Hi all
Posting on here for my hubby who is 51, fit & healthy, he is never ill.
Had symptoms of getting up peeing at night, gp appointment 13/9/22 digital examination prostate felt abnormal, bloods done PSA of 200! Prescribed bicalutamide
21/9/22 MRI, told it was cancer and spread outside of prostate (uncontrollable crying from me) had biopsy, bone scan and CT scan across the following week, tough week telling our girls (22 & 16)
Appt today with urologist:
gleason 9 (4+5), T 3b, N2,M1, cancer spread to pubic bone and lower back
absolutely devastated
Treatment :hormone injection and chemo / injection given today of Prostap.
Appointment with oncologist next week
if it wasn’t for this group I wouldn’t have known what to ask (scores) but now feeling terrified
Hubby says he is still here and plans to be for a long time
I am broken
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Hi , sorry you are both here . I have not posted for ages but logged on and felt compelled to reply to you.
I was diagnosed 8 years ago age 49 T4N1M1A, PSA 342 . Tears all round on diagnosis , spread to lymph’s outside the pelvis and inside.
Biclutamide did nothing for me but zoladex from the start then docetaxl chemo followed by radiotherapy to the prostate . About a year later after PSA had dropped to around 1 it started rising again . Started abiraterone and PSA dropped to around 0.1 . Stayed there until recently and has slowly risen however still only 0.25
So , number 1) life has been great for 8 years 2) I always ran a bit but since diagnosis I have run around 15,000 miles all over the world in 250k races . I even ran 2 marathons on chemo .
There are no guarantees of course but I have learnt to make the most of every day . My wife always says to me “if you wake up and feel ok it’s going to be a good day”. Even on a bad day I feel “ok” so what’s not to love ? I am 57 now so please don’t focus on the rubbish too much but instead enjoy the now because there will be plenty more now’s I am sure.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Thanks Michael, it’s good to hear that you are receiving great care.
trying to stay positive
Tracey
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Loads that can be done Tracey stay positive I was gleeson 9 with a high psa 2years on after radiotherapy and 2 years off hormone therapy psa now 0.01. met a fellow whilst having treatment his starting psa 10 years ago was 5000 he is incurable but it still here and reasonably ok gaz 👍
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Hi both
Read my profile,be strong stay positive,it will get better but its a roller coaster.
Best wishes to you both
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Rowey, don't get your hopes up that a second opinion is going to make a difference in your case. I have been a member here for 13 years and Elaine's is only the second case I can remember of bone mets being diagnosed and then another consultant saying this is wrong. In your case, with a G9 and mets to lymph and at least two bones, it isn't going to turn out to be a diagnostic error
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Tracey
Sorry to hear this and you and husband must be in some degree of shock. I have a similar story to your husband and am receiving great care from oncology. There is a lot they can do and you will see from many stories here that even with when things have moved out the prostate treatments can control things a for good length of time.
I do wish you and your husband well and I am sure others will be along as well to tell you about many of the success stories and longevity.
Take your time processing things and look after each other.
Best wishes
Michael
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so he should be with your backing he will be fine keep us informed great community with some sterling advice off some very knowledgeable people 👍
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Hi Tracey ,I feel your anguish. My OH Gary aged 55 had lower PSA(23) but Gleason 4+5 spread to lymph nodes ,that was 7 yrs ago ! He had early chemo which thankfully he sailed through,managing to continue working. He’s been on Abiraterone and enzolutamine (in a trial) plus prosap since and has had PSA reading of undetectable since about the 3/4 th chemo session.
He still works ,just slower .Keep the faith and hopefully once treatment kicks in the PSA should start to come down .
I remember Gary being told about the cancer in the November and I kept thinking he’d be dead by Christmas!!
Lots of useful info and people on this site . Make sure you take time for yourself as well .
Best wishes
Debby
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Yes of course Lyn is right and every situation is different.
Although Rob is also G9 and had lymph node spread his initial PSA was 8.3 and they had said about 1 bone area in his pelvis.
The only thing I sometimes think of is if we didn’t get the second opinion he would have had chemo/enza and hormone treatment for life….it would have just appeared that he was responding well to treatment and we would never have known it was never there to begin with….I’m sure this must happen to others.
The main reason I got the second opinion was because I wanted to see if someone would operate regardless and then deal with the bone met later (similar to Atlanta trial). I don’t think I initially questioned that it might be wrong but of course it was very welcomed news x
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Just realised I had a typo and said more than 5 could be done instead of couldn’t 🤦🏻♀️ sorry! I’ve changed it now.
I know others seem to have only got three mets targeted on the NHS, although if they give RT to the whole prostate area maybe some would be covered there? Not sure what Atlanta offers. It’s difficult to know what is available but it’s got to be worth asking, and I know in the same situation I would still be pushing for the best treatment in hope of cure.
