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User
Posted 03 Sep 2016 at 11:59

Hi.

Not feeling so good at the moment.

Hubby diagnosed in June. PSA originally 205 but went up higher after another PSA test. Bone scan positive for mets and biopsy - gleason 9. CT scan still awaiting results but onco thinks nothing into the soft tissue as far as he can tell except maybe lymph nodes.

First onco appt 12th aug and he prescribed bicalutamide on top of the prostap injection. Also starts first course of chemo 8th sept. Onco was frank to say the least and I came away feeling as devastated as when he was first diagnosed.

Today we received the letter the onco had sent to the gp practice. I don't know why I feel so bad because we already know he has advanced pc, but this completely floored me all over again. It said 'He has aggressive prostate cancer which he is aware will progress faster than other cancers with or without treatment' - the letter went on to describe current meds and planned chemo.

Yes, I am aware hubby has advanced pc and that it's incurable, but at this moment in time he is still physically so strong and well. He is 59 and has not ever had any major health problems and has always been very strong and capable. The prostap and bicalutamide are making him tired and hot at times but that is bearable and to be expected. I am dreading the start of chemo next week but we are arming ourselves with as much knowledge as possible. What is making me feel so bad right now is this letter. So many people on this site have had psa as high and even higher and with advanced pc and are still here after many years. If these internet sites weren't available we would probably be planning his funeral by now and getting everything in order thinking time was short.

I am sorry to be so negative but he is currently busy doing jobs around the house and looks more or less normal. Hard to believe he is ill at all. I am not in denial. I know he is incurable, but seeing everything written down has shaken me to the core

Ruth

User
Posted 03 Sep 2016 at 12:59

I'm so sorry Ruth
It's really tough isn't it , and you are in the same boat as my wife. I forget sometimes just how much my cancer must be affecting her. Although not as advanced ( yet ) as your hubby , we were also very shocked to read a letter at the doctors which essentially hadn't been said to our face. I was due to have RT after an unsuccessful operation , but the letter to the doctor clearly stated the RT was not expected to extend my life , but prevent a possible recurrence in that area. We were shocked. I didn't have the RT in the end but am stuck on an HT plan at the mo.
I guess you have to remember many men live a long time with this disease despite undesirable side-effects. I wish you both the best
Chris

User
Posted 03 Sep 2016 at 14:21

Dear Ruth,

I'm so sorry that the letter to the GP has upset you so much.

This is my second attempt to support you as the first, when I re-read it, just didn't say what I wanted to say and now I find it hard to put my thoughts into words of comfort.

Your man is a very lucky man in that he has you by his side, fighting every step of the way with him.

While he is fit and well,l'd enjoy all the things that you can, be is a bottle of wine or a walk in the woods.

I wish him well with the chemo and hope that the side effects are minimal

Best Wishes to both of you

Sandra

****

Edited by member 03 Sep 2016 at 15:14  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 03 Sep 2016 at 18:11

Well that helps you to understand why the onco didn't want to talk about IHT to you. Does it say anywhere on the paperwork what type of prostate cancer he has? The most common is adenocarcinoma.

What the onco doesn't know yet is how hubby will respond to the chemo / HT combo - it may be that he just needed you to be very clear that 10-15 years plus is not so likely in your case. Having chemo while he is well is more sensible than later when he is much weakened so as traumatic and shocking as it all seems right now, perhaps just thank God that he is so fit & healthy.

Thinking about you.

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

User
Posted 04 Sep 2016 at 00:30

Hi Ruth

I really feel for you. We had a couple of copies of letters to our GP that really upset us, saying things we had not been told at appointments. The worst was the one saying there was nothing else they could do which arrived just a few days before my husband died. He was well enough though to open and read the letter when it came which as you can imagine was awful. Definitely more emphasis is needed for some doctors in communicating with their patients honestly but sympathetically.

But it is very early days for you and your husband and he is starting early chemo which was not available for my husband and which looks very promising in extending life expectancy. Also it looks like you've already seen that there are a good many members here who are doing well despite very high psa, bone mets, aggressiveness etc. And that doesn't take into account those who are doing well and so don't use this forum.

