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my dad has just been diagnosed with prostate cancer

16 Jul 2019 09:24

Hi everyone,

 

im writing on here to see if anybody could provide me with any help, clarity, reassurance... anything really. I’m just so confused. 

My Dad is 68 years of age and has just been diagnosed with prostate cancer. It’s all happened very suddenly... a standard blood test revealed an increase in PSA levels, and following that, last week he underwent a biopsy. He got the results back yesterday and they revealed he has a very aggressive form. His PSA is 19.58 and the biopsy has revealed a Gleason score of 9 (5+4) in 69% of the samples taken and a Gleason score of 8 (3+5) in 31% of the samples taken. I know that such scores mean aggressive and likely to spread quickly, so he is having a bone scan today and a CT scan tomorrow to see if and how much it may have spread elsewhere. 

The doctor and nurse have told him that based on his Gleason scores he is not curable, but how can they be 100% sure of this if they haven’t yet conducted scans? Will they know from the biopsy alone that it’s spread? 

 

Now for the most confusing part of all...

Yesterday the doctor and nurse told him that they believe he’s had prostate cancer since his early 50’s!!! We’re talking between 15 and 18 years ago?? Yet what I don’t understand and just cannot wrap my head around, is that my dad has always been super fit and healthy!! Like, REALLY fit and healthy and he has not displayed one single symptom of prostate cancer whatsoever. If he’s had it for that long, and if it’s such an aggressive form that has already spread, surely he’d have shown signs of something? I must also mention that 6 years ago he was diagnosed with bladder cancer which he was treated for (cauterisation but no chemo or other treatments) and he was successfully treated with no recurrence. He found out about his bladder cancer because he suddenly started peeing blood and finding it difficult to urinate... these are 2 classic signs of prostate cancer too, so why on earth was he not tested for this at the same time they tested for bladder cancer??? He was also admitted to hospital last year when breathing became difficult and lung scans / biopsies revealed fluid on the lung and calcification, which they though was lung cancer. It wasn’t lung cancer and turned out to be pleuritis. He was also found to have blood in his stool at 60 and he has had a colonoscopy twice a year for the last 8 years. He had polyps every time, but all benign. 

 

My point is, through all of the colonoscopies and all of the cameras up the rectum amd urethra, how hasn’t his prostate cancer been detected long before now? And why hasn’t he even been tested for it given the high risk he’s been with the lungs bladder and bowel? With it being such an aggressive form of cancer then surely this wouldn’t have gone unnoticed?

 

im absolutely terrified and have no idea how to feel. I think I’m still in shock and numb. I love my dad so much, we’re like one and the same person and I can’t cope with the thought of losing him. Is it really likely that it’s spread elsewhere? His blood test revealed high levels of alkaline phosphatase which Iv read means bone cancer. And all I keep seeing is that five year life expectancy for secondary prostate cancer patients is 29%. Im frantic and I just can’t jnderstand how this has happened. 

 

If anyone can give me anything at id appreciate it so much. Thank you all in advance

 

god bless,

 

michelle

my dad has just been diagnosed with prostate cancer

16 Jul 2019 09:41 in response to Michelle88

Hi Michelle, try and relax if you're father is fit he'll probably go on hormone therapy, than cemotheropy same as me, I've had prostate C for years it went to lymph nodes, spine, ribs, pelvis and I lung over three years ago its not curable i had psa 1581 gleason 8 stage 4 you can live with it I'm living a normal life, oh I'm 67 last psa was 0.8 in March when psa gets to 20 I have more cemo to take it down again, as I said before as long as he's fit enough for cemotheropy it's not nice but it does work,, best wishes.

Billy

P.s i was still working until Xmas had to retire to look after my disabled wife 

my dad has just been diagnosed with prostate cancer

16 Jul 2019 11:48 in response to Billygoat

Hi Billy,

Thank you so much for your reply, although I am so sorry to hear that you’ve got through such an ordeal yourself. It is very reassuring to hear from someone who has first hand experience of prostate cancer. The hospital have mentioned hormone therapy, chemotherapy and radiotherapy and told him he may have all three. It will be a gruelling time for him I’m sure, but I just hope he responds well to the treatment. 

Can I ask if you had any symptoms? Of the initial prostate and any symptoms that it had spread? I get so confused at the PSA too... yours was very high and my dads 19.58 seems very low in comparison... yet yours was grade 8 and my dads is mainly grade 9? I don’t understand how that works... has anyone ever explained that to you? 

