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Hello -Husband recently diagnosed

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User

Posted 31 Jan 2015 at 07:00

Hello - I joined the site in September last year as my husband was having tests which were diagnosed as Advanced prostate cancer. Since then he has started on hormone therapy. His psa test result was 241 and a Gleeson score of 10. He is due to have a review next week after having three injections.

Realising he had cancer came as a tremendous shock to us as he had not shown previous signs of illness so we are slowly working our way through the physical and emotional changes to our lives.

We are at the point where we need to ask questions but don't really know where to start. We have the 'tool kit' which is very helpful but I feel really helpless and unsupported. We tried to speak to our GP but she doesn't seem as if she wants to get involved which I find really strange and wonder if this is the norm and perhaps we are expected to contact the hospital when we have problems.

I have read some of the posts which have really helped and I hope someone here will be able to steer us through the minefield as we both definitely need a confidence boost just now.

Thank you.

Polly

User

Posted 31 Jan 2015 at 09:24

Morning Polly

one thing for sure you are not alone on here.

There are many men and their OH'S on this forum who are or have been in a similar situation and are living good quality lives and have been doing so for some years since dx.

Has your husband had a PSA test since he started his treatment. What HT is he on

That info may be useful so others can offer advice and words of wisdom

Keep us updated

Bri

User

Posted 31 Jan 2015 at 09:39

Hi Polly,

I just wanted to say a belated welcome to the sight and I'm pleased you have decided to post. There are many better qualified to answer your questions here but I wanted to say that the support you find here will really help at this dreadful time.

I know how you feel, I felt exactly the same in the summer, in spite of a close loving family I felt totally alone in my despair, needing to ask questions but not knowing who would have the time to answer. Joining and posting on this sight was the the best decision I ever made. It has become a vital part of my treatment.

Well, I do hope everything goes well with your husband's treatment and remember, we're all here for you.

Steve

User

Posted 31 Jan 2015 at 09:41

Hi Polly

Welcome to the forum. You will find most GPs don't get too involved once the initial referral is made as most are a" Jack of all trades and a master of none" as my GP once said. Do you have a contact nurse at the hospital your OH is receiving treatment at, as they should be able to either answer your questions or find out the answers you require.there are people you can speak to at PCUK if you phone the number on the home page.

There are many knowledgable people on this forum that will do their best to answer your questions or lend a ear, so ask away. It would be helpful if you could tell us as much as you know regarding your OH staging, ie T?N?M?, which hormones are being used, latest PSA etc and treatment plan the consultant is recommending.

All the best

Roy

User

Posted 31 Jan 2015 at 09:56

I do know how you feel, Polly. My husband Tony (66) was diagnosed in September with advanced Pca that had spread to the bones. His PSA was over 2000, Gleason 9. He is having hormone injections (decapeptyl) and also opted for an early course of chemotherapy, a somewhat experimental treatment for this stage in the cancer, which is going well so far.

Like you, we were in total shock for a couple of months, as Tony seemed fit and healthy and had no symptoms until the bone pains started. We too found our problems made worse by bad admin and poor communication from the hospital, but we made our concerns known and things are going better now. The GP hasn't been much involved - it's better to discuss things with the hospital consultant and/ or nurse. The consultant will know more but the nurses are often better at finding out things and communicating.

Some things you haven't mentioned - you may or may not know the answers but they are things you could discuss at his next review. Has the cancer spread elsewhere, e.g. the bones? It sounds likely that it has, but have they done a bone scan? Is any further treatment planned? How often are they checking his PSA?

I'm sure others on this forum will have more to add, but for the next consultation, I hope you'll be able to accompany your husband. Take a notebook and pen, as it's hard to remember all they say. Don't be afraid to ask them to repeat or explain things to you. I think uncertainty can be the hardest thing to cope iwth, and once you have more answers, you will feel better able to cope.

