Hello Peggy and welcome to the site.
We have men on here with PSA in the hundreds and thousands who are classed as incurable but they are still here many years after diagnosis.
I assume that the nurse knows from reports that your husband doesn't have the "pussycat" version if she is saying he will die of it. At least I think that's how I read your post.
IT is very scary when we are given the diagnosis but you will get support on here from many men and their partners who will tell you that, even if the cancer is aggressive, then it can be treated.
Your lives will never be the same obviously, because sometimes the treatments can cause fatigue etc but if the nurse is saying he will be with you for many years yet then take heart from that.
What was his Gleason score, just so that people can advise you better.
Keep strong, for your husband's sake, as well as your own. If he is your world then you will want to do everything you can to support him.
Hang in there for more replies and in the meantime, try and take a big breath and relax a little.
Best Wishes
Sandra
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Ok guys just had letter from the Dr hubby saw who told him he had PC I'm shaking have tried to phone the nurse at hospital but no anwser please help . it says some of which we knew PSA 6.4. DRE firm volume 32 cm IPSS 18/3 bilateral Gleason 9 and that she did urgent staging investigations .Ok spoke to nurse who explained things panic over but leaving score on door for u guys to see
Edited by member 06 Jul 2017 at 14:18
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hi Peggy,
my husband was diagnosed in January, he has just had his prostate removed and is recovering well, its a horrible emotional rollercoaster to be on but you need to stay strong for each other and take each day at a time. my husband is 62 and works full time.
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Hi Debz64
Thank you for reply hubby can't have operation as they say because of triple bypass 7 years ago . I just wonder how they can tell you the treatment you will have before scans etc . I've read other posts on here from people who say PC not a untreatable kind it was just nurse saying type hubby has you can die from but never thought to ask if on one hand hubby be around for years to saying his PC can make it the opposite .So many things whirling round in my head .
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Hello Peggy and welcome to the site.
We have men on here with PSA in the hundreds and thousands who are classed as incurable but they are still here many years after diagnosis.
I assume that the nurse knows from reports that your husband doesn't have the "pussycat" version if she is saying he will die of it. At least I think that's how I read your post.
IT is very scary when we are given the diagnosis but you will get support on here from many men and their partners who will tell you that, even if the cancer is aggressive, then it can be treated.
Your lives will never be the same obviously, because sometimes the treatments can cause fatigue etc but if the nurse is saying he will be with you for many years yet then take heart from that.
What was his Gleason score, just so that people can advise you better.
Keep strong, for your husband's sake, as well as your own. If he is your world then you will want to do everything you can to support him.
Hang in there for more replies and in the meantime, try and take a big breath and relax a little.
Best Wishes
Sandra
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We can't control the winds - but we can adjust our sails |
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Hi Sandra
Thank you x don't know anything about Gleeson score nothing been said 6.4 was his PSA ,level he only went GP as he was tired and legs ached bug they more stiff as he sits at desk all day and drives hour each way to and from work ,never still at weekend so not surprised .GP said he should have had blood test in December for review on meds ! So said she found one and as he was up in night couple times some nights do PSA test in bloods .week later he got letter to say make routine appointment which tried to do and it was 2 weeks later rightly or wrongly I googled PSA levels as receptionist had told results I was so mad contacted another GP at surgery who rang husband and said he wasn't to concerned! But glad he did what he did and fast tracked hubby .As I said both DRE suggested benign and size is 32cm and consultant say should be 32 . Nurse say but if red herring the PSA as the Tumour not secreting . That's all we know till 11th July ax having MRI Sunday and bone scan Tuesday . They were going to send out appointments for scans but I said we away soon . I said to nurse I want to complain about the GP as I dread to think what she would have done at routine appointment maybe nothing but nurse say wouldn't have made much difference between seeing consultant now or possibly 3 months . My main worry I think is that it's been there a long while and spread and had to have chemo . As I say my daughter had chemoradiation and she suffered so much bless her but then radiotherapy isn't a walk in the park is it . I would do anything for him Sandra and thank you x just need to tell 5 adult children bug we thinking about waiting till they have all had their hols and moved house etc as if on HT for 3 months first or would you lovely people advise different x
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Sometimes it is very hard to take in all the information when you first get the diagnosis. My guess is that you have misunderstood what was said, or it was all such a blur that bits have not been remembered well afterwards. It sounds like the nurse was telling you that if the results of the scans are clear your husband will have hormones (HT) and radiotherapy (RT) but if his scans indicate that the cancer has gone outside the prostate he will need HT with chemo. These are both standard treatments and as Johsan has said, even those members here that were diagnosed with spread tend to still be here many years later. If he does get RT with HT, that is a curative treatment which (as long as it is successful) means he will die of something else entirely.
