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User
Posted 21 Feb 2024 at 15:46

I was diagnosed with prostate cancer, gleason 3+4, T1, N0 M0,  3 years ago, and at that time the agreement between the urologists, my wife and myself was to embark on active surveillance.  No problems were raised at all for the next 3 years, all PSA's were stable.  My wife, being a retired health professional, and having read about this  to the n'th degree, insisted  I should have another scan to see how things were going.  The urology consultant was OK with this.

Fast forward  3 months to now.  The scan showed something 'that needed to be looked at under a microscope' - their words.  So a biopsy.  Results of this, much to their, and obviously my surprise,  were now locally advanced to the capsule, Gleason 4+5, T3a, N0 M0.  Not to the seminal vesicles or anywhere else thankfully.  So much for stable PSA's. Thank goodness for the wife's persistence.  Action was  sprung into immediately, Bicalutamide prescribed to start THE SAME DAY, and  first Prostap injection 2 weeks later,  for at least 6 months, but almost certainly longer.  Then radiotherapy, not for at least 6 months, and maybe a bit longer.  The plan is to cure this, and although they did give me information about surgery, I could tell, without them saying so in so many words, they were leading me to this treatment plan.  Given that I am 76, i have high blood pressure and slight asthma, a general anaesthetic probably isn't the best plan.  

So here I am.  I'd love to hear from anyone who is about to, or is in the middle of travelling this same road.  As yet, I have no little to no symptoms  from the hormone treatment, but of course it's very early days.   Anything anyone can tell me, who is further down the road than I am.  

The thing  that's causing me the most frustration though?  Travel insurance.  I had a policy attached to a bank account, which now declines to insure me at all.  I would have been happy if they'd just covered everything else an exclude the prostate, after all what's going to happen with it any time soon.   The questions asked in the searches aren't the right questions, i.e. am I waiting for treatment, not really, in as much as I am not on a waiting list and could be called any time.  I know I won't get radiotherapy for at least 6 months. 

I have searched in vain for a policy that will exclude it, and if anyone out there knows of one that does, I'd love to know about it.  I can get a policy, just for a week mind you, that costs half as much as the holiday costs.  I'd not mind just going with the GHIC card as it's europe we're going, but of course you have to consider those unlikely events like having to be repatriated, not covered by the health card.  Can you buy a simple policy just covering repatriation and nothing else?  Seemingly not.  I get the feeling sometimes that once you develop something like this, those 'out there' that make the decisions, think you should just stay at home and vegetate.

Anyway, rant over.  I am really happy to converse with, and indeed rant with, anyone who is having the same or similar frustrations.  Ranting is really good for you sometimes, especially with like minded people.  

User
Posted 21 Feb 2024 at 15:46

I was diagnosed with prostate cancer, gleason 3+4, T1, N0 M0,  3 years ago, and at that time the agreement between the urologists, my wife and myself was to embark on active surveillance.  No problems were raised at all for the next 3 years, all PSA's were stable.  My wife, being a retired health professional, and having read about this  to the n'th degree, insisted  I should have another scan to see how things were going.  The urology consultant was OK with this.

Fast forward  3 months to now.  The scan showed something 'that needed to be looked at under a microscope' - their words.  So a biopsy.  Results of this, much to their, and obviously my surprise,  were now locally advanced to the capsule, Gleason 4+5, T3a, N0 M0.  Not to the seminal vesicles or anywhere else thankfully.  So much for stable PSA's. Thank goodness for the wife's persistence.  Action was  sprung into immediately, Bicalutamide prescribed to start THE SAME DAY, and  first Prostap injection 2 weeks later,  for at least 6 months, but almost certainly longer.  Then radiotherapy, not for at least 6 months, and maybe a bit longer.  The plan is to cure this, and although they did give me information about surgery, I could tell, without them saying so in so many words, they were leading me to this treatment plan.  Given that I am 76, i have high blood pressure and slight asthma, a general anaesthetic probably isn't the best plan.  

