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Stage 4 Diagnosis

User
Posted 24 Dec 2018 at 09:13

Hi there, sorry to post on Christmas Eve. I will not be expecting any replies for the next few days!


My husband (59) has just been diagnosed with Stage 4 Prostate Cancer that has spread to his spine, hips, pelvis and ribs - and also lymph nodes.


He had been suffering bad back pain for most of the year but has a history of back pain and so decided to soldier on until the pain became pretty much unbearable and walking became difficult. His GP referred him for an MRI which showed the pain was due to ’deposits’ on the spine which had travelled from the prostate. He had blood tests which showed PSA of 1429.


He was referred to the local hospital for a bone scan and subsequent meeting with urologist as an outpatient - but two days before the day of the bone scan he slipped over outside and was taken to A&E in severe pain (to put it lightly). An X-ray  showed a fractured hip which, it turned out, had been weakened by the cancer.


He had to wait over a week for the hip to be operated on due to various complications. (He had to have two blood transfusions due to low haemoglobin).  Most of this time he was in a state of terrifying delirium due to being ’morphine naive’, also I suspect due to shock, pain, fear and disorientation.


During this time he had CT scans, bone scans and was given first injection of Deregalix (I’ll have to check the spelling of that).


He then had a full hip replacement and is back home. He has to give himself daily injections to prevent blood clotting.


I forgot to say that as well as it having spread to the bones it also appears to be on the liver (or something is). This sounds particularly worrying to me but the nurse said they will not be investigating this as if it is cancer on the liver it will be shrunk by the hormone therapy which treats the cancer wherever it is in the body.


He will have his second injection of Deregalix on 27th December.


We are trying to adjust to a new reality but not sure what that reality is. We are told that it is very treatable (we know it is not curable). We are due to see consultant in the New Year and  the idea is to start chemotherapy in due course.


Needless to say, it’s a difficult time and we’re scared.


I would be very grateful to hear any thoughts. How bad is this? I know it is bad but dont know what may lie ahead. What questions should we be asking?


Good wishes to you all and thanks for reading.


Betty


 


 


 


 

User
Posted 24 Dec 2018 at 10:43
Hi Betty ,we were in a similar position 3 Christmas’s ago .garys had spread to lymph nodes and was not operable.at the time it seemed the end of the world .once a plan had been put in place and hormone injections started to take effect we felt a lot better seeing the PSA level come down .
Gary also had 6 sessions of chemo ,luckily with minimal side effects and carried on working which he still does now 3 years later .
Keep posting and ask away any questions as the knowledge on this site is fantastic.
Best wishes for the festive season.
Debby
User
Posted 24 Dec 2018 at 13:46

Thanks Ian and Bri,  it’s so great that people are taking the trouble to get in touch at this busy time of year. So glad i found this forum. I will check out those members Bri. 


Thanks and Happy Christmas


Betty

User
Posted 24 Dec 2018 at 19:27
Hi Betty123

Fairly similar to my husband at diagnosis. PSA 1303 lots of bone mets and spread to the lymph nodes. He had early Chemo which worked while having it PSA down to 1.1 but then started climbing again. Almost 2 years on he is doing quite well and started Enzalutamide at the beginning of the month. It has been ups and downs but once HT started he no longer had the horrific pain he had at diagnosis. Best wishes.
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User
Posted 24 Dec 2018 at 09:28
Hi Betty,

Sorry to read of your unfortunate news.

I wonder if your husband had any PSA tests prior to this one? Some of us here are advocates of routine PSA tests over the age of 50 but the NHS does not concur. Yet.

Sorry, I cannot offer you any solace on this occasion as I have no experience of advanced stages, but others here will, regardless of the season.

So I will just wish you and yours all the best for Christmas and good luck for the New Year.

Cheers, John.
User
Posted 24 Dec 2018 at 09:33

Thanks for getting back to me John. I appreciate it. The answer is, no. He didnt have any previous PSA tests, to my knowledge.


