Hi cantmoveon,

I'm sorry to read about how you're feeling and I can completely understand that you are looking for answers about this.

Unfortunately I'm unable to advise - in terms of the medical side of things, it might be best to discuss with your doctor at a time when you're ready to do so, to help you get answers. As another option, if you'd like to discuss with our nurses, you can reach them on 0808 800 4040 - Monday-Friday, 9-5.

I hope you're able to find more answers soon - and in the meantime, if anyone here has relevant experience to share then hopefully they'll be along soon.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi ime so sorry i cant cant realy add much to bens advice .are you worried that you may have the cancer gean .if yes you may be able to get tested for it you may want to contact your gp over that he may refer you for testing but dosnt mean you will have it . If you smoke or drink stop now its not the gean so much as what sets it off .i can tell you thoe this rotton disease has no order to it and it does leave us with questions if your trying to figure out cancer forget it you just cant it has no order and can take the healthiest .when we loose a loved one it makes us worry about our own mortality if its getting at you go see your gp he will put your mind a rest . My partner was taken by two types of cancer her daughter was worried but the oncolygist said it was caused by lifes lifes choises meaning liz smoked and drank we are baby boomers and when we were young we were brainwashed into thinking it was cool to smoke they didnt know then how canver was caused so try not to look for answeres because there arnt any years ago i worked for an agricultural spraying company i used to get coverd in the stuff its all banned now and ime still here by all acounts i should be riddled with cancer . I empathise with your loss though its a painfull thing.paul

Hi, thanks for the replies.

No I'm not worried I have the gene, I don't really care, I've already resigned myself to getting it since most of my family have had cancer of some form. I don't have kids so don't have to worry about passing it on either. I don't care about my own mortality as I've always hated being alive and wished I was never born. I don't smoke or drink either, never have, neither did my dad he had a very healthy life style and he still died. I'm sorry to hear about your partner, cancer is so awful.

You say cancer has no order and you can't understand it, I agree with you but the experts give you ideas of how aggressive your cancer is likely to be (with prostate cancer anyway) and you make a decision based on that. My dad's was not supposed to be that aggressive, which caused him to take a treatment option he might not have taken had he known it was going to be so bad. A treatment option that didn't work. I wish I could've asked his oncologist these questions but he was useless and very dismissive. If he'd had a better oncologist he might've survived. He did go to someone else after it had spread but they were useless too-not even a phone call back. I was very down on the NHS and medical care in this country after this and my grandad's experience, but have to say they have been amazing with my mum and grandma.

I was just wondering if there were other people on here who had experience of this or knew much about it. I could only find one post of someone talking about it. Maybe if anyone else is looking for advice they might see my post and I'll help answer any questions and support if I can. It's really hard when your loved one is in the rare category of a disease and you just ask yourself how you/your loved one could be SO unlucky. The way my brain works I have to know the answer to EVERYTHING and delve into it and I still don't know how my dads cancer turned out so different to the normal course of that disease. Well guess I'll never know.

I didnt think i was botherd about being here to after i lost liz but i had suspectect protrate cancer they are still not 100 percent sure this is it know one knows were its going to hit you in my case 6 weeks after biopsie i ended up in hospital for 8 days with sepsis then anothere 8 days in the end i have crohns disease i had to have a 6 hour bowle resection and bladder repair when they had me in giving me nerve block in my back for post sergury pain before anaesthetic i thought cri.st i might not wake up here thats when it comes to you how preshous life is . Ive thought a lot since ive 3 adult children and i feel just the way your mum and dad feel about them they will want you to go and have a good life yes its not that oncologists are uncaring they just have to keep a distance or they would end up basket cases and yes we are still in the dark ages with cancer and ime a spong for knowleg to to i could see that in you to but ime getting on a bit and ive realised sometimes there are no answers like with my liz if i kept on trying to find out i would end it going round and round in my head looking for an answer that wasnt there cancer can move anywhere your blood goes and grow a few cells i beleive  hope someone comes on and can give you some better advice but do come on again we are just like you some have lost loved ones some have cancer and still give support one day when you come to terms with this you may come on and give someone advice on your experiances but when your ready try some counciling it can realy help with some answers .p

Really sorry to hear of all the things you have been through as well. Life is so tough, more of a curse than anything I think. I feel like I need to know the answers because it might make me feel better, like if I could get an expert to look at my dads medical records (I know it's a long time after it happened but still) not right now during this virus crisis of course when they have so much else to do but maybe at a later date. If they could tell me look there was nothing that could have been done different for a better outcome but right now I still don't know. 

