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Really worried about my dad

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Posted 9/1/2012 11:18 AM (GMT 0)
Just hoping for some positive feedback. My dad is 76 he had HIFU six years ago. But now has a gleason score of 9 and psa 4. His MRI scan was negative and he is waiting for his bone scan results. He has been told it is still within the prostate. But we must await the scan results. He had his first hormone injection last week and will start radiotherapy in the future. I dont know what to do to help, he dosen't know I realise the significance of the gleason score and he is keeping it all to himself. I am trying to be normal around him but am finding it hard, I dont like to think of him suffering, he is such a strong dignified man and has always been there for us.
I can't stop reading stuff on the internet but a lot of it is negative. I can't understand why surgery isn't an option for him. Dad dosen't like to discuss it so can't ask him but I know he has been told that.We live in Birmingham Uk and he is having his treatment at the QE hospital

Just hoping for some positive news or just a little support as I cant tell my sister and brother my mom has asked me not to.


Thank you
Posted 9/1/2012 11:42 AM (GMT 0)
yvofol

Welcome to our family, sorry you have to be here but this is definitely the place you need to be.

Recommendation on reading stuff on the internet - You found us, ask your questions here. We have a awesome family of brothers and sisters who will share all the knowledge they have. The internet, unless you know exactly what you are looking for and can decipher what is said, is a dangerous place.

We have two adult daughters - let me state right now - daughters are such great people to have in my life. While they do support me in my battle with this crap, of more importance is they support Mom (my bride). I'm sure you are already supporting your Mom - she will need someone to talk with - and yes cry with.

As my urologist said when I was first diagnosed "This is treatable and survivable". It sounds like your Dad knows what he is facing and what he should be doing.

How can you support your Dad? I think right now he is keeping things to himself until he himself is ready to tell you. Give your Dad the space he needs. Continue to be the loving daughter you are.

Hugs

Bud

We will beat this crap
Posted 9/1/2012 12:55 PM (GMT 0)
Welcome.
The hormone therapy / androgen deprivation plus the radiation should help your father live for quite a number of years. Some patients with similar statistics live for 10 years or more. It does vary though. There are also a lot of new treatments being developed. Good luck.
Posted 9/1/2012 4:10 PM (GMT 0)
Welcome to HealingWell. I think you'll find that this is a great place for information and support.

Your dad's docs are probably recommending against surgery just due to his age. He's probably better off avoiding the trauma of surgery, and there are other treatments that have similarly good outcomes.

Any Gleason 9 cancer is serious business, but it sounds to me like your dad has a good chance with it. There are lots of Gleason 9 patients here who are going through hormone therapy and doing pretty well. His PSA is high, but not outrageously high (we've had guys here with PSA scores over 1,000). Hormone therapy should bring down his PSA nicely.

The hormone treatment has its downsides, but there's a good chance it can help manage his cancer pretty effectively. The fact that they think the cancer is confined to his prostate is very positive. The fact that they want to do radiation is also positive, in a way. It means the cancer is localized. The treatment will be a drag on him in many ways, but it won't go on forever and he'll come out of it a healthier man.

You'll be hearing from some guys who are more familiar with this than I am, and who are going through what your dad's going through. I think you'll feel a lot better about this once you hear from them.

Hang in there, and best to your dad. One day at a time.

Jonathan
Posted 9/1/2012 4:45 PM (GMT 0)
Welcome to HW. I'm a surgery guy, but because mine was high-risk (also a G9 - 4+5), I wound up in RT as well, and now will be heading off to Hormone Therapy as the next attempt.

Surgery has potential side effects (especially incontinence) that become more likely and possibly more severe with age. A young guy may deal with it all quickly, but as we get older, it becomes more difficult both physically and mentally. My uro/surgeon will not do a removal surgery on a man over 70. When I had my RT, I was seeing a group of guys in their 70's and 80's who were going through RT as their primary treatment, and were doing very well, while I was sitting there in loose pants and pads. Even the wives gave good progress reviews while the guys were "on the table" - so not just alpha-male feedback.

The other consideration is that surgery side effects are immediate. Most guys get better fast, but there could still be weeks or months with incontinence problems. Mine have never resolved at 3 years out. ED issues are also to be considered. RT, on the other hand, has some immediate but short term issues (urinary frequency, rectal issues seem common), and then the possibility of slowly developing issues that may not show up for years. Since I have had both, I can't tell you which is better/worse. The doctor's suggestion of RT and HT appears to be normal based on your dad's age.
Posted 9/2/2012 12:47 PM (GMT 0)
Thankyou all so much, it really has helped, I am feeling more positive.

I think you're right Bud to give him space. You can see him thinking a lot and very quiet I know he has always been there for us never been ill, plays golf all the time, worked hard all his life as a builder, so it must be difficult to ask us for help now, but I will be there when he does. I wiil of course look after my mom I know she's scared. Love to you and your family they sound lovely.

