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Living with prostatecancer

User
Posted 18 Nov 2016 at 15:43

I am telling my story to let men out there who have just been diagnosed with prostate cancer that my experiences will give hope that your world has not come to and end and life can be normal.

I was diagnosed in December 2013 and was 57 at that time. I had no symptoms at all. I was having a well man blood test for cholesterol, liver function etc a general MOT. As football fan I was aware of the games support of prostate cancer awareness so I thought add this onto the test and I am fit and well I can tick it off the ok list. I received a call from my doctor to see her she said every thing is ok, except my PSA was 4.8. She suggested I see a urologist. I went to him and he explained that my PSA should be about 3 for my age. I had a DRE and he found nothing to be alarmed at, no lumps, not enlarged and felt right. But the only way to be certain was to have a biopsy. I agreed and two weeks later I went to see him. He broke the news, I was stunned but calm. He explained that I had a T1 Gleeson 6. A very small localised tumour. He gave me three options. Active surveillance, surgery, Radiotherapy. He guided me toward surveillance as I had no symptoms and the tumour was small and possible side effects were not pleasant. I saw the surgeon and oncologist. I chose surveillance. I read everything I could at first it was scary, reading things like "early detection gives 5 year life expectancy, with treatment 10 years". I'm not 60 yet oh no!. With reading lots on the subject you find that the life expectancy thing is if the tumour has spread out of the prostate or has sneaked up on you making you ill and is not going to kill you as a done deal and that lots can be done with early detection. Many men die with it not because of it. Over the next two years I had PSA tests every three to six months they varied from down to 3 and upto 5.2 the highest. These are not large numbers when you read about men with PSA in double figures. Approaching two years I was asked to take a MRI scan. This showed the tumour was still contained in the prostate. At two years another biopsy was recommended. This time I was told T2 Gleeson 7. It had grown. I still did not have any symptoms. The urologist thought treatment was required but I could stay on surveillance with more check ups. I saw the surgeon and oncologist again. I had more questions this time and with thorough research on the pros and cons of both treatments and side effects I decided on Radiotherapy. With the tumour being small I did not require hormone treatment prior to radiotherapy this was good thing as it can have side effects of its own. I had the treatment at the Christie in Manchester. At the end of the third of four weeks I did get some mild side effects. 1)I had bowl problems, became a bit loose. (Good job I am still light on my feet) I was given Fybogel and a low fibre diet plan after a month I was back to normal. 2)My wee flow reduced nothing serious but I was longer at the toilet. 3) I had slight discomfort when having a wee. 4) was more tired than normal but not fatigued. These lasted no more than six weeks and returned to normal and did not effect my lifestyle at all. I did not become incontinent which is side effect that is common in both treatments. From a personal point of view I did not suffer from erectile dysfunction. At my six month check up my PSA has dropped to 2. The urologist was happy it is going the right way and I am not suffering from side effects. I will have check ups every six months to monitor me and if the PSA stabilises over a period I may be able to claim success.

My story is that I was fortunate in my treatment where a lot of men suffer. I don't say I was lucky, because I have still got cancer and till the Doctors are happy with my blood tests and state of health it is still hanging over me. Except for very small problems after the biopsy and treatment (which were no more than say having a bad cold) my life carried on as normal. I cycled before during and after diagnosis and radiotherapy, still go to football, out for drinks, meals, look after grandchildren. My point is that I have stated I was fortunate in how my body reacted. A lot of men will have the opposite tale, but in my case early detection and treatment appears to be working and hasn't had any effect on my lifestyle. Don't be scared of what might happen it may not. If I had not had the test and treatment in five year time my story might have been very different.

User
Posted 18 Apr 2017 at 13:41

This shows the importance of early diagnosis and treatment at an appropriate time. Sadly, many men do not get diagnosed before PCa has advanced to a stage where it is more difficult to treat with good results. This may be for a number of reasons, which may include no PCa symptoms, feeling that minor symptoms are insignificant, just attributable to the ageing process, being unaware of the prevalence of PCa or the natural reluctance of men to visit their GP's. It's a question of changing men's attitudes and of making them aware. The lead of the football fraternity to help realize this is clearly having some effect and there are of course other initiatives.

Hope timely treatment in your case pays off long term.