Try to enjoy the fact that he is so well now and long may it continue. 

Best wishes

Rosy

User
Posted 04 Sep 2016 at 02:01

He might be the best onco in the country but he doesn't sound like a barrel of laughs. You could ask for a second opinion from another onco, just to see whether someone else has a more optimistic perspective on it all. Someone else on here had an onco from doom-land and went to see someone else who was much more upbeat - it made such a difference to hear positive messages and gave them a real boost. I am not sure but Irun maybe?

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

User
Posted 04 Sep 2016 at 17:14
Hi Ruth

I have been following your posts and it's almost as though it was me writing, you describe exactly what my OH and myself have been going through these last 3 months.

My OH had a PSA test in May ( purely because his brother had been diagnosed PC earlier this year ) the result was a PSA of 24 he was referred to the oncologist who confirmed by a DRE that he had cancer, we were absolutely devastated and in total shock, we must have recounted the conversation with the oncologist over and over again just to make sure we both heard the same, total disbelief, he was a very fit 69yr old with no symptoms apart from getting up during the night once or twice to pee.

The following few weeks were dreadful my OH took the news very badly and began to suffer from awful anxiety attacks, unable to sleep and was convinced he was dying. The waiting for bone scan (clear) MRI and biopsy was endless plus the actual invasivness of the tests took there toll and he was prescribed anti depressants and sleeping tablets.

We finally had the next Urology appointment and the results, Gleeson score was 5+4=9 aggressive cancer T3b with spread to the Lymph nodes in the pelvic area, a CAT scan was requested to check for further spread, the Urologist was very kind and honest with us but we were devastated with the results. Hormone treatment was started Bicalutamide and two weeks later his first implant of Zoladex.

We saw the Oncologist last Wednesday, there was no good news there either, although the CAT scan results showed no disease anywhere else he said that there could still be microscopic spread that hadn't showed up yet.

OH is to start 6 cycles of Chemotherapy on 16th September.

I try very hard to stay positive for him, and our three daughters and grandchildren but it's hard going, I find great comfort in reading the posts it's good to know we are not alone, although it feels a very lonely place to be at the moment.

Liz

User
Posted 04 Sep 2016 at 18:52
Ruth and Liz

both of your Husbands have had devastating news, delivered in any way it is horrible for them and both bewildering and frightening for you as well.

They are both getting the fairly recently recognised gold standard treatment for the stage of cancer that they have. Combined HT and the 6 cycles of Docetaxel chemotherapy. This combination was found very beneficial in the stampede trials. Its a hit it hard and hit it quickly approach that has worked for many in reducing all the cancer markers to really low levels and potentially extending their life expectancy considerably.

Sadly my Husband was diagnosed before this new approach was considered normal he was one of a small minority of very unfortunate men who are completely unresponsive to any treatment.

you might like to read a few profiles of Men like Siness, Irun and bladerunner all have had the combination treatments early on and all are doing really well.

It is very hard being the wife or partner, knowing what to say and just how to be supportive so please if you have any questions or just want to chat then post here and someone will try and help.

This forum was my absolute lifeline during Mick's illness, I made friends here that will be friends for life. Their continued support has been invaluable.

Best wishes

xxx

Mo

User
Posted 04 Sep 2016 at 22:26

Thank you Mo and Ruth for your replies.

Mo sincere condolences to you for the loss of your husband, and how generous of you to offer support to others going through this dreadful disease. I will look at the posts of the people you mentioned and try to keep positive, many thanks.

Ruth
Good luck to your Hubby for his Chemo, fingers crossed for minimum side effects and good outcomes.

Liz

User
Posted 04 Sep 2016 at 22:49
Just thought I would chip in and saw that my SS (mo has already replied )

I am going to come from a differnt angle Charlie ? Charlotte ? I have just had to dig through my basket for my glasses .i have got a special colour coardinated basket in my lounge . If you can imagine a giant hand bag that you can't find anything in then that is my basket. I have a special pair of glasses that I need for close up things . I think your post needs my close up glasses . 😀

So yes I am not going to shilly shilly there isn't any point because you know the scores on the doors . GPs letters they are exactly that from one Dr to another they are just a correspondence of facts. I felt just the same as you they are talking about a patient there is no human feeling at that point sad to say you are just an NHS number.