The comments about dying with and dying of sound like a simple misunderstanding. Some men have a very slow growing cancer with a very low Gleason score which means they are unlikely to die of prostate cancer even if they don't have any treatment - these men are often encouraged to opt for active surveillance (close monitoring) to avoid unnecessary treatment and the associated side effects. It seems your nurse already knows that your husband's Gleason score is 7 or more and so he is not suitable for having no treatment and just keeping an eye on it (hence offering RT & HT). Seems she just meant he would die of it if he didn't have any treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I think that this is all very new to you so it is easy for you to misunderstand things and jump to conclusions but can I just say that I don't think it is reasonable to complain about the GP - looks to me like she has followed the guidance very well and did the correct things at the correct time.
Radiotherapy for some cancers is pretty awful but for most men with prostate cancer it is not a problem. My husband went to work every day, gym every day, carried on playing rugby etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you for reply yes that's what Nurse say about the treatment options and yes that's what Nurse said about what type he had sorry I didn't explain it well .As for Gleeson score she didn't mention she just said that other types didn't cause death where as his did . Is the Gleeson score the intensity of it sorry don't know anything about it .Im just worried that as I say it's been there a long while and because of the type that it has spread although nurse said even if spread its still PC which I can't get my head around . Think more of a shock as we thought all was well and it was Benign
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Hi Peggy
Welcome to the forum, a friendlier bunch of knowledgable people would be hard to find. You are in the shock stage of the diagnosis, waiting for results is very wearing and worrying, but the good news is that many people here have had much higher scores on the doors and are doing well. As Sandra says, side effects of the HT can become a problem, exhaustion and hot flushes being the most common. At the moment, all you can do is sit tight and wait. The time will pass and you'll get a clearer picture. It's awful, we all know that.
Kindest regards
Devonmaid
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6.4 PSA lucky guy mine was 47 when they put me on hormone treatment (Bicultamide and Tamoxifen)and within two weeks my PSA had dropped to 11 the only side effects I had was hot flushes. The scans are important to see whether its spread luckily for me it had not gotten out of the Prostate.
I chose to go for Brachytherapy as the results are equal to, or better than surgery and with little side effects. I was told by my oncologist that he was giving me HDR (High dose rate brachytherapy as my PSA was high and the Biopsy had shown that nearly all of the cores that were taken were cancerous. HDR involved fifteen sessions of radiotherapy followed by Brachytherapy (which you can read about on this site) side effects have been negligible weak pee in the morning and apart from fatigue I am at work full time (I only took six days off after the Brachytherapy) My PSA is now down to 0.03 which the oncologist has told me is undetectable (i still have a Prostate and it will still produce Antigens) Listen to what your medical team tell you and if you need more advice or have questions come onto this site and ask for it there is always someone on here that will answer your queries and some members are very knowledgable people. We may not be Medically trained but we are the ones going through it and dealing with PC. It is not as dark as you presently think it is. Only read the information on the official sites. Prostate UK, Mcmillan, and Cancer UK. Avoid the other web sites unless they are other countries official sites like Australian, American or Canadian as some of these have excellent information on them and they also sometimes mention treatments that they are trialling there countries and we will get them in the future if they work out, the same as our trials will find their way abroad if they prove successful.The world is a mall place when you have PC an everyone wants a cure.
With a PSA of 6.4 its quite low I have a friend with a PSA OF 10 and he is on active surveillance. So let us know what is happening and remember PC tumours are very slow growing.
Edited by member 30 Jun 2017 at 22:07
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Thank you both for reply . We weren't worried really as GP and both consultants seemed to think it was possibly BPH due to DRE and PSAl levels however nurse said PSA was low as Tumour not secreting so bit of a red herring and as I said I think they have said it will be treatment not surveillance and have told us the treatment options this does worry me as you say low PSA yet treatment ! . I'm sure nurse or consultant said the word aggressive which was the point I cried . everything is upside down at minute thoughts that as you say just being watched due to PSA and worrying why he hasn't got this option . Worrying if it's been there a long while and how much it's spread , your advice and kindness on here has made me feel a little better . Just got to wait to see scan results to see which treatment RT or Chemo bless him I'm praying it' not spread but as I said from the GP s remarks and consultant said felt benign he has been told he has PC and has to be treated . You guys are amazing I hope in time I can be as helpful to others MRI scan tommorow and bone scan Tuesday follow up 11th July . X I said the nurse said about PSA and Tumour not secreting has anyone else heard of this as it does worry me knowing that Low PSA could be monitored although as nurse said hubby's PC not as a lovely lady described the pussycat type and also another lady said about the Gleeson score but he wasn't told that just that he needed treatment .Sorty if this seems all jumbled I'm sitting here listening to hubby snoring away bless him .
