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User
Posted 05 Jul 2022 at 10:47
Thank you Lyn and have a good understanding of what to expect this evening. I have also spoken to a nurse who was very reassuring, especially with regard to my hubby's feelings of anxiety about this evening's meeting.
User
Posted 05 Jul 2022 at 18:39
HI all, just back from our meeting with the Consultant to het hubby's biopsy results. The bad news is that his Gleason score is 10 which is the highest you can get. Also confirmed the cancer has spread to most of the bones, pelvis, spine and lymph nodes. Mike is going to be referred to an Oncologist and we will wait and see what the next course of treatment is. So all in all we are trying to take in the latest bit of news. I need to look up a lot more on Gleason scores and the prognosis. IN the meantime I will try and make sure that Mike remains positive.

I am feeling a bit down as I was really hoping for a better outcome.
User
Posted 05 Jul 2022 at 19:53

Hi Maud 2 years ago my Gleason score was 9 oncologist said could have been 10 luckily bone scan clear now psa 0.01 and still working don't give up there is always hope see what the treatment plan is going forward hope this helps gaz 👍

User
Posted 05 Jul 2022 at 20:24
Hi Gaz, thank you for your encouragement. It does mean a lot. Unfortunately, Mike's bone scan showed cancer spread to the pelvic and spine, so not good . However, will wait for the next course of treatment.
User
Posted 05 Jul 2022 at 20:59

Sorry to see this Maud.


It’s so true that some can respond incredibly well to treatment so keep positive and keep strong.


When my husband was diagnosed and we were told it had spread to the bone (this later changed) we watched the programme that Bill Turnbull did called ‘staying alive’ it’s on All 4. Not sure if you’ve ever seen it but he was diagnosed I think 2017 and had extensive mets. I found the program really emotional but it definitely helped me to see that there are things out there that can help. 


Wishing you both all the very best x

User
Posted 05 Jul 2022 at 21:07

Thanks for your encouragement Elaine. I will try and watch the programme you mentioned. Hope your husband is doing ok. X

User
Posted 05 Jul 2022 at 21:52

Hi Maud, I got a G9. I have no mets so hopefully with RT/HT I may now live forever.


To be honest getting to 79 and still playing tennis and badminton is a good news story. With HT followed by some of the more advanced drugs, he may be able to live long enough to die from something other than prostate cancer.

Dave

User
Posted 05 Jul 2022 at 22:19
Hi Dave , I am hoping that Mike who was 80 last week will keep going for a long time. The consultant did say that his physiology was that of a young man. RIght up to now at this age, he has never been to the hospital for anything. So apart from commencing statins at the end of last year and having eye checkups, his health has been extremely good.

I cannot believe that as cancer has spread to his bones (spine, pelvis ) he is able to carry on playing tennis and badminton. Even the consultant appeared surprised. So please to hear you are doing well.

Maud

User
Posted 06 Jul 2022 at 03:24

Hi Maud I hope you and Mike are ok.   I know how you will be feeling emotionally.  It is horrible during the diagnostic process when each test or meeting seems to bring bad news, I have been on a similar path almost on the same timeline as you.  Just to say I am sending positive thoughts your way.  I think and feel physical exercise and fitness is a great way to help so I hope he can stay well and keep at that.  Best wishes. 

User
Posted 06 Jul 2022 at 08:08

Hi Michael thank you for your positive thoughts. I note you have a very similar journey to Mike. I hope you are keeping well and staying positive.  


We will wait for the next stage of our journey and see what the Oncologist has to say. Our Consultant said Mike will need Chemotherapy in tablet form. I hope we don’t have to wait too long to start treatment 🤞. 
Warmest wishes to you. 
Maud. 

User
Posted 06 Jul 2022 at 08:51

Originally Posted by: Online Community Member


We will wait for the next stage of our journey and see what the Oncologist has to say. Our Consultant said Mike will need Chemotherapy in tablet form. I hope we don’t have to wait too long to start treatment 🤞. 
Warmest wishes to you. 
Maud. 