Things do get better though I can promise that once you get further down the path of oncology you revert from a number to a face and then to a personality. .

I promise you will get passed the letter (I have been there) .

So anyway it has been pretty poop news that you have been given trust me when I say I have walked your shoes . If you have nerves of steel and twenty hours to spare then click on my avatar. It is a bit like war and peace in that it drags on a bit 😀

So I will do a speed dial journey for you and I hope this gives you Hope ( something I thought was an absolute joke when we started our journey)

Initial diagnosis PSA 130000

Biopsy not done ( not necessary)

Ext bone mets full torso

Lymph nodes positive

That was 3 years ago in May , ok we have had our ups and downs but Trevor is looking and feeling good , still driving ( me mad)!😊

My advice would be put that letter in a not to be opened file and get on with living every day because if we had wasted 3 years on the results of of our letters then we would have wasted an awfull lot of living .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
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User
Posted 03 Sep 2016 at 12:59

I'm so sorry Ruth
It's really tough isn't it , and you are in the same boat as my wife. I forget sometimes just how much my cancer must be affecting her. Although not as advanced ( yet ) as your hubby , we were also very shocked to read a letter at the doctors which essentially hadn't been said to our face. I was due to have RT after an unsuccessful operation , but the letter to the doctor clearly stated the RT was not expected to extend my life , but prevent a possible recurrence in that area. We were shocked. I didn't have the RT in the end but am stuck on an HT plan at the mo.
I guess you have to remember many men live a long time with this disease despite undesirable side-effects. I wish you both the best
Chris

User
Posted 03 Sep 2016 at 14:21

Dear Ruth,

I'm so sorry that the letter to the GP has upset you so much.

This is my second attempt to support you as the first, when I re-read it, just didn't say what I wanted to say and now I find it hard to put my thoughts into words of comfort.

Your man is a very lucky man in that he has you by his side, fighting every step of the way with him.

While he is fit and well,l'd enjoy all the things that you can, be is a bottle of wine or a walk in the woods.

I wish him well with the chemo and hope that the side effects are minimal

Best Wishes to both of you

Sandra

****

Edited by member 03 Sep 2016 at 15:14  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 03 Sep 2016 at 18:11

Well that helps you to understand why the onco didn't want to talk about IHT to you. Does it say anywhere on the paperwork what type of prostate cancer he has? The most common is adenocarcinoma.

What the onco doesn't know yet is how hubby will respond to the chemo / HT combo - it may be that he just needed you to be very clear that 10-15 years plus is not so likely in your case. Having chemo while he is well is more sensible than later when he is much weakened so as traumatic and shocking as it all seems right now, perhaps just thank God that he is so fit & healthy.

Thinking about you.

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

User
Posted 03 Sep 2016 at 19:57

Hi Sandra and Chris. Thinks for your replies and words of comfort. 

We are continuing as normal as much as possible. Have been shopping today and hubby was charging around town and quite upbeat. As fit as ever. You would never know he's ill by looking at him. No aches or pains. Lifting bags in and out the car. More energy than me actually!

I think I'm annoyed at the Oncologist really. He told us a copy of the letter to the gp would be sent to us,and told us at our appt in August that he was writing it that day. Of course we want the truth and we knew what we were dealing with anyway, but he had nothing positive at all to say. He said 'I'm sorry' a few times and 'PC is a horrible cancer' mainly to me. When I asked a question about hubby's ALP blood test result, he persisted in asking me where I worked, and what was my job position within the NHS. Don't get me wrong - he wasn't rude or unempathetic, but then when hubby went out with the nurse to get weighed and measured,he said to me 'We can have an academic debate about intermittent hormone treatment if you want'  All this just by querying an ALP number. It was our first meeting with an Oncologist and I suppose I wanted some reassurance despite the dire diagnosis and prognosis. I pointed out the psa had dropped to 2.7 within a short period, but he didn't say much about that. Just that he wanted to get the testosterone to castrate level and that 0.9 was still too high and prescribed the Bicalutamide.

