A couple of questions

Hi all,

My father died from prostate cancer a few years ago. I am still keeping up to date with prostate cancer related issues even though (thankfully) no one in my life is currently dealing with it.

Sorry for the long post, I have a couple of questions that I must not have thought of at the time when my dad was suffering from prostate cancer.

1. Is the reason prostate cancer is (in most cases) slow growing because the prostate is very small in comparison to other cancer sites like lung, stomach etc. so there are less cells to turn cancerous?

2. Why do they not remove the prostate AFTER the cancer has spread (if they have not before). I understand a cure may not be possible at this point, but surely a removal of the prostate would slow the cancer down seeing as the cancerous cells started and remain active mostly in the prostate?

3. Why do they not remove the prostate when first diagnosed in most cases and tell men they can "watch and wait to see if it spreads". Surely the minute the cancer spreads it is too late for a complete cure? I understand that many men live with prostate cancer without problems and die of something else but the death rate seems to be high enough to warrant removal of the prostate for a lot of men (especially with a family history like my father).

A little bit about my dad-diagnosed at age 65, gleason 6, contained to prostate, PSA relatively high-think it was around 5 or 6 or could've been as high as 12. (Fairly high for a first diagnosis though I know not high as far as PSA can get-his PSA was into the 400s in the last few months of his life!) He decided on Brachytherapy, never really considered removal of prostate despite his father dying of it in his mid-fifties. Is removal not really done now? I am so furious that he was not talked into getting his prostate removed I think he would still be alive now. Cancer came back 4 years after Brachytherapy and started on hormone therapy, died 4 years later age 73.

It makes me so mad when i read this blase attitude that you can just watch and wait prostate cancer, it must be the only malignant cancer that is not removed ASAP and can just be left (apparently). Sorry for the rant and long post, I feel a lot of anger towards doctors and myself and family for not talking him into having his prostate removed. He may still not have agreed as he really didn't want it out and we all had faith that this Brachytherapy treatment would work but it's the hindsight that gets me, it seems to obvious now knowing what we know that he should've just had surgery and we should've all taken it far more seriously.

Rachel

9 Replies

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  • Hi Removal varies with different reasons,Gleason score,position of prostrate,and age. I am 71 with a gleason score of 9the highest being 10,which means the cancer is aggressive and likely to spread.The reason I was diagnosed was I suffer from C.O.P.D.,I have never smoked in my life. ( Think possibly by chemicals worked with ) and only have 66% lung capacity.I have to go every 12 months for blood,lungs tests etc ( Luckily it has not worsened in the past 12 months ) During my visit to the doctors in March last year,I complained of having to go the toilet a lot day and night,he took a blood test to check,but took them till mid November to write to me,telling me I had a PSA level of25,my age should have been 0 to 5. Then it was all go backwards and forwards to hospital for scans and tests. I have 2 weeks left of 7.5 weeks of intensive Radiotherapy, even if it shrinks the consultant has refused to remove,and I will have to stay on the hormone implant for min of 2yrs. They are very reluctant to remove prostrate at over 70 years of age unless it is very low score. Mine is on both sides of the prostrate. They say it can be heriderary and my Grandson is worried Thanks

  • Keith, I believe your Grandson could go to the hospital for a blood test which would show if he has a likelihood of having prostate cancer. If you contact the MacMillan nurse at the hospital I am sure they could tell your Grandson more about this test. I hope this will be helpful.

    best wishes

  • Good morning Rachael,

    My husband's GP suggested the "wait and see" process but he decided to ignore the GP and go for the treatment. 37 radiotherapy treatments later and hormone therapy for the next couple of years and we are looking at a better outcome than could be expected. I can so understand your frustration and anger, unanswered questions can gnaw away at our inner being. (I have unanswered questions relating to the passing of my mother.) Have a look at this web site page and it may go someway to answer your question.

    cancer.org/cancer/news/expe...

    If you see one of the cancer awareness caravans (for want of a better description) that travel around the country or if you contact prostatecanceruk.org/ they may be able to help you.

    best wishes, I hope you find an answer.

  • One other thought, if you can find out how to contact Tackle Prostate Cancer directly from this page they may also be able to help.

    best wishes

  • Hi Rachel my father had prostate cancerand died in an era when there was very little publicity about the disease often by the time it was diagnosed it wathato late. I am 70 and I was diagnosed very quickly and it was caught in its early stages. I was given all the options and spoke to the various consultants re the best course of action. I decided to have it removed on discussing the pros and cons of each treatment. I am on a study with Surrey University which are doing research intothe disease. I go for 3month3 monthly checks at the hospital and presently my PSA is 0.04.

    I am so sorry to hear of your bad experience and consider myself extremely lucky I have dealt with all the right people. You have my heart felt sympathy that your father was not so lucky. You certainly need to ask questions on how this was dealt with. Initially I had 2 psa tests which my doctor responded by sending me to hospital for confirmation as they were both 7. The hospital confirmed this and offered me a new type of diagnosis involving a wider Biopsy MRI scan Bone Scan. This meant an overnight stay in hospital. 2 weeks later they confirmed the cancer which was still inside one side of the gland and just on the surface on the other side. The MRI scan confirmed the samples. I did have a little discomfort after this procedure but it died down after few weeks of cream massage and it's something being addressed by the team involved in the type diagnostic procedure.

