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Really worried about my dad

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Posted 9/25/2012 5:02 PM (GMT 0)
Been to see the uroligist come surgeon with my dad today. My mom didn't want to come as she was to scared of bad news. She has been talking to me recently and she is so scared of being on her own. I think it's times like this you realise how important someone is to you, you are in danger in life of taking people's presence for granted, they celebrated their 51st wedding anniversary in March. Anyway she had it in her head that the Dr said last time that 80% of the prostate was involved which did seem scary when she told me.

I was so pleased to go with him, all be it a funny role reversal. We didn't see the the head Dr in the end which I was pleased about as on seeing him he looked quite pompous. (my dad said he was and dosen't make you feel at ease asking questions) we saw his junior, a lovely man, who went through everyhing. They are nearly positive it has not spread and is still localised. ct scan bone scan and mri negative. The 80% my mom heard was 80% of one biopsy 3+3, 15% 4+4 can't remember the rest but anyway over all 4+5 gleason 9. Have got the other results written down but left at parents. 25% of the prostate involved. He was honest about telling us there is a possibility microscopic particles may have spread, but that is why he is on hormone injections. His psa at present is 3.1, but hasn't had one since starting hormones. Due to go next week.

He did say thay are looking for a cure with dad, which was really positive I was worried they may see an older person and be dismissive of him.

My dad is due to see his radiotherapy specialist on the 20th November which seems a long time but we were reassured today it is to give the hormones a chance to work. It is just a shame he will be having his treatment all over winter, and although the treatment centre is only 8 miles away in Birmingham uk traffic can take ages. However I do realise compared to other countries it is a short journey. I hope it dosen't snow. My dad says he's just going to treat it like a job and he's going to work.

Anyway all in all a positive day, we had a laugh and I think he's glad I went. He seemed less anxious when we left which in turn reassured my mom.

Thanks for all your support. Sorry for going on, find it helps writing it down.

All the best to you all.

Yvonne xxx
Posted 9/25/2012 5:29 PM (GMT 0)
Yvonne

Good news all around! Your Dad and Mom must be feeling a lot better - as you also must be feeling better.

Good for your Dad - right just treat it as something that he will do.

As a Dad with two beautiful daughters (ok I'm a little biased), I'm sure your Dad really appreciated having you with him. It means more to him than you will ever know.

Hugs!

Bud

We will beat this crap
Posted 9/25/2012 5:56 PM (GMT 0)
Ah thanks Bud.

love to you and your family

xx

Posted 11/20/2012 7:12 PM (GMT 0)
Feeling a bit angry today, my dad went to see the radiation oncologist today to discuss his up and coming treatment. She was suprised he had had hifu as a first option six years ago as his gleason scores were so low he could have just had radiation therapy. Also she reported his psa levels have been creeping up over the last six years and she couldnt understand why he hadn't been referred earlier as now his gleason is 9. Part of me wishes she hadn't told him as what can you do but move forward from where you are, which is exactly what my dad is going to do, as always positive.
My dad was never given any options six years ago as you always trust what your docter is advising. I wish as in the american system we had got a second opinion. One downfall of the nhs.

Anyway he starts his treatment in a month for three and a half months. My brother said tonight i wish i could put my hand on him and take the cancer for .

I wish everybody on here all the best
Posted 11/20/2012 7:35 PM (GMT 0)
yvofol

Thats it - move on. No sense in looking backwards.

There are many - probably the majority - people who simply accept what their doctors tell them.

What treatment is he going to start?

Hugs

Bud

We will beat this crap
Posted 11/20/2012 7:41 PM (GMT 0)
Yvofol :

I'm not a doc, but I think there probably isn't much left after HIFU to salvage with surgery. Did you ask the Dr.'s why surgery isn't indicated ?? Please don't be shy to ask the Dr.'s questions. Some folks like to write their questions down before an appt. so they aren't forgotten in the moment.

I think it's great that you are with your Dad during his visits !  Good luck to you & your Dad.
Posted 3/5/2013 6:27 PM (GMT 0)
My dad has finished his radiation course, something that we laugh about but really isn't funny was when my dad started his course he met his brother coming out he had just finished his course. Massive hospital what are the odds.
Anyway had his appointment with uroligist today and his psa is down to 0.3 and they expect it to carry on dropping his brothers is 0 so far good news.
I wish i had their energy they went straight back to playing 18 holes of golf no effort at all.
We are all so happy at the momment and ready to support my dad and mom through this.
All my best wishes to everyone.

Yvonne xxx
Posted 3/5/2013 6:38 PM (GMT 0)
That's all great news. Thanks for letting us know.
Posted 3/5/2013 8:45 PM (GMT 0)
Another "graduate" - good news, and good to hear that the PSA is down.

Glad you remembered us - good news is always welcome wink

Posted 9/14/2013 10:56 AM (GMT 0)
Hi everyone.

My dad's psa now down to 0.01. He looks great and has just come back from holiday.

Just wanted to update and wish everyone well.

Yvonne xxx

 

Posted 9/14/2013 11:31 AM (GMT 0)
That's about as good as it gets.

Congrats.

