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Hubby recently diagnosed

User
Posted 25 Oct 2018 at 00:22

Hello. Its been nearly 8 weeks since my 54 year old hubby walked into his GP surgery with what he thought could be a bladder/urine infection. Examination and an urgent referral by GP gave us results the same week as PSA 33 and likely to be cancer. Floored us. He was fitted with a catheter.Over several weeks he's had a bone scan, MRI scan, CT and biopsy. Nothing results wise was given to us as we went along week to week. Last week we were given the results of all the tests and its been diagnosed as locally advanced. Gleason score 7.Spread to the seminal vessels.There was a shadow on the spine that the local MDT meeting ruled out as anything to worry about but it would be monitored. The consultant said they were aiming to manage it, not cure it, but would try.Floored again. Next day the macmillan nurse called and said they are aiming to cure it. However a few days later he gets a call from the hospital saying a regional team have re looked at his results and regraded the gleason score to 9 and another scan is to be done of the shadow on the spine. Just as we were coming to terms with the first diagnosis they then throw that at us with another scan to come and another wait for results. He's started hormone tablets and injections to follow. The roller coaster is too much already!!! 

Edited by member 25 Oct 2018 at 09:34  | Reason: Spelling mistake

It's nice to be important, but more important to be nice! 

User
Posted 26 Nov 2018 at 23:49
It sounds like they are considering a TURP, an operation to take a core out of the middle of the prostate to take pressure off the urethra. Does that ring any bells?

They were probably also hoping that the hormone treatment will reduce the prostate size without them needing to do the TURP - perhaps this was a bit too soon.

As for the 3 hour thing- if they could see that his bladder was full but he wasn't passing any urine, it would have been irresponsible to leave him any longer as it could cause kidney damage. When does he have to go back for another try?

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

User
Posted 20 Jan 2019 at 01:05
Generally speaking, urologists are experts in urology (particularly surgery for urological conditions) and oncologists are experts in cancer treatment so it stands to reason that the onco knows more about treating your husband than the urologist does. In most cases, once the urologist knows that PCa is incurable, they hand the case over to oncology unless there is still some specific thing that they might need to be involved in, in your case the possible TURP but in other cases, managing permanent catheters, frequent UTIs, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2019 at 08:54
Never think you are cured of cancer until 1 second before you die of something else!

Better to think in terms of remission as I think it helps you deal with stuff and also means you won't ignore symptoms because you are "cured".

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User
Posted 25 Oct 2018 at 09:01
Hello ,from one wife to another,we were in exactly the same position 3 years ago.similar age and symptoms. Gary’s results were PSA 23 and Gleason 9 (4+5) with spread to lymph nodes so no cure .like you we were devestated.The Shock was at first unbelievable but as soon as treatment started it felt as if a weight had been lifted .in Gary’s case it was hormones and then 6 rounds of chemo which sounded scary but he was fortunate enough to work all the way through this .He is now on the stampede trial which your OH may be offered and for the last 2 1/2 years his PSA has been undetectable.Yes there are challenges and down times mainly fatigue but he still works and we still enjoy holidays .If you haven’t done it already download or order the toolkit from this website and also you can press on the avatars for each person and read their journey.

If you need any more info either ask away on here or phone the helpline .

Best wishes to you both and make sure you talk because it really does help

Keep strong

Debby

User
Posted 25 Oct 2018 at 11:04

Hi there, This is a horrible time for you both and you have my sympathy.

I was diagnosed December last year with a of PSA 26 and Gleason 9 (5+4) as High Risk  locally advanced, later found to have no bone involvement. Unfortunately all i heard was ' we will aim to cure you' but it hit my wife hard straight from the off. Took me longer to understand the seriousness. And i now understand most consultants never say that they will cure you. So them saying its manageable is probably the right thing as whatever they do you just never know the future. So just hope for many many years or remission...

