Hi
My dad has a PSA of 14 and underwent biopsies a couple of weeks ago, He recieved a letter a few days ago saying he had a T2/T3 nodule on right lobe with suspicion of invasion of capsule, He has an app at the Drs tomorrow to discuss results, Can anyone give us any advice or words of wisdom please
Thanks
Viv X
Edited by member 04 Jun 2016 at 14:40
| Reason: Not specified
The only time you should look back is to see how far you have come
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User
Happy Father's Day to all you wonderful dads on here I Hope you can enjoy your day as much as physically possible, I've done my research and
Ive bought my dad a nice bottle of Red wine and some dark chocolates, (I know he'd rather have a pint though)
X
The only time you should look back is to see how far you have come
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Hi Viv,
Don't worry, most men who live long enough eventually develop some form of Pca (prostate cancer).
You don't tell us how old your dad is?
If he's in his 60's he has a 60% chance of having PCa, and it basically rises with age 80% of 80 year olds etc.
AND, most men who get PCa don't actually die of it, those of us who have had treatment joke that our doctors define a 'cure' as keeping us alive long enough to die of something else!
The truth is that most men with prostate cancer live full and rewarding lives and tend to die of some other 'old age' problem long before the prostate cancer sees them off.
Your dad's biopsies should have given something known as a Gleason score, it is quite important, those with low Gleason scores under 7 need not worry too much, those with higher Gleason grades usually need treatment.
Once your dad knows his Gleason grade, and T stage is confirmed, he can make informed decisions about treatment options, and you can help him, there is lots of useful information on this site, and lots of other knowledgable people posting on this site who will be happy to answer your questions.
To put things in perspective, I was diagnosed age 54, when I was newly married (2nd time around). My PSA was more than twice your dad's, my Gleason grade was 9 which is about as bad as it gets, I was T3 with question marks about possible spread to my lymph nodes and spine.
Nine years later I am still here, happily married, with two wonderful grandchildren and am about to go on holiday to visit friends in Canada.
So life after diagnosis can be full and rewarding.
:)
Dave
User
Just thought I'd let you's know I've been raving on about you lovely people on this forum to friends, family, colleagues, basically anyone that will listen to me !! Yous are a great bunch of people !! Who have helped me understand about this ugly disease more than Dr Google ever could
I will never moan about the trivial things anymore
I think I may have even twisted my dads arm to join too, My dads not a one for talking about stuff he tends to keep things bottled up, I think this forum would be good for him
Viv X
Edited by member 14 Jun 2016 at 06:12
| Reason: Not specified
The only time you should look back is to see how far you have come
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Hi Dave
That's great that surgery is also an option for you, Unfortunately not everyone has this choice, Seen my dad today he looked loads better, colour in his cheeks and a bit more chatty than last night, He's not been out of bed yet, he had a bit of funny turn today so bed bound until tomorrow and all going well will be coming home tomorrow or Friday :-)
I hope surgery goes well for you and I will also be following your journey
Take care
Thanks Lyn
Thie time until dads post op PSA check will be a much needed rest bite for my dad
Thx
Viv x
Edited by member 13 Jul 2016 at 19:03
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The only time you should look back is to see how far you have come
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My Gleason is also 3+4 but only one one side; the other side is benign. T2 at diagnosis.
I'm now awaiting the date for pre-op assessment and op date and expecting the letter any day now. Not looking forward to it and I really hope that they can do the nerve-sparing surgery; at least they should be able to save one side, else I'm going to have to live off my memories, lol.
Take care and best wishes to all of you. Must be hard for the families. You are in my thoughts.
Glen
User
Please, if there's anyone watching, let me have some luck, lol!
User
Hi
My dad has a PSA of 14 and underwent biopsies a couple of weeks ago, He recieved a letter a few days ago saying he had a T2/T3 nodule on right lobe with suspicion of invasion of capsule, He has an app at the Drs tomorrow to discuss results, Can anyone give us any advice or words of wisdom please
Thanks
Viv X
Edited by member 04 Jun 2016 at 14:40
| Reason: Not specified
The only time you should look back is to see how far you have come
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User
Hello Vivienne and welcome to the site.
I totally agree with Dave's post so won't repeat it.
You say there is a doctor's appt tomorrow, is that with the GP or with a hospital consultant.
Hopefully your dad will have somebody with him (yourself perhaps) and if it's the hospital then a notepad and pen for questions and answers is always a good idea. None of you are likely to take it all in otherwise.
Cancer is a horrible, frightening word and makes most of us immediately think "that's it - I'm doomed"
Well that isn't the case. Yes a PSA of 14 is high, but we have members on here with PSA in the hundreds and although they are in the no cure camp, they live full and active lives with the treatment they are on.
If you go to the Publications section of this site there is something called The Toolkit. It's downloadable and a fount of information regarding all aspects of Prostate Cancer. IT is invaluable for new people especially because it helps form those questions when you meet the consultant.
Please don't despair, there is much that can be done these days. Some treatments (for some people) can be pretty uncomfortable, but not all react the same way to the same treatment.
When you see the doctor, try and find out what dad's Gleason score is as it will indicate the severity?
Dad will need all the support you can give him and I'm sure you won't be backward in offering it.
Any questions you want answers to then please ask. Somebody will have knowledge of experience of it.
In the meantime - keep that chin up, be strong. We are here if you need us
All the best
Sandra
We can't control the winds - but we can adjust our sails |
User
Hello Viv,
Welcome from me too. I was diagnosed almost 2 years ago with a Psa score 33.5 , Gleason score of 7, T3a and local spread to the lymph nodes and seminal vesicle. I have had radio therapy and am still on hormone therapy. Sometimes I think it is harder for those around a patient than for the patient himself. I have had wonderful support from my wife and daughters as well as everyone else I know. It sounds as if you too will be very supportive for your father.