All good wishes for Christmas and the New Year. 


Betty

User
Posted 24 Dec 2018 at 09:59

Betty


i’m sorry to read of all you and your husband are going through.  i’m not at his stage, so i don’t know enough to comment, but there are others who know a lot and they will post their thoughts.  however, with christmas, there will be a bit of delay, i imagine.  


ulsterman

User
Posted 24 Dec 2018 at 10:01

Thanks Ulsterman! i definitely understand that.


Best wishes and Seasons Greetings.


Betty

User
Posted 24 Dec 2018 at 10:13

Hi Betty,


I'm sorry you and your husband find yourselves here.


My husband was diagnosed October with stage 4.


There is a good section on this site which gives lots of details on advance prostate cancer including treatments and outlook. As it says there often it can be controlled for several years but of course every man is different.


The nurses are extremely knowledgeable and helpful giving practical and emotional supportpport so it is worth speaking to them at some point. They can even put your husband in touch with someone in the same situation.


Best wishes

User
Posted 24 Dec 2018 at 10:20

Thank Gemma, I will certainly have a good look through the site and i may give the nurses a call. I hope your husband is doing well. 


Best wishes for Christmas and the New Year. 


Betty

User
Posted 24 Dec 2018 at 10:43
Hi Betty ,we were in a similar position 3 Christmas’s ago .garys had spread to lymph nodes and was not operable.at the time it seemed the end of the world .once a plan had been put in place and hormone injections started to take effect we felt a lot better seeing the PSA level come down .
Gary also had 6 sessions of chemo ,luckily with minimal side effects and carried on working which he still does now 3 years later .
Keep posting and ask away any questions as the knowledge on this site is fantastic.
Best wishes for the festive season.
Debby
User
Posted 24 Dec 2018 at 10:52

Wow! Thanks Debby, that sounds really positive.


Happy Christmas to you!

User
Posted 24 Dec 2018 at 11:30
Hi Betty, sorry you have had to join this club due to your husband’s diagnosis. The hormone therapy will starve the cancer of fuel and cause it to shrink. The hip fracture sounds like a sore one to say the least. Glad they’ve sorted that out.
Your husband will probably be offered further additional treatment which could be chemotherapy, Enzalutamide or Abiraterone. Possibly even radiotherapy. There are quite a few men on the forum who were stage 4 at diagnosis, I’m sure some will come along with answers too.
There are quite a few treatments available.
Thinking of you both,
Ian
User
Posted 24 Dec 2018 at 12:55
Hi and sorry you have joined us. Take a look at some other profiles. Some friends had a similar dx years ago and are still here. If you seatch for SiNess, Yorkhull , Irun on the members you will be able to read their stories.

Take heart and try and have a good Xmas

Bri
User
Posted 24 Dec 2018 at 13:46

Thanks Ian and Bri,  it’s so great that people are taking the trouble to get in touch at this busy time of year. So glad i found this forum. I will check out those members Bri. 


Thanks and Happy Christmas


Betty

User
Posted 24 Dec 2018 at 14:02

 


PS The hormone treatment he is having is is Degarelix not Deregalix. 


(I thought i’d got it a bit wrong).


BW


Betty

User
Posted 24 Dec 2018 at 19:27
Hi Betty123

Fairly similar to my husband at diagnosis. PSA 1303 lots of bone mets and spread to the lymph nodes. He had early Chemo which worked while having it PSA down to 1.1 but then started climbing again. Almost 2 years on he is doing quite well and started Enzalutamide at the beginning of the month. It has been ups and downs but once HT started he no longer had the horrific pain he had at diagnosis. Best wishes.
User
Posted 24 Dec 2018 at 20:50
Hi Betty,

