Good morning Colin and welcome.
Firstly, could I just say how fortunate you are!! Odd thing to say eh? BUT if you hadn't gone to the pub on that particular night then you would still have had the possibility of prostate cancer and it would have been much further down the line.
As Colin (Lyrical) says, try not to worry too much. There could be a number of reasons for a high PSA (infection, prostatitis, even sex just before the test believe it or not)
OK, so half the prostate being hard makes the possibility that much more real, BUT again, it isn't all doom and gloom.
If you have been reading through the posts on this site you will have seen that there are many many men on here who have massive PSA scores and very high Gleason scores and who have still had treatment and are living their lives to the full.
There are many options available to PC men now and cures are definitely possible.
To help you sort it all out in your mind you could try ordering (or downloading) the TOOLKIT from this website.
Go back to the home page then publications. They are all free of charge.
Personally think the hard copies make it easier for referencing as you look through the different choices.
You are blessed in having a wife who is going to support you.
As far as reading everything about prostate cancer that you can, it's best not to browse the web on it but stick to particular sites like this one. Don't believe all the anecdotes you read.
Not everyone is the same and the same treatments might not be suitable for all. if it comes down to it and you do have cancer then there isn't a single member on here that won't offer you support and guidance.
Get that toolkit. Get a notebook and pen. Read this toolkit make notes about things you want further info on.
If you need clarification then ask on here (there are also nurses on here ready and available to help with queries) and believe me there are no questions you need to be embarrassed about.
When you go to see the consultant take the list of questions with you. Take somebody else with you as it is a lot to take in and you are bound to miss some of it or put a different perspective on it to the other person. Together you can sort out what was said. Consultants are used to us all turning up with our list of questions and won't bat an eyelid.
Good luck and best wishes to both of you. You came to the right place
Sandra
Edited by member 04 May 2015 at 09:23
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
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Thanks to Lyrical and Sandra for your reassurance, but it's still hard to deal with. I'll be pleased when I've had the scan and biopsy. Apparently a link exists between prostrate an my sister having had breast cancer.
I'll wait and get the toolkit, if I'm told the tests are positive. Don't want to tempt fate.
Thanks Colin
User
Hello again
Well it's been a long week. I had my MRI yesterday and finally had my biopsy today. So now have to wait for the results. One question I have is after the biopsy I've drank loads of fluids as instructed but yet don't feel the urge to urinate. I understand the the prostrate will be swollen ho long does it take to reduce in size and allow me to go.
Thanks.
User
Hi Damperman,
You should be able "to go" when you want to go. There shouldn't be alot of swelling as such.
If you feel you want to go, ie. your bladder is full, but can't, get yourself down to A&E.
Flexi
ps. don't be surprised if your urine is tinged with blood
pps. you've been asked to drink a lot of fluids to dilute your urine and so prevent the formation of a blood clot
Edited by member 08 May 2015 at 18:57
| Reason: Not specified
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Thanks for the reply flexi, I feel I could go, but nothing. Not urgent yet so wait and see. It's only bee 6 hrs.
User
Hi Damperman
From my own experience (see my profile) water retention isn't good. Please do something to get it checked asap as Flexi has said.
Arthur
User
Hi AWR1946, just read your profile. It's opens your mind to the problems that can occur. The nurse at hospital said if I didn't go within 12hrs go to A&E. Another 5.5hrs. Hopefully something will happen. Keeping my fingers crossed.
User
I had no problems after my rectal biopsy, but went into retention after my template biopsy and had to go to A & E and was kept in. I'd go sharpish if I were you, judging from my own experience.
Stay Calm And Carry On. |
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sixfoottwo I'm waiting till 10pm, hopfully things will happen soon I feeling a little pressure now.
User
10pm may be too long to wait, consider going to A&E or your local drop in centre as soon as it is obvious that you have urine in your bladder that you can't expel. If you leave it too long, you could damage your kidneys. You may also not be aware that once You go into urine retention, it becomes extremely painful astonishingly quickly and a 2-3 hour wait in a busy casualty department could be excruciating.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Eureka, it's just happened.