 

Thank you you so much again for replying to me, you’ve helped me so much already. 

Xx 

my dad has just been diagnosed with prostate cancer

16 Jul 2019 12:14 in response to Michelle88

Hi Michelle it can be very confusing but I'll try to explain, grade 8or9 there isn't much difference psa, as you've seen can vary alot but it can give worrying numbers which don't mean much, Cemo can play hell with the body, aches and pains, feeling sick or being sick pins and neadles in hands and feet, but sometimes there's no side effects at all, it can vary a lot,, i didn't have any symptoms at all i was ill with something else and Dr did psa tests just to be on the safe side with my age,, hope I haven't scared you with side effects, i got a letter explaining them before 

they started treatment, (with hormone therapy, he will probably have hot flushes and put on weight), if i can help in anyway please ask,

Billy 

my dad has just been diagnosed with prostate cancer

17 Jul 2019 13:03 in response to Michelle88

Hello Michelle and thanks for posting, 

I am sorry to learn about your dad and can understand this is a difficult time and has come as a huge shock. 

Wondering if a cancer could have been spotted sooner is a common and natural response to a situation like this, but cancer's don't always cause noticeable symptoms when they are small. And when a cancer does cause symptoms, the very same symptoms can usually occur for other reasons.  I am not sure why your dad had the PSA blood test, but I assume he had some unexplained symptoms that were being looked into. When he was passing blood before and having trouble peeing, because they found he had bladder cancer I don't expect anything else was suspected, especially if things went back to normal after his treatment.

Cancer is most often diagnosed because of the symptoms it causes, but some cancers are picked up on screening. Screening is looking for a disease in someone who seems to be well. Doctors don't routinely screen otherwise healthy men for prostate cancer, and I don't think your dad's medical history would have prompted them to look for it because they were looking at problems in different parts of the body which aren't linked to prostate cancer.  

I am not sure why the nurse and doctor were so certain in what they said, but I do know that prostate cancers with high Gleason's scores are more difficult to completely cure because of the risk of the cancer spreading. The extent of the disease (stage) is also a factor and you won't know this for sure until the scans are back. But despite modern imaging, the results can't always be certain as tiny collections of cancer cells that have escaped and spread might not be picked up. Even when potentially curative treatment is on the table, it might not work, but treatment can hold the cancer and delay its progress and so prolong life often for a long time (years).

I think at the moment all you can do is to wait for the rest of the scan results and to hear what the multidisciplinary team (MDT) say when they have reviewed your dad's case and decided on the best way to treat him. Only his medical team can say what they hope his treatment might achieve. Remember statistics are just that, they look backwards while going forward, treatment continues to be refined. So for now, try and take it one step at a time with the first step being the outcome of the MDT review.    

I hope you know more soon.  Please give us a call if you want to talk anything over.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care, 

Julia

my dad has just been diagnosed with prostate cancer

17 Jul 2019 13:43 in response to Michelle88

Hi Michelle

I know that everything about cancer is terrifying. And PC can be so confusing as so many men are Asymptomatic, and due to that it seems to be missed early on. My husband who like your father was fighting fit found out last summer ( June 2018) during a routine examination he had stage 4 ( gleason 9/10) prostate cancer. He was feeling fine, and then boom we were in this new world. After much discussion and opinions from Urologists and oncologists it was decided he should have prosttectomy. It went really well, no overwhelming side effects. But the surgeon warned that one of the margins ws broken. 8 months later his PSA went up, He had a pet scan and it had gone to the lymphs. He is young and fit and so they are doing a two year hormone program, chemo and radio, We are in the middle of chemo now. He is a bit tired, his sleep is interupted and is a little irritable but he is doing well, All I can say is at least he has a viable treatment plan. And the advances in Prostate cancer care are so great, there will be more in the tool kit as time goes on. It is our new normal, but for now we feel he has a plan. and he is following it.  And we are coping with it. I have spoken to many men, spouses and siblings about this now,. And it seems three years out, five years out there are those doing well. Try to stay positive as much as you can, and focused on the treatment plan. And researching the best of the best to find that treatment and it will feel less daunting. 

