of my siblings (all six of them) are aware and are also very supportive. I was started on hormone injections - 3 monthly - and I have good results already in that where I had a lot of discomfort it has now gone. I have also commenced two extra hormone medicines under the STAMPEDE clinical trial.

It is not easy to come to terms with this diagnosis but remaining positive and sharing with family is important. There are great stories on this forum and great support and advice from others who have dealt with this problem, some for a long time. I can only agree with the advice that has been proffered by the other replies to your post. Encourage your parents to ask the questions and let you accompany them to the next appointment.

Although I am new to this community, I read many of the other conversations and one piece of advice that is frequently given is to send for or download the Tool Kit. It is extremely informative and helpful.

The best of luck to you and your family.

Davey

User

Posted 23 Jan 2015 at 11:58

Thank you kindly for your reply my dad is only 67 which doesn't seem old his PSA was 97. We don't have the other score as due to him having colitis and been on warfarin it was deemed too dangerous to have a biopsy

Claire

User

Posted 23 Jan 2015 at 12:01

Sorry I also forgot to say I am very close to my parents and I am a only child. I am going to ask them if I can attend the next appointment. I suspect they are going to say no as they know I want answers that they don't want to hear.

User

Posted 23 Jan 2015 at 14:35

Hi Claire,
would dad agree to you speaking to the doctors without him? Data protection laws mean that many medics would refuse to tell you anything if you wrote or phoned but if dad told them at his next appointment that he wants you to be informed of information and copied into all letters, most will do so. Perhaps that way, you could phone the specialist nurse and have a good chat with her - apart from anything else, someone in the family needs to know which bones are affected as he may be more vulnerable to a broken hip, pelvis, etc. In addition, if it is in his spine there are some things he would need to be very aware of like tingling or numb legs. Mum and dad could find these things out without asking for a prognosis and many doctors won't guess at how long someone has because it is so variable depending on how he reacts to the hormones and for how long.

You ask whether the amount it is in the bones is a significant factor. In terms of falling over and breaking something, yes, but as a way of predicting how long someone will live, no. We have members who are still carrying on pretty normally many years after diagnosis despite having many bone Mets and we have also had members who died tragically quickly with no bone spread at all. Bone mets can be very painful, which obviously affects how much a man is able to carry on working or whatever, but some have no pain. I hope dad agrees to you speaking to the specialist nurse as she will be able to give you the info you need.

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

User

Posted 23 Jan 2015 at 17:15

Hello Claire,
My husband (66) had a similar diagnosis to your Dad in early September, but with a much higher PSA. We have two daughters who are pretty close to us, so we can identify with your situation.
Right from the start we wanted to know what was going on, and we are quite open with others about the fact that this cancer will almost certainly kill my husband within a few years. But not everyone deals with this situation in the same way. It may be that you parents (and you!) are still in a state of shock about the diagnosis - I think it took us a good two months to get our heads round it. Sometimes you don't feel ready to ask questions in case you can't cope with the answers. They may be more open about it once they've had time to adjust.
Once your Dad's treatment (probably hormone injections) is sorted out, he should be feeling comfortable and quite well. And you know, your parents may simply decide to get on with their lives and live in the moment without constantly dwelling on what lies ahead. With this cancer, it really is very difficult to give a clear prognosis, as new treatments are constantly becoming available, and individual men respond in very different ways to the available ones.
I'm sure your parents appreciate your company and support more than ever now, but if they don't want to talk about the cancer, it may be that this is how they cope with it. They will also find it painful to share their worries with you, and may be trying to protect you by avoiding the subject. Let them know that you are willing to share the burden and that when they are ready to talk or to find out more, you will be there for them. In the meantime, this forum will provide you with plenty of information. Good luck!
Marje

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