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User
Posted 09 Jul 2021 at 16:47

Hi I’ve been looking at this site for a while now and decided to post 

my husband who is 59 was recently diagnosed with advanced metastatic prostate cancer, he has had a bone scan and a ct scan which shows it has spread to other parts of his body, he started hormone treatment which he will get every 28 days and he started chemotherapy today which he is getting every 3 weeks for 18 weeks, his psa was 89.5 I’ve seen on some posts about a Gleason score but nothing like that is mentioned.

I was wondering if there is anyone else with similar symptoms 

thank you

User
Posted 12 Aug 2021 at 16:19

I was diagnosed in June 2012 as T4 with a PSA close to 660 and well spread to pelvis, ribs and spine plus two lymph nodes in my tummy. Never had a biopsy (seemed irrelevant) and was put on HT (Prostap) about three years ago bicalutimide was added (one tablet per day).

Here I am nine years on, never had chemotherapy or radiation - how has it impacted me? Libido gone, put on about two stones (12kgs)
and that is about it. Last PSA 0.01 as were several previous ones.

Am I lucky (if that is a word I should use)? My experience goes to show that we are all different and outcomes vary accordingly.


I wish you and yours well.

Edited by member 12 Aug 2021 at 16:20  | Reason: Not specified

User
Posted 09 Jul 2021 at 20:29
My Husband was diagnosed 3 years ago with Metastatic PC, GL 9 PSA 310. at 62yrs old.

Started chemo straight away and Lupron shots every 3 months.

His PSA went down to 1.5, but started to steadily climb, Caxodex was added, but that didn't work at all, now hes on Aberitone and prednisone since Dec, and now PSA is going down, thank goodness.

To say it was a shock was an under statement.

My Husband had very few side effects with chemo, hope your other half is the same.

I wish you all the best in his treatment

Kim

User
Posted 12 Aug 2021 at 16:43

Boroboy

It warms my heart to hear stories like yours. 

My husband diagnosed 2 years ago with G8, PSA 298 and spread to lymph nodes. They told him to expect 5 years and I get upset about that often but I'm hoping he does as well as you.

Great stuff

Best of luck to Worried other half x

Edited by member 12 Aug 2021 at 16:55  | Reason: Not specified

Mrs MAS

User
Posted 01 Sep 2021 at 18:49
I was diagnosed in June 2019 with metastatic prostate cancer, bones and lymph, psa 437. 2 years on and having completed the same treatments your hubby has been advised to have, I am still on prostap 3, everything has settled back down to normal, continued working part time, no real side effects that I cant easily tolerate, psa undetectable for 18 months now. So let my story give you at least some hope.
User
Posted 09 Jul 2021 at 16:47

Hi I’ve been looking at this site for a while now and decided to post 

my husband who is 59 was recently diagnosed with advanced metastatic prostate cancer, he has had a bone scan and a ct scan which shows it has spread to other parts of his body, he started hormone treatment which he will get every 28 days and he started chemotherapy today which he is getting every 3 weeks for 18 weeks, his psa was 89.5 I’ve seen on some posts about a Gleason score but nothing like that is mentioned.

I was wondering if there is anyone else with similar symptoms 

thank you

User
Posted 09 Jul 2021 at 17:10

Hi sorry you are here. My diagnosis is not as serious as your husbands but we do have people on here with similar diagnosis and treatments. I am sure some will post soon.

Your husband has probably never been given a gleason score, he may never have had a biopsy. Once the cancer has spread there is little point in doing a biopsy. If he had had a biopsy then, a doctor looking at the cells would assess them and give him a gleason score based on how the cells appear.

So don't worry about the fact you don't have that piece of information. 

Dave

User
Posted 11 Jul 2021 at 07:59

Hello Ann

My husband age 54 was diagnosed last October with advanced prostate cancer. Psa 793, spread to bones. They never gave a gleason just said a grade 5 which we understand to be aggressive. Treatment is monthly degralix injections and on abiraterone.

