PROSTATE CANCER – ANYONE BEEN THERE & DONE THAT?
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30 posts since
26 Aug 2014
Hi, I have just been told by my Consultant that I have Prostate Cancer.
I am aged 58 years old and married and live a relatively fit & healthy lifestyle and have been healthy for all of my life (except having my appendix removed years ago!) so it has come as a bit of a shock to the system.
I had 3 x sets of biopsies and cancer was found in the 3rd set with a Gleason Score of 4:4, a total of 8, which is quite high.
I have just has an MRI & Bone Scan and am awaiting the results before going back to see my Consultant where we will discuss the severity of the cancer, whether it has spread outside my Prostate, my overall prognosis and the way ahead with whatever treatment(s) may be suitable.
I am staying upbeat and optimistic and I really just want to know what it is that I have and how I can try to make it better.
There is a LOT of stuff out there to read on Prostate Cancer and some of it is very scarey indeed and I appreciate that I need to know the full picture before I start to worry about “what and if”, so I don’t worry – yet!
I wondered if there are any gents out there who have already been through a similar experience and if so, if you have any advice or pearls of wisdom to pass onto me?
Many thanks.
30 posts since
26 Aug 2014
I have just realised that I asked any “gents” affected by Prostate Cancer for their thoughts.
I didn’t intend to be sexist or exclude ladies from having their say too, as I realise that the journey into the unknown that I am about to take will also affect my wife as well as family members – male & female alike.
I suppose I just feel the need to ask if anyone who has been involved in this type of cancer has any supportive comments to inform or inspire me?
Cheers.
9539 posts since
25 May 2012
Hi,
I am a 70 year old who 5 years ago was diagnosed with prostate cancer. Like you it was a bolt out of the blue and I had none of the usual symptoms. My psa was 70 and the gleason of 3+3= 6. Luckily the cancer was still contained within the prostate. I was put on hormone therapy (zoladex) and when I started my 37 radiotherapy treatments it had come down to 3.18. After the r/t had finished a few weeks after my psa dropped even lower to 0.01, the lowest they can measure. Which was a tremendous result. I still have a few side effects as a main result of the hormone treatment but these are a small price to pay for something that has almost definitely saved my life.
I received great service from start to finish and cant fault the N.H.S. If there are any questions you have, I will try me best to answer them.
Take care, Brian.
30 posts since
26 Aug 2014
Hi Brian,
Thanks for taking the trouble to comment and let me know your personal experiences.
Was surgery to remove the prostate not an option for you (maybe for health reasons?), or did you decide against surgery yourself?
Wal
9539 posts since
25 May 2012
Hi,
As my psa was so high, I was told surgery was not an option, but it all turned out very well.
Take care, Brian.
30 posts since
26 Aug 2014
Hi again Brian,
I see that you chatted to GingerS earlier this year on this website and she and her husband were trying to decide which option to take for his Prostate Cancer.
Did you ever hear what happened?
Wal
9539 posts since
25 May 2012
Hi,
No I never heard anymore as far as I can recall.
Regards, Brian
15 posts since
8 Apr 2014
Hi prostate@58, welcome to the forum, I joined when we discovered my father in law had aggressive prostate cancer, unfortunately for him it had spread to the bone & lymph nodes. He has been recieving hormone therapy since April’14 his PSA was always low hence this is that why the GP never referred him for a biospy, it was 8, then when the hormone injections started it fell to 5.5 but rise again 6 weeks ago to 7.9. Thankfully having got his PSA results yesterday they’d came down to 3.75. The worrying never ends, this site is a great comfort to us as we can come on and hear other people experiences. We wish you well and stay in touch.
Lisa
30 posts since
26 Aug 2014
Hi Lisa,
Thanks for your story and for your words of comfort.
I am pleased to hear that your father-in-law’s PSA level has dropped down and I hope it remains so – forever.
I have just heard that the medical team are meeting at 4 pm next Monday, 1st Sep 14, to discuss all of my results including my PSA level of 7.4, my Gleason result of 4:4 (total of 8) the MRI & Bone Scan and they can then formulate a plan for the way ahead and they will then arrange a meeting with me to discuss things further.
The medical team consists of the Radiologist, the Clinical Oncologist and the Surgeon, so that will presumably cover all options that will be available – dependant on how the nasty little critter turns out to be.
So I am off for a long weekend in the caravan to try and relax and clear my mind and I will then come back with a new sense of purpose and go to speak to the medical team and get the next stage of the process started.
I will post updates on here as and when I know more.
Wal
458 posts since
30 Nov 2010
Hi Wal .I had prostate cancer 7 years ago after two opeations and the emunotherapy twice what had started as a group of tumours on the wall of the bladder they took me back into theatre
for a third time and removed the protate and all that was with it including the bladder .That was in wythenshawe the team that look after me are the best, fantastic I go for a wash out on Monday next week as a day job but it is about 2 hours
on a bed while the nurse works on me .I have a pouch and get on with it my Dog takes me for good walks I eat well ,just had my 81st birthday .
regards george .
40 posts since
31 Jan 2013
Hi
Where do you start???
I am 59, diagnosed at 57. One of the biggest puzzles I faced was the signifiance of Gleason versus PSA In my case I had PSA of 35 (less than yours) and Gleason of 9 ( higher than yours). The question I asked was “which is worse?” It all seems a msytery and I can really only suggest that you talk honestly to your Oncologist about this, and keep talking to him/her and the support team. It seems to be such an individual matter and please do not just “rely” upon figures and scores. There are so many variables, and the danger is that you spend too much time reading the info and not enough time speaking with the lovely people who are there to support you.