Best of luck with your next appointment x
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Quote:Everyone needs hope but it should be realistic; metastatic cancer can't be cured.
I possibly have watched too many American YouTube videos 🤦🏻♀️ It’s always stuck with me that he said you should always aim for cure (within reason of course), they were usually working with up to 5 mets including bone….I assume they were meaning remission but it seems they have sometimes seen very lengthy ones.
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Hi Tracey
Sorry to hear this and you and husband must be in some degree of shock. I have a similar story to your husband and am receiving great care from oncology. There is a lot they can do and you will see from many stories here that even with when things have moved out the prostate treatments can control things a for good length of time.
I do wish you and your husband well and I am sure others will be along as well to tell you about many of the success stories and longevity.
Take your time processing things and look after each other.
Best wishes
Michael
User
Thanks Michael, it’s good to hear that you are receiving great care.
trying to stay positive
Tracey
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Loads that can be done Tracey stay positive I was gleeson 9 with a high psa 2years on after radiotherapy and 2 years off hormone therapy psa now 0.01. met a fellow whilst having treatment his starting psa 10 years ago was 5000 he is incurable but it still here and reasonably ok gaz 👍
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Thanks Gaz, hubby is positive 👍🏻
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so he should be with your backing he will be fine keep us informed great community with some sterling advice off some very knowledgeable people 👍
User
Hi both
Read my profile,be strong stay positive,it will get better but its a roller coaster.
Best wishes to you both
User
Hi Tracey ,I feel your anguish. My OH Gary aged 55 had lower PSA(23) but Gleason 4+5 spread to lymph nodes ,that was 7 yrs ago ! He had early chemo which thankfully he sailed through,managing to continue working. He’s been on Abiraterone and enzolutamine (in a trial) plus prosap since and has had PSA reading of undetectable since about the 3/4 th chemo session.
He still works ,just slower .Keep the faith and hopefully once treatment kicks in the PSA should start to come down .
I remember Gary being told about the cancer in the November and I kept thinking he’d be dead by Christmas!!
Lots of useful info and people on this site . Make sure you take time for yourself as well .
Best wishes
Debby
User
Thanks Debby, it’s great to hear that you & Gary are getting through it . I’ve had the same thoughts (how long will I have him) but hearing stories like yours is really helping us.
staying positive x
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It’s such a difficult time Tracey. Like Debby, when my husband was diagnosed July last year I didn’t think he would be here at Christmas either 😢
He was initially diagnosed T3a N1 M1b. Thankfully for us after a second opinion and PSMA pet scan they said it wasn’t cancer in his bone. He then had RARP to remove prostate and lymph nodes. He currently has an undetectable PSA but still worry a lot.
Just give it everything and always believe it will all be ok, so much that can be done these days and I think having a positive attitude really helps. You will of course still get your bad days….hopefully you can get support here and from other places too.
Wishing you both all the very best x
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Thanks Elaine , can I ask did you seek a second opinion or was the second opinion from the existing medical team ?
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Hi Tracey,
Yes we did seek the second opinion and they disagreed with our local hospital x
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Rowey, don't get your hopes up that a second opinion is going to make a difference in your case. I have been a member here for 13 years and Elaine's is only the second case I can remember of bone mets being diagnosed and then another consultant saying this is wrong. In your case, with a G9 and mets to lymph and at least two bones, it isn't going to turn out to be a diagnostic error
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Yes of course Lyn is right and every situation is different.
Although Rob is also G9 and had lymph node spread his initial PSA was 8.3 and they had said about 1 bone area in his pelvis.
The only thing I sometimes think of is if we didn’t get the second opinion he would have had chemo/enza and hormone treatment for life….it would have just appeared that he was responding well to treatment and we would never have known it was never there to begin with….I’m sure this must happen to others.
The main reason I got the second opinion was because I wanted to see if someone would operate regardless and then deal with the bone met later (similar to Atlanta trial). I don’t think I initially questioned that it might be wrong but of course it was very welcomed news x
User
"The only thing I sometimes think of is if we didn’t get the second opinion he would have had chemo/enza and hormone treatment for life….it would have just appeared that he was responding well to treatment and we would never have known it was never there to begin with…."
It is also possible (and statistically more likely) that your second opinion was wrong and the side effects of radical treatment could have been avoided. But given the opportunity of radical treatment, it made sense for you to grab it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Originally Posted by: Online Community Member
It is also possible (and statistically more likely) that your second opinion was wrong and the side effects of radical treatment could have been avoided. But given the opportunity of radical treatment, it made sense for you to grab it
Yes I still often think that could be the case so never like to get too comfortable with his undetectable PSA scores as I know things could change at any point.