So sorry to hear of your husband's diagnosis. I had the good fortune to meet Bill Turnbull (former BBC breakfast presenter) recently who has also been diagnosed with stage 4 prostate cancer. He says he chooses to treat it like a chronic disease rather than a terminal illness and has responded well to treatment despite it being tough - chemo and hormone therapy. I think after the initial shock, having a positive outlook is such an important factor. There are lots of men on this forum with a similar diagnosis to your husband, who have survived many years. With your love and support i'm sure your husband will fall into this category. This forum is brilliant for supporting wives, daughters and family members of those suffering with PCa, as well as those themselves. Sending you lots of good wishes. Take care,
Lisa xx
User
Posted 24 Dec 2018 at 21:15

Hi Betty,


I am a similar age and dx to your bloke. 3tb re staged to 4 . My journey only started 4 months ago so I cannot really give a long term opinion but if you check out my profile it may answer a few questions. Good luck and try to keep positive, the guys and girls on this forum are brilliant . Ask any questions even if they sound daft or un answerable , the support and knowlege is top notch.  I found that once a long term treatment plan was put in place it lifted the dark cloud , even in my case for an advanced diagnosis. Not the best time of year for you to hear this news , I hope the replies on this forum help lift your spirits.


All the very best in the circumstances


Chris

User
Posted 24 Dec 2018 at 21:33
Thanks so much for all your kind thoughts and replies. I have to admit that it’s tough at the moment. My husband keeps breaking down and crying which is so not like him but I think the hormone therapy might have something to do with that. He feels he’s let me and our daughter down and I’m doing my best to convince him otherwise and that he still has a lot of life yet and a lot to give. It’s fair to say that we are still adjusting to this! So glad I’ve found the forum. I’ve had a couple of people tell me that this is the best cancer to have, like we should be feeling lucky. Good to meet you guys. Best wishes to all and I’ll keep you posted.

Betty
User
Posted 24 Dec 2018 at 22:16
I should add that the HT already seems to be working. My husband was on slow release morphine tablets and oramorph for his back pain prior to hip fracture - and that still wasn’t really controlling the pain. Now, despite a recent hip replacement, he is managing on just paracetamol. Seems like a big improvement to me.

BW
Betty
User
Posted 25 Dec 2018 at 05:02

Hi Betty


Like Chris59 I'm a relative newbie diagnosed in August with T4 PCa. Check my profile, treatment plan is different to Chris's, I'm going down the prostap, chemo then RT route. I had my 5th chemo yesterday and the dexamethasone steroids you get with the docataxel chemo always get me staring at the ceiling at 4am.


Once your OH gets on a steady treatment plan his PSA will drop like a stone. Once you can get over the initial shock and discover a new normal life goes on, life is different post diagnosis, make no bones about that. I won't be opening any 5 year ISA's but I'm confident of picking up my state pension and bus pass in 2 years time. Shorter term we're looking forward in March 19 to a trip to Fort Lauderdale and all inclusive Caribbean cruise, a holiday my wife deserves more than me for supporting and putting up with me over the last few months.


My Onco said enjoy the holiday but don't go mad, yeah right!


Merry Christmas.


John(Jasper)


 


 

Edited by member 25 Dec 2018 at 05:05  | Reason: new

User
Posted 25 Dec 2018 at 06:13
Thanks John, I’ve been staring at the ceiling too! Hate these long dark mornings - but spring will come and life will go on. I haven’t yet worked out how to deal with my own feelings - mainly anger. But I’ll get there. I went on an eight week course in MBSR earlier this year (Mindfulness-Based Stress Reduction) and now seems to be the time to start putting that into practice (too busy before!).
That sounds like a great holiday you’ve got booked. Way to go! Now on with Christmas. Hope it’s a good one for you.
Betty
User
Posted 27 Dec 2018 at 18:25
Hello Betty
So sorry to hear of your husbands diagnosis. I can fully understand how you feel. My husband was diagnosed with T4 N1M1 back in April, it having spread to his pelvis and lymph glands. Like you I’ve had times of little sleep, sitting in an armchair at 3 in the morning with my thoughts and it’s easy at this early stage to say keep positive with all the questions and thoughts going around in your head but once your OHs treatment starts things will look more positive.