I also think if I had done this at the start I maybe could have looked into taking legal action against the oncologist/hospital-I'm not one for suing people but my dad suffered so terrribly, unnecesarily so and it has all but ruined all our lives. I feel like I need answers and need the oncologist to be held to account. Although I know this is all too late. My mother didn't want to pursue this at the time and I had to respect her wishes. I dread to think how many poor people have suffered at the oncologists hands since my dad. I am thankful my dad is not around now though (look at that he left his kids to suffer through these terrible times instead!) My heart goes out to anyone facing cancer themselves or their loved ones at this time, my mother and grandmother are currently undergoing tests so I am praying they don't have cancer right now as well. Life really is tragic.

Yes gav it sucks they i had a look on the web after we spoke yes it is rare its to do with linning of your brain . You can contact p.a.ls at hospital your dad was treated at they send you forms then investigate there impartial .you may get some answeres there theres 200 diffrent cancers my liz was misdiagnosed but because we were not married the minute she died i was no longer next of kin so could do nothing but liz had so many underlying problems i was worn out and in her daughters case she barely came to hospital after we had a big bust up so that was it even grief counciler said it was maybe best we parted company on reflexion she was right or i would have been worse angry and resentful but liz was taken by sepsis two days after a stroke had first chemo 4 days before but it was cancer took her realy ive done my best now to stop being eaten up by hate as its only me that hurts .like i said you will be so raw its just a heartbeat since you lost your dad so just try and give your mum some comfort and let it ride or it will just eat you up and your mum to just concentrate on grieving my friend look after your mum she will be lost as i was its taken me nearly two years to get where i am today i told you about my op just to say we think lifes shitt.y but i can tell you this your views change when you may not live i found lifes better than know life there must be something thats made you feel that you dont want to be here its its finding that reason and putting it to bed and getting a life you do like you can do it but for the moment just take it as it comes theres not much else to do till you get your emotional energy back my liz said to me i dont want to die but when we met she said she didnt care wether she was alive or not and i gave her a reason to want to live thats what you need to find .paul

Yeh it's really rare, I thought the experts might even be interested in his case because it's so unusual. Can't figure out why he died so quickly either, there are men diagnosed at stage 4 alive longer than my dad and when he was diagnosed it must've only been stage 1, maybe stage 2 at the most. Thanks for the advice regarding the hospital I might try that later on. Gosh I'm sorry to hear you couldn't be classed as next of kin and sorry about the bust up with family that's terrible. I don't speak much to my siblings after my dad either, whole family was split up really. They weren't much support for me (I'm the youngest so I thought they would care more but they didn't).

It's not a heartbeat since I lost my dad it's years now. My mum is over it now. It' so long ago now it's like he's a stranger to me, I can barely even remember him (except his last year of suffering) if I was to meet him again in "heaven" if there is such a place I would be like "I don't know this man anymore" as sad as it sounds. So long ago I've lost my memories for the most part of him but the anger and resentment remains.

I've always felt like this about life, at age 8 I was pondering the way the world is and asking my parents why the world is so terrible-they didn't really have an answer for me! I've always been astonished that other people don't see the pain and suffering to the same extent, it's unbearable to me everyday. It got worse when my dad died because he said to me about how much pain he was in, he said the words "no ones had as much pain to deal with as me, no one" and that is a very hard thing to live with.

Sorry didnt think it was that long for you theres t thing called complicated grief its on the web . Sometime we get stuck .yes theres evil devils in this world thats for sure maybe you cant see the good stuff like they cant see the bad .do you pick up on people when your around people theres t thing called empaths we can get overwhelmed by other peoples feelings .theres t lot of good stuff in this world kind people that help otheres to one degree or another look at on here . We try and give otheres comfort in there loss and we may be hurting more than them altruism they call it . Thing is gave cancer spreads in 3 ways locally.through your lymphatic system and blood stream these mutated cell say in your dads prostrate dont have what they call adeasion or they are not as sticky as prostrate cells also there not true prostrate cells so they brake off and move round you system maybe go to your lungs or your brain and start growing there even pet scans are not a hundred percent acurate as they can be tricked by inflamation the only true way is to do a biopsy which can cause needle tracking releasing cancer cells into your blood so thats the only way they can do it is look at samples taken from the biopsie under a microscope .people can appear fine then when it does show symptoms its grown everywhere .if it travels round in lymphatic system then your lymph glands swell as thats what there there for to stop infection . So most of the time its its secondarys that take you .my liz had cancer of unknown primary meaning the cancer that started it might not even be there now .its like looking for a needle in a very complex haystack .does that help .in my case i diagnosed myself because its so rare to a fistula at abnormal track from my bowle to my bladder that kept reinfecting me but i dont think they even thought to look till i mentoned it they thaught it was just a urinery infection just a one off our bodys are so complex its a mirical how it can divert things to keep you going . I still look on the world as being a good place maybe eveen more now as ive seen and had the kindness of otheres how they were with liz and me me the nhs has been kept short of money that lieing toad camaron we will look after nhs what a lier the waiting lists are longer they took bursery away for nurses to train .and most of the nhs staff are still trying to keep us all alive whats wrong with that eh imagine if your family didnt have nhs i wouldnt be here talking to you also when i saw your post i could see you hurting angry and needed answeres that are holding you back where there arnt any .

