dealing with diagnosis

User

Posted 13 Mar 2015 at 14:31

Hi everyone.

My husband is 47 and I am 35. We have a 5 year old daughter. My husband's PSA was 46 in October, and since then it has been a whirlwind. It was thought from MRI, bone scans and x rays, that it had not spread, so he had prostatectomy in Jan. However, during surgery, they found it had spread to bladder neck and seminal vesicles. Also to one local lymph node.Diagnosed T3bN1M0. Post surgery his PSA came to 0.9 and they were going to do radiotherapy next. However, he has developed lymphodema in his leg, and after another CT scan they have found a 'suspicious' area higher up. So now they have decided to just give hormone therapy, looking at other options down the line. My husband feels so young to be going through this, and I am devastated, especially for our little girl. We have no idea of outlook as such yet, and I just wondered if any one could give some encouragement I suppose of similar situations, how long will he be well? Some research says that men who had prostatectomy and then hormones for advanced cancer can still live for a number of years. Would value support.

Ali

'Sorrow looks back, worry looks around, but faith looks up'

User

Posted 14 Mar 2015 at 01:28

Hi Ali, my OH was 50 at diagnosis and I was 44 but our 4 children were older than your daughter. The surgeon found during surgery that it had spread to the bottom of his bladder and he went on to have 3 months of HT followed by radiotherapy and then some more HT which he stopped early due to the side effects. We are now 5 years post-op and hopeful that he is well on his way to the official 'remission' letter :-)

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

User

Posted 13 Mar 2015 at 16:10

Hi Ali

Don't despair my husband was dx in October 2012 with advanced pc spread to lymph nodes seminal vesicles and bones.

He has had various treatments and is still doing ok. There are many on here that will be able to give you amore in depth

Answer but you need to stay positive and don't live with pc make it live with you xx

User

Posted 13 Mar 2015 at 16:45

It's a very difficult time for you and your family. But if you read some of the profiles you will see that many men live good quality lives for many years following a diagnosis of advanced Pca.

I'm sure some of those men will share their stories once they see your post

Bri

User

Posted 13 Mar 2015 at 16:56

Hi Ali

I'm so sorry to read this, you are both so young and with a very young child it makes it all much worse somehow. You have both been through so much already, life changing surgery and the fear of what comes next. Do you know your husband's Gleason score? It's an important part of the diagnostic equation. I don't know if this helps a bit, but my hubby was diagnosed over four years ago at age 61, with advanced Prostate cancer and a Gleason score of 10. We were distraught and yet, here we are, still not had to have chemo or any of the newer drugs yet. It's a very unpredictable disease.

Pleased don't hesitate to ask us any questions you may have and please make use of MacMillan for help with finances or emotional issues. Our hospice nurse is wonderful, hospices aren't just for end of life, they help you live with Cancer too.

I know how this all must feel at the moment, so I'm sending you good wishes, please keep us Imformed of progress, I'm very hopeful that the hormone treatment will kick the Cancer into touch for a good long time.

Lots of love

Allison

Edited by member 13 Mar 2015 at 22:10 | Reason: Not specified

User

Posted 13 Mar 2015 at 18:46

Hi Ali,

Welcome but also I am sad to see you posting about you OH and at such a young age. The early days of waiting for all of the results are very stressful we all understand how you are feeling .

In answer to your question yes there is life after diagnosis, Alison has already replied if you click on individual Avatars you will get the full history , Paul (Yorkhull), Alister (Allathays) , Si (Siness) are just a few that are living with advanced disease . Alister has just celebrated 7 years since diagnosis. Of course last but not least my OH was diagnosed in May 2013 with advanced pca spread to bones and lymph nodes etc but here we are nearly 2 years on.

You have made a good choice in joining this site and there is a wealth of information , advice , and sometimes a shoulder to cry on here.

