High PSA of 344 after complaining of bad shoulder

Hello julesnew59

Welcome to the club you didn't want to join. I am so sorry  to read  your post and can fully understand your worry. We are a good bunch and there will be plenty of us around to answer any questions you may have. I will just stick a few points on here.

* 344 - it's a high PSA and yes the cancer has left the Prostate and gone "walkabout" but it's not always a terminal diagnosis - we have community members on here with PSA's over 1000 and they are doing well.

* Prostate Cancer is a "joint journey" as you have found out and he will need your support - just be there for him and try to carry on with life as normal - as much as you can - do things to take your mind off the cancer.

* As he's been started on Hormones already this should kill off the cancer and stop any further spread. Prostate cancer lives on testosterone, The HT is quick to reduce this and as the cancer has no food it can't grow, There are side effects to HT but we don't all get all of them.

* At your meeting with the oncologist you will be given his results and a treatment plan. You need to start preparing a list of questions to ask. There are plenty of treatments available to him including something called "Triplet Therapy" (don't forget none of us on here are medically trained!) but this is newish - and some Community members have started on it.

I hope the above is a start - more advice will follow I am sure.

Some members of the Community have charted their cancer journey - you can read mine by clicking on the icon of the beach - although I am only on the HT/RT route it might help you to understand a little of the HT side effects.

Again I am so sorry to find you here. We as a community will do anything we can for you and don't be afraid to ask questions - however trivial they may be.

Best wishes - Brian.

Brian

Thank you so much I will definitely look around at peoples journey as I will gain knowledge and start to understand everything from the cancer and the persons needs and feelings. My husband as all men is a very proud one and not great at sharing but I am going to try and slowly persuade him to get his own log in for this site or use mine just might take a little time to get him here. I am very open and practical hence me being here first. He does depend on me to do, find and deal with stuff! I will do a little research the triplet therapy so I am armed with knowledge prior to our appt. Hopefully we find out the TNM although they pretty much  told us its T4 as mention in his docs letters but we do not know N and M and Gleeson level yet.

When they mention terminal your thoughts immediately go to in the year but I am going to be positive and say in the years to come until we have something more definitive.  

Thanks you so much for your warm welcome and encouragement to my joining the group. 

Many thanks Julie

Hello Julesnew59.

I am one of the ladies on this forum and hope I can help from this side of the equation. Brian has stolen my thunder this time and I would like to throw in a couple more things. You state that you have been given a terminal diagnosis. Are you sure he said terminal and not non curable as there is a big difference to the way his treatment path will take. At the moment you probably feel devastated, frightened and afraid of losing your husband. Understanding some of the terminology and learning more about PCa will give you better control over your situation. Please don't use Dr Google, instead ask as many questions here and those who have done that and worn the teashirt will guide you to the best place to get information. My husband was initially given 6 months to live and here we are 3 years down the line and still enjoying life. Yes it has been difficult but with all the treatments around and new ones coming on stream there is hope. Have a look at our story and hopefully it will put your husband's diagnosis a little more into perspective.

Best wishes to you both and please ask any questions you like.

Hi Julie

You are not alone - on one of the other threads earlier in the week we were talking about the male/female split in the Community and its something like 30/70. Us blokes are the "hunter / gatherer" and don't want to be bothered with trivialities like cancer!!

You will probably get his grades at the MDT meeting - I am Gleason 9 (5+4) T3a N0M0 with initial PSA of 182 so I am in a lucky boy to be where I am now.  I do what I do now because when I was where you are now I was "blind" - just no information, and it's the people of the Community who have (along with Mrs Millibob)  got me through everything. There will be dark days - tears - for both of you as he's on HT (I can cry for England) but a positive attitude and support from you will see him get to grips wit this. 

Keep posting, ask what you want - we are here for you.

Best wishes - Brian.

I won't add to what's already been said  other than to say welcome to the strong wives club. 

While you are supporting/caring for your man try to take some time out for yourself, even if it's just for a coffee and a chat or some retail therapy.