Hi Lyn. Have just read your message while I am still typing this. I did check the paperwork before. Just said prostate cancer with mets. I agree that he needed to be clear with us that this just isn't likely to be a prostate cancer that you can cure or even treat easily. Think I feel aggrieved because the onco seemed to predict how he would be before he'd been on it for any length of time. As far as I am aware some of the most lethal pc's do not give off a lot of psa but I don't really know. Anyway rant over. Feels better to get this off my chest.

 

Edited by member 03 Sep 2016 at 20:02  | Reason: Not specified

User
Posted 04 Sep 2016 at 00:30

Hi Ruth

I really feel for you. We had a couple of copies of letters to our GP that really upset us, saying things we had not been told at appointments. The worst was the one saying there was nothing else they could do which arrived just a few days before my husband died. He was well enough though to open and read the letter when it came which as you can imagine was awful. Definitely more emphasis is needed for some doctors in communicating with their patients honestly but sympathetically.

But it is very early days for you and your husband and he is starting early chemo which was not available for my husband and which looks very promising in extending life expectancy. Also it looks like you've already seen that there are a good many members here who are doing well despite very high psa, bone mets, aggressiveness etc. And that doesn't take into account those who are doing well and so don't use this forum.

Try to enjoy the fact that he is so well now and long may it continue. 

Best wishes

Rosy

User
Posted 04 Sep 2016 at 02:01

He might be the best onco in the country but he doesn't sound like a barrel of laughs. You could ask for a second opinion from another onco, just to see whether someone else has a more optimistic perspective on it all. Someone else on here had an onco from doom-land and went to see someone else who was much more upbeat - it made such a difference to hear positive messages and gave them a real boost. I am not sure but Irun maybe?

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

User
Posted 04 Sep 2016 at 17:14
Hi Ruth

I have been following your posts and it's almost as though it was me writing, you describe exactly what my OH and myself have been going through these last 3 months.

My OH had a PSA test in May ( purely because his brother had been diagnosed PC earlier this year ) the result was a PSA of 24 he was referred to the oncologist who confirmed by a DRE that he had cancer, we were absolutely devastated and in total shock, we must have recounted the conversation with the oncologist over and over again just to make sure we both heard the same, total disbelief, he was a very fit 69yr old with no symptoms apart from getting up during the night once or twice to pee.

The following few weeks were dreadful my OH took the news very badly and began to suffer from awful anxiety attacks, unable to sleep and was convinced he was dying. The waiting for bone scan (clear) MRI and biopsy was endless plus the actual invasivness of the tests took there toll and he was prescribed anti depressants and sleeping tablets.

We finally had the next Urology appointment and the results, Gleeson score was 5+4=9 aggressive cancer T3b with spread to the Lymph nodes in the pelvic area, a CAT scan was requested to check for further spread, the Urologist was very kind and honest with us but we were devastated with the results. Hormone treatment was started Bicalutamide and two weeks later his first implant of Zoladex.

We saw the Oncologist last Wednesday, there was no good news there either, although the CAT scan results showed no disease anywhere else he said that there could still be microscopic spread that hadn't showed up yet.

OH is to start 6 cycles of Chemotherapy on 16th September.

I try very hard to stay positive for him, and our three daughters and grandchildren but it's hard going, I find great comfort in reading the posts it's good to know we are not alone, although it feels a very lonely place to be at the moment.

Liz

User
Posted 04 Sep 2016 at 18:52
Ruth and Liz

both of your Husbands have had devastating news, delivered in any way it is horrible for them and both bewildering and frightening for you as well.

They are both getting the fairly recently recognised gold standard treatment for the stage of cancer that they have. Combined HT and the 6 cycles of Docetaxel chemotherapy. This combination was found very beneficial in the stampede trials. Its a hit it hard and hit it quickly approach that has worked for many in reducing all the cancer markers to really low levels and potentially extending their life expectancy considerably.