Barry
User
Posted 18 Nov 2016 at 15:43

I am telling my story to let men out there who have just been diagnosed with prostate cancer that my experiences will give hope that your world has not come to and end and life can be normal.

I was diagnosed in December 2013 and was 57 at that time. I had no symptoms at all. I was having a well man blood test for cholesterol, liver function etc a general MOT. As football fan I was aware of the games support of prostate cancer awareness so I thought add this onto the test and I am fit and well I can tick it off the ok list. I received a call from my doctor to see her she said every thing is ok, except my PSA was 4.8. She suggested I see a urologist. I went to him and he explained that my PSA should be about 3 for my age. I had a DRE and he found nothing to be alarmed at, no lumps, not enlarged and felt right. But the only way to be certain was to have a biopsy. I agreed and two weeks later I went to see him. He broke the news, I was stunned but calm. He explained that I had a T1 Gleeson 6. A very small localised tumour. He gave me three options. Active surveillance, surgery, Radiotherapy. He guided me toward surveillance as I had no symptoms and the tumour was small and possible side effects were not pleasant. I saw the surgeon and oncologist. I chose surveillance. I read everything I could at first it was scary, reading things like "early detection gives 5 year life expectancy, with treatment 10 years". I'm not 60 yet oh no!. With reading lots on the subject you find that the life expectancy thing is if the tumour has spread out of the prostate or has sneaked up on you making you ill and is not going to kill you as a done deal and that lots can be done with early detection. Many men die with it not because of it. Over the next two years I had PSA tests every three to six months they varied from down to 3 and upto 5.2 the highest. These are not large numbers when you read about men with PSA in double figures. Approaching two years I was asked to take a MRI scan. This showed the tumour was still contained in the prostate. At two years another biopsy was recommended. This time I was told T2 Gleeson 7. It had grown. I still did not have any symptoms. The urologist thought treatment was required but I could stay on surveillance with more check ups. I saw the surgeon and oncologist again. I had more questions this time and with thorough research on the pros and cons of both treatments and side effects I decided on Radiotherapy. With the tumour being small I did not require hormone treatment prior to radiotherapy this was good thing as it can have side effects of its own. I had the treatment at the Christie in Manchester. At the end of the third of four weeks I did get some mild side effects. 1)I had bowl problems, became a bit loose. (Good job I am still light on my feet) I was given Fybogel and a low fibre diet plan after a month I was back to normal. 2)My wee flow reduced nothing serious but I was longer at the toilet. 3) I had slight discomfort when having a wee. 4) was more tired than normal but not fatigued. These lasted no more than six weeks and returned to normal and did not effect my lifestyle at all. I did not become incontinent which is side effect that is common in both treatments. From a personal point of view I did not suffer from erectile dysfunction. At my six month check up my PSA has dropped to 2. The urologist was happy it is going the right way and I am not suffering from side effects. I will have check ups every six months to monitor me and if the PSA stabilises over a period I may be able to claim success.

My story is that I was fortunate in my treatment where a lot of men suffer. I don't say I was lucky, because I have still got cancer and till the Doctors are happy with my blood tests and state of health it is still hanging over me. Except for very small problems after the biopsy and treatment (which were no more than say having a bad cold) my life carried on as normal. I cycled before during and after diagnosis and radiotherapy, still go to football, out for drinks, meals, look after grandchildren. My point is that I have stated I was fortunate in how my body reacted. A lot of men will have the opposite tale, but in my case early detection and treatment appears to be working and hasn't had any effect on my lifestyle. Don't be scared of what might happen it may not. If I had not had the test and treatment in five year time my story might have been very different.

User
Posted 20 Nov 2016 at 18:41

Frank, I didn't go into great detail about my second biopsy and why I decided to have treatment. A DRE prior to biopsy found a lump/hard piece on the prostate, making it T2, the cores of the cancer had gone a bit deeper, my original biopsy found 20% of samples with cancer the second found over 50%. It was showing it had moved in the two years since diagnosis. The urologist told me that it was not just his opinion to have treatment but that of others also who analyse the samples. I thought long and hard. Should I stay on active surveillance it may not move again or wait a few more months. I decided on treatment. I didn't want to take a risk anymore. It had grown in two years in another two years who knows. Only you can decide what to do, its your body and future health. Frank find as much information as you can its out there and it all reads the same. No off the wall claims or statements to confuse. Good luck Frank for the future.