As others have said ask away if you have any questions or if you just need a chat.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Mar 2015 at 19:20

Hi Ali

I was diagnosed over two years ago at the age of 57, with a PSA of 94.4 and suspected lymph node involvement, and decided to have it removed. The report showed I also had spread to the bladder neck and seminal vesicles, but after having 32 lymph nodes removed, none were found to be cancerous, and luckily I don't suffer from lymphodema. My first PSA after RP came back at 0.42 and has been rising. I have undergone RT to the bladder neck and prostate bed. As Bri has said I think you need them to clarify where their concerns are and if the hormones are being used to see if this area of suspicion responds to the treatment, If so will they may consider RT in the future. Was it a PET/CT Scan or a normal CT scan that was performed as the latter would have difficulty picking up the Cancer at such a low level so this may explain why they are not certain in their diagnosis. Do you know the Gleason score after the prostate was examined after removal as this would help to get a clearer picture.

Roy

User

Posted 13 Mar 2015 at 19:55

Hi Ali

So sorry to see you here, but we are a great bunch.

I was diagnosed over two years ago with extensive spread to the bones and have no intention of going anywhere soon.

It is so difficult when you have a young family my twin girls where 9 years old when i was diagnosed and they do pick up on things.

Try to keep positive you have plenty of treatments to go at.

Best Wishes

Si x

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 Mar 2015 at 23:52

Hi Ali

My husband was diagnosed with advanced prostate cancer in lymph nodes and bones at age 54 when my youngest daughter was 12. I was devastated and felt like my whole world has fallen apart.At first Bob didn't want anyone to know of his illness which made things much harder for us as a family.

There are many treatments available and I think once you begin to see responses to them you will feel better.

Bob is almost 4 years on, enjoyed annual ski holidays, walked up Snowden twice, run great north half marathon, continued a full time lorry driving job until just recently and enjoyed family life.

I have learnt to live for each day at a time, and not look too far forward. I hope this gives you hope.

Lesley xx

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User

Posted 13 Mar 2015 at 16:10

Hi Ali

Don't despair my husband was dx in October 2012 with advanced pc spread to lymph nodes seminal vesicles and bones.

He has had various treatments and is still doing ok. There are many on here that will be able to give you amore in depth

Answer but you need to stay positive and don't live with pc make it live with you xx

User

Posted 13 Mar 2015 at 16:34

Hello Ali an welcome.
It's a difficult time for both of you.
I can't help with your questions but I can guarantee that somebody on here will have some answers for you.
Hang in there. Keep strong.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 13 Mar 2015 at 16:45

It's a very difficult time for you and your family. But if you read some of the profiles you will see that many men live good quality lives for many years following a diagnosis of advanced Pca.

I'm sure some of those men will share their stories once they see your post

Bri

User

Posted 13 Mar 2015 at 16:51

Thank you so far to those who have replied. It's just been such a shock since Oct, with originally thinking it was contained, to now hearing it's most likely advanced beyond pelvis.... such a lot to take in, just think we are in shock. Would value any replies from those who have advanced PCa/ partners. Thank you, Mchjoy x

'Sorrow looks back, worry looks around, but faith looks up'

User

Posted 13 Mar 2015 at 16:56

Hi Ali

Lots of love

Allison

Edited by member 13 Mar 2015 at 22:10 | Reason: Not specified

User

Posted 13 Mar 2015 at 17:00

Hi Ali,

My heart goes out to you and your family, such a scary time. There are lots of incredibly supportive folks on here who will relate to your situation.

Do you know your husbands Gleason score as this can indicate how aggressive the disease may be ? We always say on this site that no two men's diseases are the same so it is very hard to give to make comparisons.

Has your husband been offered any clinical trials ? Important to explore every option with you oncology team, some are more conservative with treatments, others want to hit the disease hard as soon as possible. There is some evidence from the CHAARTED study that HT and chemo started as early as possible prolong life in advanced disease. Dont be afraid to ask your oncology team all these questions, sometimes you have to do a bit of pushing yourself, and it helps to learn as much as possible about the illness to put youself in the best position to have these discussions.

With my partner, if I was back at the time he was diagnosed I would have got a second opinion asap as I wasnt happy with the conservative nature of his treatment given how serious his diagnosis was.

He also had lymphoedema. Macmillan had a wonderful free clinic in our area, I had to suss this out myself, GP and oncology didnt know, Very often, this in itself needs specialised treatment. There is also a lymphoedema charity who were very helpful who I found online think it's the National Lymphoedema Network. I see Allison has got there in front of my post, she also has lots of personal experience of advanced disease and will be an invaluable source of information !! I wish you all the best !

Fiona.

