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Spread to bones - what happens next?

User
Posted 09 November 2017 21:21:22(UTC)
Hello
My husband was diagnosed with PCa in 2015. Had hormone injections, bracytherapy followed by radiotherapy. Initially psa results dropped but started rising this year. Monitored every 3 months until in September at 6.8 he was sent for a bone scan which showed his cancer has spread.
So here we are again, back on hormones tablets for 2 weeks and first injection today.
He is very depressed and extremely tired. Still working but asleep as soon as he gets in at night.

So can anyone advise anything I can do to help him. I have no one to talk to about this, we haven't told family because we wanted to handle 'in house ' as it were.

Have been reading these posts for sometime and you seem like a friendly bunch so hoping for some practical advise. 😀
User
Posted 17 November 2017 15:50:01(UTC)

Hi Helping Hand

My partner decided not to tell the family until we simply couldn't hide the symptoms any longer so I understand how very tough that is for both of you. Members on this site were such an amazing help - advice, jokes, hugs and support - so glad that you have started posting since I'm sure you will find it a huge help.

One piece of advice in hindsight; I think I didn't always shout enough, just tended to accept what the medics said and didn't always push for clarification or swifter treatment. Once I realised that this was necessary, and based on the experience of the forum members, we started to take more control and that was helpful psychologically I think. As someone has mentioned, chemo is often used with HT once the cancer has spread to the bones. Unless there's a good reason to wait until January perhaps you should ask for a rapid referral. At its best the chemo can reduce PSA level and bone spread and that can lead to improved energy levels and lessen bone pain. Might also be worth speaking to the PC nurses to get some advice about fatigue and diet.

If your husband can be persuaded to tell the family sooner rather than later I'd certainly advise it - that additional practical support and emotional understanding is worth the world.

Hope things start to feel a bit more positive soon. Hugs.

xxx

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User
Posted 09 January 2018 13:00:39(UTC)
Standard NHS treatment is hormone therapy coupled with chemo a couple of months later. I had private health care so I was put on Abiraterone instead of chemo. It’s worth asking about this as it avoids chemo
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User
Posted 09 November 2017 22:26:12(UTC)

Hi Helping Hand
Sorry to hear that the cancer has spread. My husband was only diagnosed in March this year with advanced prostate cancer spread to bones and lymph nodes. His PSA was over 1000. Following hormone implants and 6 sessions of Chemo his latest PSA was 1.1. Chemo has worked well for him and he worked most days during this treatment. We found the waiting to know what treatment was being offered really hard but it did get a bit easier once treatment started. Do you know if he is to be offered Chemo as this is often offered if it has spread to the bones? It may be worth talking about his fatigue as there are suggestions of things that might help.I know that gentle exercise is often suggested but if he is too tired after a day at work that may not be possible. Just hope things improve for both of you.

User
Posted 10 November 2017 15:46:41(UTC)

Hi Hiitsme

Thank you for your response.  I am trying to get my husband to look at this website to read some of the stories, I think it might help him.  We don't know what course of action he will get, initially started back on hormone therapy and back to hospital for review in January.  I do try to remain positive for him but it can be really hard sometimes.  I know in the great scheme of things that his wellness is more important, and I do think having someone to chat to about it will help.

Hopefully once he has finished this course of tablets he will have more energy, so be able to get out walking more.  

Good luck to you you and your husband too

 

User
Posted 10 November 2017 20:51:20(UTC)

Hi Helping Hand
I'm not good at always being positive. I've found the last 8 months really hard but it does seem at the moment that things are working as well as possible. Next appointment is December by which time he should have had a couple of scans and then we should know if the mets really have reduced, which I'm sure they have. It took my husband several months before he would look at this website, it needs to be when he is ready. Fortunately my children knew from the beginning as my husband had been in so much pain, all the places where he had mets, it would have been difficult to have hidden the diagnosis from them.

