Just diagnosed yesterday

User

Posted 10 Sep 2020 at 14:03

I am a 61 year old who thought he was reasonably fit and active. A routine blood test showed some liver issues that my GP called me into the surgery to discuss. I had no issues he could see other than a bad back that had been causing me issues for a few weeks, i had put it down to bad posture whilst working from home but not that bad that it had stopped me cutting and filling a shed full of wood for the winter that same day .

He decided to send me for a CT scan and do some more bloods. That same evening I received a call from the same GP. I was out with my 13yo daughter in a field with her horse.

Are you at home he asked, I replied i was not but outside and free to talk. He came straight to the point "I have some bad news you have cancer and its spread to your bones", he said.

I was as you can imagine shocked and lost for words but pulled myself together for the sake of my daughter.

The next four weeks have been hell. scans, a visit to DR drain-rod (as i dis-affectionally call him) and finally a visit yesterday with the oncologist, where I finally got some answers.

I tried to keep away from the internet over those weeks . I spent times with hope and others where I wondered if I would see another Christmas, no one seemed to want to tell me anything.

So now I know I had a PSA score of 82, my CT showed nothing but some fatty residue on my liver but the bone scan shows multiple metastases legs, shoulders, spine pelvis and god knows where else. I have been told it is un-curable but treatable

I still feel fit and well (but every twinge now is a worry) I have started immediately on Hormone therapy with Bicalultamide with an injection to follow in a couple of weeks.

I dont know what to expect in the future, I think of a new question every few minutes, I have been given support numbers at the hospital and told to ring at anytime by some reassuring nurses but I am still trying to get my head around things I suppose writing this on here is another way of accepting things.

My other problem is my daughter who is on the Autistic scale, we do not want to tell her unless we can give her the answers to the thousands of questions she will demand answers to and expect us to provide immediately. She is a "daddys girl" and will not react well to the news, but she will spot any change from normal routine and want to know why.

So basically any advice, help, guidance will be appreciated.

Thanks

User

Posted 10 Sep 2020 at 16:46

An incurable diagnosis does not mean that the end is imminent - we have men here whose cancer has been well controlled by the hormone therapy for 10 years (and in a handful of cases, 15 years plus) despite being diagnosed with bone mets.

On that basis, it may be that you simply don't need to tell your daughter; if your doctor / hospital appointments are during the school day, she may not need to know and the main side effects (fatigue affects many but not all men on HT) may be explained some other way, perhaps? Similarly, thinning body hair & loss of libido is unlikely to be noticeable to her.

The good news in all this is that what they thought they saw on the liver turned out not to be cancer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Sep 2020 at 19:14

Hi,

Lynne is right, incurable does not mean imminent. But I know how you are feeling at the moment, my husband also had an incurable diagnosis last July with a PSA of 289 and I was also wondering if he d make Christmas.

He did, he's had chemotherapy, radiotherapy and is on lifelong hormone therapy. He's working (despite being over retirement age) and we are getting on with life okay.

So try not to despair, I know it's easier said than done. Joining this forum was the best thing I did and you will find loads of support and advice on here.

Best wishes

Mrs MAS

User

Posted 11 Sep 2020 at 10:03

Really feel fo you philkai. My husband was in this position in March. You will now enter a world you knew nothing of and don’t want to be part of. However, this forum and those on it are a fantastic source of honest straightforward advice and support. I think your approach of not googling is probably the best idea. We didn’t do this and i can safety say Dr Google did not help.

We have two teenage children who are aware their Dad has cancer but do not yet know it’s incurable. A friend whose husband recently passed away with cancer asked her similar aged children what they did/didn’t do right or wrong. Although they were open with them they didn’t tell them the what-ifs. The kids said they would’ve wanted to know what the outcomes might be because it may have changed some of the decisions they made. One said she may not have been so selfish in her choices. We are just about to tell ours based on this advice. I don’t know the extent of your daughters autism or if this would apply but even speaking to someone from an autism group who has had a similar experience might help?

User

Posted 11 Sep 2020 at 11:41

Phil and Skye,

Macmillan do some really helpful advice on this subject of telling children:

Talking to Children and Teenagers
(Unfortunately, Riprap, the teenager's forum which this refers to, appears to be defunct.)

There's a free Macmillan book available from most hospital cancer centres, and the PDF is available here:

Talking to Children and Teenagers when an Adult has Cancer

This explains that you probably do have to tell children, because they will pick up that they're not being told something, and often imagine it's something else such as parents splitting up, and/or something that's their own fault. It goes through what's age appropriate to say, and how much children of different ages are likely to understand, and ongoing conversations (telling them is not a once-off event).

