PROSTATE CANCER - ANYONE BEEN THERE & DONE THAT?

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.

  • Hope it goes well and they reassure you. Await the outcome. 

  • Actually the fewer " Zaps" is good news because the number varies depending on how aggressive your particular cancer is . The lowest is 1 zap and the highest I have heard is 45 . You will get 1 zap technical name is " fraction " a day weekdays only . This will continue for 4 weeks . Pay great attention to ensuing your bowels are empty use a suppository in the morning and drink a few sips of water from early morning until 1 hour before your treatment time ideally up to 2 litres then empty your bladder then dring 3 cups of water within 15 minutes of doing this it is vitally important because on the first day they will put some very small tattoos over your pelvis area to uses as target  markers for all the subsequent treatments or the radiotherapy could stray too much over healthy tissue and you could end up with wearing nappies for the rest of your Life !!! Absolutely no coffee or tea beforehand . If you do not get this right you will be sent home and delay other patients . Typically each machine treats upward of 50 patients per day . NB Parking is always a problem so go early even 2 hours beforehand or get a lift . The 20 zaps add up to a total of radiation calculated to " kill" the cancer you should also be on hormone treatment but you do not mention this . Take a vitamin D tablet every day and drink loads of milk AVOID FATTY ACIDS LIKE THE PLAGUE ! You will have heard of the proton machine which is new but no better fro prostate cancer this delivers a higher dose because it is more tightly focussed . Lots of brisk walking . You will have a regular weekly meeting to see how you are responding . Your cancer is unique to you so beware of comparing notes . Feel free to contact me as I enjoy doing this Tonybear .Good luck .

  • The only reliable test is a biopsy which involves taking random tissue samples from your prostate . Everyone says this really hurts but I had no problems . You get pain relief beforehand . The samples are then looked at by a specialist you get the results about two weeks later . Now there are about 24 different types of prostate cancer all with different characteristics . The samples are graded in the most numerous and agrressive first then a second set . The can be graded 1-5 . For exaple my Gleason Score which is the result of the biopsy was 4+5 =9 . This means that the first number indicates the probablilty of aggression as being high , the second group being 5 is even higher . However 5 +5 = 10 being the highest . Typically about one third of these figures are too high but it is wise to err on the safe side . A total of say 3+3 =6 is still cancerous but so slow growing that you may be advised to just have an annual psa test . The higher results usually reveal another grading which is how large the cancer has grown and if it has grown outside the prostate . The lower Gleason scores usually the cancer is contained completely within the prostate these are stage T1 and T 2  usually . This stage is called localised cancer . If the cancer has grown into the seminal vesicals and a bit beyond then it is graded T3 a or b . Mine was T3b . This group are called regional advanced prostate cancer are are deemed " curable " Stage 4 can still be within the same parameters of T3 but could have spread into the lymph nodes but  the cancer has not metastasised   usually into the bones of the pelvis . Prostate cancer readily targets bone marrow and once in is difficult to remove . Stage 4 with spread is not deemed curable BUT it can be controlled for many years  and is not the death sentence it once was ! New treatments are coming out all the time . Ironically the more aggressive the cancer is graded the more likely to be destroyed by radiotherapy . It would be unwise to think that your cancer was much safer being a lower grade because the truth is every cancer is different . Also nearly every male will develope prostate cancer by age 80 . Black West Africans have twice the likelehood of devoping the disease because they inherit much higher testosterone levels . Also the  bigger you are can increase the probability . Strange though it may sound but you are better off with a GP with a long middle finger gives you a better indication of the outside perimeter of the cancer !!! Mine did . The prostate  is the size of a walnut and should feel squishy, smooth and soft . Suspicions must be raised if it feels hard and lumpy .These cancers typically take many years to grow . Please anyone ask any questions particulalry about the cancers returning which in reality does not happen there will always be some microscopic cancers going around the bllodstream but they can be controlled much easier because they are so small . Many people experience a " return of prostate  cancer " . Then the PSA become very useful because if it starts to slowly increase typically from less than 1 then further treatment may be required . Often nothing is done until it reaches 20 or so !