Now 9 months on my OH has finished his chemo having had 6 rounds, and is still on his hormone treatment. He was offered to participate in a Stampede trial, running alongside the chemo treatment and the two of them have worked wonders. His PSA is now 0.32 and had the results of his full body MRI today with the best news we could expect to hear - improvement in the prostate and no further spread of the cancer, in fact a slight improvement.

Like jasper we are planning a trip later this year but ours is to Australia to visit our daughter. So please try to be positive. You will find lots of support and advice here.
Best wishes to you both
Merilyn
User
Posted 28 Dec 2018 at 04:48

Thanks Merilyn, good to hear from you. So glad you’ve had such good news about PSA and from body scan. My husband had his second HT injection yesterday and he’s feeling very fragile physically and emotionally. It’s very early days for us  but Im hopeful we’ll get some good news before long and we’ll start to feel better. Does bring you closer though and you realise just how kind people are. Quite overwheming at times. Take care.


Betty

User
Posted 28 Dec 2018 at 07:12

Hi Betty


Sorry to hear he is still feeling down. I'm no expert but the ht injections plus the other meds and dealing with the diagnosis made me feel very emotional and fragile at first too. I couldn't even read a verse in a birthday card without filling up ! Which suprised my wife as she says I have a swinging brick instead of  heart. 


Even at my earlyish stage of treatment, my body and mind have  adapted to the meds and Some days I could fight the world, others , well to be honest I do go a bit withdrawn and feel weary. What works for me is browse through the good news stories on this site, it picks me up no end. Try not to google everything, deal with the facts as best you can and try to have a positive outlook. 


We are here for you. 


Chris.

User
Posted 28 Dec 2018 at 07:34

Thanks for that Chris. It’s taking him a little while to come to terms with it all. He’s an engineer and a ‘fixer’ who can always find a solution to a problem even if it means driving 100 miles for the right bit to fix it with. But I’m sure he’s going to cope with the new challenges. I want to get him looking at this site because there’s so much information and support here, but he doesn’t seem quite ready yet.
Hope you’re doing well.
BW
Betty

Edited by member 28 Dec 2018 at 07:36  | Reason: Not specified

User
Posted 30 Dec 2018 at 07:33
Hi there, can anyone give me an idea what to expect re chemotherapy. I know this is the plan but I’m not sure when as my husband is still feeling a bit battered after hip replacement three weeks ago following pathological fracture of hip. Will that delay the chemotherapy, I wonder?
Also, what is a ‘cycle’ of chemo? How many cycles is normal? How frequent? Can you drive afterwards? I know we’ll be getting all this information in due course but I can’t help thinking ahead and trying to work out how it will affect our lives. My husband is freelance and not currently working due to health problems. I’m also freelance and worried how I can continue to earn a living for us both while supporting him as I want to - esp re chemo.
Thanks for any info or comments.
BW
Betty
User
Posted 30 Dec 2018 at 07:41
Betty there are lots of folks on here with stories of their chemo experience I have read many of them and they seem either breeze through it or have issues, there doesn't seem to be much middle ground. Fingers crossed your husband will breeze through it.
User
Posted 30 Dec 2018 at 07:46
Thanks for replying. Let’s hope so. He’s already feeling very fatigued, sore, emotional, hot flushes etc from HT. And hates having to inject himself every night to prevent blood clots. The thought of chemo as a ramping up of treatment is weighing on him but I will tell him that it might not be nearly as bad as he thinks.
Best wishes
Betty
User
Posted 30 Dec 2018 at 08:30
Hi Betty

Tony has just had his 4th chemo infusion, on the day of the infusion he has been told not to drive as his car insurance would be invalid, other than that he can drive as normal. it is a 3 week cycle of chemo first 2 weeks he feels a bit rubbish and is very tired and falls asleep a lot third week he is more or less back to normal. Tony has had a few side effects , bit of an upset stomach but not too bad so he has been lucky, no feeling sick at all and his hair is going a bit thin but not fallen out so far. Hope your hubby gets on ok .