Yeh people say about all the good stuff in life but never really come up with any examples...ok you say people help each other on here yes that's wonderful it helps, but can't really erase any of the terrible stuff in life. I just see the stuff in the news and all the people suffering and can't stand it. Plus I've seen so much in my own life. I don't know how other people cope, I don't know how I've coped so long.

Yeh he definitely had cancer in his lymph nodes, he had a swelling in his neck and that's when we first found out the cancer had spread but at that time I didn't realise how bad that was because my mum was just like "it's from the prostate and he's going to take some hormone treatment" and that's all she said. I was so naive even though I had lost my grandad to cancer, my mind should've been screaming this is serious but I had no idea which sounds mad now. Then when he had bone pain he was convinced it was from the prostate and I didn't even know at that point that cancer spread to the bones I thought it just spread to other organs at that time, how naive I was. 

Like I said the NHS have been wonderful with my mum and nan (for the most part) and I can't praise them enough but they neglected my dad and grandad and left them in terrible pain and treated them terribly. One nurse told my grandfather to "stop complaining"-she later apologised when we found out he had metastatic lung cancer but it was too late by then, that comment has stuck with me. My poor grandad thin as anything from losing weight, in so much pain and never did complain anyway. Still breaks my heart til this day. And another nurse ripping my dads chemo canula or whatever you call it out when she couldn't find the vein and making it bleed then going off in a huff. God I'm crying right now. I could go on and on about the lack of care.

Sorry it annoys me when people insinuate I am misplacing my anger or something (like someone did in a previous post I made) and it's not the oncologists fault or whatever. It's not just me I went on his review page which when my dad died there weren't any reviews but there are now and guess what they are all awful saying the same thing can't believe the lack of care can't believe how they treat their patients (and that was from another doctor that said that) so it's not just me. The hospital also has many terrible reviews about lack of care infact I think it's in the top 10 for worst hospitals in the country. 

Ime beggining to understand now . This is part of grief and a big part of it is guilt yes ok your angry at the hospital the ocologist but i read it straight away when you said ( why didnt i ) its the what if when liz passed i knocked myself to peases because i could not save her a stroke why didnt i think of that i thought i had everything coverd you think your angry wow was i at myself to yet as time went by i realised i had done a lot and well ubove what the normal person i would sit and study cancer what it was how it works for month hours on end case studys not your blogs the real medical stuff half the time i had to look up what the medical terms were before i could understand what they were saying theres one thing the most important thing your not angry at is cancer itself .ye when i was in there was one or two nurses that were horrible but i put them in there place straight away even more so with liz .gav ime not medically trained but ive two degrees in the universaty of life . Your trapped in anger mode . Seems to be a man thing we are brainwashed into protecting our loved ones and when we cant we blame ouselves and get angry this rotten disease is awfull dosnt just take our loved ones it takes us to if we let it your mums not moved on she has come to terms with it your stuck ill probably not hear from you after this because you will not like what i say but you need to try and come to terms with it yourself . You can all its doing is making you unhappy my friend see if you can get some bereavement counciling as i said theres a thing called complicated grief where people get stuck but its treatable but you need a dr to diagnose it . Maybe have a word with your gp ime sure they can help you being so unhappy i do hope so sounds like you have had enough pain in your life time to change that dont you think you can only stop pain so much the only other way is putting them to sleep .i considerd sepsis taking liz as a blessing because she would have only lived a short while paralysed and dieing in pain . As to the dieing quicker it deppends on the speed cancer cells reproduce in diffrent bodys the young its quicker because there cells grow faster cancer has no fixed time factor you can be stage 4 and live for years stage one and can be gone in weeks as i said theres no order to it so how can you figure it out the onccologists make an educated guess as to how long you have  if they get it wrong then its there fault its no ones fault only cancer ime sticking up for no one ime telling you how it is .paul.