Once you know more about the situation and what treatments will be available for your father, then I am sure that you will become more comfortable with it all, however worrying it all seems now. I decided that I would be as positive as I could be and encouraged my family and friends to think the same. Now I am ever hopeful that the treatment plan suggested for me will provide curative therapy. A good sense of humour also helps. I was treated with dignity and respect will all the medical staff I've encountered which really helped me cope.
Now 2 years on I'm still enjoying life and am keeping very busy. To be honest how I generally feel and live my life is not so dissimilar to how it was before this all began for me. There have been a few changes but nothing that my family and I cannot cope with.
I hope that this helps and my best wishes to you and your family,
John
User
The Prostate Cancer UK nurses are very good and if there is anything you don't understand then don't hesitate to chat on-line with them or give them a call.
As you have seen the users on this site are both friendly and knowledgeable.
User
Thanks for the update Viv. Your confusion and being in a world of your own is usual at the start. It seems to take so long for anything being said to sink in and you're still processing that when the next thing comes up
That's why we recommend writing it down as a memory aid. We've all been there and you kick yourself afterwards for not asking the right questions.
"High" is a relative word and could mean anything from 10 up to the hundreds/thousands.
Were any other treatment options mentioned at all?
We can't control the winds - but we can adjust our sails |
User
Hi Viv
One thing I have found beneficial is to record on your phone, iPad etc the consultations, especially at this early stage, enabling you to refer back to what was actually said and not what you think was said, you can download a free app to do this but ask you consultant first if they mind, explaining it is for your personal use to refer back to if needed.
All the best
Roy
Edited by member 19 May 2016 at 13:50
| Reason: Not specified
User
Re Johsan's comment about 'high' .... A high PSA could be anything from 3.1 up to the thousands so a PSA of 14 is high but not dreadful. A high Gleason would be 8, 9 or 10. Something to look for when you see his results written down after the scans are complete (the consultant usually writes to the GP with the results and your dad can ask for a copy of that letter to be sent to him at the same time).
I hope your dad will do lots of research before he finally opts for a treatment plan - the surgery is complex and side effects can be pretty hard to live with so important that he knows exactly what he might face.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Viviene,
You say that '...I think my dad has more or less made his mind up on having surgery,...',
That is a pretty normal reaction early after diagnosis, before guys know much about PCa, their wish is to cut out the cancer and throw it away.
However things are often rather more comlicated.
Radical Prostectomy may indeed be the best option for your dad, but so might RT, and so might other options.
If he doesn't know his gleason grade and doesn't know the extent of the tumour and doesn't know whether it has spread to secondary sites, then it really is a little early to be making firm decisions about any form of treatment.
Reassure your dad that this is a slow growing cancer and he should take as much time as he needs before deciding on treatment.
:)
Dave
X
User
Best of luck to your Dad. The best thing is to ask them and then chase them. I had my last MRI scan on a Saturday and was told that the results would take 7 days, I chased them late Monday and was given the results! I suspect that they said seven days as is the longest it should take, but as in my case they are frequently available earlier.
User
Good morning twsm
Thank you for the reply, Was wondering if anyone knows if a bone scan is routine? I've heard a few people on here say it isn't usually routine, it's a little unsettling as my dad is having one, Maybe my anxiety getting the better of me at the mo and I'm looking to much into things
X
The only time you should look back is to see how far you have come
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Hi ,Viv,
I had a nuclear med scan as well as a MRI scan before my biopsy. I then had a further MRI scan. Hope this helps.
John
User
Hi Viv, I had a PSA of 63 and had a MRI scan and a bone scan before having a template biopsy and then the Dx of PCa
I am in the Worcestershire area and it depends on which trust has this as standard procedure.
Best of luck with whatever decision your dad makes
Chris/Woody
Life seems different upside down, take another viewpoint
User
Viv, my Gleason was 3+4=7 and T2 staging. I was offered 2 years hormone therapy and radio therapy after three months because my prostate was too close to the rectum wall to be offered a prostectomy. There was the danger of either leaving cancer cells in the wall or breaking through into the rectum and creating all sorts of problems.
I personally would not have gone for the prostectomy if it had been offered to me, I did not want the side effects even though I have s/e's from HT and RT but hopefully short term.
Nobody mentioned Brachytherapy to me so do not know if it would have been an option if I had known about it.
Regards Chris/Woody
Life seems different upside down, take another viewpoint
User
Viv,
I had the nuc med scan due to pain in my hip. It's the bone scan and confirmed that the pain I endure is long standing from another problem and not cancerous.
One tip re scans - a friend of mine told me to wear an eye mask as he knows that I suffer a little from claustrophobia. It really helped me and I had no problems coping with them.
My staging is T3a with a Gleason score of 5+4+3 , with my initial Psa level 33.5. Due to the locally advanced spread to the lymph nodes and seminal vesicle I was not eligible for surgery. I had 37 fractions of RT and will have had 36 months of HT by August 17.
Like Chris I'm not sure if I would have chosen a prostectomy even if I had been eligible. I have been happy with my treatment and I am hopeful that it will eventually proove to be curative.
Good luck to you all,
John
User
Hi Viv,
Not sure if if its routine where I was treated I had MRI, biopsy followed by a bone scan. The hospital's bone scan area was call the department of nuclear medicine.
I think it included the MRI area as well.
Arthur
User
V
Welcome to the site,nice to hear you are looking after Dad.
I had a biopsy followed by MRI scan a week later, a bone scan a couple of weeks later the a CT scan about three months later. My bone scan involved injecting me with a radioactive trace hence nuclear medicine and I assume that is pretty standard. CT scan also involved being injected with some sort of trace material. I waited four months from DX to op, as we were having a new robot installed, PCa is often described as slow growing so hopefully not need to rush decisions.
Thanks Chris
Edited to add PSA was 7.7 Gleason was 4+3.
Edited by member 28 May 2016 at 12:42
| Reason: Not specified
User
Hi, the quick answer is that some hospitals would bone scan every man diagnosed while others would only bone scan if the scores were very high.