Sadly my Husband was diagnosed before this new approach was considered normal he was one of a small minority of very unfortunate men who are completely unresponsive to any treatment.

you might like to read a few profiles of Men like Siness, Irun and bladerunner all have had the combination treatments early on and all are doing really well.

It is very hard being the wife or partner, knowing what to say and just how to be supportive so please if you have any questions or just want to chat then post here and someone will try and help.

This forum was my absolute lifeline during Mick's illness, I made friends here that will be friends for life. Their continued support has been invaluable.

Best wishes

xxx

Mo

User
Posted 04 Sep 2016 at 21:06

Thanks everyone for your replies

Mo. I am sorry to hear your husband was unresponsive to treatment. I know this does happen in a minority of men and it is so unfortunate. You are an amazing person to continue to support others who have been affected with this devastating disease. Thank you for your response.

Liz. Your story does sound a lot like ours. Your shock and devastation to the news is so familiar to our family. The disbelief and the denial. How could someone who appears so healthy actually be so ill? We have 3 sons who have been heartbroken by the news, but have still been so supportive. I don't know how we would have coped without them. Our eldest is married with a 2 year old son who is an absolute joy to us. He has a busy life with a demanding job, but he and his wife would drop everything in a heartbeat if we needed them. The other 2 still live at home with us and they are both wonderful. 

I am sorry your OH took the news so badly. The cancer diagnosis itself is awful enough, and the anxiety and panic that goes with it is a reaction that goes hand in hand but can become uncontrollable. I hope the anti-depressants and sleeping tablets are helping him.  My OH suffers terribly too but he does tend to keep it to himself a lot of the time. I can tell when he's fretting though. Sometimes his expression is so pained. He does seem to be able to switch off at times though, which is more than I can do! It's good we've found this site. Remaining positive is so hard. Sometimes when life is carrying on around you as normal - at work or out and about the loneliness is consuming. It's then that I try and remind myself that others who are near by may be feeling the same but are hiding it just like us.

Ruth

 

 

User
Posted 04 Sep 2016 at 22:26

Thank you Mo and Ruth for your replies.

Mo sincere condolences to you for the loss of your husband, and how generous of you to offer support to others going through this dreadful disease. I will look at the posts of the people you mentioned and try to keep positive, many thanks.

Ruth
Good luck to your Hubby for his Chemo, fingers crossed for minimum side effects and good outcomes.

Liz

User
Posted 04 Sep 2016 at 22:49
Just thought I would chip in and saw that my SS (mo has already replied )

I am going to come from a differnt angle Charlie ? Charlotte ? I have just had to dig through my basket for my glasses .i have got a special colour coardinated basket in my lounge . If you can imagine a giant hand bag that you can't find anything in then that is my basket. I have a special pair of glasses that I need for close up things . I think your post needs my close up glasses . 😀

So yes I am not going to shilly shilly there isn't any point because you know the scores on the doors . GPs letters they are exactly that from one Dr to another they are just a correspondence of facts. I felt just the same as you they are talking about a patient there is no human feeling at that point sad to say you are just an NHS number.

Things do get better though I can promise that once you get further down the path of oncology you revert from a number to a face and then to a personality. .

I promise you will get passed the letter (I have been there) .

So anyway it has been pretty poop news that you have been given trust me when I say I have walked your shoes . If you have nerves of steel and twenty hours to spare then click on my avatar. It is a bit like war and peace in that it drags on a bit 😀

So I will do a speed dial journey for you and I hope this gives you Hope ( something I thought was an absolute joke when we started our journey)

Initial diagnosis PSA 130000

Biopsy not done ( not necessary)

Ext bone mets full torso

Lymph nodes positive

That was 3 years ago in May , ok we have had our ups and downs but Trevor is looking and feeling good , still driving ( me mad)!😊

My advice would be put that letter in a not to be opened file and get on with living every day because if we had wasted 3 years on the results of of our letters then we would have wasted an awfull lot of living .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
 
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