Thanyou also to jonathan, Robert and Mr Moderator man sending you all positive thoughts, one day i will tell my dad about this site , not just now though as he is a very private man,

Thanks for your support.

Yvonne xxxx

Posted 9/2/2012 5:18 PM (GMT 0)
Welcome, sorry to hear about your dad and his condition. Is he suffering with any pain? You didnt say in your report. If not, he may not be suffering directly from the prostate cancer, many dont until things really spread.

Since he has had failed HIFU, surgery would not be a safe or practical salvage treatment for him. Even if he were a younger man, surgery would be very risky and problematic for anyone in his situation.

I wish the best to both you and your father.

david
Posted 9/4/2012 6:06 PM (GMT 0)
My dad's bone scan has come back clear. We r all so relieved. feel there is more hope now

Thanks

Posted 9/4/2012 6:31 PM (GMT 0)
Thanks David. No he is in no pain. Fitter than me. What is good or maybe not, is his brother of 74 is going

through the same thing, though he had the prostate removed a couple of years ago and the cancer returned

he is on hormone injections and halfway through his radiotherapy.He has no side effects other than feeling a little hot now and than. I don't know what his Gleason score was. But he also has a neg bone scan and mri

This of course is a great support to my dad they meet regularly to play golf, so I am glad he has someone to talk to. We can support our mom.

Will keep you updated of his progress

Posted 9/4/2012 7:09 PM (GMT 0)
Glad to hear that he's not in any direct cancer pain at this time. And glad to hear his bone scan came out clear. The privacy part is very subjective, person to person, and my best advice, while I am an open book to anyone that wants to know, others aren't so open, so I tend to respect that in a person. Glad he has his golfing buddies to help him along the way.

david
Posted 9/4/2012 10:17 PM (GMT 0)
Thankyou David for your kind words. But part of me is scared that u r telling me he is not in pain at this time

means he will be in the future and the fact he is being quiet is he is not being truthful. Sorry if i come across a bit paranoid. . But u r obvviously more knowledgable than me.

Thanks for the kind word anyway

Yvonne

Posted 9/4/2012 11:25 PM (GMT 0)
yvofol

You are reading too much into what David said

There is no reason for your Dad to be in pain later. Well other than the aches and pains I bet he has - like all of us - accumulated over our years.

He is being quiet - simple - he is not ready to tell you yet. He has his brother who has taken the same type of journey, I'm willing to bet he talks with his brother on the golf course.

Like you said in your first post "he has always been there for us" - Simply be there for your Dad. Be there for your Mom.

Hugs gently

Bud

We will beat this crap!
At some point in time your Dad maybe comfortable in telling you - give him his space.
Yes know its hard
Posted 9/5/2012 8:01 AM (GMT 0)
Thanks Bud. Good advice.

Hugs right back at you

Posted 9/5/2012 2:27 PM (GMT 0)
Yvofol,
welcome to the club. There are many wives and daughters here. I feel for you and your dad. I feel for everyone who has to find this place but really glad you did. I was working the night shift when I found this place. I was scared and feeling alone. I could not talk to my bride without enduring her tears. I was told I may only live another year if that. Many good brothers and sisters gave me love and encouragement. I have many friends here. I am telling you right now. Your dad may have to do battle with this rotten disease but at his age and his level of fitness he has a very good chance of beating this disease up and taking its lunch money. Be positive for your dad. No man ever wants to be treated like he has one foot in the grave already. Come to this place with your worry's and your tears. I have wept at this site and have caused others to weep. I have also laughed myself to tears. God bless you. We are here for you. Todd
Posted 9/5/2012 7:50 PM (GMT 0)
Thank you so much Todd. My Dad is a fighter, I think he's from a different breed, maybe as he's irish i don't know but he just seems to deal with it. The clear bone scan has definetly made a difference he is more open now, and admitted he has been worrying about us.

Right round 2 now here we go on this journey, so much positive stufff on here.

All my thoughts to all of you out there and if you believe then god bless and if you don't then all the luck in the world on you.

Yvonne xxxxx

 

Posted 9/5/2012 8:20 PM (GMT 0)
Thanks Todd,

You and Bud r so positive, thanks for all the support, things r much better since the clear bone scan, dad is able to speak about it now and was more worried about us.

I know this is just round 2 but I know we will come out fighting :-)

Anyway hugs an kisses to both of you and every one on this site.

Will continue to post and watch ur progress

All the very best

Yvonne

 

Posted 9/5/2012 8:32 PM (GMT 0)
Your welcome
Posted 9/6/2012 5:16 PM (GMT 0)
Just some advice. My dad is due to see his cancer specialist on the 25th Sept, he is happy for me to go with him. I don't know what is the best thing to do weather to ask questions, like how many biopsies were taken, were they all 9, what stage is the cancer, what injections is he on. How local is it, is it in any lymphs, how much of the prostate is effected. My dad dosen't or can't remember if he has been told this info. Will the Dr. think Im a smart Alec and also what if my dad dosen't want to know. But then he wouldn't want me to go I work as a nurse and they have always asked my advice on health issues in the past.

