Feel as if we are in limbo!- the shortened version!

Hi CindyF , you are going through the worst stage and it will get better.  On reading your note I wasn’t sure if your OH was on the tablets when his PSA increased.  If not, and he has started having HT I would expect his PSA to be dropping.  If so, there is now no panic to do anything else, in fact no treatment will start for a few months while the HT starts to take effect.  I know the feeling that everyday I didn’t start treatment was a day lost and nobody explained that the HT needs to shrink the cancer first before any further action can be taken.

it sounds like the medics are on top of what is going on, so try not to over worry (easy for me to say), but it is what we all did at the start.  Hopefully others will be along to give great advice.  Best wishes to you both.  David

Ah thanks for your speedy reply and helpful words David, yes, both PSA tests were done without any HT.

He  has had to take tablets but when they run out that is it and he did have the injection about a fortnight ago so his PSA levels should be dropping

It is just the waiting game now, and we will get  there just wish I had a time machine but until I can source one we will just have to wait. His sedated biopsy is next Wednesday so hopefully we will get some answers after that is done.

hi firstly the psa is only a rough guide it doesn't mean the cancer is rampant in his body .

people on here have had psa scores  in there thousands , the gleason score will tell you how aggressive the cancer is .

he's started on hormone treatment so that will kick in and slow things down .

i'm 5years into my treatment and i was told my cancer was very very aggressive but i'm still here .

keep positive for him and just carry on as normal and do normal things 

don't let it change or dictate ur life 

good luck 

Ah thanks for your reply Anubis, it is just when the nuclear scan showed it is in his bones as there are 'anomalies' and we were told it was treatable but not curable, we are still being very positive, his hip pain has decreased immensely and he is out doing some walking, not up the Cheviots in Northumberland as he is used to but is hoping to build himself  back up for this towards the summer.

It is nice to hear that life does really go on after a diagnosis. It is hearing the word 'cancer' that is the curve ball no one ever wants to hear.

Hi CindyF,

As David and Anubis said your husband now started the treatment of HT so there is no panic. The HT will shrink the PC where ever it is and the PSA will start dropping. In our journey, we are almost 5 months since diagnostic and my husband taking HT and soon will start RT. I know that the worse thing is the waiting but you are waiting while the medicine is working! So as the guys said, no panic. 

I can tell you from our experience that after the first month of panic, anger and fear will settle in to normal life. My husband keep active, doing all the things he like doing and life is normal. He had some side effects of the HT but it is tolerable .

Stick with this community here, they absolutely wonderful people. We all fighting the same bast..d. People here are generous with information and you can ask any question you want, even you think is silly and someone will know the answer who wonder the same thing.

I wish you both well and update us when the second biopsy done.

Dafna

Ah thanks Dafna, it is just so nice to know we are not in this alone and that others are going through/have been through the same. 

My husband is the one who has had all the information in phone calls and when he is on the phone it is hard to take in information and ask any questions at the time.

I go to all his appointments with him but often am at work when he receives the calls otherwise I would prompt him (he loves me nagging him really)

The 'big' scare is over and we have got our heads around that and are moving forward and have booked a holiday in September, even if the insurance is more expensive than the holiday we are going.

I will let you know how he gets on with his biopsy, hopefully this time they can pinpoint where it is to get some samples.

Onwards and upwards and again, thank you all so much for your kind words today, it has really helped me and I have told my husband to get a log in to join the community too as it has made me feel so much better about it all in the few hours I have been a member.

CindyF

Hello Cindyf and a warm welcome to the forum, though sorry you have to be here, Repeat biopsies are rare but do happen if PIN cells are present, though your PSA rules that out, or if there were any abnormalities or if the core samples from your first biopsy missed the tumour, which as you have said the prostate feels normal so it will be very small so possible, Like the guys have said, it's the worst time for us all coming to terms with awful disease but we all find a way, Like your husband i have advanced PCa, 2 years now and doing well, saw oncologist/MDT yesterday treatment going better than we could have hoped for, best wishes with your treatment, take care.

Eddie

Hello CindyF - A warm welcome to the Community - I am late to the party and everyone else has stolen my thunder!

Just to say we have a great bunch here and as you can see from the replies above - we are all more than happy to help and no question is too trivial.

To help us, help you - can you fill in your profile - it will stop us asking the same questions every time we reply. if you go to your home page Click on the chair - top right - then "profile" and then "edit" it would be great - you can read mine by clicking on my avatar (but you don't need to write a novel!).

Best wishes - Brian.

Hi Cindy,

My partner is in a similar position, diagnosis 115 . He had no real sign of it with the internal examination initially because it was growing on the other side ( away from the rectum wall) so it took a while to work its way around. and be noticeable. The important thing for you now is that your husband has started hormone treatment and it will start to recede back, like others have said. You can relax a bit now. It's a very frightening time for you both, but rest assured there's excellent treatment available.  Now that you can catch your breath a bit with this it will be good to sort out and get to the biopsy mystery. My partner with his similar PSA had his entire prostate covered with cancer 80%. So it was very obvious on the scans and biopsy (every core, 20 taken had a level of cancer) yet you have nothing?? Have you seen the scans? can you phone through and ask about it's visability on the scans and can you make an appointment to see it? We weren't shown the scans initially, but we asked to see them so we could get a visual understanding of the situation. Your biopsy results are all very odd and they need to give you a better understanding of what's happening while you wait over this next month, rather than leaving you confused. Phone the nurse and have a chat as they are very helpful.

 It's good that you've found this forum as you will see there are are many people here with different levels of prostate cancer and you will find that there are many forms of treatment with curative results and if not curative, it still is a very treatable cancer resulting in many years ahead. 

Best wishes to you both and keep contact here, there's always information and reassurance.

L

Thanks Barry, 

We are going to have the sedated biopsies done next week and will ask more questions after that.

I would have thought that if his PSA was as high it would be very big and very easy to get the biopsies from but then what do I know about it all. 

There are so many lovely people on here giving fantastic advice and sharing stories is making it all a bit more bearable.

I have told Ian about all you lovely people and he is going to create a profile later on as we really have had so much information through this thread in the Community even from yesterday when I first posted the replies have been phenomenal.

Cindy x