LupronJim
Posted 11/10/2014 8:43 PM (GMT 0)
Just an update. My dad remains well. If his psa remains 0.01 they are going to take him of his injections. His brother remains really well also. Both playing golf and getting on with life.

Good luck to everyone


Yvonne

xxx
Posted 11/10/2014 8:52 PM (GMT 0)
Great report. He's doing fine.

Andrew
Posted 11/10/2014 9:07 PM (GMT 0)
I am so pleased Yvonne to hear of your dads great response to treatment. Great news.

I also live in the UK and have been reading today about what A great facility Birmingham Prostate Clinic is. After reading it made me wish I lived in the Midlands and not the South East.

My best wishes to you all up in there in Brummie land.
Posted 11/18/2014 8:01 PM (GMT 0)
Thank you for all your support. I wish you all the best and will keep you updated xx
Posted 3/31/2015 9:22 PM (GMT 0)
My dad has seen specialist today, his psa remains 0.0001. God I am so relieved. I miss RADDAD to tell him he was so helpful at the start of all this.

They have taken my dad of his hormone injections and follow up in 9 months.

I want to wish everyone well and thanks for all your support.

I so love my dad and mom.


Love Yvonne
Posted 3/31/2015 10:34 PM (GMT 0)
So glad to hear he is doing well. Thanks for the update.

And we all miss Raddad.
Posted 10/17/2015 1:05 PM (GMT 0)
My dad was recalled yesterday. As the Dr who initially diagnosed him and treated him with HIFU, urologist Mr Nair has been suspended and subsequently resigned,
They are recalling everyone of his patients as there has been so many complaints.

I went with my dad he was seen by a lovely Dr, Mr Ryan another urologist at City hospital in Birmingham UK and a really nice lady I cant recall her name at present but she was senior nurse practitioner they are part of the team leading the investigation.

They went through my dads notes from the beginning and wanted to know his experience. When he was initially diagnosed we know now his Gleason score was seven and there was only a tiny part of the prostrate effected. It may have responded better to different treatments. Radiation may not have been recommended as my dad had been in retention which suggests a blockage and he had inflammation of the prostate. Mr Ryan explained radiation may have been contra indicated .

Surgery or watchful waiting may have been better options but my dad was steered towards HIFU in fact the day after diagnosis Mr Nairs secretary rang my dad up saying Mr Nair could do the procedure quick for £11000. Thank god his Gp told him not to pay and it was carried out under the NHS, There was only ever 22 HIFU procedures carried out under this trust and they are now only done as part of a clinical trial in London.

I believe my dads cancer would not have come back as an aggressive Gleason 9 if he had been offered a different treatment.

Anyway what it proves to me, certainly in the UK do not believe what you are told initially because you think the Dr's are gods and you are so scared you will go along with anything. Take some time to talk to other people and make sure you know the views of all the disciplines in the Multi Team discussions and do not take back door phone calls from Dr's scaring the life out of you as if you are not scared enough.

I have said it before on this site but in the USA you are encouraged to seek out other opinions.

Anyway the good news is my dads psa remains undetectable, but the damage the HIFU has done may effect treatment he has in the future.

I wish anyone who had treatment under the care of Mr Nair that includes bladder and liver cancers, as they have all been recalled, all the best,

We will see what this investigation brings.
Posted 6/15/2017 6:14 PM (GMT 0)
Just an update my dad is doing really well. We all just come back from holiday. He is fitter than me.
I wish everyone well

Yvonne
Posted 6/15/2017 8:28 PM (GMT 0)
Wow Yvonne, i'm a newbie but have just caught up on your history! So so so glad to hear how well your dad is doing. And fair play to you for keeping everyone updated year after year, great to read. This site has been so helpful to us and its fantastic to have people return with good news, gives everyone hope and promise. Best wishes to you and your dad, keep pulling the low ones smile
Posted 6/15/2017 9:54 PM (GMT 0)
Yvonne

Thank you for giving updates!! It is really encouraging to see. You have had quite the medical journey with your dad - very happy he's doing well. Best wishes

Carolyn
Posted 2/12/2018 8:14 PM (GMT 0)
Another low PSA reading everything fine.
Goodluck to everyone xx
Posted 8/4/2019 2:33 PM (GMT 0)
Hello everyone.
Just an update. Feeling a bit scared. As far as my dad's prostate cancer is concerned it remains in remission he has been discharged from the hospital back to his GP.
Over the past two months he has had a cough and been breathless they believe it is COPD. He has the results of his CT scan of the lungs tomorrow. I am praying it has not spread. COPD is bad enough but at least he can get treatment. He is 84 now I still cant bear the thought of losing him. I am going with him so will keep you updated.
All the very best to everyone going through this worry.
Posted 8/4/2019 3:43 PM (GMT 0)
Sorry to hear he's having another health problem.

Do keep us updated.

Andrew
Posted 8/5/2019 1:40 PM (GMT 0)
All seems to be well. All blood tests normal. No increase in his PSA. CT scan of lungs normal. They think it's a viral infection. So pleased. So can another positive update for gleason 9's. His brother remains well as well.
All the very best to everyone.
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