I decided on Hormone therapy , HD Brachytherapy and EB Radiotherapy (23 sessions) although i was offered surgery . I have just over a year left on the HT and its hit me hard mentally, but everyone is different. I have been very lucky with no side effects from either Brachy' or RT and no physical effects from the HT except the dreaded ED.

Listen to everything your consultant and nurse says , especially the specialist nurses as sometimes you need them to translate the real meaning of what the consultant says. I also set up consultation with a counselor very early and its been a godsend to me. I am still seeing her and i don't know how i would manage without it. You can ask your nurse to arrange it.

There are also a lot of friendly helpful people on here that have been through the mill and are more than happy to explain the ropes.

I wish you and OH all the best and fingers crossed for you.

Phil

User
Posted 25 Oct 2018 at 11:29
Thankyou both. We should of had his appointment at oncology today to discuss his treatment plan but the clinic has been cancelled until next Thursday.Very frustrating.The consultant mentioned chemotherapy to start in the new year. The macmillan nurse mentioned radiotherapy. Surgery so far has been ruled out. When the hospital called with the changed results they said chemotherapy to start in the next 4 weeks or so. The goal posts keep changing though so who knows?! Just wanted to get the oncology discussion out of the way and a plan in place. Now another week of waiting.

It's nice to be important, but more important to be nice! 

User
Posted 25 Oct 2018 at 22:18
Thankyou for taking the time to tell myself your stories. Just starting this journey feels so daunting. I know it's a marathon, not a sprint. It's not helped as hubby's situation we feel has been handled poorly so far. Firstly, we were sent to another town for his biopsy. When we got there hubby told the doctor he had a scan the following day so that got cancelled and we came home. We didn't realise at the time the biopsy should be done after scans. So why did they make us that appointment first?! Then after all the tests/scans we get a letter in the post sent 2nd class 3 days earlier, for his results that same day also in another town. The appointment was in the morning, our post came in the afternoon so missed it. When he rang to explain why he missed it he was offered an appointment for another 3 weeks away. He explained it had already been weeks and this was their error he missed it. We got another appointment 3 days later in our town. When we went to that appointment it was a consultant we had never met before who asked why we were there!!! Good start. Results we said after all the scans and biopsy. He looked at his computer screen and read it from there.Then the phone calls afterwards with changing diagnosis/treatments. Then the cancelled oncology appointment today. It's felt chaotic at a time when we really don't need it. However reading about you guys I do have some hope we will learn to live with this as you have. I have read your replies to him and he's agreed to go to the local monthly support group, at least once to see what it's like. It's a start. Thankyou.

It's nice to be important, but more important to be nice! 

User
Posted 25 Oct 2018 at 23:09
Welcome to the apparently not broken NHS and its postcode lottery. I assume the hospital you attend uses Macmillan nurses as the urology nurse specialists and that was why s/he had access to your results? Or did you ring Macmillan for advice?

It may be that both the consultant and the nurse are correct. The specialist is telling you that if the hotspot is confirmed to be bone mets, they will start chemo quite quickly; this is a reasonably new approach that has shown hormone treatment to be more effective for longer. The nurse could also be correct, if the hotspot isn't cancer, they will offer RT as was originally discussed with you.

Just possible explanations for the mixed messages.

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

User
Posted 28 Oct 2018 at 13:58

Scan to be done on hubby's back next Sunday. Oncology now this Thursday as they previously cancelled last week's. Can they discuss a treatment plan Thursday if the back scan has not took place yet? 

It's nice to be important, but more important to be nice! 

User
Posted 28 Oct 2018 at 15:18
Yes, they will check how he is going with the hormone tablets and make arrangements for the injections to be started and may also talk you through the chemo and get consent so they can start the planning.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Nov 2018 at 15:25

So oncology gave us two different treatment plans depending  on the shadow mri scan results. If the spine hot-spot is a tumour then hormone, chemo, followed by radiotherapy.If not then hormone and radiotherapy. I asked why we were given the first lot of results from the local mdt meeting before the regional team had looked at them. Kind of got a politicians answer. She said as the original gleason score was 7 then the local team thought no further investigation of the shadow. Then when regional team upgraded gleason to 9 then shadow now has to be ruled out  incase its a problem later on. So hubby's 4th scan on his back was done Sunday gone. We get those results a week on Thursday. 