I certainly appreciate not wanting to tell until you have the answers - that was my position with telling my elderly parents. (Would rather not having to tell them at all, but I am their carer, and it would have been impossible to hide lots of hospital appointments/treatments. Same considerations would have applied as trying not to tell children.)

Wishing you the best with this.

User

Posted 15 Sep 2020 at 11:34

Thanks for everyone's kind replies

User

Posted 16 Sep 2020 at 19:28

Hi, my husband has a grade 5 prostate cancer with mets in the lung and bones, diagnosed last September. He has 3 monthly hormone injections and was immediately prescribed Abiraterone. A year on all tumours have shrunk by 30% and for that we are very grateful because this time last year we were in free fall. What I’m trying to say is although these forms of cancer are not curable they are certainly treatable and once your shock begins to settle, you will think in terms of getting through the week, the month and then 6 monthly intervals between scans. It is doable and we’ve done so much over the past year. Please keep us up to date with your progress. We are all in the same boat and this forum is wonderfully supportive and informative.

User

Posted 01 Oct 2020 at 15:41

Hi all

Just an update
My daughter has been told, distraught at the news initially but I have tried to be as normal as possible just to leave it in the background and carry on life as normal as much for myself as the family. I have even brought myself the truck I always wanted.

I have had my first hormone injection and start on enzalutamide mid October, no mention yet of chemotherapy just worried that is only because of Covid but will ask at my next appointment.

I am still experiencing some lower back pain but hoped this would ease, otherwise I have been in good health and reasonable spirits with no obvious side effects to the treatment.
Then today I received a letter from Urology outlining my case so far and for the first time I saw my Gleason score was 5+4=9.
I broke my own golden rule and googled it and I am now back to stage one of dread and fear for the future, I only went for a routine blood test and in a month I am down to this.
Every time I get some optimism someone from the medical dept smacks me in the face again.

Is there any hope at all?

User

Posted 01 Oct 2020 at 16:01

Hi Phil,

You have been given Abiraterone instead of chemotherapy. This is not normally allowed at your stage because it's so expensive, but chemo is regarded as rather dangerous because of COVID, so many oncologists take the view they can't give it at the moment.

Prostate Cancer UK and Tackle Prostate Cancer and some other groups have all been pushing to have the treatment you're on made generally available, because for most people the side effects of Abiraterone are much less significant than those of chemotherapy, and Abiraterone has been shown to be at least as effective (or maybe even more effective, I'm not following that STAMPEDE trial closely). This was recently refused by NICE mainly on the grounds that Abiraterone is very expensive and chemo is very cheap, but it's being appealed.

So you have got the treatment most people would like instead of chemo, but can't get except during this time of COVID (and even then, many people haven't got it and still ended up on chemo). I think it's good for you to understand you are probably on a better treatment, as it would be very much cheaper to switch you to have chemo instead, and probably not as good.

User

Posted 01 Oct 2020 at 16:23

Just to note that Andy has written abiraterone when he meant enzalutimide, I think. However, the same principle applies - many men have fought for the right to have these drugs before chemo so you are very fortunate (in a very unfortunate way).

Also, the G9 may have caused you some worry but is rather irrelevant now. All a G9 means is that it may behave more aggressively and spread to bone, soft organs, etc but since yours had already spread, it makes hardly any difference to you. If you need reassurance, we have had men here for 10 years or more with G9 and G10 - it isn't necessarily the case that treatments will be less successful for you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Oct 2020 at 18:33

Originally Posted by: Online Community Member

Just to note that Andy has written abiraterone when he meant enzalutimide, I think.

Yes, thanks Lyn.

User

Posted 01 Oct 2020 at 19:21

Thanks for the replies I get more hope in 5 minutes on here than any of the visits to hospital, not their fault its a job they do every day, not nice for them I suppose but there are so many questions that do not come to mind when you are sat in the surgery like a rabbit in the headlights.
Then a few days later a letter drops through the door with details on you have never discussed or understand the implications. They are good at giving the facts but hope is something that is needed.

Sorry for my ignorance but abiraterone / enzalutimide whats the difference?

User

Posted 01 Oct 2020 at 20:11

Just want to send my best wishes to you and your daughter.

User

Posted 02 Oct 2020 at 09:30

Originally Posted by: Online Community Member

Sorry for my ignorance butabiraterone / enzalutimide whats the difference?