my dad has just been diagnosed with prostate cancer

17 Jul 2019 20:55 in response to Michelle88

Dear all,

I wish to post on my experiences with Prostate Cancer. Firstly I am 56 and saw my Mum diagnosed with Breast Cancer aged 50. This was treated and then she got womb Cancer 8 years later. This to was treated but sadly 5 years later Liver Cancer secondories from the Breast Cancer were diagnosed and she died 2 years later aged 64. We were devastated. My Dad was diagnosed with Prostate Cancer in 1999 two years after my Mum died at age 71. Radiotherpay shrunk the Cancer and his PSA Readings dropped. All went well for several years until the PSA readings started going up again. My Dad then started to receive Zoladex implants. For the last 18 months the PSA readings started going up again. My Dad was given pills to take alongside the Zoladex implants.Sadly a routine blood test showed a PSA reading of 85.7 in January 2019 and then 144 in February and then 830 in May. Aged 91 now my Dad's walking was getting worse with his walker and I put it down to him sitting around and sleeping most of the time. A few days after the latest PSA result he fell backwards in the house I stpeed him falling and the scream he let out will live with me for ever. I got paramedica who got my Dad to bet this was at 3.00 pm. A doctor was called but did not come until 12.30 am the following day.The doctor checked my Dad and got him to walk from the bed to the lounge. The doctor advised he was concerned there might be clot on my Dad's lungs and he would need to go to hospital. My Dad did not want to go to hospital but the doctor said he had no choice and that he could not leave without getting an Ambulance. An ambulance was called and I accompanied by Dad to hospital. The doctors advised that goven my Dad's age and Prostate Cancer which he had for 20 years they needed to see what was going on. Many tests took place the next day and sadly that evening we were told the Prostate Cancer had metasised - spread to his Pelvis, Spine, Left Lung - but no clot, and Liver. Nothing more could be done and he had between 4 to 6 weeks to live. I and other family members were devastated but could not show this in front of Dad so we had a room in which to phone others and to be honest compltely break down. Here was me my Dad's best friend and I had been there every day for my Dad since my mum passed 22 years previously. I got my Dad home and organised Pallative Care. He had been getting treatement for a sacral wound - hole in the rear for the lasy two years which I assisted with in terms of medication some days. It was not healing but we prevented infection which could have killed him had it got a hold. I got my Dad to the orthapeadic bed we had installed and he never got out of bed again apart from twice to attempt to use a commode but he was to weak. My Dad whose mind was strong to the end said. We had made a huge mistake in going to the hospital this devastated me as I did not want my Dad to go to hospital but we had no option I explained and this was just left at that. My Dad developed a chest infection which he fought so hard the doctors gave him an antibiotic and he survived this. He then had blood in his urine. He had a catheter fitted 6 years ago following a Urine infection.This could have been blood from a tumour but he got an anti- biotic and the urine cleared. Gradually my Dad could only eat small portions and swallowing was becoming difficult so I gave him foods we could mash up for ease of swallowing and to prevent chocking. Sadly he was soon on fluids only and the Morphine pack was put in. Over the next few days Communication ceased and his eyes rarely opened.The doctors and nurses were amazed at how strong his heart was even although the pulse wasweak. Sadly my Dad's breathing deteriorated becoming heavy and more shallow and he passed away one afternoon almost a month from the outcome of the PSA reading of 830. I was devasted as he passed away. I had taken early retirement two years ago to look after my Dad after he fell at home. I called the Funeral Director and it was horrible as my Dad's body left the house for the last time. Unbearable thinking of him on his own that night on his own at the Funeral parlour. I got to see Dad each day at the Funeral Directors parlour and he looked at peace. The funeral was held 6 days later and we had a phot show at the begiining at the Crematorium and it was really moving going through the photos as they were displayed one by one as I and my teo sisters realised these were photos of times and events from the 60's until my Dad's 90 th Birthday nearly two years ago and captured times that will never come back. You realise and Iam 56 that for you much of life has now passed by. Following the funeral I still feel my Dad's loss greatly. My Dad's ashes have been buried alongside that of my mum in the local churchyard my Dad would visit most days until no longer able to drive due to a macular degenerative eye condition and I took him down whever he wanted to go. I find myself going to the churchyard most days and in tears to be honest. Visiting places I wnt with my Dad and visiting his old friends including in towns we used to live recently so vivid with all my memories. Visiting the twon we gre up in and seeing everything really as it was 40 years ago created a hollow feeling in me. I llok at the chair we purchased for my Dad for his 90th two years ago wishing he would appear but of course he cannot death so final. I wish I could have got my Dad out to more places over the last two years but the sacral wound which required a repose cushion plus frailty anyway meant apart from the odd trip out and to medical appointments he just stayed in his chair. I washed and dressed my Dad every day and to have him no longer here is devastating most days. I get out on walks and meet friends most days but the sense of loss and going back to an empty house is overwhelming. I have to think he was aged 91 and would have been 92 this September and probably even without the Prostate Cancer might not have lasted much longer but you think your parents will go on for ever particularly when they were as old as my Dad. I get upset most days but as the local nurses and doctors have said you did everything you could for your Dad but once Prostate Cancer or amy Cancer metasises - spreads there is nothing in this world that can be done. You think of all the great times and I have to move on although it is hard to think of that now some 7 weeks sine he died. I was devasted when my Mum died 22 years ago but having my Dad we were able to be there for each other. We did have a brief chat about how life might be for me once he died and my Dad said it would be difficult particularly since we went everywhere together. I do a lot of walking with friends and this helps but I guess in time I will get to the stage of acceptance of the situation and that we will all die and that my Dad is re-united with mum now which is fantastic and that he did very well getting to 91 with Prostate Cancer for 20 years but I immagine you never truly get over Bereavement but you know you cannot change  what has happened and what would have happened one day soon anyway given my Dad's age. We have to be thankful for great times that have been and wont be back and accept all that could be done was done. You do not want to see loved ones suffer knowing they cannot be cured. Bereavement the most difficult thing we will ever have to cope with it is like climbing a vertical montain most days but I know I have to get on with life - hopefully a part time job now. My Dad took up so much of my time these last two years when you lose that caring role a huge hole is left with my Dad's passing as we laughed and talked each day. I will get there you have to avoid Depression otherwise it means Mental Health services getting involved and no one wants that. Having been through these last few weeks and months there is a very narrow line between Grief and Derpression and I know how close I have come but somehow having sttod almost at the Depression door grief and tears - let them out when you need to and you feel better but My Dad's loss will live ewith me and I will just need to accept that. Time they say is a great healer. I just hope this is the case.                               