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User
Posted 18 Nov 2016 at 17:17

Great catch up Sidney and will be a big help to others in the same situation.

You might not think you were (are) particularly lucky but life's a funny old business isn't it.

What if you didn't go for the well man test, what if your GP hadn't been on the ball and didn't think 4.8 was high.

Maybe we make our own luck to some extent and you made yours by attending the well man.

Whatever the reason, well done and thanks for sharing

*****

We can't control the winds - but we can adjust our sails
User
Posted 18 Nov 2016 at 17:22

hi Sidney thanks for sharing your journey, what was the main reason you decided to treat because a lot of information suggests that in some cases no treatment is as good as treatment, I am in a similar position but with less options.

Best regards

Frank-n-furter

life's a b****- then you die!!!!!
User
Posted 20 Nov 2016 at 18:41

Frank, I didn't go into great detail about my second biopsy and why I decided to have treatment. A DRE prior to biopsy found a lump/hard piece on the prostate, making it T2, the cores of the cancer had gone a bit deeper, my original biopsy found 20% of samples with cancer the second found over 50%. It was showing it had moved in the two years since diagnosis. The urologist told me that it was not just his opinion to have treatment but that of others also who analyse the samples. I thought long and hard. Should I stay on active surveillance it may not move again or wait a few more months. I decided on treatment. I didn't want to take a risk anymore. It had grown in two years in another two years who knows. Only you can decide what to do, its your body and future health. Frank find as much information as you can its out there and it all reads the same. No off the wall claims or statements to confuse. Good luck Frank for the future.

User
Posted 21 Nov 2016 at 00:09

Hi Sydney

Just logged in and found your post most interesting and indeed very timely. 

I need to advise my 69 year old brother. Do please also see my profile.  I have just spoken with my brother over weekend, he is Gleason 7 (4 + 3).  PSA 3.57. 

1 single tumour identified 2 cm long Right Apex.  (He lives in Australia, by the way).  He will scan the full details later of his very recent first and only biopsy to me and I can then upload, as may help others.   Although in a nut shell, I need to advise him, yet not influence him (If you understand)  as he's 50/50 re. RP, ie Surgery or RT.  He is fully briefed and Oz medical system has provided him with all the info he needs.  No rush as he will make final decision Jan /Feb, he sees his GP early Dec.   

We (wife + I ) opted for RP, mainly because when all things considered, it came down to 1 major reason,  the fact post op, I should have at or near zero PSA and could have the option of RT  (and not vice versa).  

May I ask what was your reason for RT ?  Was it an easy decision ?     

Incidentally, I   was not offered Brachy, in fact didn't know much about it.   I think this is only offered to Gleason 6 (as a norm), although maybe Gleason 7 if unifocal (I had more than 1 tumour location), I've asked my brother to explore this (as seems as if success rates as good and side effects far less)  

Would it be possible to 'cut / paste' your actual post  into your profile, as you often find on the forum, posts soon get 'redundant' and your story is then less easy to find, it sums things up quite succinctly in many ways.  ie 'luck' or not, re. how PCa is first discovered, as reading many posts on here, I feel it's not  all about blokes afraid of visiting GP (that could actually be an urban myth);  it's the fact there are no symptoms, and more worrying, reading some posts, some GP's seemed to have glossed over symptoms and not actively given PSA test at all to fellows visiting their GP's with concerns.  Obviously I may see a skewed, distorted view.  My GP was neutral re. PSA tests , ie I had to push it in the early years.  I was effectively on self administered AS myself  (see my profile), and didn't realise it at the time as I asked for the tests when I remembered and looked at the changes.  I had a long discussion this year with my brother as his PSA was between 2 or 4 over the last 10 years (ie often lower than expected for the 'std' age). His PSA pre biospy was 3.57.   So unlike myself his PSA was not a good indicator at all. Thankfully he took everything on board and had a biospy the other month on his return to Oz   (he was in UK with us over the summer)

I will update my profile with my brothers results once I have them in detail.    He had a 3T Multiparametric MRI in Dec 2015 and PI-RADS rating of 4 with lesion size 1.5cm.  Tza    I never had this level of detail from my scan on NHS.   