So here I am.  I'd love to hear from anyone who is about to, or is in the middle of travelling this same road.  As yet, I have no little to no symptoms  from the hormone treatment, but of course it's very early days.   Anything anyone can tell me, who is further down the road than I am.  

The thing  that's causing me the most frustration though?  Travel insurance.  I had a policy attached to a bank account, which now declines to insure me at all.  I would have been happy if they'd just covered everything else an exclude the prostate, after all what's going to happen with it any time soon.   The questions asked in the searches aren't the right questions, i.e. am I waiting for treatment, not really, in as much as I am not on a waiting list and could be called any time.  I know I won't get radiotherapy for at least 6 months. 

I have searched in vain for a policy that will exclude it, and if anyone out there knows of one that does, I'd love to know about it.  I can get a policy, just for a week mind you, that costs half as much as the holiday costs.  I'd not mind just going with the GHIC card as it's europe we're going, but of course you have to consider those unlikely events like having to be repatriated, not covered by the health card.  Can you buy a simple policy just covering repatriation and nothing else?  Seemingly not.  I get the feeling sometimes that once you develop something like this, those 'out there' that make the decisions, think you should just stay at home and vegetate.

Anyway, rant over.  I am really happy to converse with, and indeed rant with, anyone who is having the same or similar frustrations.  Ranting is really good for you sometimes, especially with like minded people.  

User
Posted 21 Feb 2024 at 17:09

Hi John,

That must have as a shock to you but at least they’ve been quick at getting treatment started. I am on the same treatment plan as you and you can read about ‘MY Journey through HT and RT’.

I have had many side effects from HT but by far the worst is joint ache, which I’m trying hard to manage…with limited success. All the other side effects I can live with. a I didn’t get any real side effects from RT except a little trouble controlling my bowels towards the end of my treatment. many men though aren’t really bothered  by side effects and if you’re only on it for a limited time then hopefully you can escape. I’m on it for 3 years I’m told and I’m 20 months into it.

With regards to Travel insurance I used AllClear as I found their web site easy to navigate and the questions were clear. I also had insurance with RBS but computer said NO! when I asked them to add this😡 When I took out the policy last year I hadn’t started RT and it cost £300 for the year, this year I have just renewed for £107. The question they ask exclude HT as a treatment and also exclude spread to Seminal Vesicles which is good for me as I am T3B. I don’t include cancellation as we have a place in Fuerteventura and all we lose is the price of a Ryanair flight should we need to cancel. Your high blood pressure will certainly increase the premium but I had other health issues as well….just make sure you declare EVERYTHING as  it seems ALL insurance companies do everything they can to avoid paying out.

I would advise you to stay as active as possible, if you’re a member of  gym, get going and don’t stop during HT treatment, even during RT if you can. If not buy some resistance bands and do weight bearing exercises.

all the best,

Derek

 

User
Posted 21 Feb 2024 at 18:05

Originally Posted by: Online Community Member

I was diagnosed with prostate cancer, gleason 3+4, T1, N0 M0,  3 years ago, and at that time the agreement between the urologists, my wife and myself was to embark on active surveillance.  No problems were raised at all for the next 3 years, all PSA's were stable.  My wife, being a retired health professional, and having read about this  to the n'th degree, insisted  I should have another scan to see how things were going.  The urology consultant was OK with this.

Fast forward  3 months to now.  The scan showed something 'that needed to be looked at under a microscope' - their words.  So a biopsy.  Results of this, much to their, and obviously my surprise,  were now locally advanced to the capsule, Gleason 4+5, T3a, N0 M0.  Not to the seminal vesicles or anywhere else thankfully. 

A very warm welcome to the forum John. Your journey almost exactly mirrors mine. I have often stressed on here the unreliability of PSA checks and the need for follow up MRIs when on active surveillance. It would appear that your Trust like mine breached NICE guidelines in not giving you a follow up MRI 12-18 months after biopsy. It's dis graceful.