Thank goodness for that, Friday night in A&E doesn't bear thinking about.
Thanks for all your advice, I'll let you know when the results are in.
Colin
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Gosh...other half wasn't allowed to leave hospital until he had opened his bladder. I hope you get on ok with your results, the waiting is so hard.
User
User
Thanks for the replies, it's good to share a problem. I feel back to normal today, I have to say that the biopsy wasn't as bad as I had thought, (don't want another yet though).
So now the wait for the results, it has been a worry since January. I feel sorry for my poor wife. She does worry a lot. I keep telling her we can't change what happens in life.
2 to 3 more weeks and we should know.
Thanks again, Colin.
User
The waiting for the biopsy results is so hard, I feel my life is just on hold. I know I'm in the long line of many, but I just need to know one way or the other. Any others feel the same.
User
Hi Damperman
I remember waiting for my results and it was an anxious time. I had my biopsy 10 days before the Christmas and didn't get the results until mid January. It turned out the CNS was on 2 weeks holiday!! I was too naive at the time to chase it up thinking the delay was due to Christmas.
Hope you hear sooner rather than later
Arthur
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Thanks, I will probably ring the nurse next week.
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Haven't rang about results, thought it might upset the hospital staff. The waiting is driving me nuts. That will be 2 weeks tomorrow I had the biopsy. Is no news good news???
User
I was given an appointment to receive my results about one month post biopsy. Ring for an appointment if not for your results.
Paul
Stay Calm And Carry On. |
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I would go along the same route as 6F2 ( Paul ) suggested........ring the hospital to chase up your appointment if it's not already been arranged.
It's highly unlikely they will give you any results ( good or bad ) over the telephone...
Best Wishes
Luther
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Unfortunately no, not in these cases. Hospitals have a routine for giving out results and a process which they follow, I have never heard of them changing. My result was 10 days after biopsy, I had to go to the hospital and I had to be accompanied.
It is understandable that you are anxious, we all were at that stage of our involvement with PCa. You will not upset anyone by chasing them up, they are used to that. Nothing to lose by giving them a call. And remember whatever the result, there is so much that can be done for you so don't panic.
Have a good weekend
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
My last biopsy results took 3 days as they were so aggressive , and I was in for an apt in 5 days . My original appt was for 14 days -- I think that is standard . We have 2 specialist prostate nurses at Southampton and they are just amazing and will chase things up -- but they never give details over the phone !!
You honestly aren't hassling people by chasing it up . They are lovely people , and over-worked , but its their job to help -- especially in this area where fear and worry are prevalent
Chris
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I was phoned by the specialist nurse when I was at work. She confirmed I had PCa but I was kind of expecting it anyway.
Hope you get your results soon
Bri
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Thanks for replying, I've been thinking all day about the outcome.
I met up today with a chap who told me he has just been given the all clear after 5 years, only returning for check ups.
He suggested ringing the Consultants Secretary after the weekend to enquire about when I can expect an appointment. So I'll do that.
You are all amazing people on this forum, with good advise for us newcomers.
I wish you all a good weekend.
User
Hi Colin
I am a bit late in saying this but welcome to the forum!
When I was new to the forum a member posted a comment along the lines that "with PCa or potential PCa (or any cancer for that matter) sometimes we have to take control of our own destiny". I have never forgotten that advice and there have been some occasions when I have had to apply that principle.
I wish you well in getting your results after the bank holiday. More importantly I hope the results are what you want to hear.
Sending best wishes.
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Thanks rivertweed, I will keep that advise in mind.
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Just to say that I rank the nurse up today to see if my results were ready, she said that a appointment has been made for Wednesday next week to see the consultant, and I will be contacted later in the week to arrange.
I asked if she could say anything to me about the results, she told me that they wouldn't do that as they don't know what your reaction would be either way.
Soooooo still waiting
Colin
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Stay patient, do lots to take your mind off the waiting. Not easy, but too much thinking time won't help.
