Newly diagnosed

Hello Beverlilly - Welcome to the forum

From memory "cribiform pattern" is an aggressive type of PC and I am sure we have at least two members of this forum with the same diagnosis. If I remember correctly it's treated with HT/RT but with higher doses of each - I may well be wrong (I am only a PC suffer myself and not medically qualified!).

I think if I were you I would e-mail the consultant - advise him/her of your anxiety on reading the letter and ask what action and when they propose for your husband.

I hope this helps - I am sure someone in the same situation will pop along soon with an update on the advice.

Best wishes

Brian.

Thank you for your prompt reply Brian

we are very confused to say the least as the consultant was keen for my husband to have surgery bone scan results dependant. Although she did say if bone scan came back positive then he would go straight to chemo.

I can’t for the life of me understand why she didn’t tell us about the cribiform pattern then unless she was trying to spare us more heartache 

I will email her as you suggest 

Thank you

Beverley

Thanks Beverley

I hope all goes well.. Let me know how you get on - it's a long journey and you will find support here - we are a friendly bunch.

Best wishes - Brian.

Thanks Brian

will definitely be popping up here more often for support and advice which is invaluable. I’m so glad I’m part of this forum and I’ll be charting Daves progress.

it’s no doubt a long journey as you say and I still don’t think we have our heads round it. This has been going on since May 1st when we were first told of his high PSA. Everything moves quite slowly and the tensions rise each day. It’s like being on a rollercoaster of emotions.

Dave is coping better than I am at this point. I just keep crying which is no good for Dave to see. I try to be strong for him but it all gets very overwhelming at times.

Dave had a heart attack 18 months ago and got over that. Three stents fitted in his arteries, we then retired last November and moved to a beautiful little village to enjoy life. Now this rears it’s ugly head and he’s only 62.

we are feeling shellshocked

Regards

Beverley

Hi Beverlily

I'm sorry to hear of your husband's diagnosis. The initial shock of the diagnosis was the worst part for me. I have been through a similar journey and am having surgery next week. I'm the same age and am Gleeson 4+3 T2c. I have done the same as you, read all sorts of stuff on the internet, frightened myself, read more and realised it wasn't as bad as I'd thought. Once I got past all the tests it got a lot easier as I now feel there is a plan in place. Remember that PC is very survivable and most people who get it have an excellent chance of a "cure".

I have no medical expertise but would say that G3+4 is 'good' in the sense that most of the cancer found is of a low grade (3) although a smaller amount is at a higher grade(4). T2 means it is contained within the prostate so can be completely removed provided it hasn't spread elsewhere. When I was sent for the bone scan I was told it was a formality and they "didn't expect to find anything", which they didn't. 

If you're worried about specific terms by all means ask you consultant. I have also found it very helpful talking to Macmillan's helpline. They know a huge amount about the subject and may be able to put your mind at ease about some of the technical terms.

I will be keeping my fingers crossed for you both while you have the follow up tests.

All the best

Cliff

Hello Beverley, I’m sorry to hear of your husband’s diagnosis and can fully recognise your emotional responses. My husband was diagnosed in Autumn 2022 and when we were told it very bluntly and over the phone I felt as if I had been thumped in the stomach! I then had 6 months of tears, sleepless nights, high anxiety - the lot. I was so frightened but I was also very angry! I look back and think I was actually going through some sort of grieving process.

Now, radiotherapy is behind us, hormone therapy continues, we are obsessed with PSA levels but scared silly about receiving bad results! But ( and it’s a big but) we have learned to live with this to some degree. It’s always there .- a shadow lurking in the corner, but it is not controlling our every thought and action and we just get on with life! My tears have mostly stopped and we have entered a calmer state of ‘being’. 

you, too, will get there! The diagnostic pathway is tortuous and slow - like wading through treacle! I have had so much from some fantastic people in this forum. I know you will too!!