No reason to panic or start trying to second guess - as hard as it is, all you can do is wait for all the results.
Have a lovely weekend.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi V
My own hubby had a PSA of 25 but a hard prostate on DRE so a bone scan./MRI was required and we made an appointment for two weeks after that and sadly, we got the horrible diagnosis of cancer spread, lymph and bone and a G score of 10. PSA seems to mean little in this disease but you do need the full works if potential spread outside the prostate is possible.
Good luck
Devonmaid
User
Hi Viv
I wouldn't have thought the nurse would have rung to give false hope so I'd take it as a positive until such time as it's contradicted.
It's all a horribly worrying time eh.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
V
It can be useful to get the scan reports if possible, they can show up other non cancer but age related conditions. For various reasons I did not get my CT scan report and spent six months being treated for reflux acid, when I eventually went for a new scan it came to light that the CT scan pre op had shown a number of gallbladder stones and sludge.
Thanks Chris
User
Twist his arm Viv by all means.
He might find comfort from reading even if he wouldn't want to post. He would also have the option of asking somebody directly (via the name under the profile picture) if something appeared on screen that he feels he'd like information on but it's too personal to write down.
He could have private conversations, one to one, with a member who he can see is going through the same as him.
Worth pointing out anyway.
Has he ever looked at the site or does he just know about it from what you tell him. Perhaps if you show him the page he'd be more comfortable viewing for a while before joining.
Anyway, glad you've found us helpful !!
We can't control the winds - but we can adjust our sails |
User
Can't help with the questions Viv and I'm sure that I don't need to remind you to write down both the questions as advised by members here and the answers.
Good luck all of you. A stressful time but at least you'll know where dad stands
We can't control the winds - but we can adjust our sails |
User
User
Hello Vivienne
I just wanted to send good thoughts out to your dad and you.today. My OH had has bone scan last week, is booked in for his MRI on Saturday and we have the app to discuss results and treatment plan on the 30th so we seem to be at similar stages right now. I too came away from the first app feeling annoyed with myself for not getting all the info I needed and the guy we saw was not the greatest communicator and only really responded to questions rather than offer up information, so like you I hope to be more prepared this time so the questions posted will be a great help.
Ithe waiting is so awful isn't it, I don't know about you but my mind just does overtime and a good nights sleep is a thing of the past but as someone else said at least we are close to knowing the full picture and getting the all important treatment plan which from reading a lot of the posts on here will lead us straight into the next phase of decisions and, for me anyway more sleepless nights.
I will be thinking of you today,
User
Hello Vivienne,
Just to let you know that my thoughts are with you and your family today, my OH was told he at PC in March and we get the results of his MRI tomorrow. So I understand every emotion that you are going through right now. Hope all goes well x
User
V
Good news that there is no spread, hope all goes well with the treatment.
Thanks Chris.
User
"Good" news Viv.
Enjoy the next 6 weeks or so.
Tell dad to start his pelvic floor exercises (Kegal) to strengthen those muscles.
Hope all goes well for him
We can't control the winds - but we can adjust our sails |
User
Viv that is so great. Don't feel guilty. I am keeping everything crossed for my oh results on the 30th - seems ages away though 😱
User
Good News on no spread Viv..
Now that the treatment plan is known try and enjoy the time beforehand (I went on holiday before my op!) and hope all goes well with your Dad's op.
KRO...
User
Hi Lyn
I will be thinking of you and your OH tomorrow and pray you get the news you want to hear
Take care
Viv x
The only time you should look back is to see how far you have come
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Hi Viv
Such a relief to have the results as you can then move on to the next phase.Take time to chill as apart from reading up on what to expect there is nothing to be achieved by worrying now.
There are many of us on this site who have had the op and although each experience will be unique we will all be happy to help with any questions you may have.
Today was my last day of salvage RT so I am also feeling pretty good this evening.
Hope you all have a lovely weekend.
Kind regards
Kevan
User
The best you could have hoped for and nothing to feel guilty about - we all love it when someone gets good news.
It would be great if dad could get away for a holiday now - he may not feel like it for a good few weeks or months after the op. Also, if he is still sexually active, lots of opportunity to do what couples do, but he perhaps wouldn't want to discuss that with you!!! Also, time to start on the shopping list - there are a few threads on here with helpful suggestions but I would start with:
- tracksuit / jogging bottoms with a drawstring waist in a dark colour (M&S make some in navy or black sweatshirt material)
- pyjama bottoms with drawstring waist or loose elastic
- underpants (not boxers) in a size larger than he normally wears
- a bucket to stand the night bag in
- a waterproof sheet for the bed (preferably not PVC - they make a decent one in terry cotton at Dunelm) - or disposable bed pads
- incontinence pads, unless your GP / district nursing team confirm that they will provide these - most seem to rate the Tena for Men as most comfortable and Tesco, Asda etc often do BOGOF. Don't buy the ladies version by mistake - very uncomfortable and all the padding is in the wrong area
Others will come along with their own thoughts on what to buy
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks everyone for your comments, I will be following each of your journeys with hope for you all,
Thanks Lyn
That list will come in very handy
Think my mum and dad are going to get away from everything for a week or two
I have a family holiday booked abroad with my husband and son smack bang in the middle of the time scale given for my dads op, :-( !!! Not going to even think of what to do about that for a little while
X
The only time you should look back is to see how far you have come
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I can well imagine that your Dad might be feeling a bit relieved that the date has been brought forward as even though the planned break would be welcome, it only human nature to still be on a countdown.
Thinking of you all and I feel confident that the op will be fine.A step at a time following the op and if Dad or any of you have any further questions that we can help with then please say.
Kind regards to all,
Kevan
User
Hi Viv
The pre op assessment does exactly what it says on the tin. Many older men are not candidates for surgery because of other health conditions , but your pop has passed with flying colours. You're all bound to have doubts but I'm sure it will all be ok Good luck
User
Viv, I'm sure from a pre-op point of view your dad will be fine.