    My operation was done by "Fred" the robot. It's about 4 hours. All this procedure was explained to me in detail. Including possible side effects losing your manhood incontinence wearing a caffeta for two weeks or longer and thst the cancer is only in remission not cured.

    My question is why is my experience not the same up and down the country where all the "I's" are well and truly dotted. Des

  • I am very sorry to hear, Rachel, about your father.

    When I was first diagnosed, I was determined to have it just cut out. But I was "told" no. It was just a little to advanced, basically they could not promise to get it all out, and disruption may have made it worse.

    Note also there are different levels of aggressiveness and mine was high. For non-aggressive small types they may just wait.

    So I had high dose Brachytherapy and now Zoladex for two years (see other comments). Whether it returns or not seems to be a matter of luck. Yes its waiting, combined with extreme fatigue from the drug.

    In no way do I want to say don't be angry, Rachel, but probably reserve it for the failure of GPs to diagnose early and the terrible waiting times to get scans etc, rather than the actual treatments.

    My case seems similar to Keith's. Good luck, Keith, with the radiotherapy. They do not really prepare you for the fatigue form the hormone treatment. But don't panic, its normal.

    Otto

  • Sorry long post again. Thank you for the replies and for the link butterfly, interesting reading. Keith yes it seems my father’s was hereditary since my grandfather died in only his mid-fifties from it. I will be strongly advising my brother’s to get check-ups and have their prostates out if they are ever diagnosed with it. Not going to let history repeat itself. I am shocked they took so long to do anything about your PSA.

    Des your PSA is very low now that is great news. Otto I'm sorry to hear your cancer is aggressive. Seems so contradictory, can't remove it if it's too aggressive, and wont remove it if it's not aggressive either! That's what i don't get about the treatment. Who knows, maybe my dads Brachytherapy actually made the cancer grow more, maybe he should've just left it. Only way I can ever know is to go back in time and go down a different path each time and see what the outcome would've been-maybe still the same.

    I was waiting until I had found my dad’s medical records before I replied but I cannot find them just now-we requested them from the hospital when we thought about changing docs. I will have another look. I want to check what my dad’s PSA was after Brachytherapy, I don’t think it was ever very low, certainly not what it should’ve been. After the cancer returned he was put on hormone therapy but there was a misunderstanding about it and he didn’t realise he was supposed to be on it long-term, so for months he wasn’t even having any treatment! This probably contributed to his cancer growing faster.

    My dad definitely could’ve had the prostate out, he was only 65 at the time of diagnosis and was gleeson 6 and hadn’t spread. From what I understand he was told there were a few things he could do, removal, radiation, watch and wait etc. He wanted to do something as his father had died of prostate cancer. But my dad definitely did not want the prostate out. I feel so sad for him as he was so happy with his Bachytherapy treatment he donated £500 to the hospital, he thought they had cured him. It came back only 4 years later. Cruel irony.

    It seems my fathers was especially aggressive, even though gleeson score was only 6. Apparently his oncologist told him he’d probably live until 80. WRONG, dead at 73. To live only 8 years since diagnosis seems quite a short time as far as prostate cancer goes, they have you believe you live for 20 years with that and die of something else. Yet it IS a big killer of men you only need to read the statistics.

    He also had brain metastases towards the end which is also supposed to be pretty rare. His macmillan nurse even rang up the useless hospital and told them about his symptoms as she was worried and she was told “prostate cancer doesn’t spread to the brain”. Optician sent him to A&E in the end when he noticed his symptoms on a routine eye check.

  • Hi Rachel, I have only just found this forum so apologies for late reply. Truly sorry to hear about the mistreatment of your dad. My father had a very similar experience which is a saga so I won't elaborate. You will be interested to hear, though, that he also had a secondary brain tumour, so you were given completely duff information about it being rare. I was pleased to read that you will tell your brothers to get checked out. This must also include any male children you may have because the propensity rates are much higher. I would also advise your male relatives to ask to be checked from age 40 - no later and absolutely insist on this, do not take 'no' for an answer if the mediacl profession says ' you are too young at 40'. I am a volunteer for a Helpline and hear loads of stories about how GPs and other refuse to give PSA tests at this age, I also understand that if ever a national screening programme was introduced, the starting point would be 50 - much too late in my humble opinion. Hope this is helpful.

  • Hi thank you for the comments and I am sorry about your father too. It is from my own research I have read that brain mets from prostate cancer are rare (but do happen). Whoever my dad's macmillan nurse spoke to at the hospital just said "it doesn't spread to the brain", and that's it-shocking when it's something so potentially serious (rare or not)! We should've made a complaint about that. My brothers are already 40/getting on for 40 so should be checked now. Very strong family history. I will make sure I never have children of my own (pretty much decided never to bring a kid into this world seeing my dad suffer- wouldn't wish life on my kids) so no worries there.

    I don't wish to scare men dealing with prostate cancer on here, my dad's seemed to be an especially aggressive case, and mistakes were made which led to him suffering more than need be. I would also say to men who are in pain, please please make it known that you are in pain, my dad should've spoken up more (and we should've spoken up more for him). Scream and shout if you have to (my dad was in horrific pain at times but never vocalized it except once I can remember), let the docs know that you need painkillers, or stronger painkillers, don't just put up with it.

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