Very Sad Daddy's Girl

Hi Daddy's Girl

As a wife of a man (79) who was diagnosed with grade 4 cancer, also spread to bones, two and a half years ago, my first advice is do not Google it!! This is the best place to get advice. My husband, even with many other health and lifestyle issues, is still with us.

You have made the right decision on joining our wonderful community here and you will get truthful, informative and sensible information from some fantastic guys who have battled, and still are, this awful cancer. It won't be long before they start replying and you will start to feel comforted by their stories. It is not a question of how long he has left, as nobody can tell you that, but from what I read daily, there are guys on here who have had prostate cancer for many years. Don't despair, and just wait till you get your replies. You will start to feel far more positive about his situation. 

Best regards

Gina

Hi Gina,

Thank you so much for your lovely message, I wasn't expecting anyone to reply, more hoping, so your message alone has already made me feel happier tonight. 

I really wish I had never googled, I was more looking for research and advice, then before I knew it I was lead into a web of being terrified.

I'm just unsure about treatments, as to be honest I didn't know anything about prostate cancer before this has hit us so unexpectedly. 

Im so glad to hear your husband is doing well, and I hope you're doing ok too, as this rollercoaster of a journey isn't an easy one for loved ones either , even though I'm just at the beginning xx

Hello and a warm welcome to the forum, I too am T4  and doing ok two years on. your dads HT treatment is working well as the big drop in his PSA shows your feelings are perfectly normal, we all have them  whether we are the patient, partner or family and are at their worst during the early stages. Things will get a little easier now treatment has started and showing good results. As Sidsmum says please don't google. Many on here have had radiotherapy with very good results. take care.

Eddie

Hi Eddie,

Thank you for your reply, my dads name is Eddie too :) 

I have read your profile and in the last few months getting through my dads diagnosis period, I have seen your replies and it has brought me much encouragement.

Im sorry to hear you are stage 4 too, im glad you are doing well and hope you continue to do so.
My dad also has cribriform architecture on his biopsy results (not too sure what that means to be honest) you're the only other person I have found a mention of it on your profile, what does it mean if you don't mind me asking? 

I am hoping radiotherapy is successful for him, I'm not sure why he hasn't been offered chemotherapy, is that common? 

sorry I hope you don't mind me asking questions.

Thanks again x 

I really totally understand how you and your lovely dad are coping. My hubby 64 years was diagnosed last year Gleason score 9 prostate cancer/spread to pelvis/lymph nodes ! he has no energy and feeling dreadful! At present he is on 3 monthly normal injection which commenced August 2023! The care has been a horrendous experience and ongoing at QA Portsmouth hospital. His radiotherapy will commence in April for 7.5 weeks Monday to Friday we have had to cancel x2 holidays (as consultants told us to) then was informed last week by a nurse that we could of gone to the first one 22/03 well organised our plans! 
im not a well person either (auto immune disease) but as a strong woman/nurse, i carry on battling my demons x last year my dad got really poorly and died in December. I don’t know where I get my strength from, I do feel I need support but GP just wants to prescribe antidepressants (I’m not taking them! ) I am an active woman of 56 and I don’t stop. I wish I could change the way I feel, howver I do look after my mental wellbeing but feel so exhausted all the time! Some days are so hard !! I just break down x I live by the sea and have a French bulldog that gives me happiness and I’m always here to support others because I am a very caring nurse, but I think life can be a rollercoaster and it’s part of getting older x

Good Morning DaddysGirl9009  A warm welcome to the online Prostate Community. You are in the right place for help and advice.

So from your post Dad's on hormone therapy - this will be great at stopping the spread of the cancer - hence the PSA being reduced from 282 to 12.8 and it will still be on it's way down - a great start. Do you know what his team have in store as a treatment plan apart from the Radiotherapy?