No surgeon is going to risk his reputation operating on a man with other health problems. If dad is deemed fit enough by those who know then relax.
Nag him about the pelvic floor exercises by all means, but try not to fret over the success of the op. I'm sure he will be fine.
We can't control the winds - but we can adjust our sails |
User
Good luck to you all
My op took 4 1/2 hrs by hand laparoscopic.
User
V
I went in at 7.00AM, saw the surgeon for a quick chat and do the paperwork, then saw the anaesthetist for a chat and a bit more paperwork. Then got gowned up, surgical stockings, a few more questions on allergies tagged up and ready to go. Then had a slight delay because the air scrubbers in theatre were not working. Into the anaesthetic room, asked if it was too late to change my mind, had the cannulas etc fitted and off to sleep. Woke up in recovery had a cup of coffee and the best toast ever. I was then driven to the ward by a porter who had aspirations of being an F1 driver, arrived about 14.00. The surgeon had already phoned the wife to say all had gone well. The actual op was around 4 hours.
They wanted me out of bed and sitting in a chair by 18.00.
All the best for tomorrow, make sure he has ear plugs for the night in hospital and remember no straining to pass that first motion.
Thanks Chris
PS it was Robot surgery.
Edited by member 11 Jul 2016 at 19:00
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User
Thanks for the reply Chris
Will post a little update tomorrow evening
Viv
The only time you should look back is to see how far you have come
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Hi Chris thanks for replying
And sharing this Info, I will take note about the ear plugs !!!
Viv x
The only time you should look back is to see how far you have come
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User
Hi Viv
All the best to your Dad for tomorrow. Hopefully he will feel pretty good after the op but try to make sure he doesn't overdo things.
There will be a lot of swelling and things will be a strange colour for quite a while. Not the sort of thing he might want to discuss with his daughter but he might reassurance that this is normal.
Kind regards
Kevan
User
Open RP and laparoscopic tend to be a bit quicker at 4 - 5 hours. Robotic can be anything from 4 - 6 hours. Sometimes it takes longer because they decide to send some tissue to the lab for testing during the op, or because there has been something unexpected. My husband's op was much longer because they had to get through scar tissue from previous ops (he had his appendix out years ago, and some other op that I have forgotten) plus they had to redesign the bottom of his bladder (which they had not anticipated). That meant that I was sitting in a hospital waiting room at 10.30pm waiting for the surgeon to come & tell me how it had gone .... very stressful!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Great news Viv
He might be in for an uncomfortable first night ( the gas they fill you with causes quite a bit of pain ) , but hopefully by the time you see him tomorrow things will have settled down a bit.
Best wishes
Chris
User
Hi Vivienne,
Good news that your dad has had the operation. I'm sure his recovery will go well.
May I wish your dad all the best for the months to come.
Steve
User
Hi Viv,
Glad your Dad has had his operation and I hope his recovery goes smoothly for him.
Wishing you and your family well for the times ahead,
John
User
V
Good to hear that part is over,that sounds like a long day for you all. I was fairly pain free and had no discomfort from the gas CJ mentioned,but I saw quite a few guys who were uncomfortable with it. I suspect he will look alot brighter when you see him today. So now it is keep mobile but no marathons.
Thanks Chris.
User
Glad that's over for him (and all of you)
Before he leaves hospital get him to ask about something for constipation because he won't want to be straining believe me.
*****
We can't control the winds - but we can adjust our sails |
User
Hi Viv
Eight weeks is the norm for PSA test and Histology review with Urologist.
User
Hi glen
I wish you luck for your results and treatment plan today, the waiting is just horrendous but once you know the deal hopefully things will be a little easier for you
Will be thinking of you
Viv x
The only time you should look back is to see how far you have come
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Often advised to get PSA test 5-6 weeks post-op with consultant meeting to get pathology and PSA around 6-8 weeks post-op
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Vivienne,
Saw the oncologist and urologist this afternoon. Op scheduled for middle of August and pre-op assessment at the end of this month.
I shall be keeping a very close eye on your dad's progress as I'm going to be "in the same boat" in about four weeks.
Take care and tell him that we are all thinking of him.
Regards
Dave
User
Oh no! Hope they sort him out very quickly. Keep strong Viv. You know we're here if you want to let off steam. Any idea what caused the swelling? Is is abdomen, his bladder?
We can't control the winds - but we can adjust our sails |
User
Hi Viv,
Hope everything's ok for your dad.
Steve
User
Oh my goodness Viv, how worrying. Please let us know what's happening with dad
Love
Devonmaid
User
Viv,
Sorry that your Dad has this problem. Hope all is ok for him now.
John
User
V
Glad to hear is is back home, hopefully the anti biotics will kick in and everything will go back to the new normal.Did he get extra bags etc for the extended period of catheterisation etc.
Thanks Chris
User
PC takes its toll, whether it's the treatment or the fear that you have it.
Your dad has been through a lot recently and it will be showing, physically and mentally.
Once the effects of the op and the antibiotics kick in he should feel so much better, more optimistic and able to deal with the aftermath.
You're doing a great job supporting him
*******
We can't control the winds - but we can adjust our sails |
User
Sorry to read about your Dad's problem.
Hope the antibiotics quickly do their work and he can get the catheter removed soon.
KRO...
User
Hi Colleen
It's amazing how similar our dads journeys have been so far !! Its fantastic to hear your dad has got the all clear :-) I'm hoping my dad will too when he recieves his pathology in 8 weeks time, my dad is Gleason 4+3 but we are praying that everything comes back clear, it's so worrying for us daughters and wives to see our loved ones go through this awful disease,
Best wishes to you and your family
Viv x
The only time you should look back is to see how far you have come
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User
Yes my dad was a Gleason 7 also, but 3+4.
