Dad recently diagnosed - Gleason 8 (3+5) - advice needed

[Mrs_Atko]

Hello - my name is Jemima and I'm already an active member of Ovacome having been on my own Ovarian cancer journey last year (I'm 34 & thankfully currently NED). I also lost my darling Mum to primary metastatic liver cancer 4 years ago - her diagnosis also coming out of the blue and culminating her in her losing her battle 7 months later - so this evil beast has been working it's way steadily through the lives of those that matter the most to me.

Yesterday, after PSA checks of 30 & 26 respectively and biopsies taken 2 weeks ago, we were given the news that my otherwise very fit and healthy Dad of 78 (just turned...but easily passes as a man in his early 60's) did, indeed have an aggressive form of PC with a Gleason of 8 (3+5). The next steps are CT & bone scans to check for spread to lymph nodes and/or bones. Once we have those results, a treatment plan will be devised. He has already been started on hormone therapy. We've been told this is likely to be radiotherapy (no chemo was mentioned) & despite my Dad being super fit and healthy, they won't operate due to his age. My Dad lives over 3hrs from me with my sister so this time, I don't feel at all in control of things, whereas with my Mum, I was with her from start to finish as her main carer.

I guess I'm just wondering what we can expect, from the best to worst case scenario? I seem to have educated myself beyond a normal layman for liver and ovarian cancer but know little to nothing about PC other than what I've gleaned online in the last few days. I have also asked my sister to see if we can have a copy of his biopsy report as I am definitely a person that does better with detail and knowledge. Many people are telling me it isn't the death sentence it used to be and that most men die WITH PC and not FROM it but surely that is the case if it's caught early? What if it HAS spread?

As you can imagine, we're all feeling a little overwhelmed trying to come to terms with this latest blow from this bas*ard disease, so I thank you in advance for any advice you can offer me.

Wishing you all well in your own journeys,

Jemima xx

[AlanMeyer Moderator]

I'm sorry to hear of your Dad's diagnosis.

There is a chance, I don't know how big but it may be 50/50, that all of the cancer is in or very close to the prostate and can be destroyed with the radiation treatment. If that is the case, then your Dad may go through the one series of radiation treatments and come out cancer free.

If there is some cancer that has escaped the prostate, it is possible that it has not yet established clear metastases and will be slowly destroyed by the hormone therapy.

If none of that works and your Dad still has cancer after the initial treatment, then there is currently no known cure, but there is a decent chance that hormone therapy and other treatments will hold the cancer in check for years and he will not die of prostate cancer. Long term hormone therapy can be burdensome. Some men have a bad time with it but others don't. A lot depends on the individual and what he does. HT will sap energy, so regular exercise is important to maintaining it. Some men have gotten everything they need in the way of exercise by walking several miles a day. It doesn't require weight lifting and pushups, but it does require an active life - which it sounds like your Dad will do.

It is important to get the best medical care available. In the U.S., that's often found at the teaching and research hospitals, where the staff do research as well as treatment and stay up to date on the latest research findings.

Best of luck to all of you.

Alan

[Mrs_Atko in reply to AlanMeyer]

Thank you for your kind response Alan, I really do appreciate it. Dad is having a CT and bone scan tomorrow so i guess we'll await the outcome of those before finding out what we're dealing with. He seems ok in himself, no real symptoms (other than problems urinating, which started all this in the first place). He is having hormone injections once every 3 weeks. We are all trying to remain as positive as we can. Although Dad has just turned 78, he is no ordinary 78 year old man. He is incredibly fit and healthy, active every day, doesn't drink, doesn't smoke, isn't overweight and has a good diet. So we are really positive he is in as good a position he can be to fight this thing. His care is based at the Addenbrooke's hospital in Cambridge (UK) which, from doing a bit reading, seems to be a leading Prostate Cancer centre, so I am pleased he is in good hands.

Thank you again for your comments and advice.

Jemima x

[Scruffybut1]

Alan's reply is very well judged and I can only add what has been happening to me. I was Dxd in Oct 2014 with a PSA of 167 which rose to 200 for Jan 2015. My biopsy (12 cores, 4 each from each of the 3 areas) showed high density cancer in each of the cores with the largest tumour being 14mm. Like your father I was sent for Nuclear bone scans and separately for MRI for soft tissue particularly the prostate. These showed I had advanced metastatic PCa with some 40 bone sites hips, spine, ribs, chest, both scapulae. I was too covered in mets huh to have radiotherapy, it would have killed me. I was put on ADT, I didn't fancy Orchidectomy, it seemed too final. I often have 2nd and 3rd thoughts about that.

Now for some good news. After Chemo concurrent with ADT I am now at PSA 0.04. Am on Abiraterone tablets. Yes I get occasional dark moments from the ADT but lead a normal life excluding my sex life. I consider myself pretty fit now 71, walk miles daily with my young dog (he can run @50 mph) and do not look unwell. And I have yet to feel unwell.