User
Posted 17 November 2017 15:27:18(UTC)
My husband has metastatic prostate cancer spread to lymph nodes and everywhere in his bones. Sometimes he doesn’t feel too bad other times he aches all over. Is this normal.
User
Posted 17 November 2017 15:50:01(UTC)

Hi Helping Hand

My partner decided not to tell the family until we simply couldn't hide the symptoms any longer so I understand how very tough that is for both of you. Members on this site were such an amazing help - advice, jokes, hugs and support - so glad that you have started posting since I'm sure you will find it a huge help.

One piece of advice in hindsight; I think I didn't always shout enough, just tended to accept what the medics said and didn't always push for clarification or swifter treatment. Once I realised that this was necessary, and based on the experience of the forum members, we started to take more control and that was helpful psychologically I think. As someone has mentioned, chemo is often used with HT once the cancer has spread to the bones. Unless there's a good reason to wait until January perhaps you should ask for a rapid referral. At its best the chemo can reduce PSA level and bone spread and that can lead to improved energy levels and lessen bone pain. Might also be worth speaking to the PC nurses to get some advice about fatigue and diet.

If your husband can be persuaded to tell the family sooner rather than later I'd certainly advise it - that additional practical support and emotional understanding is worth the world.

Hope things start to feel a bit more positive soon. Hugs.

xxx

Thanked 1 time
User
Posted 18 November 2017 15:10:17(UTC)

Originally Posted by: Online Community Member
My husband has metastatic prostate cancer spread to lymph nodes and everywhere in his bones. Sometimes he doesn’t feel too bad other times he aches all over. Is this normal.

 

Hi, 

Better to start a separate thread for this one, as it's a big issue, and not quite the same as HH's

I'll be happy to chip in ....

 

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 18 November 2017 15:15:11(UTC)

Originally Posted by: Online Community Member
he was sent for a bone scan which showed his cancer has spread.
So here we are again, back on hormones tablets for 2 weeks and first injection today.

Hi, You don't say why he was sent for the scan: was it symptoms or raised PSA?

Additionally you don't say what the injection is, but hormones seems most likely from the context.

If I was in that position (which I likely will be one day!), I'd expect to be discussing chemo if I had (e.g.) bone pain due to metastases. On the other hand, I conceivably would be content with hormones if the mets were entirely symptom free.

Unless I'm missing something here?  :)

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 23 November 2017 14:26:15(UTC)

Hi all

Thank you for all of your responses, it really is good to talk.

Bone scan was requested after a couple of rises in PSA, apart from his usual aches and pains he has been ok.  Injection is hormones, and I did ask the consultant why they were putting him back on this since it hadn't worked previously.  I was told that this would always be the first step which will be reviewed at the next consultation in January.  

Anyway, I will be questioning things at that point, its more likely to be me asking questions than my husband to be honest, but that's ok with me.  

Thanks all :)

User
Posted 23 November 2017 15:16:24(UTC)

Why do you believe the hormones didnt work last time? Did his PSA stsrt to rise while he was still on HT?

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


User
Posted 04 December 2017 13:54:54(UTC)

Yes, initially his PSA dropped but then it started to rise again, he had his last injection in March  and the consultant wanted to watch and wait, but after the bone scan showed it had spread he put him back on them.

User
Posted 09 January 2018 10:25:19(UTC)

Hi all

Well my husband is due back to the oncologist next week, he has had his bloods done but is leaving it as late as possible before getting the results, as he will only worry until his actual appointment.  Up until Christmas he was doing ok but now he is going into panic made (and in secret so am I).

So, any advice for next weeks appointment would be much appreciated.  From what I  have read on here (and of course depending on his PSA result), the next course of action should be Chemo.  Can he demand this?  

Doing our best to remain positive, making tentative plans for holidays and stuff but right now I just feel sick with worry.

Any words of wisdom would be most welcome right now.

User
Posted 09 January 2018 13:00:39(UTC)
Standard NHS treatment is hormone therapy coupled with chemo a couple of months later. I had private health care so I was put on Abiraterone instead of chemo. It’s worth asking about this as it avoids chemo
Thanked 1 time
 
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