It was very difficult times after getting the diagnosis, there were lots of tears between me, mum and my sister, but we kept strong for dad. The waiting and not knowing was the worst.... Waiting 2 weeks for the MRI results seemed like forever! Now it just all seemed like a nightmare that we've woken up from!! My dad is still not as strong as he was, a little tender in scar tissue on side, but otherwise living life like before. I shall follow your updates and wishing your dad a speedy recovery 😊 X
Edited by member 21 Jul 2016 at 20:57
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User
Hi Glen,
some people have full nerve-sparing but never have an erection again. Others supposedly have all nerves removed but do regain some sexual function. It seems to be as much about how bruised the nerve bundles are, how much was cauterised during the op - and a bit of luck thrown in. My OH had most of one side spared and has recovered his erectile function but it took 4 years of pump, every tablet going and injections. He still has some ED but now emotional rather than physical.
Enjoy these weeks before the op and do plenty of what couples do, just in case!
Edited by member 24 Jul 2016 at 20:43
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Viv
I'm not sure many have had re-catheterisstion so quickly. But wound infections are quite common. I had the 5 hole laprascopic operation and the drain hole got infected quite badly. Redness spreading all over my hip and abdomen. But anti B's sorted it. Hope it all goes well today.
User
V
Great news about the margins and hope the PSA is nice and low.
Thanks Chris
User
User
Hi Viv
Great news. Fingers crossed for Dad's PSA result.
Kevan
User
Thank you. It's the first time I have posted so didn't know where to write really. I've done my own thread now. Thanks X
User
Lovely news Viv. Thanks for the update
*******
We can't control the winds - but we can adjust our sails |
User
Hi Viv.
My dad had a post op appointment, but with surgeon about 6 weeks after. It was to discuss PSA results and he was given all clear. 2 weeks later he had appointment with nurse, there were several other men there, all In room for info on post op ED, told them all about possible methods and shown a video of a pump, how to use etc. So your dad could be there to discuss that side of things. My dad has had another appointment regarding ED since, they told him even tho he's not that sexually active anymore, they advise to still use the pump every now and then as like any muscle, if u don't use it, it gets weaker. My dad told the nurse 'it's such a big ado about a small thing', haha!! All the best.
Colleen x
Edited by member 11 Sep 2016 at 17:38
| Reason: Not specified
User
Hi Colleen
Thanks so much for the info it helps a lot, just don't want to make my dad feel uncomfortable, think I will stay away and let my mum give me the low down afterwards
All the best to you and your dad too
Viv xxx
The only time you should look back is to see how far you have come
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Hi Vivienne.
If memory serves me correctly, ED was mentioned at the post op follow up. Actually, we had a form to fill in and ED was one of the subjects covered. It was then mentioned at the meeting based on what we had written down.
If dad is the shy sort he probably wouldn't want that discussion in front of you so may be wise to stay out of the room, although there wouldn't be anything to stop you going to the hospital with them and travelling back with them would there?
******
We can't control the winds - but we can adjust our sails |
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That's superb Viv. Very jealous.
The result is basically saying that all of your dads cancer has been removed , and that he is technically cured. However ( sorry ) some men find over a period of time eg 3 years, that their PSA starts creeping up again , meaning that some was left behind ( a positive margin ) and is beginning to grow again , or that the cancer had spread microscopically to elsewhere in the body prior to the op.
It is AMAZING news and the best news you could hope for. A very successful operation with loads of hope attached. Best wishes x
User
P.S.
If it rises slowly you can have RT to zap what is left., also heading for a full cure. And if it has spread there is RT and HT etc etc. He is in a good position.
User
Great news Viv.
Bet you are all celebrating eh !!
*******
We can't control the winds - but we can adjust our sails |
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Hi Viv
Such brilliant news😊
I am so happy for you all.
Kevan
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V
The PSA being undectable post op is a brilliant place to start, hope it continues for a long time.
Thanks Chris
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Well it is great news although it doesn't yet mean that he is cured. The PSA is important but so is the pathology result which dad will presumably get tomorrow - much will depend on whether the lab says they got it all out. If so, then as long as dad gets undetectable PSA for 10 years, he will be officially 'in remission' although some hospitals say that remission is 5 years of undetectable.
My dad's came back 13 years later though, so your dad will always need regular blood tests to keep an eye on it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good luck to dad for his post op check up today. Hope the news is encouraging for you all
*****
We can't control the winds - but we can adjust our sails |
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Hi,
Hope everything goes well today.
Please give your Dad my Best Wishes.
Steve
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Hi Viv,
Don't worry, most men who live long enough eventually develop some form of Pca (prostate cancer).
You don't tell us how old your dad is?
If he's in his 60's he has a 60% chance of having PCa, and it basically rises with age 80% of 80 year olds etc.
AND, most men who get PCa don't actually die of it, those of us who have had treatment joke that our doctors define a 'cure' as keeping us alive long enough to die of something else!
The truth is that most men with prostate cancer live full and rewarding lives and tend to die of some other 'old age' problem long before the prostate cancer sees them off.
Your dad's biopsies should have given something known as a Gleason score, it is quite important, those with low Gleason scores under 7 need not worry too much, those with higher Gleason grades usually need treatment.
Once your dad knows his Gleason grade, and T stage is confirmed, he can make informed decisions about treatment options, and you can help him, there is lots of useful information on this site, and lots of other knowledgable people posting on this site who will be happy to answer your questions.
To put things in perspective, I was diagnosed age 54, when I was newly married (2nd time around). My PSA was more than twice your dad's, my Gleason grade was 9 which is about as bad as it gets, I was T3 with question marks about possible spread to my lymph nodes and spine.
Nine years later I am still here, happily married, with two wonderful grandchildren and am about to go on holiday to visit friends in Canada.
So life after diagnosis can be full and rewarding.
:)
Dave
User
Hello Vivienne and welcome to the site.
I totally agree with Dave's post so won't repeat it.
You say there is a doctor's appt tomorrow, is that with the GP or with a hospital consultant.
