Dad's results

User

Posted 23 Feb 2016 at 23:47

Hi All

My dad first started having symptoms (urinary retention) on 2nd Jan. He was taken to hospital where they did a PSA which came back at a high 154. He's had all the scans done and today we finally got the results. His bone scan came back completely clear which was marvellous to hear but his Gleason score is 8 and it has spread to the local lymph nodes but other organs etc look clear. A specialist nurse gave him the results and she said that based on what she had in front of her, they will likely offer curative treatment starting with hormone therapy next week followed by radiotherapy in a few months. But she said she can't promise. Surgery wasn't an option. She said the expert doctors will look at results especially MRI once more this week to check they can definitely cure it. She refused to give us a stage and said things will be clearer when we go back next Tuesday. She gave us hope but made commitment which worries me. My dad was given a tablet to relax the prostate and had had no urinary problems since.

I'm pretty terrified and seeing my dad so upset and frightened has crushed me. On experience does anyone know how likely my dad will be cured with a Gleason of 8 and cancer in the lymph nodes local to the prostate?

Thanks for your time

User

Posted 24 Feb 2016 at 11:13

Hi Richard,

I was diagnosed with Gleason 9 and suspicious lymph nodes back in 2007.

Since then a combination of HT (Hormone Therapy), EBRT (External Beam Radiation Therapy) and HDR Brachytherapy (High Dose Rate Brachytherapy), has kept me going. you can see all the detail of treatment etc on my profile.

So 8 years on from a similar diagnosis to your Dad, I am as fit as ever, enjoying life, and have no plans to meet St Peter any time soon.

Dave

User

Posted 24 Feb 2016 at 12:59

Thanks Dave. That's really good to know. It looks like it's going to be hit and miss whether they can give my dad radiotherapy. Probably more likely than not they can but the nurse said there's a possibility they won't offer it. It's very scary. I'm 21 and my dad 62 and the thought of losing him at my age before he's seen the grand kids etc really hurts. I can't imagine what must be going through his mind currently. It's weird because my dad changed his diet after the suspicions of cancer began and he feels the best he has done in years. Hopefully that continues. Just got to hope for the best. The experts will do everything they can I'm sure. Glad you've had that 8-9 years and counting, I would love my dad to get that too. Good luck for the future

User

Posted 24 Feb 2016 at 17:12

Hi Richard,

A few facts might help:

Most men aged in their 60's have prostate cancer, but most don't know it.

Most men who are diagnosed with prostate cancer don't actually die of it, they live long and rewarding lives and die of something else before the prostate cancer gets them.

Giving HT (Hormone Therapy) is a pretty standard initial treatment for the higher Gleason Grades like mine and your dads. This is done as a preliminary to RT as it tends to shrink the tumour, giving the radiologist a smaller target to aim at, which helps minimise collatoral damage to surounding tisssues. It is also very common to continue HT for a year or two after RT, because the radiation doesn't actually kill the cancer cells, it just stops them reproducing, so the HT keeps them in check whist they are dying off and failing to reproduce.

If you want to get right into the technicalities of it just Google neo-adjuvant and adjuvant hormone therapy.

Dave

User

Posted 02 Mar 2016 at 15:50

Thanks for that information Dave. We went back yesterday to see the oncologist. His stage of cancer has been confirmed as T3N1M0. The lymph nodes closest to the prostate are 3cm, when they should be 1cm. The lymph node furthest away and at the top of the MRI scan was slightly enlarged which suggests a small amount of cancer. Oncologist said that's the furthest away it can go to be treated with radiotherapy. He said there's a definite chance it might of gone further and put the chance of that being the case at 20-30%, but said that's only a guess. A CT scan is now booked and that'll confirm, if it is found further away in that scan, RT won't be offered. My way of looking at it, is that there is a 70% chance it hasn't. My dad's prostate cancer is a weird & rare pattern. He had a PSA of 154 which is very big indeed and that alone suggests advanced prostate cancer, but his bone scan came back completely clear. The cancer is only in one lope of the prostate and hasn't spread to the seminal vessels, but somehow has found its way into at least the local lymph nodes. And there has been no symptoms bar that one night he couldn't pass urine.