Edited by member 01 Jul 2017 at 09:15
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There are at least 27 types of prostate cancer. Most cause the PSA to rise and that is often what leads to the man being referred and then diagnosed but there are a couple of rarer kinds where the PSA stays fairly normal. These types are worrying because a) they tend to get diagnosed later and b) some of the normal treatments don't work. Small cell prostate cancer and mucinous prostate cancer are two of these. However, if they thought your husband had one of these they would have been unlikely to start him on the hormones so it may just be that the nurse has made a comment without thinking and you are overanalysing it.
If you are unsure of the diagnosis details you should ring the nurse and ask her, or ask your GP for a copy of the diagnosis letter. You need to know the Gleason grade and whether they believe it is adenocarcinoma (or another type) - after all the scans etc you will also get a T score (1-4 plus a,b or c)
Aggressive does not necessarily mean what you imagine, in prostate cancer terms. Anyone with a PSA over 10, a Gleason total of 8 or more, an individual Gleason of 5, or T2c or higher is described as aggressive. It does not indicate how much time is left or whether or not it is curable. It would sometimes be better if the word aggressive was replaced with 'high risk'.
The Gleason describes how distorted the individual cells are. Score is from 3 to 5 (2 is not considered to be cancerous in the UK). The first number is the majority of affected cells, and the 2nd is the next most common. So my husband's biopsy showed a very tiny amount of cancer and most of the cancerous cells were a 3 but there were also some 4s - that gave him a G7(3+4). The G helps medics to decide the risk. Someone diagnosed with a G6(3+3) would be considered low risk because the cells haven't mutated very much but if that G6 has spread to bones then he has an aggressive cancer even though the
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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PS no point worrying about why he hasn't been offered active surveillance (AS). The vast majority of men diagnosed will have treatment - if you look at the stories of the hundreds of men on this forum, only a handful were offered AS
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ah thank you for help you are so knowledgeable lady had appointment letter today for bone scan and got MRI tommorow . They said be 3 months HT then 7 weeks RT if not spread but chemo and HT if has just wonder how chemo will be given .Also if they are saying aggressive do they think it has spread or again am I jumping the gun and worrying . Will try not to badger you all again but thank you all you have calmed me a little xxxxx
Edited by member 01 Jul 2017 at 12:06
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You are confusing 'aggressive' with 'advanced' - as I said above, aggressive means either the PSA is over 10 or the Gleason is 8 or more or things like that. Advanced means it has spread. It can be aggressive but not advanced and sometimes (rarely) advanced but not aggressive.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lovely lady thank you silly question but if PC is a slow growing C what causes it to spread is it the type or time it's been there .You are so informative thank you
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Because a) some prostate cancers are not slow-growing b) it is more likely to be diagnosed late because the symptoms are not clear cut & early stage diagnostic tests are unreliable c) some types are more likely to spread than others (for example, the most common ones like to go to bone but small cell cancer likes lungs and soft organs etc).
Slow-growing doesn't mean it doesn't grow at all - just that it tends not to spread from inside the prostate to outside the prostate in the space of a few weeks so newly diagnosed men usually have time to get scans etc and to make decisions about the different treatments offered to them. As a comparison, if someone is diagnosed with a malignant brain tumour then time is of the essence as it can grow so quickly and kill off the healthy cells around it. Prostate cancer is a hormonal cancer so tends to behave in a different way.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you I am thinking it may have been there some time as he didn't think anything of the toilet visits at night and not really had any other symptoms apart from tired but at 66 working full time and on the go all weekend didn't ever think it could be PC .
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50% of men in their 50s have some prostate cancer cells, as do 60% of men in their 60s and 70% of men in their 70s. However, many of these men never even know about it, it is never diagnosed, doesn't affect them in any way and they die of something entirely unrelated. So yes, he may have had it for a long time but so have most men.
There are four very well known prostate cancer specialists who were all diagnosed with prostate cancer. Three were diagnosed early and have had whichever treatment they thought best. The 4th was diagnosed too late for treatment and I think has since died despite being young and an expert. That is how unpredictable it can be.
No point you worrying about things you will never know for sure and which make no difference to what happens next. Fingers crossed that the scans bring you good news.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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How do you know so much ? All makes interesting reading and as you say no use worrying and trying to guess things . One thing the consultant did say which I thought strange was when she told hubby they had found C I'm sure that's when she said the word aggressive as she followed it up with that he was still young enough to treat .I didn't think about it until earlier today . Anyway thank you again .