I know this might sound strange (probably because he has recovered so well from the op) but we seemed to find the HT a more radical treatment than the RARP. Yes he has ED after the op but he was never remotely interested in me on HT anyway, so it’s been nice having my husband back.
Sorry for taking over your post Tracey 🤦🏻♀️ Wishing you and your husband all the very best with the upcoming appointments and get a treatment plan in place x
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Hi Tracey, I am so sorry to hear about your husband's diagnosis . My husband although much older than yours had a similar diagnoses this year. Since May when he was diagnosed he has been on Bicalutamide, Decapeptyl injection six monthly and is now on his 4th chemotherapy treatment. Since then his PSA has dropped to a stable 0.02 and his Alkaline Phosphatase has dropped to a normal 60UL. I was also in a similar emotional state and was so shocked, however what kept me going and staying positive was this wonderful forum. I have to say I am not sure how I would have managed without their support, their words of encouragement and above all reading about their experiences. I know you will also benefit from this forum .
Mike is doing well on his treatment, he is very positive and continures to play tennis and badminton. Staying active has really helped along with a good healthy well balanced diet. Also I have had great support from the prostate cancer specialist nurses.
Be strong and stay positive, thinkning of you and your husband.
Sending you positive vibes
Maud
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Thank you Maude
sending you and Mike all our best wishes, you are right this forum is a fantastic support network and has helped both of us to be positive . It’s great to hear that treatment is going well.
stay positive xx
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Hi , sorry you are both here . I have not posted for ages but logged on and felt compelled to reply to you.
I was diagnosed 8 years ago age 49 T4N1M1A, PSA 342 . Tears all round on diagnosis , spread to lymph’s outside the pelvis and inside.
Biclutamide did nothing for me but zoladex from the start then docetaxl chemo followed by radiotherapy to the prostate . About a year later after PSA had dropped to around 1 it started rising again . Started abiraterone and PSA dropped to around 0.1 . Stayed there until recently and has slowly risen however still only 0.25
So , number 1) life has been great for 8 years 2) I always ran a bit but since diagnosis I have run around 15,000 miles all over the world in 250k races . I even ran 2 marathons on chemo .
There are no guarantees of course but I have learnt to make the most of every day . My wife always says to me “if you wake up and feel ok it’s going to be a good day”. Even on a bad day I feel “ok” so what’s not to love ? I am 57 now so please don’t focus on the rubbish too much but instead enjoy the now because there will be plenty more now’s I am sure.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Fantastic post irun very heartwarming long may you and all off us continue to be positive and plough on well said 👍
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Thank you Irun for taking the time to share your journey and for being so positive. long may it continue.
I am going to pinch this , I love it !
Dream like you have forever, live like you only have today
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Hi. Tracey...my husband who is 65years old received a very similar diagnosis to your husband in April this year. He also had a psa of 48, gleason 4+5 and T3N2M1. Left Supra pubic bone met.. He has has just finished 6 sessions of chemotherapy and awaiting further CT and bone scan this month prior to review by Oncology for radiotherapy. My husband has kept well, is farming every day and had just minor side effects of chemo. Treatment, fatigue, some bone muscle and joint pains but mainly in first 7 days post each chemo. Session. Yes, it was very upsetting in the beginning to receive this non curative diagnosis but as you travel the path with treatments it will definitely feel better and you will gain control again. As a wife it was a roller coaster of emotions but take every day as it comes. some are better than others. The members of this forum are fantastic and you will learn much from them, as to how well other men with same diagnosis are doing so well and getting on with daily life. I know I did and it made you feel that it wasn't just happening to your husband. Also the prostate cancer nurses are excellent to speak to regarding advice. Re: treatments/emotional support. Tracey, I was just wondering how long your husband had his urinary symptoms before he attended his gp as my husband had similar symptoms which prompted him. please take care and wish you both well for the future. will follow your posts.
Regards
Ann
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What beautiful and positive words Irun. I often share the positive feedback and advice from this wonderful forum with my husband. We both benefit such a lot and we remain positive and think how lucky we are to have this support. Maud
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Hi Ann
glad to hear that your husband managed the chemo, I am hoping that my hubby will be ok with it. He had urinary symptoms on and off for around 3 months - no other symptoms.
We have felt a bit calmer this weekend mostly due to the positivity on here.
sending best wishes to you both Ann xx
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Hi Tracey, my husband had Gleason 10, with T3BN1M1C so as you can imagine I was also in a state of shock. However, as I said earlier with the chemotherapy treatment his PSA is a stable 0.02 down from 57.2 and he is doing really well. He continues to play tennis three times a week and badminton once a week. Regarding your husband having chemotherapy what really helped was all the advice I got from this forum. It helped as listening and learning from shared experiences at least gave my husband a good start on what to expect from the treatment and how to manage it. Keep positive and send you and your husband lots of positive vibes and warm wishes.