I'll attach a link to my case, I think you'll be amazed by the similarities.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

 

Edited by member 21 Feb 2024 at 18:10  | Reason: Not specified

User
Posted 21 Feb 2024 at 22:37

Thanks for the response. It’s been a bit of a roller coaster ride the last few weeks but it’s sinking in now and it’s a matter of getting on with it. My wife keeps telling me that now I’ll know how menopausal women feel!!

She is trying to get me to join the gym she goes to, as is the specialist nurse, but I’m not sure. I’ve never seen it as my kind of thing. I enjoy walking but currently, to add insult to injury, I’ve developed a dodgy knee, which is preventing too much walking. Hopefully I’m getting this sorted soon. 

have checked out all clear insurance and they will cover me but v expensive  will have to bite the bullet soon though

I’ll find your posts on here and have a read through them  I’m going to be interested in other people’s experiences and how they managed them 

 

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User
Posted 21 Feb 2024 at 17:09

Hi John,

That must have as a shock to you but at least they’ve been quick at getting treatment started. I am on the same treatment plan as you and you can read about ‘MY Journey through HT and RT’.

I have had many side effects from HT but by far the worst is joint ache, which I’m trying hard to manage…with limited success. All the other side effects I can live with. a I didn’t get any real side effects from RT except a little trouble controlling my bowels towards the end of my treatment. many men though aren’t really bothered  by side effects and if you’re only on it for a limited time then hopefully you can escape. I’m on it for 3 years I’m told and I’m 20 months into it.

With regards to Travel insurance I used AllClear as I found their web site easy to navigate and the questions were clear. I also had insurance with RBS but computer said NO! when I asked them to add this😡 When I took out the policy last year I hadn’t started RT and it cost £300 for the year, this year I have just renewed for £107. The question they ask exclude HT as a treatment and also exclude spread to Seminal Vesicles which is good for me as I am T3B. I don’t include cancellation as we have a place in Fuerteventura and all we lose is the price of a Ryanair flight should we need to cancel. Your high blood pressure will certainly increase the premium but I had other health issues as well….just make sure you declare EVERYTHING as  it seems ALL insurance companies do everything they can to avoid paying out.

I would advise you to stay as active as possible, if you’re a member of  gym, get going and don’t stop during HT treatment, even during RT if you can. If not buy some resistance bands and do weight bearing exercises.

all the best,

Derek

 

User
Posted 21 Feb 2024 at 18:05

Originally Posted by: Online Community Member

I was diagnosed with prostate cancer, gleason 3+4, T1, N0 M0,  3 years ago, and at that time the agreement between the urologists, my wife and myself was to embark on active surveillance.  No problems were raised at all for the next 3 years, all PSA's were stable.  My wife, being a retired health professional, and having read about this  to the n'th degree, insisted  I should have another scan to see how things were going.  The urology consultant was OK with this.

Fast forward  3 months to now.  The scan showed something 'that needed to be looked at under a microscope' - their words.  So a biopsy.  Results of this, much to their, and obviously my surprise,  were now locally advanced to the capsule, Gleason 4+5, T3a, N0 M0.  Not to the seminal vesicles or anywhere else thankfully. 

A very warm welcome to the forum John. Your journey almost exactly mirrors mine. I have often stressed on here the unreliability of PSA checks and the need for follow up MRIs when on active surveillance. It would appear that your Trust like mine breached NICE guidelines in not giving you a follow up MRI 12-18 months after biopsy. It's dis graceful.

I'll attach a link to my case, I think you'll be amazed by the similarities.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance

 

Edited by member 21 Feb 2024 at 18:10  | Reason: Not specified

User
Posted 21 Feb 2024 at 22:37

Thanks for the response. It’s been a bit of a roller coaster ride the last few weeks but it’s sinking in now and it’s a matter of getting on with it. My wife keeps telling me that now I’ll know how menopausal women feel!!