  • Bloody hell Tony bear, thanks for all this information I will keep a photo of what you have said on my phone so I can read again again to make sure it sinks in, I just hope this will be told by my nurse as well before hand as well otherwise they would I think not be doing there job properly, yes I’m on hormone tablets and have been taking for five months, really appreciate what you have mentioned and will keep the site fully informed of the outcome your John 

  • Tony bear you are one mint guy. I can’t begin to tell you how helpful and reassuring your input is. I can’t contribute much for anyone else’s benefit because my biopsy is not until next week but I will give an account of my progress and try to be as helpful as you are. I am still in the scared of the unknown stage just now but this chat line is brilliant. All I know is that with my PSA score of 102 my doctor is pretty sure I’ve a cancer although My DRE gave a healthy result. Unfortunately he says my prostate is not enlarged and I have no urinary infection to account for my PSA score. He did say that my longevity would not be impaired and that I would start my treatment on tablets. As this won’t start before June he said I would be able to go on holiday later that month. Given that I have obviously as yet no idea of the outcome, serious or otherwise of my biopsy I don’t know what he is basing this bit of optimism on. Without the PSA rating which makes me fear the worst I might be more optimistic myself! Anyway keep sharing guys it is helping me and I’m sure everyone on here more than anything.

  • Thanks for the support Billy and everyone else too. It is really reassuring to know people who have experienced what I am feeling can offer helpful advice and encouragement.

  • Really your psa reading is irrelevant initially but becomes very important after treatment .Your GP cannot possibly make these statements without a biopsy and a scan which will show up any cancer . To be fair to GPs they see only about 5 cancer cases a year . You will get the biopsy results two weeks after they are taken . I have no idea what tablets the GP is talking about since YOU will be give a choice of which pathway to take if indeed you have cancer .Cyclists typically have higher psa readings because of the effect of the saddle ! You will get much more accurate advice when you are in the hospital having the biopsy . Ask for the Gleason score after the results come through and what stage , if any , the cancer is . I can be much more helpful then and keep me informed because it is a journey . Have you lost any weight lately ? Very best regards Tony bear

  • The hormone tablets reduce the production of testosterone upon which prostate depends to grow . When you next have your psa taken the figures will have dropped dramatically . You probably have hot flushes and your nipples will get a bit sore . This usually drops after time . You do not mention how long the hormone treatment is for . One good tip that I have picked up is to have a fast any two days during a week . No food apart from water after 6pm and you can start eating about 1pm the follwing day . The body will scavenge all the debris in your bloodstream after about 6 hours and clean up pre-cancerous cells which will still be whizzing around your system , I think they are called microphages . Also your organs can concentrate on having a rest and a springclean thus bolstering your immune sytem . About half of patients can experience a gradual increase in psa levels after a couple of years prostate tends to regrow very slow . There are lots of things to counter this . Prostate cancer is never completely cleared from the system and does not return really having been missed early in treatment because these cells are too tiny to be seen . I think all cancer s behave tlike this BUT remember prostate cancer is usually very slow growing and may take many years to cause any problems . Keep in touch and very best wishes . PS The fast clears belly fat first which helps avoid diabetes type 2.

    NO COFFEE < ALCOHOL OR TEA DURING THE FAST BUT DRINK PLENTY OF WATER >

  • Hi Toby bear nice to see your helping out we could only tell people from our own experience. Mines a bit different psa 1581 gleason 8 stage 4 T3b non curable from prostate to the lymph nodes then pelvis, spine, ribs and 1 lung that was over three years ago psa now (March) 0.8 C still in bone & lymph nodes, psa has been lower Feb 2018 0.03 specialist waiting till gets to 20 before more cemo i think its a bit high but he's the expert, im on hormone inj's and hormone tabs,.

    Billy 

  • Thanks for that insight Tony. I used to be in the bike saddle a lot but probably too long ago to count. It’s regular walking football now to keep fit. No wait loss in years apart from the last few days when I couldn’t face eating. Trying to stay positive and that’s down to you and also other people on this site in a worse predicament than me whose positivity and willingness to encourage and support others is inspiring.