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The wait for results is horrendous

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User
Posted 23 Oct 2017 at 01:04
Hi There

My husband Gary discovered he had a raised PSA of 7.9 and was given a DRE which confirmed a suspicious prostate. He had an MRI quite quickly and his results said he was staged at least T3a possibly T4 with positive lymph nodes but no distant metastasis He had a consultation 3 days after MRI and was told he had prostate cancer and that the tumour had left the prostate and that a biopsy and a bone scan were needed. He had these last week and we are now waiting for the next appointment letter and results. I am anxious to know - does this mean he has advanced prostate cancer or locally advanced. We are praying it has not spread into his bones. He has been given medication to help shrink the tumour and has also began the hormone medication. He is booked in to see the nurse on 25/10 to have his first injection. If there is no cancer on the bones does this mean he will not have to have chemo and if it is in the bones does this mean he has a grim life expectancy He is 60 but is otherwise in good shape and often strangers think he is still in his forties. He is devastated at the news and cannot seem to sleep. I pray that they tell us things aren't as bad as we read on the net. They seem to mention only a 5 year survival rate which is very scary. Could he survive a lot longer or is his stage too advanced. Anyone who has been or is in the same position please let us hear from you many thanks

User
Posted 23 Oct 2017 at 09:46

Hi im sorry your having to go through this awful rollercoaster of p/c , were also quite new to all this even though it seems to have been going on forever, my partner fit healthy no symptoms diagnosed aged 52 with gleason9 t3b p/c if you click on my avatar youl have a bit of info on our situation..im sure many people will respond to you with information and advice, ive found this forum fantastic and people so helpful giving advice and reassurance, also the prostate cancer nurses you can speak to on here are fantastic they can give you lots of info and advice..im sure a few more experienced people will reply to you shortly to help with your questions..in my thoughts..jo.xx

User
Posted 23 Oct 2017 at 10:35

Hi Ang57,

Your husband sounds to be pretty much where I was in May this year. Take a look at my profile and you can see my route so far. I opted for the early Chemo as I have locally advanced PCa and my Onco felt that an aggressive approach would be the best way forward.

There is no doubt the waiting for results is the worst but once you know then you can prepare with all the information available on this site and from the experience of many others. 

However difficult it may be at times, maintaining a positive attitude is key to helping in the fight against our unwelcome guest!

Ian

Edited by member 23 Oct 2017 at 10:36  | Reason: Not specified

User
Posted 23 Oct 2017 at 11:54
Hi

Ten years ago my husband was in a similar place to yours, mind you no one is exactly the same, but ten years later he is still doing well. Maybe the hormone injection was to help shrink the tumour?

Good luck in getting the results, I know it is a waiting game but in ten years I guess we've become patient and kind of philosophical. The only advice that I would give is take lots of notes, ask for a copy of the letter that goes to your g.p. This forum is wonderful and gives so much support.

Good luck

User
Posted 23 Oct 2017 at 13:04

HT is a quite usual approach but as to further treatment, it can vary due to your OH response to the HT and his individual circumstances and the way his onco determines most appropriate. It is much too early at this point in time to consider how many remaining years he has. The introduction of further down the line treatment/medication means that the lifespan of men continues to increase regardless of predictions which are largely based on treatment that was given years previously and has since been refined/improved in a number of ways.

I wish him well on his cancer journey.

Barry
User
Posted 23 Oct 2017 at 13:34

Hi Ang57. I also found the waiting absolutely horrendous. My husband's PSA was over a thousand and so we suspected the worst. He also had horrific bone pain in many places so I think we were prepared for the diagnosis. So for you worst case scenario. But even for cases like my husband there are many possible treatments although not a cure so far. Once he started on Hormone Therapy the bone pain reduced and he eventually came off all pain killers. Just that treatment had a great effect and his PSA was down to 12 before the start of Chemo. The idea of early Chemo is to keep the HT working for longer. He did not find Chemo as bad as a lot of others on here and has worked most days. He has just finished his last Chemo and PSA was down to 1.4. Hopefully scans fairly shortly to show how much improvement. I'm sure a positive attitude helps and keeping as active as possible without overdoing things. Best wishes for your next appointment.

User
Posted 23 Oct 2017 at 15:25
Hi Angie

I know exactly what you mean about the wait being horrendous. We had to wait 4 months at our local hospital to find out my husband had PCa. After his MRI about 5 weeks in they sent him an appointment for February next year! Some men might have thought they were in the clear but when he phoned to query this it turned out there was 2 areas of tumour in his prostate. More waiting and eventually he had a Template biopsy which confirmed the cancer. They even called us in 2 weeks before the biopsy results were in and then asked us why we were there? We were seen by a Macmillan specialist nurse before diagnosis so I was beside myself as we then went away and had to wait another 2 weeks very much fearing the worst. I had noted on his notes below the MRI report T2c and a list of 3 & 4's. I knew this to be a cancer stage and presumably Gleason scores so did more research and frightened myself even more.

I really hope you get your results very quickly as I know every day spent waiting is agony as much for us as wife's/ partners.

After reading as much as I have come to the conclusion that any grade of cancer can have different outcomes. I have read about men diagnosed with very low grade disease going on to have serious problems but also men with very advanced still being very much alive and relatively well many many years later. It's just that we don't know. I am finding the uncertainty really hard to cope with but I guess we all eventually

put it to the back of our minds at least some of the time. I don't think the doctors always know either. ( Probably why they leave it to the man to decide how they want it treated/ or not as the case may be) I don't know of any other cancers where that happens. They can usually advise you of the best treatment for you.