I have always said that prostate cancer is a ‘couples illness’. It affects and hurts us wives a lot’

so, let the tears roll ! You have one advantage over me! When we were going to all the hospital appointments we were having to wear masks - not very practical for mopping tears and blowing your nose! They will stop in due course:)  I can now actually get through a consultation without them!

love and best wishes to you both

Hi Cliff and thank you so much for your reassurance. 
Although my husband’s diagnosis was a big shock, after our talk with the consultant we felt that there was much hope as she told us that his Gleason score was 7 3+4 and she told us that Dave was a good candidate for surgery as he is fit and relatively young. However she did say if bone mets are found he will go straight to chemo. I did wonder why that was at the time although what with everything going on I didn’t ask

Then two days later when the report letter arrived( the one that goes to the gp and we get a copy) she mentions this cribiform pattern that she had never mentioned to us. Now I’m panicking as this pattern suggests a more aggressive cancer according to Dr.Google and negates all Gleason scores.

Surely if this is the case she would have mentioned it.

All she kept saying was ‘he’ll be alright’

We have left a message for our specialist nurse in charge of our case and still await a reply

Best Regards

Beverley.

Hi Worriedwife

Thank you so much for your wise words and your description of your emotions mirror mine exactly.

I too feel like I’m grieving for something that hasn’t happened yet. I feel ‘why us’ but that’s such a negative emotion isn’t it? So why not us.. it has to be someone!!

But for the last 18months we have gone through so much.Firstly Daves heart attack, which he recovered well from. Then he retired and we moved to the country to a lovely bungalow with an idyllic view. Something he’s worked his whole life for. Then 6 months after we moved we are hit with his cancer diagnosis. So we are feeling like we have been robbed of the last part of our lives.A time for ourselves when children are grown and settled and life becomes easier.. nice things to look forward to like holidays and seeing friends etc.

Dave wasn’t feeling ill… he was loosing a bit of weight and I didn’t like the thought of what that may mean. So I sent him to the Dr and thank god they ran blood tests including his PSA. It was 14.1 and so our journey began.

The Dr said Daves weight loss was not due to the PC and he put it down to the sheer volume of physical activity Dave had been doing during our move. We have extensive gardens now and he was out there all the time doing heavy work 

So it’s been a tough time and we feel very depleted even though this is just the start of what may be a very long process

Sorry for the rant

Beverley

Hello Beverlily.

I must admit that I do not know much about cribriform PCa apart to say that it denotes the mode in which the cancer cells are growing and that there are several different types. It is a generic term used in several types of cancer. It is classified as aggressive and like many forms of aggressive cancers they have not yet understood what causes it to grow in that way. That does not mean that it is not treatable and with your husbands Gleason score possibly curable. The term aggressive means that the cancer has a greater potential to metastasize but it does not mean that it will. This means that your husband's oncologist will probably recommend a more comprehensive treatment plan compared to someone who does not have an aggressive form of PCa, and he should be monitored more closely and for longer. The waiting is the most difficult until you get the treatment plan, then you will feel you are on a rollercoaster during the actual initial treatment that you decide on.

You are at the start of this journey and naturally petrified of what you are facing. Life as you have known it will be put on hold for a while as your husband gets through his treatment but take heart that you will find the strength to get through it together.

The rant is natural as you are in fight mode. We have all been there and it is good to vent.

My husband has a rare aggressive cancer but was diagnosed at a later stage. We have been through radiotherapy, HT for life and now chemotherapy but we are still fighting and enjoying life. You will find the people on this forum will give you more help than trying to Google for it and are more knowledgeable than the information you will get from a fact sheet. 

Everyone is here for you. Try and find something to treat yourselves like going out for the day. It will act as a tonic.

Hello Beverlily

it takes time to get all the facts and figures and it takes time to get our heads around the diagnosis. What I found really hard was that my husband just shut down. I needed to talk it all out and he needed to keep it deep within himself! That’s why I started using this forum. I had never felt so lonely in all my life. Many good people posting here helped me through those dreadful months.

my husbands radiotherapy finished in March and at the end of May we did a river cruise in Germany. We found ourselves in the company of complete strangers and I cried my way through the holiday! But…. They were tears of laughter! I have never laughed so much in my life ! It was our turning point! Life could really be enjoyed again.

just hang on in there. Gradually the tears will stop ( or even become tears of laughter?) and your fears and anger will subside to a more manageable level. 

let us know how things go and no need to apologise for ‘the rant’ ( which I did not read as a rant at all but words from someone going through what a lot of us wives go through!)

xxx