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Totally devastated and scared

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User
Posted 04 Mar 2019 at 22:57

Hi all. This is my first time posting on this site. My husband (68) has just been diagnoised with advanced stage 4 prostate cancer which has spread to his bones (spine, pelvis, sternum,  humerus and left side of skull. Gleason 8 (4+4) and PSA 121. He attended the doctor because he was weeing a lot especially at night. The doctor referred him to an urologist because of a psa of 121. We were told his Prostate was enlarged and that it may be cancer but there was lots of treatments available. On 24 January He was started on hormone tablets for 3 weeks with an injection on 5 February which he has to have every three month. He is waiting to see oncologist which unfortunately isn't until 1 April. This seems a long time to wait. I telephoned and managed to get the appointment for 25 March. The waiting is terrible. He was told he would probably get Chemo by the urologist. We are due to go on Holiday to Torremolinos for a wedding at end of May and we are now not sure what will happen. I haven't spoken to travel insurance yet and am dreading not being able to get insurance  for future holiday in July  Not that holidays are important at the moment!!!  Other than pains in his knees he is pain free at present. How did this go from 'may have cancer' to 'advanced prostate cancer with mets'. 

User
Posted 04 Mar 2019 at 22:57

Hi all. This is my first time posting on this site. My husband (68) has just been diagnoised with advanced stage 4 prostate cancer which has spread to his bones (spine, pelvis, sternum,  humerus and left side of skull. Gleason 8 (4+4) and PSA 121. He attended the doctor because he was weeing a lot especially at night. The doctor referred him to an urologist because of a psa of 121. We were told his Prostate was enlarged and that it may be cancer but there was lots of treatments available. On 24 January He was started on hormone tablets for 3 weeks with an injection on 5 February which he has to have every three month. He is waiting to see oncologist which unfortunately isn't until 1 April. This seems a long time to wait. I telephoned and managed to get the appointment for 25 March. The waiting is terrible. He was told he would probably get Chemo by the urologist. We are due to go on Holiday to Torremolinos for a wedding at end of May and we are now not sure what will happen. I haven't spoken to travel insurance yet and am dreading not being able to get insurance  for future holiday in July  Not that holidays are important at the moment!!!  Other than pains in his knees he is pain free at present. How did this go from 'may have cancer' to 'advanced prostate cancer with mets'. 

User
Posted 05 Mar 2019 at 06:41

The waiting is stressful but it sounds like he is on the correct treatment path.

Take the time to familiarise yourself with the illness and treatments so you can ask the onco lots of questions when you see him.

Most important - don't lose heart there are lots of guys on here with inspirational stories and advice regarding insurance.

User
Posted 05 Mar 2019 at 10:32
Dear Lizp,

URGENT BASIS TREATEMENT IS REQUIRED . HORMONE INJECTION (ZOLODAX) TO STOP CANCER CELLS + CHEMOTHERAPY MAY BE RADIATION ALSO .

REGARDS,

Bose

User
Posted 05 Mar 2019 at 11:15

LizP,

The hormone treatment should stop the growth and spread at this stage, by preventing testosterone getting to the cancer cells.

The tablets (probably bicalutamide, but there are others) block the testosterone hormone receptors that enable the cancer to grow. The injection (probably Zoladex, but there are others) stops generation of testosterone, but initially it causes a boost of testosterone (called a flare), and the tablets prevent that boost from getting to the testosterone receptors in the cancer cells. You normally continue with the tablets 1-2 weeks after the first injection, until it has time to start working.

This might be the only treatment that's required for the time being, and you should get plenty of time to consider any other treatment options. Some people are offered chemo early on, but others are not offered chemo unless/until the hormone treatment stops working, which can be many years later.

User
Posted 05 Mar 2019 at 13:55
Early days deffo on right path for treatment , just read up on it , ht side effects, NOT everyone has them but you will get some for sure , not much else you can do until you see the oncologist . Bare in mind you are one of many .
User
Posted 26 Mar 2019 at 14:07

We are all rooting for you . Hope it goes well tomorrow.