Hello Jules, I still remember those first weeks and months - the shock, the fear, the despair, the waking up in the middle of the night and the words ’prostate cancer’ screaming around in my head, the tears! It’s a horrible time that you are both going through. So, I’ll try to tell you what worked for me!

first of all - don’t forget to breathe! Prostate cancer is treatable even if not curable. There is a powerful armoury of drugs out there to keep on top of it! The hormone therapy, as Brian has said, will stop the progression for a time. Prostate cancer can and does, in time, learn how to escape the control of first line hormone therapy but they now have other drugs they fall back on if this happens. I remember the prostate cancer nurse handing my husband his first prescription and saying to us, ‘the moment you take the first one the cancer stops growing right there’. I’m not sure whether or not it does but they were just the words we needed to hear.

second, I did a lot of research - starting with www.prostatecanceruk.org   Prostate cancer uk have produced lots of very well written and easy to understand booklets. They are excellent and help you to get your head around things like diagnostics, treatments, stages etc. I limited my research after a bit to only reputable resources - government or NHS sites, academic papers etc.

The diagnosis took hold of us and became central to everything. Perhaps this is natural? But, looking back, I think we should have tried not to have let this happen! We should, if we could have, carried on with Life - enjoying outings, treats etc. 

share your news with important family members and friends if possible. Some will back away but others will be there as valuable support. Backing away will be puzzling at best and downright hurtful at most but try to understand that some people just don’t have the capacity or ability or time to deal with a cancer diagnosis.

turn also to where you can talk and talk freely with people who know what you are going through -  here on this forum, a prostate cancer support group . We go to a local support group . The first time we went I cried when I met 2 other wives going through the early stages. That set them off and there we rood -3 weeping women in the middle of the room with our menfolk not knowing what to do and say! But, that was a turning point - I was with people who understood! A trouble shared is a trouble halved rang really true that evening.

Be politely assertive in all your dealings with the NHS. Push for timely appointments even saying you are prepared to take late cancellation appointments! Go to consultations with your husband with a list of the questions you want to ask. Don’t be frightened to question decisions etc

reassure your husband that you are there for him no matter what ( so long as you are, of course) this is one of the most difficult journeys of our lives and I have despaired to see the side effects of the hormone therapy . The promise ‘in sickness and in health’ is a mantra that I really had to follow!

finally, if your husband has close male family members ( adult sons, brothers over 40 etc) warn them that they are at extra risk of getting prostate cancer and should get tested. There can be a family pattern in this disease.

I’ve just realised that this sounds like a ‘wives’ instruction book’. It really is not meant to be! It’s just that, exactly one year from diagnosis these are things I wish I had known a year ago!

I do wish you and your husband all the very best. This is a seismic change in all your previously known certainties but please rest assured, it’s not the end of the world and there are lots and lots of positives to come out of this experience. As one poster on here wrote - the shiny new ‘boys toys’ are arriving at the door! We’ve had a wonderful holiday, a shiny new car, a closeness in ways I know we wouldn’t have had without this diagnosis, wonderful family days etc etc

sending you hugs x

I think you should write a worried wives book. I have gained so much strength and encouragement from your wise words

Hi Alwayshope

I am so pleased for you and your husband what an inspiration hearing this. They said it was T4 and terminal we had the CT and MRI and just had the biopsy last week so waiting to hear next appt with oncologist get more info as not had the TNM only the T and no gleeson grade so hopefully get that at the appt.

Julie 

Hi Julie.

My husband is T4 with distant metastasis behind the pancreas and in the lymph nodes, Gleason 4+5/9 and grade group 5. Your first thought is how long have we got together and what will I do when he has gone. We have coped with a positive attitude and wacky sense of humour. Take each day as it  comes and make the most of it. The medical team are there to keep your husband as comfortable and pain free as possible and if the first treatment doesn't work or is difficult to cope with just keep asking for modifications or changes. Quality of Life is the overriding principal of cancer treatment. If you look at the thread I posted yesterday Having a good day - Positive grade group 5 it will give you a flavour of some of the people on this forum but also the miracles that can happen. Unfortunately the chemo side effects have kicked in earlier than expected so today is not so good. You learn to roll with the punches.

Aawwww! Thank you. But…..I could also say, ‘ditto’!!?