These are both newer generation hormone therapy drugs, and extremely expensive. In the UK, they tend to be used later in treatment, after your first hormone therapy has stopped working and after chemo has been used. Indeed, the NICE rules in England say you can't have it until after you've tried chemo. There's been a trial running for a long time which shows they are very effective when used from the beginning of hormone treatment, and at least as good as chemo (which has also more recently been moved nearer the beginning of treatment), but have far fewer serious side effects. Such use is now common in some other countries too, but due to the high cost, has not been approved for such use in England, *EXCEPT* during COVID-19, because chemo would make a COVID-19 infection much more serious. Once you are on it, you will stay on it for as long as it's beneficial for you, even after COVID-19.

The two drugs have much the same effect (although Abiraterone also requires you to be on a low dose steroid to make up for a reduction in natural steroids available from your adrenal glands). However, they work completely differently.

Enzalutamide is what's known as an anti-androgen, so it blocks androgen receptors and stops them using any small amount of testosterone which is still floating around. (Androgen is a collective name for all male sex hormones, of which testosterone is the best known, but there are lots of them.) Enzalutamide works like the long standing bicalutamide (hence they're both -lutamides), but is 8 times more powerful binding to the androgen receptors, and so 8 times more effective in keeping testosterone out. There are two more newer drugs in this family, apalutamide and darolutamide, which are going through licensing and approvals processes (there are some people in England on apalutamide now).

Abiraterone is known as an androgen synthesis inhibitor, i.e. something that stops androgens being made from something else. Prostate cells don't actually use testosterone directly, they convert it into another androgen first, dihydrotestoterone (DHT) which is 5-20 times more powerful than testosterone. When there's no testosterone around, a mutation which the cancer cells will eventually discover is that they can instead convert adrenal steroids into DHT, which enables the cancer cells to start growing again. Abiraterone prevents this conversion of adrenal steroids into DHT. It is also an anti-androgen, but that's not the main property it's used for.

If you're more interested in this, I do give an occasional talk on how the different hormone therapy drugs work.

User

Posted 02 Oct 2020 at 10:15

Wow
Thanks for that extremely in-depth but easy to understand explanation.

Yesterday I got the letter with details that I had not previously seen and immediately sunk back to the doom and gloom I felt at the start of this journey just a few weeks ago.
I am sure I will have many other such on this roller-coaster of a ride I have begun.

I am being positive and looking to the future, trying to keep life the same as it was for as long as possible and not to be stopped doing the things we as a family have enjoyed.... but sometimes its little things like that that bring the whole ride back to the start.

As I have previously said "Thank you to all on here" not just for the fantastic information but also for the really important thing HOPE!

User

Posted 02 Oct 2020 at 16:09

Hi,

my husband is also Gleason 9 and has been taking Abiraterone for 12 months since diagnosis last September. So far he’s had no side effects and is living life to the full.

User

Posted 02 Oct 2020 at 17:15

I am Gleason 9 also. I did have chemo at the start but have now been on abiraterone for over 4 years, I have no side effects I am aware of and still run ultramarathons . Don’t let you worry about what might be destroy the very real joy you can have now.

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 21 Oct 2020 at 17:58

Hi Sorry that you find yourself here along with the rest of us but there is good news out there .I had a robotic prostectomy back in February unfortunately the cancer had spread and is in three local lymph nodes ,the bone scan was clear .Gleason 4- 3 with tiertary 5 (a few cells were found to be grade 5) My PSA was 17 after the op but rose to baseline 28.6 in the two months after prior to my starting HT .My consultant says I'm curable and because of COVID prescribed Enzalutimide for three years as first line hormone therapy and a course of RT which will start in the New Year.I started on Enzalutimide in June 2020 ,4 weeks later my PSA was 0.02,. eight weeks after starting it dropped to 0.01 basically undetectable which means the cancer had been put to sleep and possibly some cells have died off .Unfortunately due to the nature of prostate cancer it is likely that at some time in the future Enzalutimide will not work as well for me but in the meantime it's a great relief to know the treatment works.
It is a very expensive drug over £100 a day .It has some bad side affects hot flashes ,sweats ,headaches, aches in muscles insomnia BUT it is a wonderful drug and many studies only just published are proving it's worth so it's side affects are bearable if it helps keep the cancer from progressing .There have been reports of remission whilst patients have been on Enzalutimide bone Mets have gone and lymph nodes no longer show evidence of cancer obviously not everyone has such good results but it's a great drug .Covid has thus been a blessing in disguise for me. I wish you well ,many new treatments are in the pipeline and there is much to be hopeful about .

Edited by member 21 Oct 2020 at 18:03 | Reason: Not specified

User

Posted 22 Oct 2020 at 10:31

Thanks to everyone for their kind words

So went for my appointment with Oncology yesterday two weeks after my first hormone injection, good news is that my psa levels have dropped to 13 from 82, my lower back pain as gone but I still have some discomfort in my hip and shoulder but nothing like the back pain.
I am now awaiting delivery of the new tablets and should start taking them in about a week, so here goes back on the rollercoaster.