She is trying to get me to join the gym she goes to, as is the specialist nurse, but I’m not sure. I’ve never seen it as my kind of thing. I enjoy walking but currently, to add insult to injury, I’ve developed a dodgy knee, which is preventing too much walking. Hopefully I’m getting this sorted soon. 

have checked out all clear insurance and they will cover me but v expensive  will have to bite the bullet soon though

I’ll find your posts on here and have a read through them  I’m going to be interested in other people’s experiences and how they managed them 

 

User
Posted 22 Feb 2024 at 00:05
I think you are possibly answering the questions incorrectly. You have already started treatment, you are on HT. You don't have advanced prostate cancer. You should be able to get affordable insurance (without having to exclude the prostate cancer) unless you are going to the USA. Have you tried InsuranceWith and Staysure?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Feb 2024 at 13:51

Just to add to the discussion about insurance... my circumstances are slightly different in that I had prostatectomy last October and PSA is now undetectable. I have high blood pressure, managed by meds. I'm 70 years old. 

I'm going to the USA for a week in March and have taken a single trip policy with InsuranceWith at a cost of £76. They also offered an annual multi trip policy for about £500.

I didn't think those prices were too bad. 

User
Posted 22 Feb 2024 at 16:05

I have spoken to an insurance company today. I was very clear that my treatment has started, ie HT, and the radiotherapy will take place after several months as part of the treatment plan. I am not on a waiting list. But the answer to the question, excluding hormone therapy( ?) are you waiting for treatment, the answer is to be yes 

don’t ask!!  It makes no sense. The young lady could understand where I was coming from but the system algorithms define what is a correct answer and what is not. The insurance industry is so far behind the curve here it’s crazy. To double the price of a policy because they determine I’m on a waiting list, which I’m not, is madness. But I’m not sure what I can do about it 

User
Posted 29 Feb 2024 at 14:33
So I’m new to this forum, sadly, my husband is just starting his journey with prostate cancer, but he is already living with Neuroendocrine cancer stage 4, 4 years since diagnosis but stable.

Insurewith, staysure and a few others do insure BUT you have to ring for a quote. The Neuroendocrine nurses also suggest to ask for a quote which covers everything not connected to your cancer/treatment. So luggage, flights, accidents etc.

User
Posted 29 Feb 2024 at 16:06

I have looked at insurewith, and it seems that for me at least, that is going to be the best option.  I have done a quote with them online where the best price is to be found, and it is  significantly cheaper than anyone else.  Some of the questions are a bit tricky to answer, especially the one that refers to waiting for a routine appointment.  I have no idea what they mean by a routine appointment.  None of mine  are emergency appointments so is that what they mean?  No idea.

So, I have the quote number and will have to call them to get clarity.  Sadly, the one area they fall down on is how quickly  they answer the phone.  Not very quickly  at all unfortunately.  I was holding on for almost an hour before giving up.  They do offer to call you back, but if you are not always available at the end of a phone, that's a difficult option.  

I am not travelling for a few weeks, so hopefully I can manage to get through before the day for our holiday comes.  Ironically, my wife, who has less serious medical conditions than I have can get a cheaper quote via compare the market!!  So for the first time, we are going to have to insure separately.  

User
Posted 10 May 2024 at 20:18

Back on here with some updates. The insurance company called insurancewith worked really well. once I had got the correct answers in my head, the policy was easy to obtain, and cost me a quarter as much for one week's insurance than the algorithm driven companies want to charge. This company asks very specific questions, directed at you, even to the detail of what your latest psa was. So i will be going with them again.

And talking of psa, I had a return to hospital for my second prostap 3 injection and it had dropped from 5 or thereabouts, to 0.5, so they were pleased with that. Hopefully this will stay at this level, or go even lower with luck, so the radiotherapy when I get it goes well. For anyone just embarking on this process, my side effects are some hot flushes, but not unbearable or unmanageable. No boobs grown so far, feeling a bit more tired than before, and upper body strength definitely diminishing. The downstairs department, well let's not go there. However, a better urine flow which is a positive.