My husband is opting for the robotically assisted Prostatectomy but again we will not know for certain if this has been successful. We just have to hope.

All the best and hopefully your husband's treatment will go well. Lets us know how you get on. X

User
Posted 28 Oct 2017 at 19:56

Hi,
Ang57. PSA 19 had T3b locally advanced. And bone scans, which were clear. The chemo may be a prelude
to an operation. It should still be local and in my case the op (Brachytherapy) was successful.

Otto

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User
Posted 23 Oct 2017 at 09:46

Hi im sorry your having to go through this awful rollercoaster of p/c , were also quite new to all this even though it seems to have been going on forever, my partner fit healthy no symptoms diagnosed aged 52 with gleason9 t3b p/c if you click on my avatar youl have a bit of info on our situation..im sure many people will respond to you with information and advice, ive found this forum fantastic and people so helpful giving advice and reassurance, also the prostate cancer nurses you can speak to on here are fantastic they can give you lots of info and advice..im sure a few more experienced people will reply to you shortly to help with your questions..in my thoughts..jo.xx

User
Posted 23 Oct 2017 at 10:35

Hi Ang57,

Your husband sounds to be pretty much where I was in May this year. Take a look at my profile and you can see my route so far. I opted for the early Chemo as I have locally advanced PCa and my Onco felt that an aggressive approach would be the best way forward.

There is no doubt the waiting for results is the worst but once you know then you can prepare with all the information available on this site and from the experience of many others. 

However difficult it may be at times, maintaining a positive attitude is key to helping in the fight against our unwelcome guest!

Ian

Edited by member 23 Oct 2017 at 10:36  | Reason: Not specified

User
Posted 23 Oct 2017 at 11:54
Hi

Ten years ago my husband was in a similar place to yours, mind you no one is exactly the same, but ten years later he is still doing well. Maybe the hormone injection was to help shrink the tumour?

Good luck in getting the results, I know it is a waiting game but in ten years I guess we've become patient and kind of philosophical. The only advice that I would give is take lots of notes, ask for a copy of the letter that goes to your g.p. This forum is wonderful and gives so much support.

Good luck

User
Posted 23 Oct 2017 at 13:04

HT is a quite usual approach but as to further treatment, it can vary due to your OH response to the HT and his individual circumstances and the way his onco determines most appropriate. It is much too early at this point in time to consider how many remaining years he has. The introduction of further down the line treatment/medication means that the lifespan of men continues to increase regardless of predictions which are largely based on treatment that was given years previously and has since been refined/improved in a number of ways.

I wish him well on his cancer journey.

Barry
User
Posted 23 Oct 2017 at 13:34

Hi Ang57. I also found the waiting absolutely horrendous. My husband's PSA was over a thousand and so we suspected the worst. He also had horrific bone pain in many places so I think we were prepared for the diagnosis. So for you worst case scenario. But even for cases like my husband there are many possible treatments although not a cure so far. Once he started on Hormone Therapy the bone pain reduced and he eventually came off all pain killers. Just that treatment had a great effect and his PSA was down to 12 before the start of Chemo. The idea of early Chemo is to keep the HT working for longer. He did not find Chemo as bad as a lot of others on here and has worked most days. He has just finished his last Chemo and PSA was down to 1.4. Hopefully scans fairly shortly to show how much improvement. I'm sure a positive attitude helps and keeping as active as possible without overdoing things. Best wishes for your next appointment.

User
Posted 23 Oct 2017 at 15:25
Hi Angie

I know exactly what you mean about the wait being horrendous. We had to wait 4 months at our local hospital to find out my husband had PCa. After his MRI about 5 weeks in they sent him an appointment for February next year! Some men might have thought they were in the clear but when he phoned to query this it turned out there was 2 areas of tumour in his prostate. More waiting and eventually he had a Template biopsy which confirmed the cancer. They even called us in 2 weeks before the biopsy results were in and then asked us why we were there? We were seen by a Macmillan specialist nurse before diagnosis so I was beside myself as we then went away and had to wait another 2 weeks very much fearing the worst. I had noted on his notes below the MRI report T2c and a list of 3 & 4's. I knew this to be a cancer stage and presumably Gleason scores so did more research and frightened myself even more.

I really hope you get your results very quickly as I know every day spent waiting is agony as much for us as wife's/ partners.

After reading as much as I have come to the conclusion that any grade of cancer can have different outcomes. I have read about men diagnosed with very low grade disease going on to have serious problems but also men with very advanced still being very much alive and relatively well many many years later. It's just that we don't know. I am finding the uncertainty really hard to cope with but I guess we all eventually

put it to the back of our minds at least some of the time. I don't think the doctors always know either. ( Probably why they leave it to the man to decide how they want it treated/ or not as the case may be) I don't know of any other cancers where that happens. They can usually advise you of the best treatment for you.

My husband is opting for the robotically assisted Prostatectomy but again we will not know for certain if this has been successful. We just have to hope.

All the best and hopefully your husband's treatment will go well. Lets us know how you get on. X

User
Posted 28 Oct 2017 at 19:56

Hi,
Ang57. PSA 19 had T3b locally advanced. And bone scans, which were clear. The chemo may be a prelude
to an operation. It should still be local and in my case the op (Brachytherapy) was successful.

Otto

 
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