Words of advice for both of you - keep dad as fit as possible because the Hormone Therapy and Radiotherapy have both side effects and cause fatigue. And try to stay away from "Dr Google". If you do research use this site and Prostate Cancer UK Below is a link to a cracking publication from Prostate Cancer UK - There are plenty more where that came from

https://shop.prostatecanceruk.org/our-publications/all-publications/advanced-prostate-cancer

Ask anything you want - you will get answers and feel free to join in any conversations, it's OUR Community and YOU are a member.

Best wishes - Brian.

Hi DaddysGirl.

A warm welcome from another wife here whose husband was diagnosed 3.5 years ago with T4, Gleason 9 prostate cancer spread to an area behind the pancreas and distant lymph nodes. He was started on Bicalutamide and Prostap which rapidly reduces the PSA and starts to shrink the mass and the lymph nodes, so the answer to your question about the drop in your dad's PSA  is yes, it is good and he is showing a good response. He then had 33 sessions of radiotherapy to the whole pelvic area which has put everything to bed there since 2020. Your dad has been put on Aptalutamide and Zoladex which is one of the combinations of drugs which is proving effective at keeping the cancer in hibernation, the aim of the radiotherapy and possibly chemotherapy later on is to kill it. The order and timing of treatment is very much down to the recommendation of the medical team. My husband had chemotherapy last year which aimed to hit the area behind the pancreas which was showing resistance to hormone therapy, as shown on MRI and PSMA PET scans, but normally a rise in PSA from the nadir ( lowest point) is the first indication that things need investigation again. You say your dad has cribriform characteristics. The best explanation I have ever seen is from Alpine Wanderer who I expect will come along and let you know about it, but basically it is a basket weave type structure of the cancer cells and the more open they are then the more likely the cancer cells are to escape to other areas.

My husband is still doing well, the journey is a bit of a rollercoaster but we still have a good quality of life, albeit different from what we had originally anticipated. A positive attitude from all the family is essential, as is keeping as fit as possible.

Please don't read Dr Google. It is better to hear things from those who are also walking this rocky road. Please come back with any questions and we will all try and help.

Hi Blue67 

Thanks for the message, I'm sorry to hear about your struggles it sounds like you've had and are still having a really difficult time, I feel for you as I feel the same, keeping busy is key and dogs are such a blessing, I have a little staffie (Ron) and he keeps me busy and gives me great cuddles. 
I also own a nightclub so that keeps me extra busy and up all night! 
I do hope you manage to get on holidays soon if you ever need a chat send me an inbox xx 

Hi Alwayshope 

Thank you so much for your message, it has made me feel so much better today, thank you for all the info ive been so worried as to why there has been no mention of chemotherapy. He has an appointment weds next week with the consultant, they have said it's just to discuss radiotherapy plans. He wasn't offered treatment options they just told him what to take and he done it which worried me, but hopefully it's what's best for his situation. 
They also didn't mention the cribriform, I just read it on the biopsy report and that was worrying me too as I can't find much about it. 
I guess with your great explanation that's probably why it has spread to distant lymph nodes.
I'm glad your husband is still doing well and that you are having a good quality of life as that's what matters most. 
I hope your journey continues to be positive as can be for you and your husband, you sound like a great supportive knowledgeable wife! 

Thanks so much again x

Hi Daddysgirl

You asked about cribriform -  This will be there after they have looked at the cell structure under the microscope in histology. As you go up the Gleason scale, the structure “opens out” and the cells are more loosely linked together. They usually only use the term for Gleason grade 4, as grade 5 is open structure anyway.  This means that little bits are more likely to break off and travel to other sites (initially in the pelvis, and most likely to a lymph node or to the bones:  “cribriform” is an open, sieve like structure, rather like a child’s crib or crib blanket (derived from Latin).  It is a scary term - but it is merely there to help decide what treatment is best: definitely a steer towards radiotherapy as a surgeon would be worried about achieving clear margins when the prostate gland is removed.  So, don’t worry - the radiotherapy profile will cover everything and a dead cancer is dead whether it was cribriform or not!  Hope this helps alleviate your worries.  Read this to your Dad, who sounds like a diamond geezer.  AW