my dad has just been diagnosed with prostate cancer

18 Jul 2019 14:18 in response to brown6

Hello and thank you for your post.

I am very sorry to learn that both your parents died from cancer. I  can appreciate that the more recent loss of your father must have left  a big hole in your life, particularly  as you spent a lot of time with him and that you looked after him during his illness. It is good to know that you are out and about and walking with friends. This sort of thing can help. But at the end of the day your grief is understandable and as you suggested time probably will help. Meanwhile if you think that it might be useful you are welcome to give the nurses a call. Our freephone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am to 5pm.

Kind regards,

Jean

my dad has just been diagnosed with prostate cancer

30 Jul 2019 09:18 in response to CRUK Nurse Julia

Hi Everyone,

Thank you all so much for your responses and providing me with information and hope. It’s been a difficult couple of weeks but my dad finally got the results of his bone and CT scans yesterday. Unfortunately the cancer has spread to the bones in multiple sites and lymph nodes (the nodes contained within abdominal area). The doctors  have decided to give him hormonal treatment and chemotherapy. 

Does anyone have any information on side effects he may experience? Or can anyone recommend a forum where people have experienced this treatment first hand? 

Thank you so much x

 

 

my dad has just been diagnosed with prostate cancer

30 Jul 2019 15:58 in response to Michelle88

Hello Michelle88, thank you for letting us know again about your dad's situation.

I am sorry to hear that his cancer has spread. The treatment he has been offered is recommended in the UK as a way to treat advanced prostate cancer. Unfortunately, as with all treatments, there are usually some side effects that nearly everyone will be affected by. How your dad will be affected is not possible to know until he is having the treatment as everyone's experience is different.

Your dad's cancer team will give him information about his treatment and how it can affect him. We also have information about this too, so when you know the name of the specific information he has been offered you can search for it on our website, click here  to see the treatment information.

You might also find posting in another topic area on Cancer Chat gives you more responses from people with a similar diagnosis.  

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline

my dad has just been diagnosed with prostate cancer

30 Jul 2019 16:18 in response to Michelle88

Hi again Michelle, as I said earlier I'm same as your father hormone therapy I was on is DECAPETYL its an injection every 21 days, then cemotheropy, DOCETAXEL To start with i was supposed to have 10 sessions but they cut it down to 6 because of bad side effects,, hormone therapy, gives hot flushes and weight gain, Cemo, can give nausea or actually being sick, aches and pains all over, remember some have no side effects at all, your father should get a form with all details on before treatment, best wishes. Billy