He has already started treatment Maud, the hormone therapy. The tablet form of chemotherapy that he referred to will probably be abiraterone or apalutimide, which he will take in addition. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jul 2022 at 18:54
HI All, hubby and I are planning a holiday in September. Mike is very keen to go abroad, however I am more cautious due to his Gleason score of 10 and cancer spread to the bone, lymph nodes and lungs. Has anyone been abroad with similare diagnosis. We are not sure if it is worth taking a risk?

Maud
User
Posted 07 Jul 2022 at 00:08

Definitely go on holiday and enjoy yourselves. Gleason 10 is not going to affect holidays. Spread to bone mets, well theoretically he is at more risk of broken bones, so skiing and snowboarding are perhaps a little risky. The HT will probably stop mets doing any harm for a few years, and any deteriation in likely to be gradual not sudden.


I wouldn't want to travel to USA with a medical condition but certainly wouldn't hesitate with Europe.


You may find travel insurance very expensive, you can exclude existing conditions and it will be cheap again, but if anything goes wrong things might get awkward.

Dave

User
Posted 07 Jul 2022 at 07:36

Thank you Dave, for your encouragement and advice.  Well thank goodness Mike has never liked to ski👍  I will need to look at travel insurance as I imagine it will be very expensive which may restrict where we go. 

User
Posted 07 Jul 2022 at 08:00
Take the holiday, stick to Europe though...
User
Posted 07 Jul 2022 at 21:02

Hi Maud my husband has a similar diagnosis. G10 and spread to sternum and extensive lymph nodes. His psa is thankfully stable at the moment.


We got insurance in January for ourselves and two adult children through Worldwide Travel Insurance. It was a few hundred pounds but not too bad.


We’ve been on a weekend away in Europe and are going to Europe again for a week soon, then America later in the summer. Worldwide covers us and him in America.  We figure that we need to go away as much as we can while he can still get reasonable insurance premiums.


One thing to note, he told the companies when he first tried to get a quote that his cancer was ‘terminal’ not ‘incurable’. Made the difference between them saying no or yes to insuring him. 


 


 

User
Posted 07 Jul 2022 at 21:11

Hi Skye, thank you for your very helpful information regarding holiday insurance.  It is so reassuring to see that having a diagnosis such as my husband, does not mean traveling abroad is out of the question.  He has an appointment on Tuesday to see the Oncologist and hopefully, once his treatment commences we can then go ahead and book a holiday in Europe. I have insurance with Lloyds TSB which also covers Mike so will get a quote and see what happens.


All the best wishes to you and your husband and hope you both continue to have many holidays together. 


 

User
Posted 11 Jul 2022 at 16:27
Hi All, hope you are keeping well and enjoying the summer weather and also managing to keep cool.

I have booked a holiday in late September on a UK British Isle cruise. I will need to get an insurance for Mike and would welcome any advice from yoursleves on where to go for the cheapest rates. We are seeing the Oncologist tomorrow so will at least know what the next stage of Mike's cancer journey is.

We went away for the week end to Sherborne. Mike drove all the time and I must say he was absolutely fine. He played tennis this morning and will carry on doing this as long as she can which is brilliant for his mental health and well being.

Take care everyone and I look forward to any advice or suggestions on holiday insurance please.

Kindest Wishes
Maud
User
Posted 11 Jul 2022 at 17:35

This is a very low risk holiday, presumably you never leave UK territorial waters, treatment on the NHS is available all the time, even if you need air sea rescue to get to the hospital.  If the prostate cancer is increasing premium just exclude it from cover.

Dave

User
Posted 11 Jul 2022 at 17:58

You might need to check if you need your passport. My parents did a similar trip and were not allowed on board without a passport even though they did not leave UK territorial waters. 

 
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