Xxxx
Edited by member 01 Jul 2017 at 21:14
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Hi Peggy, Even if the cancer has spread there are treatments than will help. My husband is only 3 months in and his has spread to bones and lymph nodes. He's on Hormone Therapy and has just started Chemo this week. So far no noticeable side effects and has managed to go to work each day since Chemo started. So don't worry there can be things that will help. We did guess right from the start that his was advanced as his PSA was over a thousand. I do understand the worry and all the waiting for scans and results are difficult to cope with.
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If you click on someone's photo you can read their profile. My dad and father-in-law both had prostate cancer and then my husband was diagnosed when he was 50. Dad had it when he was 60 and he was one of the first to have what was then experimental nerve sparing surgery - the cancer came back about 3 years ago but for the time being he doesn't want to have any more treatment. Stan was 79 when he was diagnosed and rejected all the advice about having some treatment - he died 4 years later. My husband had the operation but it failed so he had to have salvage RT - now it seems that has failed as well.
Supporting that many men, I have been a member on here for a long time and I am a researcher by nature so I read everything that is published but ultimately just a wife like you. You will quickly come to learn all these things about the different treatments and scores as well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ladies you are an inspiration throughout the day reading these posts I am hopefully realising when the nurse said he will be with you for years wasn't something to make me feel better .I thought last week when he was diagnosed that was it but now I know there's treatment and although it's going to be as the nurse said a tough few months and our lives will never be simple you ladies have helped so much . I can't believe some of the PSA levels when my hubby's was 6.4 . My hubby has said he hopes it hasn't spread and its Radiotherapy but I said which ever it is it' we have to get through it but just asking is the chemo regime the same for all if so do you know sessions etc and hiw far apart they are or does it depend on different factors .
Xxx
Edited by member 01 Jul 2017 at 22:08
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Chemo is normally Docetaxel for Prostate Cancer. If done early with Hormone Treatment then it is likely to be 6 sessions at 21 day intervals. Each one will depend on blood tests beforehand which need to be OK for treatment to go ahead. There are a number of people on this site who have posted information as they were having treatment. I found these really helpful but I would suggest that they would only be applicable if that was the course of action suggested. Hopefully your husbands will be contained within the prostate.
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Morning lovely people MRI done yesterday feel a bit anyhow this morning .We haven't been apart since diagnosis and this morning he has gone back work . Why am I feeling so low it's not my illness and he's acting as everything's normal . One thing I want to ask we have 5 grown up children and hubby doesn't want to tell them until we had holidays in a few weeks and they have all had holidays which will be end of August as he says he will only be on HT for 3 months so why tell them yet tell them before whichever treatment it is . I agree to some extent as they all havethings going on at minute as well and so what's best .3 of the children are mine 2 hubby's and due to issues they don't always get on and we know if we tell them all together reactions will be so different .I know it's a horrible thing to say but the most upset will be my 2 girls one whiich has been through chemoradiation and the other one is the one that's always the one that steps up when needed and I know it will upset hubby so advice please keeping it from my two girls is not easy and I found myself biting my lip on Saturday when with one of my girls . He's got bone scan tommorow and treatment available so why won't this awful feeling in my heart go away .
Edited by member 03 Jul 2017 at 09:25
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Sitting waiting to return to hospital for hubby's bone scan and phone rings woman says our financial advisor has ask her to give us a ring after a conversation earlier in the year . Nearly blew a gasket she said that she had been told we were thinking about updating our wills 😱😨😰 I said you couldn't have phones at a worse time anyway want to ask a question please. .Rightly or wrongly I have read different posts on here one saying about terminal diagnosis can I ask how can they say what treatment they are going to do without the scan results ? And how if it has spread where it has gone to will that change treatment options One thing that popped into my head was when consultant say hubby was still young enough for treatment . So do they know by type of C that or will they change minds on results I'm sorry but I'm so worried your posts here gave me calm but now reading about spread to lungs etc and the word terminal on top of phone call .Please guys tell me to stop it
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Peggy,
You will have realized from the replies you have received and members histology that are recorded that Prostate Cancer (PCa), is highly complex and with outcomes that can be quite different, even where two men have similar PSA, Gleason score and staging. Some types of PCa respond differently to various treatments for example. Surgery may not be suitable or the best treatment option for some men for example due to other problems or the cancer having advanced beyond the reach of the knife. Some PCa is radio resistant and other treatments may be better but the majority of men at least have surgery or radiotherapy as primary treatment although in the case of radiotherapy, of which there are several types, Hormone therapy is usually started prior to the RT and continued after it. The consultant should discuss suitable treatment options with the patient which can mean it being left to a patient to choose which one to go for. (All treatment options have pros and cons an potential adverse side effects). Therefore, it is worth researching treatments and generally learning more about this disease. A very good place to start is by going to the publications section on the main part of this site and obtaining the 'Tool Kit'.