Wishing you both all the best. Its a massive shock to adjust to.

 

User
Posted 11 Jul 2021 at 19:17

Arberatitone keeps it at bay for quite  long time. My husband had 9 years after diagnosis. Don't despair - new things coming up as treatments all the time. X

User
Posted 30 Aug 2021 at 01:13

I have just registered this is my first post. My husband has been diagnosed with advanced prostate cancer after suffering urine retention. He has had a catheter since 2 July has started hormone tablets and monthly injections (has had 1) no side effects from the drugs but he finds the catheter so uncomfortable he can hardly walk plus he is very tired. In a week he went from a strong healthy 76yrs old to this. Like other partners I have cried and cried I am so scared reading prognosis on line. He is having a turp ? on Friday so hoping the catheter will be gone in a week or so. It is just how do we learn to live with this when we both miss are old life spending winter in Spain now seems unlikely have cancelled 2 holidays for Spain next week and January and the possibility of chemo after the op makes me so fearful of any travel abroad. Do you eventual adjust to this new life? I'm now on propranolol with panic atracjs and I'm terrified of every ache and pain he has...I'm so glad I've found a place where others know how I feel.

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User
Posted 09 Jul 2021 at 17:10

Hi sorry you are here. My diagnosis is not as serious as your husbands but we do have people on here with similar diagnosis and treatments. I am sure some will post soon.

Your husband has probably never been given a gleason score, he may never have had a biopsy. Once the cancer has spread there is little point in doing a biopsy. If he had had a biopsy then, a doctor looking at the cells would assess them and give him a gleason score based on how the cells appear.

So don't worry about the fact you don't have that piece of information. 

Dave

User
Posted 09 Jul 2021 at 20:29
My Husband was diagnosed 3 years ago with Metastatic PC, GL 9 PSA 310. at 62yrs old.

Started chemo straight away and Lupron shots every 3 months.

His PSA went down to 1.5, but started to steadily climb, Caxodex was added, but that didn't work at all, now hes on Aberitone and prednisone since Dec, and now PSA is going down, thank goodness.

To say it was a shock was an under statement.

My Husband had very few side effects with chemo, hope your other half is the same.

I wish you all the best in his treatment

Kim

User
Posted 11 Jul 2021 at 07:59

Hello Ann

My husband age 54 was diagnosed last October with advanced prostate cancer. Psa 793, spread to bones. They never gave a gleason just said a grade 5 which we understand to be aggressive. Treatment is monthly degralix injections and on abiraterone.

Wishing you both all the best. Its a massive shock to adjust to.

 

User
Posted 11 Jul 2021 at 11:04

Hi Sharon your husband’s sounds very similar to mine, my husband is on the same hormone injections every 28days but he just started chemotherapy on Friday, we have an appointment in the 28th of July to see the oncologist again so we will see what he has to say, it is absolutely devastating I can’t stop crying which I know isn’t helping my husband.

hope you and your husband are ok x

User
Posted 11 Jul 2021 at 19:17

Arberatitone keeps it at bay for quite  long time. My husband had 9 years after diagnosis. Don't despair - new things coming up as treatments all the time. X

User
Posted 11 Jul 2021 at 21:00

Thank you this message gives me hope x

User
Posted 11 Jul 2021 at 21:58

Hi ,I really feel for you .
I cried for what seems forever ,Gary was 55 .His PSA 23 ,Gleason 4+5 ,incurable with spread to lymph nodes .That was over 5.5 yrs ago .
Gary’s treatment was 6 rounds of chemo which went ok ,he still managed to work everyday .After about 3/4 sessions his PSA became undetectable.
He’s been on other meds due to being on the stampede trial but has stayed at undetectable.
Once the treatment has started and you see results you tend to settle a bit more ,life will never be the same but you have to embrace a new norm .Gary’s still working full time in the marine construction industry at a slower pace but life is good ,we still holiday ( well  not yet in COVID) . My dad died of esophagus cancer in March after 2 years of treatment,it brings it home that you need to make the most of every day .
Keep posting and share your experience and you will get lots of support along the way
Best wishes
Debby