Anybody think I should just sit and be quiet or anybody know any other information we should be told.

Thanks

Yvonne
Posted 9/6/2012 5:52 PM (GMT 0)
yvofol

No! Do not sit quiet! Your Dad wants you to be there to help him out.

Ask all your questions, I recommend make a list of your questions and go over them with your Dad before you two go. Have your Dad put his questions on the list also.

I take my Doctor son-in-law to my appointments - before we go we trade a list of questions. I know my daughter helps with that list.

As to the Doctor thinking you are a smart aleck - Right - fine - who cares what the Doctot thinks - You and your Dad need need to know. Ok thats my wise guy answer.
Really:
What I'm found is my Medical Team actually seems to enjoy when I ask questions and they do not mind at all when my son-in-law is with me. As a matter of fact my Onclogist will ask where he is if I do not have him with me.
What I do, after my Doc's tell me something - I say ok this is what I think you told me - and than tell them in my words. At which point my medical team will either affirm or correct me.

Than to the "My dad dosen't or can't remember if he has been told this info"
Yup I face the same thing - which is why I have my son in law with me. The Doc's will tell me something - I'm sitting there trying to figure out what the Doc said and he /she has continued talking.

Have I mentioned daughters are really great?

HUGS!

Bud

We will beat this crap!

PS Oh yeah us Irishmen - we tend to roll with the punches:) ! HUGS!
Posted 9/6/2012 6:02 PM (GMT 0)
If it were me with my friend who has my living will (nobody else to go with me to that sort of appointment), I would want the biopsy report to be reviewed again and to be given a printed copy at that time. Also the CT & Bone scan results - trying to ask specific questions without the background may just result in more confusion.

Also, take a recorder (these days even the phones may have them - test with it before you go to be sure you know how to use it), and ask the doc if it is ok to record the discussion. That was invaluable to me, once the C word shock started wearing off. There was a lot that I would swear I was not told, but the recording does not lie.

If you have not already looked at it, go to this thread for generic questions:

Prostate Cancer: The Really Useful List made by HW people for HW people.
https://www.healingwell.com/community/default.aspx?f=35&m=1717641
Posted 9/7/2012 3:27 AM (GMT 0)
Before deciding on treatment, here are some further questions you may want to ask yourself:

Are you the type of person who needs to do something about your cancer, even if it might result in serious side effects? Or would you be comfortable with watchful waiting/active surveillance, even if it means you might have more anxiety (and need more frequent follow-up) in the future?
Do you feel the need to know right away whether your doctor thinks he or she was able to get all of the cancer out (a reason some men choose surgery)? Or are you comfortable with not knowing the results of treatment for a while (as is the case in radiation therapy) if it means not having to have surgery?
Do you prefer to go with the newest technology, which may have some theoretical advantages? Or do you prefer to go with treatment methods that are better proven and with which doctors may have more experience?
Which potential treatment side effects (incontinence, impotence, bowel problems) might be most distressing to you? (Some treatments are more likely to cause certain side effects than others.)
How important for you are issues like the amount of time spent in treatment or recovery?
If your initial treatment is not successful, what would your options be at that point?
Posted 9/7/2012 6:25 PM (GMT 0)
Thankyou all and to you Bud did i ever say that father's are great too.

Hey another lovely Irish man.

Will let you know how appointment goes.

xxx

Posted 9/10/2012 9:09 PM (GMT 0)
Hi, Can u diagnose positive margins or if it is in the lymph nodes with just a biopsy.
After much reading should HIFU be used as a first line treatment?

Thankyou

Yvonne
Posted 9/10/2012 9:28 PM (GMT 0)
Only the post-op pathology can identify "positive margins", because they are the presence of cancer cells up to the point at which the surgeon cut to remove the prostate. Until there is a cut, there is no margin.

A better concept would be to consider more advanced imaging to try to determine if the capsule had been broken. Some imaging can detect larger cancer in lymph nodes, which is the reason CT scans are often prescribed after a biopsy.

I am not personally convinced by HIFU. It may be a valid procedure, but the clinic I contacted used a very strong sales pitch, even having someone contact me with information on how to mortage a home to pay the costs. Since my insurance does not cover it, and I live in an apartment, it was out by default. I was very turned off by the snake-oil sales approach.

 

Posted 9/10/2012 10:08 PM (GMT 0)
I wish I knew about this site when my dad was diagnosed six years ago. I have a feeling now surgry would have been a better option than HIFU. But as the procedure was done under the NHS we thougt my dad was very lucky. Oh well

xxx
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