User

Posted 13 Mar 2015 at 17:49

Ali

You say there is a suspicious area higher up. Can you provide a bit more detail ie do your mean his leg, in his pelvic area or higher up.his body.

I would want a definite answer about what that is. You need to know to.help you understand/discuss further treatment options. If it's not defintely Pca. The RT could still be on the cards including zapping the effected lymph node.

Bri

User

Posted 13 Mar 2015 at 18:30

Hi Ali,

Just wanted to send you my best wishes and hope everything works out well with you husband's further treatment. It's a worrying time for you but you can be assured of plenty of support here.

I felt very lonely when I was first diagnosed, in spite of a loving family but the support here has really helped me through a very difficult time.

Please continue to post, there is so much useful information on this site that others can provide.

Thinking of you all.

Steve

User

Posted 13 Mar 2015 at 18:46

Hi Ali,

Welcome but also I am sad to see you posting about you OH and at such a young age. The early days of waiting for all of the results are very stressful we all understand how you are feeling .

You have made a good choice in joining this site and there is a wealth of information , advice , and sometimes a shoulder to cry on here.

As others have said ask away if you have any questions or if you just need a chat.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Mar 2015 at 19:20

Hi Ali

Roy

User

Posted 13 Mar 2015 at 19:55

Hi Ali

So sorry to see you here, but we are a great bunch.

I was diagnosed over two years ago with extensive spread to the bones and have no intention of going anywhere soon.

It is so difficult when you have a young family my twin girls where 9 years old when i was diagnosed and they do pick up on things.

Try to keep positive you have plenty of treatments to go at.

Best Wishes

Si x

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 Mar 2015 at 20:40

Hello, I am no expert on this subject, so I can't offer advice. My other half was treated for early prostate cancer in Jan. I just wanted to say I know how you feel, I am 15 years younger than my other half, we have 3 boys with the youngest being 5. He has been treated with brachytherapy (only suitable for early stage) the children are not to sit next to him for 4 months. My thoughts are always to the future and how I would cope if the worst happened. You will see by some stories on here that many brave men seem to fight this desease for years. I wish you all the best.

User

Posted 13 Mar 2015 at 21:58

Wow! I can see everyone on here is very supportive and I wanted to say thank you so much for your help already. It's so comforting to be able to speak to others who understand what we are going through, and who can encourage us to not despair!

The Gleason score was 9. Only one node was found to have PCa in it when dissected/ removed. It was a CT scan which picked up the 'suspicious' area, and all they told my husband was 'it was further up' in his abdomen, but they weren't clear on where. He also isn;t sure if it was another node, or maybe bone. Bless him, I think when he was in there with them, he floundered about questions because it was all so quick, and so much info. I wish I had been with him, but neither of us were expecting that to come up. Apparently an MDT meeting took place, and they still can;t be 100% sure what it is, it kept fading in and out' of the CT scan. SO they are going for hormone initially. He has started some tablets and has 1st injection in a couple of weeks. They will do more scans, to re-check everything as far as I know, in a few weeks after 1st injection. It is all a bit unclear really.

Thank you again to everyone so far, I hope we will get to know some of you through chats on here. You are all so brave, you never really expect cancer to 'happen' to you/ your partner, so it all seems like it's not really happening at times. Keep strong everyone.

Our daughter knows Daddy is not well, but we have just said he has a 'nasty bit' inside him which some magic tablets will make really small and the doctors are doing all they can to help daddy be well again. She is a sensitive little thing anyway, but quite wise beyond her years (her conversations are brilliant!), so she picks up on a lot and I wanted to try to explain it in a way which makes sense but at the same time not frighten her. Every night when I tuck her in I ask if there;s anything she is worried about,or anything she wants to talk about (could be anything), so she has space to say if anything is on her mind. Mostly at the moment, she seems really fine and happy.

Well, we will see how the initial HT goes..

Love Ali

'Sorrow looks back, worry looks around, but faith looks up'

User

Posted 13 Mar 2015 at 22:28

Hi Ali,

Welcome to one of the best resource for support, information and any other help with Pca as you can see.
Rest assured they are a great bunch! 👍

Regards,

Jacey.

User

Posted 13 Mar 2015 at 23:52

Hi Ali

There are many treatments available and I think once you begin to see responses to them you will feel better.