Hopefully your dad will have somebody with him (yourself perhaps) and if it's the hospital then a notepad and pen for questions and answers is always a good idea. None of you are likely to take it all in otherwise.
Cancer is a horrible, frightening word and makes most of us immediately think "that's it - I'm doomed"
Well that isn't the case. Yes a PSA of 14 is high, but we have members on here with PSA in the hundreds and although they are in the no cure camp, they live full and active lives with the treatment they are on.
If you go to the Publications section of this site there is something called The Toolkit. It's downloadable and a fount of information regarding all aspects of Prostate Cancer. IT is invaluable for new people especially because it helps form those questions when you meet the consultant.
Please don't despair, there is much that can be done these days. Some treatments (for some people) can be pretty uncomfortable, but not all react the same way to the same treatment.
When you see the doctor, try and find out what dad's Gleason score is as it will indicate the severity?
Dad will need all the support you can give him and I'm sure you won't be backward in offering it.
Any questions you want answers to then please ask. Somebody will have knowledge of experience of it.
In the meantime - keep that chin up, be strong. We are here if you need us
All the best
Sandra
We can't control the winds - but we can adjust our sails |
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Hello Viv,
Welcome from me too. I was diagnosed almost 2 years ago with a Psa score 33.5 , Gleason score of 7, T3a and local spread to the lymph nodes and seminal vesicle. I have had radio therapy and am still on hormone therapy. Sometimes I think it is harder for those around a patient than for the patient himself. I have had wonderful support from my wife and daughters as well as everyone else I know. It sounds as if you too will be very supportive for your father.
Once you know more about the situation and what treatments will be available for your father, then I am sure that you will become more comfortable with it all, however worrying it all seems now. I decided that I would be as positive as I could be and encouraged my family and friends to think the same. Now I am ever hopeful that the treatment plan suggested for me will provide curative therapy. A good sense of humour also helps. I was treated with dignity and respect will all the medical staff I've encountered which really helped me cope.
Now 2 years on I'm still enjoying life and am keeping very busy. To be honest how I generally feel and live my life is not so dissimilar to how it was before this all began for me. There have been a few changes but nothing that my family and I cannot cope with.
I hope that this helps and my best wishes to you and your family,
John
User
The Prostate Cancer UK nurses are very good and if there is anything you don't understand then don't hesitate to chat on-line with them or give them a call.
As you have seen the users on this site are both friendly and knowledgeable.
User
Hi
Sorry for the late reply guys,
Been to see the consultant with my dad today, Told him the cancer had spread out of the prostate but didn't think it had spread elsewhere but won't know for defenite until he has a bone scan/MRI . I asked about my dads Gleason score and all he said was thst it was high, wish I had pushed for more details but I think I was just in a world of my own, He thinks surgery would be the best option (my dad is pretty fit for a 72 year old) , I pray that my dad will be ok I can't imagine life without him :-(
I thank you all so much for taking the time to offe advice and words of wisdom, I hope life is good to you,
I will keep you updated on progress
Viv 🙏🏼
The only time you should look back is to see how far you have come
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Thanks for the update Viv. Your confusion and being in a world of your own is usual at the start. It seems to take so long for anything being said to sink in and you're still processing that when the next thing comes up
That's why we recommend writing it down as a memory aid. We've all been there and you kick yourself afterwards for not asking the right questions.
"High" is a relative word and could mean anything from 10 up to the hundreds/thousands.
Were any other treatment options mentioned at all?
We can't control the winds - but we can adjust our sails |
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Hi Viv
One thing I have found beneficial is to record on your phone, iPad etc the consultations, especially at this early stage, enabling you to refer back to what was actually said and not what you think was said, you can download a free app to do this but ask you consultant first if they mind, explaining it is for your personal use to refer back to if needed.
All the best
Roy
Edited by member 19 May 2016 at 13:50
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Hi
I will keep in mind writing it down or recording the next consultation, sounds like a good idea. He only mentioned R/T and surgery, I think my dad is going to opt for surgery, Holding on to a little glimmer of hope that the consultant said he doesn't think it had spread elsewhere but the MRI and bone scan will tell us that, More waiting and uncertainty ahead, waiting for appointments then results which I know all you guys will have experienced,
Speak soon and thanks once again for your advice
Viv X
The only time you should look back is to see how far you have come
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Re Johsan's comment about 'high' .... A high PSA could be anything from 3.1 up to the thousands so a PSA of 14 is high but not dreadful. A high Gleason would be 8, 9 or 10. Something to look for when you see his results written down after the scans are complete (the consultant usually writes to the GP with the results and your dad can ask for a copy of that letter to be sent to him at the same time).
I hope your dad will do lots of research before he finally opts for a treatment plan - the surgery is complex and side effects can be pretty hard to live with so important that he knows exactly what he might face.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi LyneEyre
Thank you so much for your advice, As a newbie on here I'm finding it so overwhelming and lovely how people are taking the time to help and advise others, I think my dad has more or less made his mind up on having surgery, You seem to have lots of knowledge on P/C in your experience and understanding what do you think of surgery please ?
Thanks
Viv x
The only time you should look back is to see how far you have come
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Hi Viviene,
You say that '...I think my dad has more or less made his mind up on having surgery,...',
That is a pretty normal reaction early after diagnosis, before guys know much about PCa, their wish is to cut out the cancer and throw it away.
However things are often rather more comlicated.
Radical Prostectomy may indeed be the best option for your dad, but so might RT, and so might other options.
If he doesn't know his gleason grade and doesn't know the extent of the tumour and doesn't know whether it has spread to secondary sites, then it really is a little early to be making firm decisions about any form of treatment.
Reassure your dad that this is a slow growing cancer and he should take as much time as he needs before deciding on treatment.
:)
Dave
X
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Hi Dave
Thanks for the advice, I think we are all so overwhelmed with all the different treatments, I think we will try to pursuade him to not make any decision until he has his bone/CT scans,
Thank you once again for sound advice.