My dad started his hormone therapy yesterday with the tablets and is booked in next Tuesday for his first hormone injection. They don't usually do the injections straight away but in this case they are. He's being put on a clinical trail to have chemotherapy for the prostate cancer. That's meant to start in 6 weeks and of the 8000+ patients who've been on this trail in England & Wales, it's increased life expectancy on average by 2 years which is great. Oncologist said patients with secondary bone cancer lived on average 5.5 years on clinical trail which is 2.5 years more than those not on it. However the side effects are pretty bad. This will be 1 dose every 3 weeks. If my dad's CT scan comes back clear and the cancer responds well to hormone and chemo, he'll start radiotherapy in 6 months. However doctor has warned us that even if cancer is only regional and it hasn't spread, there's still only a 15-20% chance my dad will ever be cured completely. Which shocked me the most yesterday. However even if my dad's cancer never gets cured, as long as it hasn't spread into distant lymph nodes, we should have him for at least 7-8years and maybe a decade or more. Which would take him into his early 70s which isn't too bad of an age really. I never want to lose him but if I have to, I want him to of had the longest life span possible and to die in your 70s is not abnormal at all even for people without cancer. Doctor said that if there's a chance they can cure it, they will do their best. My dad is pretty fit and healthy and has had no health problems up to now so the oncologist said he'll be on the most aggressive treatment plan they can give.

I am pretty devastated, shocked and bewildered. I never imagined back at Christmas that my family would be thrown into complete turmoil just days later. But we've been dealt this hand, and as the oncologist says, we've got to learn to live with it and encompass this into our normal life. I recently bought my first home with my fiancé and I am getting married in summer of 2018 and I believe my dad will be there for that and to see his grandkids which is what I am desperate for him to see.

I'll post updates.

Kind Regards

Richard

User

Posted 02 Mar 2016 at 16:16

Just to reassure you, 154 isn't that high and we have quite a few members with PSA in the hundreds and no bone mets. We also have members with bone mets and PSA of 5 or 10 - PSA doesn't always reflect what is going on inside. Anyway, you have a treatment plan and lots to keep you busy - good luck!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Mar 2016 at 16:18

Hello Richard,

I'm sorry the news wasn't better for you all but if he has the same positive attitude as you then yes, he will there for your wedding and that first grandchild.

None of likes to contemplate the loss of a loved one, especially when it comes out of the blue and with no apparent ill health to start with. It makes the seriousness all the more of a shock because there isn't any preparation for it.

Dad's PSA was high but by no means the highest we've seen on here, with those people surviving 10 years or more.

New treatments and trials are appearing all the time and who knows, there may be something further down the line that's just right for your dad, extending his life until a reasonable old age.

i hope so anyway

We can't control the winds - but we can adjust our sails

User

Posted 02 Mar 2016 at 17:12

Hi Richard,

Just a few thoughts:

The fact that your dad's lymph node/s are enlarged doesn't necessarily mean that the cancer has spread to them.

I had a similar enlargement of lymph node/s. Initially my consultant said he thought it was probablly PCa that had spread to my lymph nodes and he expected the lymph nodes to shrink while I was on HT, because HT causes PCa tumours to shrink, and it follows that the PCa in the lymph nodes would also shrink.

After 6 months on HT a second scan showed my lymph nodes were as enlarged as ever, so I had an operation PLND (Pelvic Lymph Node Disection) where the consultant removed 12 of my lymph nodes, subsequent examination revealled these were benign.

Now your dad's PSA is higher than mine was, and the fact that they are putting him on chemotherapy suggests that they think it may have spread, however I guess he will have subsequent scans and one of the things his doctors will be looking for is whether his enlarged nodes shrink.

Having said all that PLND is not for the feint hearted, if you think of the lymph system as the bodies drains, then the lymph nodes are like waste traps. When discussing it with my doctor I said that if I was to take waste traps out of my house's drainage system I would be left with a mess. He sort of poo pooed that analogy, however a few months after PLND I was sufferring from lymphoceles, which are basically big puddles of lymph fluid that form within the body where nodes are removed, getting these sorted out involved going into hospital where the doctor used the biggest horse needle I have ever seen, which he stuck into me, slowly and carefully, watching a simultaneous scan to make sure he didn't puncture my gut, and slowly drawing off the fluid. But even then I ended up back on the Urology ward with infections.

Anyway we are all different, and it looks like your Dad's doctors are pretty sure that they know what they are dealing with, but it might serve you well to bear in mind that enlarged nodes can be benign.

Dave

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