Maud
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Bit of an update
Monday 17th oct telephone appt with oncologist - not great, made us feel like there was no hope
chemo upfront and monitor PSA, asked questions about RT told usually only if confined to prostate or in pain ?? And no point doing RT??
face to face appointment today (1/11/22) chemo starts on Thursday 6 sessions 3 weekly basis (docetaxel) & dexamethasone day before chemo, different oncologist was more positive, asked about RT and told may have this if use now may not be able to use again?
PSA is down to 1.06 - ONCO happy with this & will monitor every 3 weeks through chemo.
feel like I am confused about RT and can’t get to the bottom of when it is used, but relived that PSA has dropped.
Now worrying about impact of chemo, OH is ok only side effect he has had with prostap is small hot flushes.
tracey
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Hi Tracey,
Hopefully someone will come on to help you further as I don’t know too much about chemo and RT.
Have they confirmed how many mets your husband has? When Rob was diagnosed we wanted his prostate out and then deal with the mets later. He just had 2 at the time though, lymph node and pelvic bone. I mentioned before about the Atlanta trial…not sure if this is something you have looked into? I think generally if there are more than 5 areas it wouldn’t be something that couldn’t be done. And I think (non trial) if someone has a recurrence after radical treatment the NHS will treat just 3 areas where cancer has metastasised. Think there is a maximum lifetime dose of RT that you can have and the same area can’t be retreated (although I have seen some things that contradict this).
As for the chemo, many who have had it say it’s less toxic that some of the chemos for other cancers so much more tolerable. Although everyone is different in how they react to different treatments.
Really good news about his PSA, he’s obviously had a good response to the HT and long may that continue.
There are many much more knowledgeable on here who will be able to help, but this should just bump your post up so others will see it.
Wishing you both all the best x
Edited by member 02 Nov 2022 at 20:54
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Thanks Elaine
he has 5 mets, pubic bone, 2 left ribs, lower back and small thoracic spine, oncologist said it isn’t wide spread and deposits are small. They seemed reluctant to commit to RT, even though there isn’t more than 5. I have read recently about RT up front being used with good results.
I will discuss with onco at next meeting
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Just realised I had a typo and said more than 5 could be done instead of couldn’t 🤦🏻♀️ sorry! I’ve changed it now.
I know others seem to have only got three mets targeted on the NHS, although if they give RT to the whole prostate area maybe some would be covered there? Not sure what Atlanta offers. It’s difficult to know what is available but it’s got to be worth asking, and I know in the same situation I would still be pushing for the best treatment in hope of cure.
Best of luck with your next appointment x
User
Originally Posted by: Online Community MemberThanks Elaine
he has 5 mets, pubic bone, 2 left ribs, lower back and small thoracic spine, oncologist said it isn’t wide spread and deposits are small. They seemed reluctant to commit to RT, even though there isn’t more than 5. I have read recently about RT up front being used with good results.
I will discuss with onco at next meeting
RT is used in two different ways in advanced cancer.
1. To reduce symptoms - RT can be aimed at individual bone mets to reduce pain or to stabilise a spinal cord compression. It can also be targeted at a lymph node to reduce lymphodema or aimed at a met to stop bleeding, for example.
2. RT to the prostate can slow down progression - the theory is that the main tumour is like a central heating boiler and knocking out the prostate means there is nothing to pump the hot water around the house. However, RT to the prostate will only help men who have mets in the lymph nodes, pelvis or lower spine. Because your husband has mets in the ribs and mid- or upper-spine, there is no benefit to outweigh the potential side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Quote:Quote:Originally Posted by: Online Community MemberJust realised I had a typo and said more than 5 could be done instead of couldn’t 🤦🏻♀️ sorry! I’ve changed it now.
I know others seem to have only got three mets targeted on the NHS, although if they give RT to the whole prostate area maybe some would be covered there? Not sure what Atlanta offers.
I think you are confusing two different types of RT here
It’s difficult to know what is available but it’s got to be worth asking, and I know in the same situation I would still be pushing for the best treatment in hope of cure.
Everyone needs hope but it should be realistic; metastatic cancer can't be cured.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Quote:Everyone needs hope but it should be realistic; metastatic cancer can't be cured.
I possibly have watched too many American YouTube videos 🤦🏻♀️ It’s always stuck with me that he said you should always aim for cure (within reason of course), they were usually working with up to 5 mets including bone….I assume they were meaning remission but it seems they have sometimes seen very lengthy ones.