You have helped your mum through dark days and have yourself a particularly nasty ca in ovarian. You are obviously a very strong person and from a long way away I am an admirer. Whatever full diagnosis your dad gets it is important to share it with you and your sister. I even shared mine with my neighbours, mostly female. They have been a big help and we blokes are meant to be shy about sharing, thank God I was able to open up at the beginning. On this Forum there are so many wives, mothers and daughters dedicated to helping their husband, son, father, brother that I draw inspiration from them.

Before I go although I was Dxd Oct 2014 my Oncologist told me I had most likely been growing the PCa bastard for up to 3 years without symptoms.

I doubt your dad's has metastases in the bone. Radio is highly targeted and most probably the ca is limited to the gland itself. I will pray for you all as you live with this nasty. I chose to live with it and not fight it. I let my Onco and her treatments use my body as the battleground and I keep my body and brain as cheerful and fit as I can.

[Mrs_Atko in reply to Scruffybut1]

Thanks for your response Scruffy although I'm sorry to read of your diagnosis although I'm encouraged to read your treatment so far seems to have been positive (minus some of the side effects) and I hope it continues that way for a long while yet. It's great that you feel fit and well in the main. Best wishes to you x

[Scruffybut1 in reply to Mrs_Atko]

Thank you, had my update yesterday and all still very well. PSA back to 0.03. Oncologist and I danced. Who would have thought anyone could laugh and smile through such a serious illness but we all do, we brothers and sisters.

David (scruffy was my dog for 15 years!)

[Mrs_Atko in reply to Scruffybut1]

Fantastic news David! You definitely need to make the most of these wins along the way! Long may it last!!

[Roger2Dodger]

I just finished 43 treatments of EBRT. My cancer was considered intermediate, 4+3 =7 . I had genetic testing done and cancer was found to be non aggressive. I had the option, considering my age 76 to go on AS (active surveillance) I chose To take the radiation, no hormone therapy was required,

if I had know what I know now , I would have never taken the radiation, and stayed on AS The radiation has side effects that will never go away. I could have survived with out the radiation, but my case is not for every one. Each individual is different. My point is, I would have been better off in many aspects ,if I would have not done the Radiation.

[Mrs_Atko in reply to Roger2Dodger]

Thank you for your response Roger, I really appreciate it. I'm sorry to hear of your diagnosis although i'm glad to read your's is considered non aggressive. The more I read (as in all cancer cases it seems) everyone is very much on a different journey, and different treatments work well in different situations. I'm sorry to read you feel you'd rather not had radiotherapy, do you mind me asking why you feel that way? With my father due to have a CT and bone scan tomorrow, i'm gathering as much information together as i can so when we know exactly what we're dealing with and what possible treatments might be suitable, we can make an informed decision as a family. My best wishes to you x

[Roger2Dodger in reply to Mrs_Atko]

Mrs Arko,

As I indicated in my reply to you. The genetic testing came back with my PCA in the non aggressive range. The report also gave a 10 year mortality rate. which indicated There was only a 3% chance of me dieing in 10 years with PCa. I was 76, and that is pretty good odds.

But, I elected to go ahead with the radiation. I do not like the side effects the radiation left with me. Fatique, both urinary and bowel problems , and ED. Which I did not have before the radiation. My quality of life would have been better to stay on AS..

Going through 46 rad treatments were no picnic either. So, I just think living with cancer was the best choice for me.

[Mrs_Atko in reply to Roger2Dodger]

Thank you for the clarification Roger...it is a similar set of circumstances I've read of other people's experiences and one that will help us to ensure that whatever course of action my Dad takes, he does so fully informed of the pros and cons.

[aquaeyes5]

Best of luck on your father! It sounds as if you are doing all the right things. We are some of the few woman on this sight. My husband and your father. I read that you are a survivor of Ovarian cancer, and your father has prostate cancer. Both of these cancer's are linked to the BRCA gene. My husband is (diagnosed with prostate CA, at age 47) was BRCA positive. I do not know if you had any genetic testing done....but if you have siblings, and or children....it would be a good idea to investigate genetic testing. If for no other reason, to be sure they have testing done, outside of the recommended screening guidelines. My husband still has not reached the age for PSA screening...which is 50. His doctor's estimate his cancer had been growing for at least 10 years....and he never knew it, until he became so symptomatic, he finally had it checked. If we had found this beast sooner...his outcome would have been much different. He had no choice but to submit to prostate removal, and radiation/hormone therapy, and we are still not out of woods. He was left impotent, and incontinent. This has affected him miserably. He is not same person mentally. All of this could have been avoided, had we only known. If you have direct family members, please insist on the testing, and insist they get screened early and often. My best to you and to your family.