It's nice to be important, but more important to be nice! 

User
Posted 15 Nov 2018 at 16:24

Well a bit of good news. The hotspot on the spine they are confident is not a tumour. So stage 3b it is with radiotherapy to start January. 

It's nice to be important, but more important to be nice! 

User
Posted 15 Nov 2018 at 18:53

Good news about the shadow and that you will finally start treatment, I really do wish you both the best of luck. I am under investigation and await result of biopsy and the waiting is very stressful.

User
Posted 15 Nov 2018 at 18:59

Originally Posted by: Online Community Member

Well a bit of good news. The hotspot on the spine they are confident is not a tumour. So stage 3b it is with radiotherapy to start January. 

seems to be  something about the vertebrae on the spine I had a hotspot on my T 11 which turned out to be nothing I say nothing but they knew it wasn’t a metastasis but couldn’t say what it was 

User
Posted 15 Nov 2018 at 23:30

The specialist said injections for 2 years. Hubby had the first one 2 weeks ago. Last tablet tomorrow. 7 weeks of radiotherapy. Checkups for life. Mad to think this started in August and we've already feel we have been to hell and back with the confusion in MDT local/regional results. She said 30/40% are classed as cured 10 years later. The rest still having some kind of treatment. She never mentioned death percentage and to be honest I didn't want to ask. The waiting has been hell, especially this last week. Hubby has been very hard to cope with. Crying uncontrolably, snappy, and even wanted to tell myself his funeral songs which I refused to discuss. I'm exhausted already. The waiting is so hard. I feel for those who are. 

It's nice to be important, but more important to be nice! 

User
Posted 15 Nov 2018 at 23:55

I feel some weight lifted now we finally know where he stands. I hope hubby will settle down to but thanks for the heads up. I did ask about proton beam therapy instead but the specialist didn't seem to keen. Has anybody on here tried that and had any success at stage 3?

It's nice to be important, but more important to be nice! 

User
Posted 15 Nov 2018 at 23:59
I know how hard it is but focus on the good news that you have had; he doesn’t have bone mets and so they are offering treatment with curative intent. When you are on a curative path, there is little to gain from asking about the death rates since the onco has every intention of making sure that the cancer is put into remission.

Personally, I have encouraged those conversations about the morbid things. It is easier to say difficult things now when it isn’t real than at the end of someone’s life when we fear that starting a conversation about the end will be distressing or frightening. John and I talked very soon after diagnosis about what he would want, and the conversations were had with all of our parents long before they were needed. If saying those things to you means that he can then put that out of his head and feel a bit more like he has a handle on it, then why not? There are other things he might need to do like review his will, check life insurance policy wording, it is just part of processing a cancer diagnosis and learning to move forward.

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

User
Posted 16 Nov 2018 at 00:06
Unlikely that proton beam therapy is going to be suitable in your case. It is good for difficult access cancers like the eye, brain and for small children but the results as a primary treatment for prostate cancer have not been good so you would probably have to go overseas to get it and given his emotional state, do you think he would cope well with going for an experimental approach?

Proton beam does seem to be emerging as a good salvage treatment though.

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

User
Posted 16 Nov 2018 at 01:03

My 20 year old daughter passed away nearly 6 years ago. We watched her suffer for most of her life from a degenerative brain disease. The pain today can still be too much some days. Then my dad 3 years ago suddenly to sepsis. My auntie start of the year to lung cancer. I'm too scared to go there with that conversation.The thought of losing my husband to, well I just can't. 

It's nice to be important, but more important to be nice! 