Edited by member 11 Jul 2021 at 21:59  | Reason: Not specified

User
Posted 13 Jul 2021 at 08:19

Hi Debby, it is really hard to come to terms with, hopefully we start to come to terms as the days go on, we had a couple of holidays that were cancelled due to COVID but at the end of June we had a few days in a lodge in Scotland was supposed to be a week but had to cut it short for my husband’s hormone injection as we were told it couldn’t be missed but we really enjoyed it definitely needed the break. I work part time which I’m glad about as it gives me a bit of normality, my husband is on the sick at the minute but thinking of going back soon, he works 12 hour days shifts and 12 hour night shifts not sure if he will manage that but his company are looking at a plan for him which is good of them. It is really early days for us so when I’m seeing other people’s stories it is helping me. I also lost my dad to oesophagus cancer in 2006.

hope you and your husband are well 

ann

User
Posted 04 Aug 2021 at 15:50

Hi 

Im sorry to hear about your husband. My Dad received a similar diagnosis around March time of this year.

He is currently having zoladex injections every 3 months and is on round 5 of 6 of his first chemotherapy treatment. 

His PSA is down from 75 to .01 which is great - I am just hopeful that the treatment continues to work for many years.  

User
Posted 06 Aug 2021 at 20:14

Hi so sorry to hear about your dad it is awful for anyone going through it, like your dad my husband’s psa has come right down since he started hormone injections he has just had his second round of chemotherapy and he just seems to be so tired after it I feel as though our life is on hold at the minute but reading stories on here gives me hope 

hope your dads treatment keeps going in the right direction x

User
Posted 07 Aug 2021 at 12:25

My diagnosis was similar although a much lower psa than your husband’s. I had chemo last winter and on hormone therapy and psa now <0.1. You did not say how many metastatic deposits were found or whether they were just bone or other organs affected. I had only two - one in pelvis and other in rib. This meant I was accepted on to the ATLANTA clinical trial (you will find it easily with a Google search) as you can read in my profile.

I know it is easy to say but stay positive. 

User
Posted 08 Aug 2021 at 21:34

Hi cocker2 

it says in my husband’s letter multiple metastatic deposits, hip bone pelvic area t11 vertebrate lungs and skull there is a few other numbers I’m not fully sure what they mean though, I’m trying not not overthink things and just taking one day at a time and hopefully when chemotherapy is finished maybe we can have a holiday 

thank you

User
Posted 12 Aug 2021 at 16:19

I was diagnosed in June 2012 as T4 with a PSA close to 660 and well spread to pelvis, ribs and spine plus two lymph nodes in my tummy. Never had a biopsy (seemed irrelevant) and was put on HT (Prostap) about three years ago bicalutimide was added (one tablet per day).

Here I am nine years on, never had chemotherapy or radiation - how has it impacted me? Libido gone, put on about two stones (12kgs)
and that is about it. Last PSA 0.01 as were several previous ones.

Am I lucky (if that is a word I should use)? My experience goes to show that we are all different and outcomes vary accordingly.


I wish you and yours well.

Edited by member 12 Aug 2021 at 16:20  | Reason: Not specified

User
Posted 12 Aug 2021 at 16:43

Boroboy

It warms my heart to hear stories like yours. 

My husband diagnosed 2 years ago with G8, PSA 298 and spread to lymph nodes. They told him to expect 5 years and I get upset about that often but I'm hoping he does as well as you.