There will be lots of support and advice here for you.
Best wishes,
Marje

User

Posted 31 Jan 2015 at 12:11

Hi Polly,

Am also adding my bit to welcome you and offer support. With a Gleason 10 and advanced there are studies which suggest it's best to hit the cancer hard asap if your partner is in good health otherwise ? For instance having chemo with HT early on has, in a recent bit of research been found to be a good option There will be other posts about this, the CHAARTED study. Has your husband been offered any clinical trials, worth asking your oncologist. Important to feel your team are on your side and doing as much as they can for you and your husband. Also, to have people who are pro-active in your husbands case and treat him and his diagnosis as individually as possible.

One of the problems with PCa is that it is such an unpredictable disease, someone else's response to treatment will not be the same for you so it's impossible to make any predictions. Don't hold back with questions, I got the feeling with Neil and I that if I hadnt been awkward and asked and in some cases suggested treatment options, we might not have been told !

There are men with advanced disease on the site who have survived many years, my partner was not one of those but I think our case was in the minority. I found the specialist nurses on the PCUK site very supportive to me, also, the Macmillan phone line was excellent. It would have helped us if Neil had been referred to a palliative care team asap, they were fantastic and the only ones who really knew what it was like for all the relationship and emotional sides of the illness. I wish you and your husband all the best, please keep us all informed, people here are so willing to help and support you,

Fiona. x

User

Posted 31 Jan 2015 at 12:44

Belated greetings from me too Polly.

You've come to the right place.

I can't offer much help re: your other half's cancer but just wanted to say this is the site to be for help, reassurance or a virtual shoulder to lean on if you are really down.

All the best

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 Jan 2015 at 17:09

Hi Polly,
After I was referred to the hospital by my GP the only contact I had was with the oncologist and her team. Who wre first class. I started on hormone therapy, then had radiotherapy. Have a look at my profile, I hope this will encourage you in what can be done for your husband.
Best wishes,
Arthur

User

Posted 31 Jan 2015 at 20:36

Hello Polly,

I don't know which part of the country you're living in but it could give you and your husband some peace of mind asking for a second opinion, and at a different hospital (Royal Marsden, Guys, Addenbrookes to name but a few).

Flexi

User

Posted 31 Jan 2015 at 21:50

Ho Polly, I am similar, Gleson 9, T4 m1 N 1a, diagnosed 10/14 but a bit younger at 49. First consultation very much like your OH, written off in 10 mins however different consultant a week later had me on HT , Biclutamide and chemo to be followed by RT. My Psa was 342 but now 3, chemo started 3 weeks ago and is ok so very much like a suggestion above hit hard and fast. Please get that second opinion or at the very least ask the consultant why no chemo of alternative. Make sure you let them see you write down what they are saying as they get nervous about being quoted in the future so put them on the spot. I have gone to every meeting with 10+ questions and the quack knows now that a fob off response won't do!!. Don't give up asking. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 31 Jan 2015 at 23:34

Hi Polly

The good news is that it has not spread to the bones. The spread to the nodes and a high PSA will lead the Oncologist along the path of control and not cure, but to rule out any other treatment is worrying for you unless your OH has other conditions which prevent him undergoing chemo, RT etc.

There are many men on here that have high PSA and spread to both nodes and bone who are undergoing treatment and doing ok so don't lose hope. You may find that your particular hospital is following its interpretation of the guidelines and financial restrictions so if you are not happy, look for a second opinion at another hospital, I don't know which part of the country you are from but if you are prepared to travel then I am sure the people on here can maybe tell you if a particular hospital is worth trying.

Kev suggested taking notes, this is a good idea so you can also refer back to them later as it is not always easy to remember what is said at such a stressful time, I always ask politely if it is possible to record on my iPad etc the conversation so I can refer back to it later, and have never been refused, why should they if they have nothing to worry about. Don't worry about upsetting people by asking questions as sometimes "if you don't ask you don't get" and they then will know you are fighting for your OH and won't be fobbed off.

Any answers you receive that you are not sure of, post on here and someone will try and explain in laymans terms.

All the best

Roy

User

Posted 01 Feb 2015 at 10:53

I agree about getting a second opinion.

We were treated at our local NHS hospital and then went for a second opinion to a private prostate clinic in London which is lead by a Professor who has had PCa himself.

At London they confirmed that my OH would be given exactly the same treatment with them.

This was reassuring - but in your case might offer some additional ideas about treatment.