User
Posted 26 Nov 2018 at 20:47

So today hubby went to hospital to have his catheter removed. He has had infections since inserted and is so uncomfortable with it. He hates it. He had plenty to drink before and during his visit. However he passed no urine in the 3 hours he was there. He tried to self catheterise with a small tube but to no avail, to painful. Sadly the catheter was put back in. Urine then came out straight away. He is gutted by this and is very down this evening. He was warned that the bladder may not be able to contract anymore and if surgery is decided to widen his tube does not work then the catheter would be permanent. Surely more time should of been given? Sadly I was at work during this procedure. Also he has been told the catheter needs to be removed before radiotherapy which starts end of January. However the nurse today told him otherwise. What are others experiences of catheters being removed and how long did it take you to urinate? 

It's nice to be important, but more important to be nice! 

User
Posted 26 Nov 2018 at 21:08

My OH had radiotherapy with a catheter in place. No problems at all.  In some respects it was a bonus as comfort stops were not needed during the hour plus journey each way. The catheter was removed roughly 6 weeks after radiotherapy ended. All has been well since.

User
Posted 26 Nov 2018 at 21:38

LMC

I can only give you the story of my experience, your OHs medical team should know what they are doing. I had surgery and delveloped a stricture in the urethera, i then had to have salvage RT. I had a supra pubic catheter(SPC) fitted just before RT as insurance against the urethra closing up. A SPC is surgically fitted  about 100 mm below the belly button. You oh did the right thing drinking plenty of water, but slow and steady is what works for me. I have been urethraly catheterised around 10 times, being relaxed when going through the trial without catheter (twoc) always worked for me. Self catheterization also requires a degree of relaxation and a positive mind set.

Soreness at the end of the penis caused be the catheter rubbing can be reduced by the use of instillagel or Hydro-caine, they contain anesthetic, antiseptic and lubricant most chemists stock the instillagel at around £3 a tube. If he has a large catheter, size 18 or above the ache can be unpleasant to tolerate.

Hope you get thing sorted 

 

Thanks Chris

Edited by member 26 Nov 2018 at 21:39  | Reason: Not specified

User
Posted 26 Nov 2018 at 23:49
It sounds like they are considering a TURP, an operation to take a core out of the middle of the prostate to take pressure off the urethra. Does that ring any bells?

They were probably also hoping that the hormone treatment will reduce the prostate size without them needing to do the TURP - perhaps this was a bit too soon.

As for the 3 hour thing- if they could see that his bladder was full but he wasn't passing any urine, it would have been irresponsible to leave him any longer as it could cause kidney damage. When does he have to go back for another try?

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

User
Posted 17 Jan 2019 at 22:17

So hubby was meant to go for his mapping 4th Jan. He got a call the day before from the hospital asking if he was attending and all was OK. He said yes. They then asked how he was coping without the catheter and he said it's still in!!! So the appointment was cancelled. So today back to the oncology consultant to be told they now want to change the treatment plan. Chemotherapy, 6 sessions every 3 weeks. A break, then radiotherapy. New trial research results show using chemo aswell helps keep the psa score down longer. This is all very new she said with the consultant meeting only taking place a couple of weeks ago. Teams around the country may not know yet as its still rolling out. They wanted to start next week but he said no. He has urology next week and he wants to try again and take the catheter out first. He says he now has urges to go unlike last time they tried to take it out and he couldn't go. So fingers crossed or it will be the operation, turp. However his Psa has come down from 33.41 to 8.41 from a blood test a few weeks ago. More blood was taken today so hopefully it's fallen further. Has anyone else had chemo and radio for locally advanced? 

It's nice to be important, but more important to be nice! 

User
Posted 17 Jan 2019 at 22:38

LMC

I had to have a supra pubic catheter put in before they would give me Salvage RT. The purpose of my SPC was insurance against the stricture in the urethra closing up.

Thanks Chris

 

User
Posted 18 Jan 2019 at 13:19

He's just had a phone call from the hospital. They are trying again Thursday to remove the catheter and see how he gets on. He hates it with a passion. I really hope he can pass urine without it this time! Did anyone else have chemo followed by radiotherapy? 