Great stuff

Best of luck to Worried other half x

Edited by member 12 Aug 2021 at 16:55  | Reason: Not specified

Mrs MAS

User
Posted 12 Aug 2021 at 18:32

Boroboy that is absolutely amazing to read how well you are doing I hope my husband does as well, it gives me hope when I read stories like yours 

thank you Ann

User
Posted 30 Aug 2021 at 01:13

I have just registered this is my first post. My husband has been diagnosed with advanced prostate cancer after suffering urine retention. He has had a catheter since 2 July has started hormone tablets and monthly injections (has had 1) no side effects from the drugs but he finds the catheter so uncomfortable he can hardly walk plus he is very tired. In a week he went from a strong healthy 76yrs old to this. Like other partners I have cried and cried I am so scared reading prognosis on line. He is having a turp ? on Friday so hoping the catheter will be gone in a week or so. It is just how do we learn to live with this when we both miss are old life spending winter in Spain now seems unlikely have cancelled 2 holidays for Spain next week and January and the possibility of chemo after the op makes me so fearful of any travel abroad. Do you eventual adjust to this new life? I'm now on propranolol with panic atracjs and I'm terrified of every ache and pain he has...I'm so glad I've found a place where others know how I feel.

User
Posted 30 Aug 2021 at 12:44

Hi Bridie

Welcome to our club. Hopefully the catheter Problem will be sorted soon, but you can read my post at the end of the following thread, to see the possibility of CISC. 

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

You will see from other members that a diagnosis of advanced prostate cancer is not a death sentence. It can be managed and 5, 10 or 15 years are possible life spans. Once you have got in to the treatment regime, you may well be able to resume your trips to Spain. 

Dave

User
Posted 30 Aug 2021 at 13:06

Thanks Dave we are struggling but getting there...the acronyms are another learning.

User
Posted 31 Aug 2021 at 00:12

Yes acronyms are all over the place with this disease.

On your account you can enter details about you and/or husband. If you enter PSA, Gleason (if known) any details about spread, and what treatments he has had. It is all in one place and other people on here can refer to it when giving advice. If you click on most people's profile picture you will see this sort of information.

It is probably best to start a new thread with your questions rather than post on an existing thread, though this website isn't the easiest to use and you can lose everything you typed, so for the first few times type it in word or notepad and then copy to the forum, that way is it all gets lost you can copy it in and try again. New posts don't appear on the forum for a few hours when you start a new thread.

If you use the search feature you will find some threads on travel insurance, at this stage of the disease you should be able to get reasonable quotes. You may be able to get your husband on to three month injections or even six month ones, which will make long holidays easier. This does depend on exactly what the medics think is the appropriate drug.

 

Dave

User
Posted 01 Sep 2021 at 15:36

I have been on all day trying to get holiday insurance as we want to visit our son, wife and our grandchildren in Canada with no luck, one woman I spoke to said it might be because my husband is still getting chemotherapy so she suggested trying again when his chemotherapy is finished has anyone else experienced this

thank you

ann

User
Posted 01 Sep 2021 at 15:45

Bridie55 so sorry to hear of your husband’s diagnosis I know exactly how you feel as my husband was only diagnosed in may so all new to us it has been a tough few months, my husband is on his 3rd chemo 3 more to go then who knows after that we are just taking one day at a time

ann

User
Posted 01 Sep 2021 at 15:53

There is so much to take in. He is going into hospital on Friday and has an oncologist appointment 15th not sure what they will suggest but he has metasticies in his liver, lungs back and lymph nodes but reading on here I'm not as down as I was...just still getting over the shock really.But thanks for your reply.

Bridie

User
Posted 01 Sep 2021 at 18:49
I was diagnosed in June 2019 with metastatic prostate cancer, bones and lymph, psa 437. 2 years on and having completed the same treatments your hubby has been advised to have, I am still on prostap 3, everything has settled back down to normal, continued working part time, no real side effects that I cant easily tolerate, psa undetectable for 18 months now. So let my story give you at least some hope.
User
Posted 01 Sep 2021 at 19:10
Oh thank you that gives me hope.
User
Posted 02 Sep 2021 at 14:23

Your post gives me so much hope.  Dad has had his last round of chemotherapy today.  PSA is 0.01.   Hoping  PSA stays that way.  Onco appointment next week to discuss next steps - I will print off details of SABR and the ATLANTA trial so he can  informed. 

 
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