Advanced Prostate Cancer and life expectancy (rant + sharing our approach)

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Hi everyone,

I posted a few weeks ago when we found out that my partner has metastatic prostate cancer spread to lymph nodes and bones. I received incredible responses and support. I am very thankful for that! We were shocked and a bit devastated by the news but we both got back up pretty quickly.

This is a bit of a rant; I hope it’s ok!

I am fed up with doctors and specialists who think it is right to put a time stamp on someone’s condition.

I have been a silent reader here for the past few weeks and I am horrified to read about people having been told that they have “this much left to live”.

The truth is that they absolutely DO NOT KNOW. Yes, there are stats, but remember that stats are based on a small sample of the population and that there are always new treatments coming up that would affect those stats.

In my mind, if you tell someone: You have 2 to 3 years left, there is a psychological effect by which this time frame will be stamped in their mind and inevitably, they will not make it over 3 years.

No. This must stop.

I would like to share with you how my OH and myself are approaching this terrifying diagnostic of Advanced Prostate Cancer.

Some might say we are fooling ourselves, but I like to think they are wrong.

First of all, we have agreed a treatment plan that we trust: Triplet therapy.

But that’s not all. We lived a relatively healthy life, but made further adjustments based on a lot of reading and vlog watching about advanced caner (not limited to prostate). I am happy to share the readings, etc. if anyone is interested.

I share everything that I find with my partner. We have a positive mind and when one of us is having a bad day (they do happen), we lift each other up, we do something we like, etc.

We have changed our diet to have less meat (we do love a good steak every now and then), more vegetables, eliminate sugar as much as possible and have more superfood that are believed to interfere with the cancer. MY OH was very active before but even more so now, cycling between 50 and 70km every two days.

We stay away from the negative as much as possible. We have a great oncologist who agreed that we should treat this as a chronic disease rather than a nasty illness that is going to kill him soon.

He said Advanced Prostate Cancer (at least here, in my OH case) is not TERMINAL (I used this word myself early on). This term also must stop being used. It is treatable and there are lots of options in case the cancer stops responding to one of the treatments.

 

We don’t have all the answers, far from. But keeping a positive mind and working together against this disease is the best we can do. Life is normal-ish, we have just been on a two weeks holiday, we go out to concerts, restaurants, etc.

We chose not to give this nasty disease so much importance in our lives, we refuse to give it the power to govern our lives. We are in charge.

 

Wishing everyone a great mid-week!

  • Yeah really hope my psa as started to come down and I come out of there with plan in place ,lady said something last time about 4 tablets a day leading to RT at a later date ,but when she upped my diagnosis everything was a bit of a blur after 

  • Hi, 

    I take my hat off to you being a really positive person, is as a family are still working on it. Fantastic to know you are doing things and going on holiday but can I ask about your travel insuranceFingers crosseds we are going next February, my husband should be finished his chemo this November Fingers crossed he doesn’t need any more chemo. Is the chemo an ACTIVE TREATMENT? that’s what is asks when doing a travel search. Also who did you get travel insurance with because one company won’t insure him another wants over 3K. What did you put in for the diagnosis cus they are asking , Have you had treatment or investigations within the past 2 years, very confusing what to declare without it shooting through the roof

    kind regards 

  • Good Morning  

    Here's a link to our Travel Insurance Forum:

    Travel insurance forum for cancer patients 

    Rather than spending ages completing online forms, may I suggest you ring the travel insurance provider direct for a quote - they all use the same systems for an online quote. We have an annual worldwide police with insurancewith the cost being £ 780. (See my profile for my issues!!).

    I hope this helps.

    Kind Regards - Brian.

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  • Hello there,

    Sorry you are going through this very stressful time.

    I can only comment for my OH, his PSA was low to begin with (check my profile for details) so he seems to be having a low secreting type of prostate cancer. We were shocked that it had already spread with such low PSA.

    The oncologist told us that the PSA would still reduce if treatment is effective but he will have scans more often to make sure (he is treated privately).

    I hope everything goes well, please get whatever prognosis you were given out of your head, no one knows how each person will react to their treatment and no one knows when any of us will check out of this life.

    It's a terrible news but life must go on as normal as possible. Big hug x

  • We are currently on a road trip in France. Depending where you are travelling to, do get the EHIC or GHIC, those are completely free. I have myself had to make use of it once and they simply send the bill to the NHS. With this, you are fully entitled to treatments that are considered absolutely necessary, and that takes into account your existing medical condition.

    We haven't travelled outside of Europe since the diagnosis so I can't comment on insurance for international travel.

  • Do you mind d telling me which company you are with?

    We've had a difficult time with Staysure.

    We had to get a Fit To Fly letter from the consultant because OH was waiting for a biopsy to be done the week after our weekend away! Why they thought he shouldn't fly at that time goodness only knows!!

    There's also a terrible story in the Times today about Good to Go who have not settled a valid claim when a holiday had to be cancelled due to surgery for cancer. I'm  crossing them off my list!

    Thanks

  • Hello   .

    Brian (Millibob) is still on holiday so I have quoted from his response.

    We have an annual worldwide police with insurancewith.

    I can't make a recommendation because I don't have any personal experience of this company but the answer is in the last word.

    Hope you have some luck.

  • Another excellent piece of advice  . I have added a link to EHIC and GHIC for anyone interested. 

    https://faq.nhsbsa.nhs.uk/knowledgebase/article/KA-26795/en-us

    We are on the neuroendocrine journey with a low secreting PSA and also monitoring things with regular MRI's and CT scans so I would reiterate that our journey with prostate cancer is also atypical. 

  • I am start of my cancer journey on zoladex at mo but we have a holiday november this year .

    I used a company called insure with ,that was the best at £400 +most expensive allclear 15000 yeah thousands 

    My next appointment is September 2nd so any treatment will have to work around holibob 

    Mal c g 

    Stage 4 bone mets 

  • Hi

    Is that cost for 1 traveller?

    kind regards