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Hubby recently diagnosed

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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

User

Posted 13 Jun 2019 at 10:51

So it will be a year in August since hubby was diagnosed with stage 3b prostate cancer. Gleason score 9. Still no chemo or radiotherapy started. Just hormone injections. He has a catheter.We have been told radiotherapy cannot be done with catheter still in. A difference of opinion by urology and oncology consultants on chemo instead. Oncology want chemo, urology don't due to the TURP operation yet to be done. Infection risks. So hubby agreed with urology consultant. The catheter has caused him no end of pain and infections.Also recently a large bladder stone has been diagnosed as the cause that pops the balloon in the catheter, hence they sometimes fall out. His TURP operation was cancelled in theatre on 8th March due to high blood pressure. Blood pressure meds were only started by the GP surgery 2 days before the op date. No where near long enough to take effect. So those tablets did not work despite doubling the dose. He is on new ones now. Back at Dr's tomorrow to test blood pressure and bloods again.Still no date for the TURP /bladder stone op which will now be done at the same time. To try and keep him calm is an understatement, and myself. How on earth is his blood pressure meant to go down?! Both worried cancer could of spread but oncology won't see him until the operation is done as they said nothing they can do yet. He was meant to start radiotherapy January but sadly after 2 failed TWOC's in Dec/Jan that got cancelled and he was put on the waiting list for the TURP. The clock is ticking and I'm scared too much time has now passed to stop it. 😢 Did anyone else have a long delay in any chemo/radiotherapy starting and if so how has it gone? Has the delay affected your survival chances?

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

User

Posted 04 Aug 2019 at 01:05

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,

User

Posted 04 Aug 2019 at 07:38

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

No but there is a Facebook group - some wives want to post things that their partners won't see.

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

User

Posted 04 Aug 2019 at 13:45

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?

User

Posted 04 Aug 2019 at 13:50

Originally Posted by: Online Community Member

What is this Gleason score?

Tooty,

There's a section on Gleason scores elsewhere on the website:

What do my biopsy results mean?

User

Posted 04 Aug 2019 at 21:14

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.

User

Posted 04 Aug 2019 at 22:01

Francine

Without a doubt once you start the prostate cancer journey the waiting between stages is in my opinion the worst. I have been where you are going I was diagnosed in March last year with Gleason 5:4

I then had to wait three weeks before I got my bone scan And luckily I got the all clear. I then moved on to 2 weeks bicalutamide masking tablets and then onto the first hormone therapy injection the final two weeks bicalutamide and then regular three monthly injections.

And luckily I got the all clear. I then moved on to 2 weeks bicalutamide masking tablets and then onto the first hormone therapy injection a final two weeks bicalutamide and then regular three monthly injections.

Three months after starting the hormone therapy I moved on to my four weeks of radiotherapy. 15 months after diagnosis my PSA is now undetectable and I have had my last hormone therapy injection last month and will be stopping for my therapy at the 18 month point as I am doing so well.

I moved on to my four weeks of radiotherapy. 15 months after diagnosis my PSA is now undetectable and I have had my last hormone therapy injection last month and will be stopping for my therapy at the 18 month point as I am doing so well.

There is light at the end of the tunnel so stay positive . If you have any more questions as I have just completed my journey please feel free to ask. I am also a realist because my PSA is undetectable now I will have regular checkups to keep an eye on it and I am prepared that I may have to go back on the hormone therapy for the rest of my life if I get a recurrence of my cancer

User

Posted 05 Aug 2019 at 00:29

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.

User

Posted 05 Aug 2019 at 01:18

Originally Posted by: Online Community Member

Did anyone else have a long delay in any chemo/radiotherapy starting and if so how has it gone? Has the delay affected your survival chances?

For me, it was 10 months from diagnosis and starting HT, until starting RT.

Part of this is was because I had a high PSA (57), and they were concerned for some time that the cancer in the prostate might not explain it, so I had more scans, but eventually they decided there was no spread.

Finally, I delayed the RT by 8 more weeks, because I wanted to get my PSA down to 0.1 before starting RT, as there are two research papers showing this achieves significantly better outcomes. When it got down to 0.18, the oncologist booked the RT. It came through a week faster than we expected and I didn't quite get down to 0.1 - it was 0.12 immediately before the first RT session, and I was happy with that.

I haven't looked into chemo much, but from the RT perspective, delaying it whilst your PSA is still dropping probably increases your survival chances. You don't want to delay until PSA stops dropping though, so make sure you are getting periodic PSA tests if you are deliberately delaying treatments.

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