Treatment does not work well in every case but as it improves, along with early diagnosis, men with PCa are overall living longer and advances mean this should continue to be the case.
Barry |
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Thank you for reply hubby can't have op nurse said as he had triple heart bypass 7/8 years ago nurse just said if contained be HT and RT if spread HT and chemo we don't know mow till next week when get results if spread but nurse say that start HT so we thought that's what it is I just wonder do they know the type of PC from biopsy therefore know what treatment it should be . I just wonder how they can say treatment when not knowing if contained or not .Bine scan done but they sent hubby for normal X-ray on shoulder as something must have shown they ask him if he had had a fall or accident bu said could be an old fracture .
Edited by member 04 Jul 2017 at 16:39
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Hi Peggy,
Just to say I have seen that you sent me a message but I don't do private messages ... I think it is much safer to ask and answer questions publicly so that any errors or misinformation can be corrected by others.
As to your question above, you are overthinking and letting your imagination run wild so it would be better for your own well-being if you could try to reign it in a bit and wait for the results of the tests. However you are unlikely to get a terminal diagnosis - terminal means there is only a short time left to live and all treatments except pain/symptom relief have been stopped. If your husband'a scans are okay he will get a curative diagnosis - that means they will offer him radiotherapy because they believe it may cure the cancer (technically there is no cure for cancer and the better word for it is that they hope the radiotherapy will put him into full remission). If the scans show the cancer has spread, he will get a diagnosis of advanced / incurable cancer - it can't be cured so they will offer hormone treatment with chemo to control it. Some men on this forum are still here and reasonably healthy 10 years or more after an incurable diagnosis, some live for only a short time. Your oncologist would not be able to give a prediction of how long because he will have no way of guessing how many years the hormones will work for.
In answer to one of your other queries, the doctors can tell from the biopsy how aggressive it is and whether it is one of the rare types that don't work with hormones. The fact that your OH has already been told he will be on hormones means he doesn't have that rare type.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you I will try to do as you suggest just shouldn't read certain posts as the one I read was someone who had spread to bone and was told 2/3 years but still here 8 years on I suppose trying to see why some live long and others don't but who can anwser that Is it because as you say to do with the hormone therapy success or that they have other problems .The nurse seemed positive and husband is on the whole just me xxx
Edited by member 05 Jul 2017 at 11:07
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"....why some live long and others don't........"
So many reasons which include how early diagnosed, how timely and good treatment is, type of cancer, age of patient, response to treatment and if cancer mutates and spreads. There is also another imponderable in that only time shows the effect of new treatments and drugs on extending the lives of men with PCa. Very difficult for even patient's consultant to forecast life expectancy as you have seen from members. It really amounts to how lucky a man is. The thing to do is try to put such thoughts aside and concentrate on enjoying the time you have.
Barry |
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Thank you kind sir for reply I think all of you are right no one knows but the fact consultant say he's still young enough fit treatment and that Nurse has told us what treatment will be either way gives hope .Wish I hadn't cried so much might have ask more questions bug al, I could say was I don't want to loose him .She said you won't be here for years Mmm just hope that wasn't to shut me up crying .Anyway thank you all will know Tuesday. And then we are away for 2 weeks well that's if get insurance our Anual policy want to know if advanced before they say . You guys are an inspiration and I hope I can be same soon . I think its not knowing if spread although my hearts saying at his age I feel it's been there a long time so has they say his Tumour wasn't secreting so ? Anyway guys you are amazing .
Edited by member 06 Jul 2017 at 11:01
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Ok guys just had letter from the Dr hubby saw who told him he had PC I'm shaking have tried to phone the nurse at hospital but no anwser please help . it says some of which we knew PSA 6.4. DRE firm volume 32 cm IPSS 18/3 bilateral Gleason 9 and that she did urgent staging investigations .Ok spoke to nurse who explained things panic over but leaving score on door for u guys to see
Edited by member 06 Jul 2017 at 14:18
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Hi all thought I give you update .Been to hospital today for scan results all clear PC contained so having Hormone therapy then RT in around 3 months . Just waiting for call back from holiday insurance company to see if covered on our Annual policy . Thank you all for helping me through past few weeks much appreciated .xxxxx