Hubby recently diagnosed

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

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? 

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. 

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.

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. 

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.

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. 

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.

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

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.

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 .

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

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? 

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 .

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? 

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. 

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

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

Is there a wives thread/group on here? I think it would be useful.

LMC speak to your Specialist nurse with your concerns. Why was your husband given a catheter initially? 

My hubbie was diagnosed 23rd May, following a biopsy two weeks earlier. He then had a negative bone scan, and then MRI which showed Gleason 7, 4+3. Had four weeks tablets, and first injection. Expecting radiotherapy to start October. So far so good. My main worry is side effects and unpredictability. For now, life goes on as relatively normal. Just waiting for ED to kick in and not looking forward to it, 

Sorry to hear your story. You were very lucky that your husband was diagnosed so quickly and treated so soon, we have gone over 5 weeks with nothing happening and only now are we making progress with at last a proper diagnosis - but had to go private to get it! I have a question. What is this Gleason score? 

Just wanted to say hello ...... and think that a wife/partners group would be so helpful ( for me anyway ) . 

I’m new and waiting for bone scan on Wednesday then results following Tuesday . Gleason 3+5 =8 . No idea if it’s spread further. 

Yes Docetaxel (chemo) for 6 sessions every 3 weeks is a good standard treatment.  It cleared most of my husband's bone metastasis.  He was PSA 41 and Gleason 10.  Unfortunately his PSA is on the rise again and now he is not only on hormone therapy shots every 12 weeks but enzalutamide every day as well.  But his bone scan looks good with only a few spots left.  Our oncologist at Mayo Clinic in Rochester MN says the chemo regiment is important to do early on.  Glad you are doing it.  I am terrified every day, my hubby is only 62 and before this the picture of health.  We are told his cancer is aggressive and we will be looking at a lot of things to keep him alive.  It's a grim outlook and most days I feel all the joy has gone out of life for us.  I hate it, and pray daily for hope.  Praying for you too sweetie.  I think your hubby has a great chance based on what you have described.