 

Phil

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User
Posted 05 Mar 2019 at 06:41

The waiting is stressful but it sounds like he is on the correct treatment path.

Take the time to familiarise yourself with the illness and treatments so you can ask the onco lots of questions when you see him.

Most important - don't lose heart there are lots of guys on here with inspirational stories and advice regarding insurance.

User
Posted 05 Mar 2019 at 10:32
Dear Lizp,

URGENT BASIS TREATEMENT IS REQUIRED . HORMONE INJECTION (ZOLODAX) TO STOP CANCER CELLS + CHEMOTHERAPY MAY BE RADIATION ALSO .

REGARDS,

Bose

User
Posted 05 Mar 2019 at 11:15

LizP,

The hormone treatment should stop the growth and spread at this stage, by preventing testosterone getting to the cancer cells.

The tablets (probably bicalutamide, but there are others) block the testosterone hormone receptors that enable the cancer to grow. The injection (probably Zoladex, but there are others) stops generation of testosterone, but initially it causes a boost of testosterone (called a flare), and the tablets prevent that boost from getting to the testosterone receptors in the cancer cells. You normally continue with the tablets 1-2 weeks after the first injection, until it has time to start working.

This might be the only treatment that's required for the time being, and you should get plenty of time to consider any other treatment options. Some people are offered chemo early on, but others are not offered chemo unless/until the hormone treatment stops working, which can be many years later.

User
Posted 05 Mar 2019 at 13:55
Early days deffo on right path for treatment , just read up on it , ht side effects, NOT everyone has them but you will get some for sure , not much else you can do until you see the oncologist . Bare in mind you are one of many .
User
Posted 05 Mar 2019 at 14:53
Have you ordered or downloaded the free ‘Toolkit’ information folder from this website?

It provides a wealth of information.

Cheers, John.

User
Posted 05 Mar 2019 at 16:24

Hi John. Yes I have received the Toolkit and it is very informative. Thank you.

 

User
Posted 08 Mar 2019 at 20:33

This must be such a worrying time for you both but the support and help from others on this site will help you 8 years ago my husband diagnosed with advanced prostrate cancer  gleason grade 8 he is still here. It has been a difficult journey and continues but keep trying to be positive wishing you both all the best

   

User
Posted 09 Mar 2019 at 08:48

Thank you this is encouraging to hear. 

User
Posted 09 Mar 2019 at 09:40

Hi

just to let you know that my husband was diagnosed with advanced PCA in Dec 2010, Gleason 10, He only had chemo last year and is now having Enzalutimide. It hasn't always been easy but he is still with me and I am incredibly grateful for that. He was 61 at diagnosis and said he'd make 70 and has, now planning to make 75, who knows, he might!

Love Devonmaid xxxx

User
Posted 09 Mar 2019 at 13:05

Thank you for this. It's good to hear all these encouraging stories  X

User
Posted 26 Mar 2019 at 09:39

Went to see oncologist yesterday. good news is PSA is down from 160 to 1.7! (Six weeks since he started hormone treatment). unfortunately in the last week he has started to have dizzy spells which now means he is not eligible for Chemo unless he can get the all clear from the neurologist before 5 May. i know research has shown that if you get chemo within 3 months of starting hormone you have a better survival rate. just a bit worried now abot this. but remaining positive on the PSA level.

User
Posted 26 Mar 2019 at 11:40

LizP, great news on the PSA, which means it is working well.

Hope that the Chemo can be sorted soon and continue on your unfortunate journey with us ...

When will you know if its going ahead on May 5th ?

Phil

User
Posted 26 Mar 2019 at 13:59

Here. Is seeing the neurologist tomorrow so will know more then. Thank you.

User
Posted 26 Mar 2019 at 14:07

We are all rooting for you . Hope it goes well tomorrow.

 

Phil

 
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