Gordon 

Edited by member 21 Nov 2016 at 00:29  | Reason: Not specified

User
Posted 21 Nov 2016 at 06:23

I echo Gordon's suggestion Sidney regarding the cutting and pasting.

I do update John's profile, apart from (I hope) being helpful to somebody else) I use it as a sort of easy access diary. We can never accurately remember dates , latest PSAs or when they happened or the sequence of events so a quick look at the profile and we know where we are.

We can't control the winds - but we can adjust our sails
User
Posted 21 Nov 2016 at 20:14

Robgsr, Interesting post. I chose RT after speaking to the surgeon and oncologist at Christie Manchester and doing a lot of research. 

I was informed by the urologist and clarified by the Macmillan nurse that success rate for both surgery and RT was very similar.

The surgery is very intrusive its not like removing an ingrowing toenail or your tonsils. The surgeon (who I think was Jack the Rippers apprentice) graphically told me that I would probably loose lots of blood, risk of infection, will need catheter for a period of time and if incontinence continues surgery can fit a pump tap to control my urine ? (What). By removing the prostate and surrounding lymph nodes I would probably have erectile dysfunction. May damage my bowels, and who knows what he may find on the way in to the prostate and would not work for a least six months in my job as an engineer. All the above can happen but he was a bit blunt. 

The RT oncologist was great. Explained all the side effects, which can be the same as surgery. The procedure though is not as intrusive. I had made up my mind though prior to seeing both camps. I didn't want the surgery and what may happen on the operating table, even if the surgeon was polite and caring. The outcome could still be the same but I would be out of action for a long period of time. I had to accept that if the cancer returned I could not have surgery as the next option or further RT as that part of my body had had a lifetimes radiation but RT is possible after surgery, but If that had to be done the surgery had failed and the pain of the operation would have been a waste of time. It is a major decision to make. Some people want the cancer out no matter what. I decided to gamble on RT. Christie has the state of the art machines which can target the cancer more accurately and reduce good tissue damage. The less intrusive option.

You asked about the Brachytherapy option. I did not choose it for one reason. Grandchildren. The oncologist said the seeds put into the prostate though low level radioactive the advise is that other than a hello or goodbye cuddle to children or pregnant women its best to stay away. How can you do that to toddlers who expect you to fight and play all the time.

 

User
Posted 15 Apr 2017 at 12:53

I just thought I would update on my 12 months after Radiotherapy. Things are looking good. The three PSA results were 2.5, 6 months after treatment going down to 1.4 and 1.68, from highest 5.2 pre radio. The underlying trend is down. The Christie and urologist are very pleased the treatment is having a positive effect. I have no side effects that cause me trouble only at ejaculation, nothing there but it doesn't spoil anything and the doctors say this is normal. I have been warned though that it is only 12 months after treatment and side effects could appear up to a couple of years later. As long as my PSA reading remain a low constant number and only goes up or down slightly they are happy. It may take many tests and years before they could say its gone. I am happy at this stage as what could have happened could have been completely different. As I have said in previous posts there is hope and some men like myself do come through with minimal or no problems.

User
Posted 18 Apr 2017 at 13:41

This shows the importance of early diagnosis and treatment at an appropriate time. Sadly, many men do not get diagnosed before PCa has advanced to a stage where it is more difficult to treat with good results. This may be for a number of reasons, which may include no PCa symptoms, feeling that minor symptoms are insignificant, just attributable to the ageing process, being unaware of the prevalence of PCa or the natural reluctance of men to visit their GP's. It's a question of changing men's attitudes and of making them aware. The lead of the football fraternity to help realize this is clearly having some effect and there are of course other initiatives.

Hope timely treatment in your case pays off long term.

Barry
User
Posted 06 Dec 2017 at 17:41

An update: In November my PSA was 1.48. Others since Radiotherapy in April 2016 were 2.0, 1.68, 1.4. Positive results from the treatment. The urologist was pleased with the readings and along with me having recovered from side affects from the Radiotherapy he placed me on remote surveillance which means I dont have to go to the Hospital every six months, I can have my blood tests and the urologist will inform me by post. If there is a query I will be invited to see him. This goes both ways if I feel there is a problem I can ask to see him. This is a positive move as the treatment appears to have worked, but as the urologist says it will require many good readings before they are confident of total sucess. As I stated in earlier posts there is hope and success please be positive it may be ok.

 
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