It's nice to be important, but more important to be nice! 

User
Posted 18 Jan 2019 at 14:03

Hello, yes my husband had 10 sessions of chemo, then a break and onto Radiotherapy. His PSA to start was 584, that was back in September 2017, he had a PSA test last week and it's 0.3 :) - he is also on 3 monthly Zoladex.

User
Posted 19 Jan 2019 at 09:58

Can I ask what your husbands gleason score and stage he was at? My hubby is stage 3b and gleason 9.  The wording our consultant has put the survival rate has changed from the first time we saw her. At first she said in 5/10 years 30/40% are classed as cured with the rest still having some kind of treatment. However Thursday she said there is a 50% survival rate. Scared both of us as at first we had hope. Now just 50% chance he may not be here in 5 years time 😔. 

It's nice to be important, but more important to be nice! 

User
Posted 19 Jan 2019 at 11:05
Hi . My husband is 4+5 = 9 & T4 aggressive cancer

I think it all depends on how aggressive the cancer is & how they respond to the treatment. I do think with prostrate cancer although lots of men seem to beat all the odds & survive for years others aren't so lucky .

User
Posted 19 Jan 2019 at 22:44

How are you coping with it as his wife? I try to be strong for him and put a positive spin on anything the consultant has said. He has been all over the place and it's been so tough emotionally. If I'm honest I'm scared of what is to come. 

It's nice to be important, but more important to be nice! 

User
Posted 19 Jan 2019 at 23:47
Like you I try to be positive . But I am finding it very hard to sleep as my brain goes into overdrive . It's the not really knowing how thinks will pan out that is so scary .

He got his urologist appointment on Monday 4 th March to see about having his prostrate scraped. Hoping it will shrink down enough so he hasn't got to go through that .

I want to ask this consultant a few questions about having the radiotherapy as originally he said no point in having that . It would be chemo as it was incurable . Then we go to see radiologists & he says no to chemo & full course of radiotherapy. So all very confusing . Is your husband on monthly injections . Mine is due his third on Feb 13th but consultant is switching him to three monthly injections

User
Posted 20 Jan 2019 at 01:05
Generally speaking, urologists are experts in urology (particularly surgery for urological conditions) and oncologists are experts in cancer treatment so it stands to reason that the onco knows more about treating your husband than the urologist does. In most cases, once the urologist knows that PCa is incurable, they hand the case over to oncology unless there is still some specific thing that they might need to be involved in, in your case the possible TURP but in other cases, managing permanent catheters, frequent UTIs, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2019 at 01:09

Originally Posted by: Online Community Member

 At first she said in 5/10 years 30/40% are classed as cured with the rest still having some kind of treatment. However Thursday she said there is a 50% survival rate. Scared both of us as at first we had hope. 

 

Sounds like a bit of misunderstanding or she got her words a bit muddled up. Men diagnosed with incurable PCa tend to be given better odds than 50% chance of surviving 5 years so as a patient being offered radical curative RT/HT it seems more likely that she meant he had a 50% chance of being in remission in 5 years? Worth clarifying when you next see her? 

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

User
Posted 24 Jan 2019 at 22:09

Sadly hubby failed 2nd twoc today so turp op to be done soon. Urology consultant never heard of this chemo research so got macmillan nurse in with us to. He wants meeting with oncology consultants ASAP. So chemo/radio or one or other back off the table for now. He wants to do the turp before any chemo or radio is started. Macmillan nurse said oncology want chemo to be started within the 12 week window from hormone therapy starting as this is what trial results show is best. Urology consultant didn't seem keen at all on chemo starting before op and oncology said they won't wait for the op and recovery to be done first. So deadlock. We are back in on Monday after the two areas have met. Also urology doc has asked for the trial results/data to be emailed to my hubby and himself ASAP before Monday so he can see if benefits outway the risks. So when the consultants seem to differ in opinion on his treatment plan does not give us much confidence and left us some what confused 😕 . 