Paul
Stay Calm And Carry On. |
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Just to say it's now Saturday still no notification from the hospital about an appointment for Wednesday. I went to see my local Dr yesterday and asked if he had any results, but nothing in. He checked further and found a report on the biopsy, he told that I do have prostate cancer with a Gleason of 3+3 (6).
Colin
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IT is frustrating when the hospital doesn't follow through. Ring them on Monday to make sure an appointment has actually been made and be FIRM that you were told to come on Wednesday for results
Good luck on Wednesday. Don't forget the notebook and pen and have somebody with you, two pairs of ears being better than one. If the wife is a worrier then perhaps a friend could go with you?
So........ the GP has given you the report on the biopsy and he has said that you do have cancer. 6+6 isn't that bad. There have been others on here up in the hundreds and even thousands, who still lead normal lives albeit under treatment. My husband's was 3+4 at the start.
There are many treatment routes to follow these days so please don't despair. Try and reassure your wife. This is the hardest part, the waiting around for somebody - anybody - to tell you what's what.
Once you know where you stand it will get easier.
Keep posting and asking questions. There is much experience on here of the various treatments on offer and somebody is bound to know the answer.
All the best to you and Mrs damperman
Sandra
We can't control the winds - but we can adjust our sails |
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Thanks Sandra, it is hard. This has been the worst 5 months of our lives, and I'm sure things will improve. When the full results are known I will post here.
Thanks again for your support, Colin
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Colin
Yes, it's bad news, but you will have a range of treatments available to you almost certainly putting you in the cure camp.
In preparattion for your appointment, read the support packs on the site, arm yourself with info, write down your questions and take someone with you to make notes and maybe ask the questions you may not have thougt of.
If you have any questions beforehand, you will get a response on here.
Good luck in whatever treatment path you opt for.
Paul
Stay Calm And Carry On. |
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Paul
I'm not sure I know what the questions are to ask, I trawl this site and others for answers. I think it's best to wait for the official diagnosis and go from there.
Colin
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Colin
You will be given other scores with numbers relating to any spread from the prostate. Hopefully, these will confirm a cure prognosis, but whatever they will give you a good understanding of where you stand treatment and cure wise.
The N score measures any spread to lymph nodes and the M score any further spread. I hope this doesn't alarm you but gives you an idea what to expect. The T score shows the spread in the prostate.
There is more info here.
http://prostatecanceruk.org/prostate-information/getting-diagnosed/staging
Stay Calm And Carry On. |
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Paul
Thanks for that, I'll check the link.
I see you were 1 core from 12 that showed cancer. I'm sure my Dr said I was 3 from 5 one side and 5 from 6!the other. Not really sure what that outcome is.
User
Colin
I also had a template biopsy which showed 7/26 cores as cancerous. However, my Gleason score was upgraded from 6 to 3+4 following this.
I would also read about the treatment options, radical prostatectomy, braccytherapy and radio therapy, plus active surveillance, which are most likely the choices you will be given. These are on the same section of the website as the link above.
Paul
Link here
Edited by member 30 May 2015 at 23:14
| Reason: Not specified
Stay Calm And Carry On. |
User
Hello Colin,
The wait for official news is appalling isn't it? Timescales are an awful thing- you don't know what to expect. So here's our timescale so far.
My husband also found his PCa accidentally at a well man check. he had his blood test on 26th September, the gp called on 29th september. He went for his urgency referral on 7th October, at which they performed the biopsy. Then an agonising wait to 22nd October where cancer was confirmed. He had a Gleason 9, 3% in the left and 20% in the right.
We had to wait for bone scan and Mri scan - bone scan 4th November, Mri 6th November.
Initial consultant appointment was 22nd November. He had a prostatectomy on December 1st.
From what I have read on this forum, I think this is pretty quick, but the surgeon seemed keen to get a move on because of the very high gleason score. It seems he was correct, as it had reached the margins. At a gleason 6, you may find there is less urgency.
Good luck for Wednesday.
Louise
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Hello Louise
Hope both you and your hubby's getting on ok.
The hospital rang today to say an appointment has now been made for Thursday at 09:29am so I'm pleased about that. My first PSA check was carried out mid January, so you can imagine the wait is really hard, not just for me but also my wife.