Bob is almost 4 years on, enjoyed annual ski holidays, walked up Snowden twice, run great north half marathon, continued a full time lorry driving job until just recently and enjoyed family life.

I have learnt to live for each day at a time, and not look too far forward. I hope this gives you hope.

Lesley xx

User

Posted 14 Mar 2015 at 01:28

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

User

Posted 14 Mar 2015 at 09:08

Thank you harmony and Lyneyre. Also to the many others. It does give me hope to read your replies. Peter is being really strong and stoical and I admire him greatly. At the moment he feels ok, but is experiencing overwhelming tiredness- he has had it since just before diagnosis. Could it be stress and the cancer itself? does anyone else have experiences of fatigue? I know it can be a common feature. Just all feels rather overwhelming at the minute. Thanks all xx

'Sorrow looks back, worry looks around, but faith looks up'

User

Posted 14 Mar 2015 at 18:02

Hi Ali

Please see your other thread for more details about us.(stampede).

Fatigue is a major issue for all of us I think. My OH just drops off. Not sure if it is the Ca, the drugs or the looking after 2 small children!

ATB

Alison x

User

Posted 14 Mar 2015 at 19:37

Fatigue has been a major issue for John since diagnosis. Some men seem to do better and occasionally even continue working whilst on HT, though many find this much too difficult. HT certainly ups the ante fatigue wise. In John's case, Pca, HT and Stillbestrill and tramadol for pain is a combination that makes him feel exhausted all the time, he tries very hard to overcome it but his recent radiotherapy has knocked him back further. The usual advice is graded exercise, ie not too much but definately take some, rest when needed, maybe an afternoon rest and pace yourself. I know that if john has a "good" day and does too much he will have three following days of being unable to do much at all.

Some men (see Yorkhull) continue to work and are fine, some men (allahayes) even continue playing competitive sport for a good while, as you can see, it's depends. The shock of diagnosis does wear off and things do return to some sense of normality, but for most of us it is a new normality. One of the threads on our old forum spoke of how Pca had changed many here for the better, we find we are kinder to our partners and somehow enjoy life more than before. It's not all bad.

It may be that as his body adjusts to the drugs there will be a big improvement in fatigue levels. Fingers crossed for you.

Best wishes

Allison

User

Posted 14 Mar 2015 at 21:46

It is only two months since his operation and many men have a 12 week sick note post-op - not necessarily because they still have surgical problems but because major surgery knocks your stuffing out. All energies in the body are directed towards healing. Add to that the emotional impact of diagnosis, the news that he didn't necessarily get the cure he had opted for and further treatment is needed and then side effects of the HT and it is no surprise he is fatigued.

It seems that they are not saying he has advanced PCa - simply that there is a non-defined shadow that needs to be identified. Presumably they are going to scan him again after some HT and will then decide whether to go for curative RT or whether long-term management is the route. If I have understood correctly, it is too soon to be thinking about the circumstances that some of the other wives are in and you may, like me, end up with a husband who had treatment and then moved on with his (cancer-free) life. I do hope so :-)

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

User

Posted 14 Mar 2015 at 22:43

Hi LynEyre, and the many others- Yes, the plan is for HT and then re-scan to see if the suspicious area has shrunk. Then they will probably discuss a plan from there. I am still hoping it is more like a locally advanced rather than very advanced, but from what I am reading, even with wide spread mets, some of the men on here have done really well with various treatments. Amazing really, what can be done these days.

I think they want to re-do all the scans, to check bones and organs. We shall see.

Today I have felt much more hopeful and relaxed again. I guess it's just the unknown which is so daunting, as all of you must already have experienced. I hope that Pete doesn't experience too many horrible side effects from HT, and that he doesn't get too moody :-/ !!!

He plays guitar and is in a band, he writes his own music, and it is a great outlet and focus for him.

I hope we can journey through this without PCa being the focus, but life being the focus and PCa fitting in to life, if you see what I mean?!

Also, even though we knew there were positive margins after surgery in the bladder neck, I am hoping it's a good sign that PSA already has dropped from 46 to 0.9 before another therapy on top?!

SO glad we have this forum, it is already proving a real comfort and inspiration. Thank you to all!

'Sorrow looks back, worry looks around, but faith looks up'

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