It's nice to be important, but more important to be nice! 

User
Posted 24 Jan 2019 at 22:44
Hi Miss Chocolate

I agree with you . It can be very confusing. My husband has an appointment with urologist on March 4th.

Hospital rang . He wants to see Bill next Tuesday at 9 .

User
Posted 25 Jan 2019 at 12:07

Well he has just had another hormone injection today. The practice nurse told him as he is type 2 diabetic any chemo would put him on daily insulin injections for life.He currently takes metformin tablets which I believe non diabetics use in the stampede trial. So with the urology consultant worried chemo will affect his upcoming turp operation and now this he is wondering whether the original plan of radiotherapy is best for him after all? 

Edited by member 25 Jan 2019 at 12:09  | Reason: Not specified

It's nice to be important, but more important to be nice! 

User
Posted 28 Jan 2019 at 22:07

Also the urologist says we are aiming for a cure. He has seen men my hubby 's stage cured he said. However oncology say they are aiming to treat/manage it, not cure it. Anyone else been told they would be managed but ended up cured? 

It's nice to be important, but more important to be nice! 

User
Posted 29 Jan 2019 at 08:54
Never think you are cured of cancer until 1 second before you die of something else!

Better to think in terms of remission as I think it helps you deal with stuff and also means you won't ignore symptoms because you are "cured".

User
Posted 01 Feb 2019 at 06:24

Had a chat at work with a diabetes nurse who said what the practice nurse said is rubbish!  Yes he would be closely monitored but insulin is a choice. Chemo with steroids can increase blood sugar levels but there are other choices in tablet form to help lower the levels. She's had over 25 years experience so knows her stuff. Anyhow the trial info about chemo was emailed to hubby. No solid data as of yet due to very new. Also urology consultant feels chemo is a big risk factor for infection with the TURP operation to be done soon. So hubby so far has decided on the original plan of radiotherapy.  His macmillan nurse said scans and bloods will be done again after radiotherapy and a session or 2 of chemo could be done at a later date if they feel it is necessary. The hormone injections will be for 2 years. 

It's nice to be important, but more important to be nice! 

User
Posted 01 Feb 2019 at 19:19
Hi sounds about same as my husband. He has turp opp booked for Friday 15 th . Then mri & bloods end March . Then starts 37 sessions of radiotherapy
User
Posted 07 Feb 2019 at 10:11

All seems to have gone quiet from the hospital for 2/3 weeks and we have heard nothing about his Turp op or any date given yet. So hubby has been leaving messages with the macmillan nurse and urology dept. The continuity of care has been sub standard over all. Differing advice on treatment plan. 3 different consultants seen in urology. The catalogue of errors I've stated previously.Now we are having to chase this. He has a gleason score 9 so this could be spreading further despite the hormone injections. I'm trying to keep calm for him but my impression of a swan gliding calmly on the surface whilst paddling frantically underneath is getting harder to keep up. 

Edited by member 07 Feb 2019 at 10:14  | Reason: Not specified

It's nice to be important, but more important to be nice! 

User
Posted 07 Feb 2019 at 10:38
His hormone injection is the main treatment and his PSA dropped immediately so the cancer will not be spreading. If as you stated previously, your OH has decided to go with the radiotherapy plan, he will be on HT for at least 3 months and probably 6 months before he is called in for a planning appointment. If urology want to arrange a TURP in the meantime then they willl do but I guess clinically it is sensible for them to wait a while now to see how much the tumour shrinks ... it may make the TURP unnecessary.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Feb 2019 at 18:45
Hi Little Miss Chocolate

My husband has his turp opp next Friday . On 29 th March he goes to get his tatoo done & gold marker for radiotherapy then having mri & bloods. Starts his radiotherapy on 29 th April . Can not complain at all about the prompt appointments . Everything is being done as soon as possible . He is due his next injection next Wednesday which will be a three monthly one .

I do hope your husband gets sorted out soon x

 
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