regards barbara
User
Posted 30 Dec 2018 at 08:56
Thanks Barbara, I’m gradually getting my head around this. So a ‘cycle’ means a session and they take place every three weeks? (Typically.)
Best wishes to you and Tony.
Betty
User
Posted 30 Dec 2018 at 12:53
We do have men here that have continued to work throughout chemo although he must be careful around days 5 - 7 not to expose himself to any infections, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Dec 2018 at 13:38

Hi Betty


Completed 5 out of 6 chemo infusions on Christmas Eve. I had a bad time on infusion 1 but the last 4 have been okay, days 3-7 after the chemo are the worst, drowsy, tired, lethargic. I'm retired but no way could I have worked during those 5 days but i guess everyone is different.


By day 8/9 I've been back to normal again, particularly with the steroids they give you to help the Chemo.


My 6th and final chemo is 14/1/19, must admit i will be pleased when this phase of my treatment plan is over but overall chemo wasn't as bad as i expected.


 

User
Posted 30 Dec 2018 at 16:13

Hi Betty..my husband has 6 cycles of docetaxal (chemo) over the summer.. he coped really well with chemo...days 3-7 felt the worst..bone pain and tiredness. Wasn't sick at all and his hair thinned (now growing back even on his already bald patch 😁). He is  also self employed and managed to work from home during the 6 cycles although it was reduced hours. It is now 3 months  now since his last chemo he's still tired/exhausted but is working and travelling abroad again. Hope this helps. Regards Karen

User
Posted 30 Dec 2018 at 16:31
Thanks Karen and Jasper. Interesting that you both say days 3-7 were the worst. Was that after every cycle? Well, it doesn’t sound like a walk in the park but fingers crossed it won’t be too bad for my man. Hope he keeps his curly hair!
BW
Betty
User
Posted 30 Dec 2018 at 16:33

All the best for the final session,  Jasper.

User
Posted 30 Dec 2018 at 21:51

Hello Betty my husband was disgnosed out of the blue with a psa of over 6000 two years ago. 


He continued to work through chemo but was v v tired at times. We had an electronic thermometer to keep an eye on possible infections, and he stopped swimming but other than that we kept things pretty normal. 


(Im quite militant im afraid about psa testing - although many people and organisations dont support a national screening programme because of issues with the test - i believe very strongly that even though it is flawed it should be given more easily to men over 50. But then I am biased because my husband had asked for one a few years ago because of family history but was persuaded not to have it by a gp who said it ’causes more problems than it solves...’)


Anyway i hope your husband gets a clear treatment plan soon x

User
Posted 30 Dec 2018 at 22:40

Hi Betty....if you had seen my husband during chemo you wouldn't have noticed anything different....as a family with 3 boys (men 18/22/26) still at home we were worried how they would be affected, but seeing there dad coping brilliantly and bbein his usual self really helped us all .think the lovely summer we had helped aswell.  Just make sure you do as the hospital tell you, have a thermometer, make sure husband uses the mouthwash twice a day, and rest when needed . Karen

User
Posted 30 Dec 2018 at 23:08
Hi Betty,
Sorry about oh dx but your in best place to ask questions.
As others say chemo can affect everyone in different ways. I had my first 6 cycle treatment a couple of years ago, one every 3=weeks. As Lynn says your blood count goes down on the second week and makes you more subscetable to infection. It’s like washing hands, keeping clean, etc. My chemo went well, worked throughout but listened to my body and rested when I needed to. It’s not easy both physically and mentally. You mentioned your OH has his moments and I too had them but found that chatting about in worked when we needed to. Sometimes you talk about it and other times you don’t.
If your freelance, you can work your way round things. It does take time to get your head round it.
Good luck
Steven
User
Posted 30 Dec 2018 at 23:09
That’s encouraging. I’ll get a thermometer.
BW
Betty
User
Posted 30 Dec 2018 at 23:16

Thanks Steven, it’s helpful to hear from men who have been through it. I’m on a steep learning curve at the moment and we’re in a new world. It’s so good to know that the natives are friendly at least! Thanks for the good advice.


