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 08:34
| Reason: Spelling mistake
It's nice to be important, but more important to be nice! |
User
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
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
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
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
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
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".
Show Most Thanked Posts
User
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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