Also some disturbing news
In 2017 I had some breathing problems that led to xrays blood tests and CT scans, they were very thorough and to put it simply the diagnosis was I had become allergic to our parrot.. Removal of the bird and a course of steroids completely cured the condition.
However as a result of the extensive tests it was noted that I had anti Jo antibodies in my blood and that would require investigation by rheumatology to which I was referred.
I have had several appointments since, They have asked about joint pain and looked for any skin conditions of which at the time I had none.
I did some research later and noted that the anti Jo could also be a sign of malignancy, but then when you google anything you get that result. But as the doctors never suggested anything I accepted they knew better happy they were not even considering that as an option, thinking myself fit and well.
A week after my first visit with Oncology I had another telephone consultation with Rheumatology my first for about 9 months.
He asked the usual questions regarding pain etc and I told him my back issues and explained my cancer diagnosis and how this was probably related.
I then asked the question " I was referred because of the anti Jo could they have been a sign I was developing cancer" His reply stunned me " YES you should have been tested for malignancy but this was not done we were looking for skin conditions I'm sorry "

His written report to my GP does not give that information. I asked the Oncologist yesterday how long I may have had the condition and his reply was that it could have started slowly over a number of years before turning into the aggressive form it now was.

So how I see it is:
I had tests and scans that eliminated many things but never had a simple PSA test in the three years from my initial lung problem. During that time I also had my usual blood tests concerning my high blood pressure which showed no other abnormalities.
If I had been tested my cancer could have been picked up at a stage where it could have been cured instead of the uncertain future I now face.

User

Posted 23 Oct 2020 at 11:07

My diagnosis was very similar to yours and I was 61 as well. The good news is my PSA was 852 but went all the way down to 0.5 after some months on the hormone treatment. A year on after 6 bouts of chemo as well I am back at work 3 days a week building up to full time. So chin up and fight the cancer. It will win but hopefully not for many years!

User

Posted 23 Oct 2020 at 20:13

Just watched you YouTube video Kev. Tough to do but I really appreciated you doing it. I am 3 years since my Stage 4 diagnosis and most of the time I now feel a renewed joy in the little things with heightened awareness - the smells of wet grass and leaves, for example. Perhaps it is because, like you, I have now really realised that I only have one life and this is it and it is the hand I have to play. Thanks.

Alan

User

Posted 11 Nov 2020 at 16:16

Finally a little good news to post on this journey.

Blood test three weeks ago showed my PSA down to 13 from 82

Now two weeks into my first month on enzalutamide another blood test and a call from Oncology revealed that my PSA is down to 3 and my calcium score down from almost 900 to 300 with virtually zero side effects so far.

Oncologist delighted with the results so I have to agree with him, if he is happy that makes me happy.

Early days I know but anything positive is a move in the right direction, I still feel as though I am walking on a frozen pond, each new step that doesn't go through the ice is a fantastic relief but there is still another step to take.

User

Posted 11 Nov 2020 at 16:25

Brilliant, Phil

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Nov 2020 at 16:57

Great response Phil.

Ido4

User

Posted 11 Nov 2020 at 18:26

Excellent news, don’t stop believing

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 13 Jan 2021 at 12:11

Hi all

Just an update as promised

Call this morning from Oncology Pharmacist, PSA down to 1.4 and Bone markers within normal levels with all other bloods normal. Next test now moved out o eight weeks from the two that has been the norm.

All good news on that front but I must admit with Christmas, New Year, daughters 14th Birthday all with a week and the announcement from my son of a new grandchild due in June, its all become a little overwhelming.

I have with the help of my wonderful wife managed to stay positive so far but when you get these markers in life although you can say "ok lets aim for the next one" It was difficult with so many all together, once the "I wonder if I will see another thought" came into my head I was stuck with it and the depression that came with it.

Covid doesn't help, with my wife booking some dates for caravan hols with her usual bubbling optimism both about the virus and my condition whilst I was hitting a low only made the issue worse before my brave front cracked and I was reduced to tears, only to get a rebuke for not telling her how I was feeling, even though she had noticed my mood and was trying to cheer me up without saying anything openly.

At least now with the appointments moving to 8 weeks I can try and put it back in the box in my head without the constant reminders and needles. I have been advised about counseling but feel its not for me, I need to be able to block it out so the less I have to see or speak to anyone the better, being on here is enough and gives me support when I need it so far.

Oh Happy New Year and lots of them to everyone on here

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