I'll have the full info to post on Thursday.
Colin
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Good luck with that- I shall be thinking of you
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Good luck on Thursday Colin
Hope it goes well for you
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Thanks for your support, it seems Thursday will never be here.
Colin
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Well I've been to see the consultant today, and the results are as I had posted before. He told me that I do have a Gleason score of 3+3 (6), and that I have a low grade cancer. He didn't give me any further grading.
He did say that I have 4 choices, the Active surveillance, Bachatheropy, External beam therapy or surgery to remove the prostate. So now I have a load of reading to do from the hospital and of course the Toolkit from here.
I'm not sure I can go through The Active surveillance, after having 5 months of it already, and he has booked me in to see a oncologist.
I shall be reading through others stories on here of the treatment they opted for to help me choose.
I suppose I should now start a thread in the diagnosed section.
Cheers Colin
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Colin with low grade PCa and a Gleason of 6 all contained you have every option open to you. In your case there is probably no huge rush to make what is one of the biggest decisions of your life.
A lot will depend on how you feel about living with the cancer, if you are happy to let the lion sleep within, albeit being treated by RT or Brachy therapy that is one thing, if you really don't feel happy sharing your body with a sleeping lion then you can have it taken away.
There are lots of things to consider like the side effects of all the options and what things are most important to you.
AS has only one real side effect and you have just touched on it, but many men chose that option knowing that they will be checked regularly so that action can be taken as soon as it becomes necessary. They usually have plan b ready to launch if it does become necessary.
True AS involves Regular PSA testing DRE and biopsy so make sure that regime is well explained for you.
Generally speaking Urologists push surgery and Oncologists Brachy or RT.
One thing to consider is the order of potential treatments and that some may become precluded eg surgery is not commonly allowed after RT etc.
Good idea to read up on others experiences but be sure they are in the same diagnosis as yourself.
Read up from the toolkit and now you know exactly what you are dealing with you should be safe to use the internet to research too.
Feel free to ask as many questions as you like on here too there is always someone ready with advice or suggestions.
Best wishes
Xx
Mo
User
Hi Colin,
Im sorry to hear your result was positive , but as Mo said you have some time to make your mind up. I was kind of hesitantly offered AS after two Gleason 3+3 3+4 . But the PSA just rose and rose . And obviously you are left with the "worry".
I just genuinely hope you can pick a path that suits you , and you obviously have all the support you can need on this site .
Chris
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Hi Colin,
If you have been on AS for some time then you will presumably have a series of PSA results, what are they and when did they start? The increase in PSA levels, assuming that you did not engage in activity within 48 hours of the sample being taken that could artificially increase the PSA, is an indicator as to how aggressive your cancer is likely to be. That can only be ascertained for certain in a petri dish on pathology as far as I am aware, but in the absence of that examination the PSA test is all you can go on.
Baer in mind that your Gleason score is a "Guesstimate" at this stage. It can go up or down as a result of pathology exam. Mine went up from 6 to 7. As far as I am aware most scores do tend too be lifted after pathology. Really happy to be corrected on that if I am wrong?
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
CB, Colin hasn't been on AS - he has only officially been diagnosed today! What he meant was how long it has taken to get diagnosed.
I don't think it is true that most Gleasons are uplifted post surgery. Some stay the same, some rise and occasionally the Gleason is lower than expected. It is called over-treatment and is part of the outcry in the States
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"I'm not sure I can go through The Active surveillance, after having 5 months of it already, and he has booked me in to see a oncologist."
Oh, sorry if I got that wrong, copied the quote and pasted it above, dereggub if I can read it any other way?
Re the upstaging of the Gleason on pathology, I have no stats to prove or disprove my view. Happy, very happy, to be proved wrong.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Colin
The important thing is you have time to read all the available literature. The choice of treatment can depend as much on your personality and your attitude. Dave and I both opted for surgery, but there are plenty of others with excellent outcomes from other options.
Good luck in making your choice.
Paul
Stay Calm And Carry On. |