My OH had scores of G7 N1 M0 and they gave him HT and RT plus he went on a trial (STAMPEDE).

Not wishing to confuse things for you at all, but the trial might be something that you should ask about too. It may just be that your hospital do not do them.

Let us know where in the UK that you are, and someone on here may be able to suggest a good place for a second opinion?

Your hospital will transfer all your test results over to them, so no need to worry about re-tests etc.

Many people get second opinions, so do not worry about offending anybody. In fact our surgeon was interested to hear what the London clinic said.

All the best

Alison

Edited by member 01 Feb 2015 at 10:56 | Reason: Not specified

User

Posted 02 Feb 2015 at 14:02

Polly, it sounds as if you are being a great support to you husband at a time when he is still too shocked to cope well. I hope you get some reassurances at your next consultation - a falling PSA is the best indicator that the hormones are doing their work.

The only constructive advice I can offer outside all the clinical stuff is to try to appreciate and carry on with whichever aspects of your lives you can still enjoy. We managed a short holiday soon after Tony's treatment was sorted, which helped us to feel more normal again. Days out, time with friends and family, hobbies and interests, walks, gardening and even DIY have helped us move past the initial depression, panic and shock. We're making efforts to see friends and are being quite open with them about the cancer, but asking them to treat us just like they always have done. Quality of life has to be the top priority when you know time is limited.

I hope your husband starts to get past the shock and depression soon, and manages to focus on the good things in his life.

Marje

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User

Posted 31 Jan 2015 at 09:24

Morning Polly

one thing for sure you are not alone on here.

There are many men and their OH'S on this forum who are or have been in a similar situation and are living good quality lives and have been doing so for some years since dx.

Has your husband had a PSA test since he started his treatment. What HT is he on

That info may be useful so others can offer advice and words of wisdom

Keep us updated

Bri

User

Posted 31 Jan 2015 at 09:39

User

Posted 31 Jan 2015 at 09:41

User

Posted 31 Jan 2015 at 09:56

There will be lots of support and advice here for you.
Best wishes,
Marje

User

Posted 31 Jan 2015 at 12:11

Hi Polly,

Fiona. x

User

Posted 31 Jan 2015 at 12:44

Belated greetings from me too Polly.

You've come to the right place.

I can't offer much help re: your other half's cancer but just wanted to say this is the site to be for help, reassurance or a virtual shoulder to lean on if you are really down.

All the best

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 Jan 2015 at 17:09

User

Posted 31 Jan 2015 at 20:01

Hi and thank you so much to everyone who has replied to my first post. There are lots for us to think about from your posts and hope we can be better positioned for my OH hospital visit next week.

The PSA level at diagnosis was 241 in August 2014 and 3 biopsy samples taken. An MRI bone scan done Sept 2014.

Al has had the 2nd PSA test last week for his treatment review with the oncology nurse next week.

Results were all three biopsy samples are affected. A gleason score of 10. The T stage was T4, the N stage is N2 the M stage is M0.

We were told that the cancer is advanced, and has spread outside the prostate to the lymph nodes but fortunately has not currently affected the bones.

The oncologist has not offered any other treatment than the hormone therapy (Prostap injections) and Al has now had three injections over the past 6 months. He was given the option to take part in a trial of radiotherapy but told us that it would not benefit him. We mentioned this to his oncology nurse who thinks he should not take up the offer at this stage. It seems that the Oncologist does not need to see Al again as he has no further treatment plans for him.

It was four months before Al was diagnosed and I have since agonised over whether we should get a second opinion as the meeting with the Oncologist lasted just 10 minutes and he was surprised that we had not been told Al had Advanced PC. It is so very worrying and Al is still in denial thinking that at 73 his expectations are quite low. Until six months ago he was a very active man but his morale is now very low.

This week Al has had a bleed from his bladder and was given antibiotics from our GP who suggests it may be from the prostate or he has a urinary infection. Not really very reassuring but will put it on our list for next week's hospital visit.

I note that most of you do not have much involvement with your GP surgery and see that it makes sense to contact the hospital with any queries and health issues. I will discuss this with the hospital next week. The nurses in Urology are very helpful when we visit and have been very kind.

Thankyou again for all your help.