Whatever, though, PLEASE PLEASE do not lose your upbeat and positive attitude. This will help SO much in the time to come. Whatever the treatment regime, whether it be hormone, radiothereapy, Chemo or whatever, just keep smiling. I am on chemo and my view is that all the various side effects mean that it is working, so keep positive.
I wish you every best wish and luck for the future
Overwhelmed (John)
3181 posts since
7 Oct 2013
Hi Wal,
I have a different type of cancer – but here are some pearls of wisdom anyway!
1) Statistics and advice on the web.
These should be treated with caution as much research is years out of date due to advances in treatment over recent years. Anything published before 2012 is probably based on data collated well before then (say between 2000 and 2010), so conclusions were reached about the effectiveness of treatments almost 10 years ago..
2) Survival rates – times.
See 1) plus these are usually “mean” figures of the population of people with a certain condition. These rarely take into account other factors such as age, fitness or other pre-existing conditions all of which can influence clinical outcomes.
e.g. 58 is relatively young and the fitter you are the more likely your body will be able to tolerate various treatments and recover from them.
3) Positive but realistic attitude
Essential for your sanity and for the sanity of those around you!
Forget the psycho-babble, there is evidence that being miserable contributes to a lowering of the human immune system and being positive raises it.
.
Hope this helps 
Dave
1 posts since
3 Sep 2014
Hi,
I told my GP about slow peeing in Feb. he did a quick check and said he thought he could feel something that needed checking out. I was totally unconcerned so waited 3 weeks for a blood test and another 3 weeks for the result. He said I had a psa of 14.5 and needed to be referred for further tests. The appointment came back for the end of July. Good-o,I thought, it can’t be serious if they don’t want to see me for 3 months.
Anyway, as time went on and I started to think a bit about it, I mentioned it to a friend who said “It’s too serious to wait that long, get a private app”. I got one in 2 days and quite by chance it was with the doctor I was booked in to see on the NHS. He was furious that my app was 3 months, he said I should have been seen within 2weeks! He also said I was to spend no more money privately and he will arrange tests quickly through the NHS. I had a biopsy (4+4) and a MRI. At the results app I was devastated to learn I had prostate cancer. I had a further test for bone cancer which luckily was negative.
I had a radical prostatectomy last Saturday and came home on Monday. The surgeon said it went very well an I could have the catheter out on Friday. Unfortunately, they can’t do it ’till Tuesday. The catheter is something else! If you want to know about it, ask.
To conclude, I’ ve been through this cancer thing relatively easily. I have had some very dark moments but I have always been positive. Luck has a lot to do with the result but a positive attitude will pull you through.
Hope this helps someone.
Jim
3181 posts since
7 Oct 2013
Jim,
If you hadn’t already, it would be worth talking to your GP about the delay the practice caused in your diagnosis and treatment. Until last week I worked in the NHS and I know there is a quandary that GPs are often in. I had a similar issue with my Mum’s treatment and, initially, with my own.
As I understand it, if they put “query cancer?” on the request it is put in as urgent and the two week rule/guidelines apply. If they don’t, the 18 week guidelines apply. Their quandary is that they get censured if they put too many “query cancer?” requests in, as this clogs up the system and delays “genuine” cancer patients, BUT they also get censured if a case goes through which turns out to be cancer – in which case the two week rule is applied retrospectively!
I discussed my case with my GP and, as a result she told me a month later me that she had subsequently treated a case with similar symptoms as “query cancer” which she said ordinarily would have gone in as routine. He had cancer too but it was caught at an earlier stage than mine.
Glad to hear that you’ve had a positive outcome
Stay lucky!
Dave
30 posts since
26 Aug 2014
Hi again,
Thanks gentlemen for sharing your experiences with me.
Overwhelmed (John), your circumstances and age etc sound very sililar to mine, so you know how I am feeling.
Countryboy – glad to hear it all went well for you and you have had the surgery and are recovering.
The latest events are:
The specialist Urology nurse e-mailed me with the results of my MRI & Bone Scan and said that they both showed no spread of cancer – phew – good news indeed! She also said that the cancer within the Prostate, although low volume, is right up against the wall of the prostate and this looks as if it is causing it to bulge, but due to some bleeding (from the 3rd set of biopsies!) it is not possible to assess this fully. Mmmmmmm a bit worrying.
After asking for further information, I have now been told that the T Stage is “early” T3a, no Nodes & no Metastasis, but due to the bulking of the Prostate they cannot say that it is definitely localised although there is no evidence of spread beyond the Prostate. Also, the Multidiscliplinary Team who discussed my case upgraded my Gleason Score from 4:4 (8) to 5:4 (9) which now makes it “high risk”. Even more worrying!
These latest revelations are scarey, so I rang the nurse and she assured me that although it didn’t read well, it is still good news that it hasn’t spread.
I received 2 x appointment letters today; one to see the Urology Consultant next Thursday, 11th Sep 14 and one to see the Oncology Consultant the week after, Thursday 18th Sep 14.
I (and my wife) have already decided that I will opt for surgery, so hopefully this can be finalised and arranged next week – fingers crossed – and I won’t even need to see the Oncology Consultant about possible Radiotherapy.
The waiting for the results and then the subsequent appointments is the worst part and I just want to get on and get it sorted out.
To be continued ………
Wal
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