Viv :-) X
The only time you should look back is to see how far you have come
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Good morning
My dad has an app for a bone scan this coming Wednesday at the Freeman hospital in Newcastle and was just wondering if anyone had an idea of the time scale for waiting for results please ?
Feeling more and more anxious day by day, Trying to stay positive though
Thanks
Viv X
The only time you should look back is to see how far you have come
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Best of luck to your Dad. The best thing is to ask them and then chase them. I had my last MRI scan on a Saturday and was told that the results would take 7 days, I chased them late Monday and was given the results! I suspect that they said seven days as is the longest it should take, but as in my case they are frequently available earlier.
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Good morning twsm
Thank you for the reply, Was wondering if anyone knows if a bone scan is routine? I've heard a few people on here say it isn't usually routine, it's a little unsettling as my dad is having one, Maybe my anxiety getting the better of me at the mo and I'm looking to much into things
X
The only time you should look back is to see how far you have come
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Hi ,Viv,
I had a nuclear med scan as well as a MRI scan before my biopsy. I then had a further MRI scan. Hope this helps.
John
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Hi Viv, I had a PSA of 63 and had a MRI scan and a bone scan before having a template biopsy and then the Dx of PCa
I am in the Worcestershire area and it depends on which trust has this as standard procedure.
Best of luck with whatever decision your dad makes
Chris/Woody
Life seems different upside down, take another viewpoint
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Hi john
Thanks for your reply, I presume different hospitals have different protocol. Wow !! Never heard of a nuclear med scan, I presume it takes scans of your organs, I need to get clued up to all of this terminology, (my dad has only just been diagnosed) sounds very scientific all the same,
Thanks
Viv
The only time you should look back is to see how far you have come
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Hi Chris
Thanks for your reply
That's what i was hoping, my dad seems to have had things done a different way round, PSA 14 Biopsy with Gleason 7 now app for bone scan then CT, thanks for your input much appreciated
Viv
The only time you should look back is to see how far you have come
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Viv, my Gleason was 3+4=7 and T2 staging. I was offered 2 years hormone therapy and radio therapy after three months because my prostate was too close to the rectum wall to be offered a prostectomy. There was the danger of either leaving cancer cells in the wall or breaking through into the rectum and creating all sorts of problems.
I personally would not have gone for the prostectomy if it had been offered to me, I did not want the side effects even though I have s/e's from HT and RT but hopefully short term.
Nobody mentioned Brachytherapy to me so do not know if it would have been an option if I had known about it.
Regards Chris/Woody
Life seems different upside down, take another viewpoint
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Hi Chris
Nothing seems straight forward eh ?
Good luck with everything
Keep us posted on your progress it gives hope to others, And vise versa I will too 👍🏼
Viv
The only time you should look back is to see how far you have come
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Viv,
I had the nuc med scan due to pain in my hip. It's the bone scan and confirmed that the pain I endure is long standing from another problem and not cancerous.
One tip re scans - a friend of mine told me to wear an eye mask as he knows that I suffer a little from claustrophobia. It really helped me and I had no problems coping with them.
My staging is T3a with a Gleason score of 5+4+3 , with my initial Psa level 33.5. Due to the locally advanced spread to the lymph nodes and seminal vesicle I was not eligible for surgery. I had 37 fractions of RT and will have had 36 months of HT by August 17.
Like Chris I'm not sure if I would have chosen a prostectomy even if I had been eligible. I have been happy with my treatment and I am hopeful that it will eventually proove to be curative.
Good luck to you all,
John
User
Hi Viv,
Not sure if if its routine where I was treated I had MRI, biopsy followed by a bone scan. The hospital's bone scan area was call the department of nuclear medicine.
I think it included the MRI area as well.
Arthur
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V
Welcome to the site,nice to hear you are looking after Dad.
I had a biopsy followed by MRI scan a week later, a bone scan a couple of weeks later the a CT scan about three months later. My bone scan involved injecting me with a radioactive trace hence nuclear medicine and I assume that is pretty standard. CT scan also involved being injected with some sort of trace material. I waited four months from DX to op, as we were having a new robot installed, PCa is often described as slow growing so hopefully not need to rush decisions.
Thanks Chris
Edited to add PSA was 7.7 Gleason was 4+3.
Edited by member 28 May 2016 at 12:42
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Hi, the quick answer is that some hospitals would bone scan every man diagnosed while others would only bone scan if the scores were very high.
No reason to panic or start trying to second guess - as hard as it is, all you can do is wait for all the results.
Have a lovely weekend.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi everyone
Thx for sharing your journey so far, so much appreciated and will remember all the kind words and advice in the coming weeks and months to help my dad on his journey to hopeful recovery
Hope u are all enjoying the lovely sunshine (well in Newcastle it is anyway) everything seems that little bit better with a bit of sun on your face
Take care
Viv X
The only time you should look back is to see how far you have come
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Hi Viv! We're in a similar area and my fiance had the same approach as your Dad ie. PSA result, then biopsy, then a bone scan and MRI. Presuming that must be the protocol up here? I know first hand how nervewracking this wait is for you (seemingly endless!) it's horrible so I really feel for you. x
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Hi V
My own hubby had a PSA of 25 but a hard prostate on DRE so a bone scan./MRI was required and we made an appointment for two weeks after that and sadly, we got the horrible diagnosis of cancer spread, lymph and bone and a G score of 10. PSA seems to mean little in this disease but you do need the full works if potential spread outside the prostate is possible.
Good luck
Devonmaid
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Hi
My dad has recieved a call from the nurse this morning (I've not been eating and sleeping very well at all for the past 2 weeks waiting for this call, my dad neither) with my dads scan results, She said his CT scan looked fine and his bone scan too, although a few hotspots showed up in his back and fingers too which looked like arthritis,(my dads had a bad back for over 20 years) The team will discuss the best treatment at the Freeman hospital next week,
Does all this sound good ? Not sure if the consultant has seen the scans yet, but the nurse said they looked OK, so that's good enough for me
Viv x
The only time you should look back is to see how far you have come
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Hi Viv
I wouldn't have thought the nurse would have rung to give false hope so I'd take it as a positive until such time as it's contradicted.