BW


Betty

Edited by member 31 Dec 2018 at 05:36  | Reason: typo!

User
Posted 11 Jan 2019 at 08:12
Hi, just an update from me. OH has now had two injections of degarelix but still has back pain. He spoke to specialist nurse this week and she said they might try some tablets as well as the Degarelix and maybe a ‘blast’ of radiotherapy too. He now has an appt date with onco consultant (his first) next Friday (18/01) - where they will be discussing ongoing plan of treatment incl chemotherapy. Also, the nurse said degarelix takes three months to work but looking online it says there should be 85% decrease in PSA after two months. (was 1429 on dx).
The nurse said she would send a form that he could take to GP surgery for a blood test for PSA which would inform that meeting. That was on Tuesday and it’s now Friday and form hasn’t arrived yet. Is this the usual way to do things? What might the tablets be that the nurse is referring to? Looking for clues.
Very grateful for any comments.
BW
Betty
User
Posted 11 Jan 2019 at 17:48
Betty, be more proactive! If you live close to the hospital pick up a blood test form from the nurse. If not, you should have a GP practice nurse who can do the test and you should be able to get it done next day (after the weekend). There is nothing magical about the form. It just lists the specific tests needed, which the specialist nurse can tell you. If you're lucky you can book the test on line at the hospital bloodtaking dept, which saves the queuing. Alternatively, you can probably book it at your GP through a Patient Access app or similar, if you have enrolled via your GP practice. Quick as you need the results with the consultant by next Friday!

AC
User
Posted 11 Jan 2019 at 18:42
Thanks AC. The nurse finally returned my call and said the form was in the post (2nd class). However he said if we went to the hospital on Monday he can have the blood test there. So we’ll def have results by Friday 🙂
User
Posted 21 Jan 2019 at 07:59
So, the consultant did have the blood test results in time for the appointment on Friday. The HT has been doing its job as PSA down from 1429 to 2.9 after two treatments. Sounds good to me. He has been referred for another MRI also radiotherapy to the hip in case of cancer cells on the hip replacement (I think that’s what he said). Then on to chemo in about six weeks.
Thanks for the advice OC.
BW
Betty
User
Posted 21 Jan 2019 at 08:17
I mean AC! 🙂
User
Posted 21 Jan 2019 at 08:20
Fantastic results Betty, very positive.

John
User
Posted 21 Jan 2019 at 08:59
Indeed. The wonders of science! Thanks John.
User
Posted 22 Jan 2019 at 17:35
Hi again, on a different note, the specialist nurse has got in touch to say he’ll be sorting out a DS 1500. Is this good news?
Thanks
Betty
User
Posted 22 Jan 2019 at 18:44

It is the application form for attendance allowance or PIP which is available to people who have a serious health problem or disability. People who are classed as terminally ill can get a higher rate of attendance allowance which is not means-tested, if they are over state pension age and meet certain criteria. People who are under state pension age are entitled to PIP instead - it is the same application form.

Edited by member 22 Jan 2019 at 18:47  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2019 at 18:54
Thanks Lyn. Would my husband qualify for PIP? He’s hoping to get working again (he’s a freelance engineer) when he’s got through the radiotherapy and the chemo and when the pain in his back has reduced. He’s Stage 4 with widespread mets but responding well to HT. I’m not sure how it works.
Betty
User
Posted 22 Jan 2019 at 19:13
The DS1500 also gets you fast tracked for a Mobility car with a higher rate PIP so one of the McMillan nurses told me, if you're under 65 and I'm 65 next birthday.
I mentioned this to my Specialist Cancer Nurse who told me although I'm stage 4 and incurable they wouldn't support furnishing me with a DS1500 due to my positive response to treatment.
Don't know if that is a good thing or bad thing.
 
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