It's all a horribly worrying time eh.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Hi Sandra
That's what I was thinking too so I'm going to stay positive, for now anyway
Thanks
Viv X
The only time you should look back is to see how far you have come
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V
It can be useful to get the scan reports if possible, they can show up other non cancer but age related conditions. For various reasons I did not get my CT scan report and spent six months being treated for reflux acid, when I eventually went for a new scan it came to light that the CT scan pre op had shown a number of gallbladder stones and sludge.
Thanks Chris
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Hi
Thanks for your reply Chris, I think we may try and get a copy of the scans, especially after reading about yours, sorry to hear you had a bad time regarding your scans
Take care
Viv
The only time you should look back is to see how far you have come
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Just thought I'd let you's know I've been raving on about you lovely people on this forum to friends, family, colleagues, basically anyone that will listen to me !! Yous are a great bunch of people !! Who have helped me understand about this ugly disease more than Dr Google ever could
I will never moan about the trivial things anymore
I think I may have even twisted my dads arm to join too, My dads not a one for talking about stuff he tends to keep things bottled up, I think this forum would be good for him
Viv X
Edited by member 14 Jun 2016 at 06:12
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The only time you should look back is to see how far you have come
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Twist his arm Viv by all means.
He might find comfort from reading even if he wouldn't want to post. He would also have the option of asking somebody directly (via the name under the profile picture) if something appeared on screen that he feels he'd like information on but it's too personal to write down.
He could have private conversations, one to one, with a member who he can see is going through the same as him.
Worth pointing out anyway.
Has he ever looked at the site or does he just know about it from what you tell him. Perhaps if you show him the page he'd be more comfortable viewing for a while before joining.
Anyway, glad you've found us helpful !!
We can't control the winds - but we can adjust our sails |
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Happy Father's Day to all you wonderful dads on here I Hope you can enjoy your day as much as physically possible, I've done my research and
Ive bought my dad a nice bottle of Red wine and some dark chocolates, (I know he'd rather have a pint though)
X
The only time you should look back is to see how far you have come
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Good afternoon
My dad has his long awaited app with his consultant tomorrow and will find out his MRI/Bone scan results and his treatment plan, Myself and my mum will be going with my dad to the app, I was wondering if u lovely people have any advice of the kind of questions we should be asking regarding the results of scans and my dads treatment plan please ? I didn't feel very prepared with my dads initial app with the consultant and came away feeling annoyed and frustrated with myself that I I didn't ask many questions, I really want to get the most out of this app,
The last 3 months since my dads initial diagnoses have just blurred into one long waiting game, I appreciate its the same for everyone during these early stage thanks in advance for any guidance and advice
Viv x
The only time you should look back is to see how far you have come
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Can't help with the questions Viv and I'm sure that I don't need to remind you to write down both the questions as advised by members here and the answers.
Good luck all of you. A stressful time but at least you'll know where dad stands
We can't control the winds - but we can adjust our sails |
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Hi Chris
Thanks for this !! this is just what I was looking for, I will write some of these questions down for tomorrow, He's gonna feel like it's question and answer time by the time I'm finished lol But it's important and I'm sure the consultant will understand our concerns
Thanks once again
Viv
The only time you should look back is to see how far you have come
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Hello Vivienne
I just wanted to send good thoughts out to your dad and you.today. My OH had has bone scan last week, is booked in for his MRI on Saturday and we have the app to discuss results and treatment plan on the 30th so we seem to be at similar stages right now. I too came away from the first app feeling annoyed with myself for not getting all the info I needed and the guy we saw was not the greatest communicator and only really responded to questions rather than offer up information, so like you I hope to be more prepared this time so the questions posted will be a great help.
Ithe waiting is so awful isn't it, I don't know about you but my mind just does overtime and a good nights sleep is a thing of the past but as someone else said at least we are close to knowing the full picture and getting the all important treatment plan which from reading a lot of the posts on here will lead us straight into the next phase of decisions and, for me anyway more sleepless nights.
I will be thinking of you today,
User
Hello Vivienne,
Just to let you know that my thoughts are with you and your family today, my OH was told he at PC in March and we get the results of his MRI tomorrow. So I understand every emotion that you are going through right now. Hope all goes well x
User
Hi just a little update on my dad
We seen the consultant today for results of his MRI/Bone scans and to discuss dads treatment plan, He told us my dads cancer has not spread (could have cried with relief there and then !!) My dad has opted for surgery which the consultant stated would be non nerve sparing and will also be taking lymph nodes away too, It's the best news we could have been given under the circumstances, Surgery will be within the next six weeks, so we have a little bit of a breather for the time being
Viv x
Can't help feeling a bit guilty writing these positive comments about my dad when others aren't so lucky :-(
The only time you should look back is to see how far you have come
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V
Good news that there is no spread, hope all goes well with the treatment.
Thanks Chris.
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"Good" news Viv.
Enjoy the next 6 weeks or so.
Tell dad to start his pelvic floor exercises (Kegal) to strengthen those muscles.
Hope all goes well for him
We can't control the winds - but we can adjust our sails |
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Viv that is so great. Don't feel guilty. I am keeping everything crossed for my oh results on the 30th - seems ages away though 😱
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Good News on no spread Viv..
Now that the treatment plan is known try and enjoy the time beforehand (I went on holiday before my op!) and hope all goes well with your Dad's op.
KRO...
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Hi
Thanks everyone for your comments,
Mountain stream I pray you too will have good scan results for your OH I feel for you as the waiting is just awful,
Take care
Xxx
The only time you should look back is to see how far you have come
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Hi Lyn
I will be thinking of you and your OH tomorrow and pray you get the news you want to hear
Take care
Viv x
The only time you should look back is to see how far you have come
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