My wife says I am a bit vague sometimes, which I agree with, but she has no room to talk so it could be an age thing as well!! I am definitely more emotional and can tear up at the drop of a hat, especially when I think about my great grand daughter who is 10 months old now. She is adorable and sometimes I just have to cry at how gorgeous she is.

One of the worries I had was that I might, in my head, feel as though I am a different person. This hasn't happened though. So taken all around, things are pretty positive. I am expecting an appointment with the oncologist in a couple of months or so to discuss the radiotherapy which, with luck and a following wind will take place around november/december. So, after all my this year's holidays, and before next year's start out again. One thing I have come to the conclusion about is, if you can do it now, then do it now. We are about to lose a very good friend, who swanned off to Australia 4 months, ago and has now not got long to live due to advanced lymphoma. So always look on the bright side of life. Now who was it that sang that song!

I hope this has appeared in the right place, I am not someone who is used to these online forums.

User
Posted 10 May 2024 at 21:33

Great to have an update from you John and your words resonate so closely with me. I guess you’ve got a while to go on HT so my advice would be to keep active and do what you can to keep your muscle mass. I started to suffer joint pain at about 1 year into HT treatment and after 2 years am stopping HT. My PSA is undetectable and the Onco is happy for me to stop a year early.  I’ve suffered really bad joint pain/weakness on my knees(first) and now my hips, and have got a range of exercises from my physio to strengthen my glutes - even after a few days I can begin to feel a difference.

Im so pleased you got your travel insurance sorted, a lot of people recommend insurewith. I’m with AllClear which I did online and it was very clear with the questions. I have no idea what they’ll be like should I need to claim, but I guess thats the issue with ALL insurance companies…..you just need to make sure you declare EVERYTHING. A year after finishing RT the premium dropped to just over £100 for an annual policy. 

Enjoy your holiday(s) and as you say….live for today! I’m off to Fuerteventura tomorrow for 3 weeks🌞🌞🌞

Derek

User
Posted 11 May 2024 at 09:39
Decho - interesting what you say about joint pain. I have had a problem with my knee, from before I started the Prostap. I know it's mild to moderate arthritis, and have had fluid drained, and a steriod injection. This did improve things for a bit, but of late the fluid has returned and it's getting painful again. Only when bearing weight, and sometimes a bit uncomfortable finding a position in bed that doesn't make it worse. It's very painful first thing, but I can walk through it more often than not.

I wonder if the injection has possibly made the situation worse than it might have been. Nuisance isn't it having a potentially serious condition and feeling no effects from that, but the knee is causing the issues!! I have an appoint soon with the physio and see what they have to say. My wife is still trying to get me to join the gym she goes to for water exercise, but I don't enjoy swimming and have never seen the gym as my happy place. But maybe I need to get some non weight bearing exercise as well as walking. I am having to consider it now.

I think I may have confused people with the insurance company. I have looked at insurewith, but they weren't helpful. Mine is insurancewith - I know confusing or what. Mine is a company started up by someone who had breast cancer and struggled to get insurance, and asks very specific questions relating to the cancer and how it might impinge on travel. It take forever to fill in the quetions but in the end it's a very good price. If you have medical conditions like heart problems etc. they are not so good, it's cancer they are particularly good at considering.

We haven't ourselves made an insurance claim, but close relatives have, once for - believe it or not - a triple by pass in Florida, and the other a ruptured appendix and surgery, also in Florida. Massive claims but no quibbles at all. i believe that was All Clear. I always check the reviews before I commit to buying anything, and this one seems to be pretty good. So onward and upward.

Enjoy Fuerteventura, we just came back from Tenerife, first every visit, and loved every minute.

User
Posted 05 Sep 2024 at 09:55

Not sure if this is how I post updates, slight brain fog from the prostap!!  Since last time I posted, I have continued on Prostap 3, every three months obviously, and had all the expected side effects.  Put on some weight, breast growth (but not that much), hot flushes but very short lived and not an issue, and the brain fog, and feeling moe tired.  All this will sound familiar with those in the same circumstances.

I have recently had my third injection, so been on it 7 months now.  So far, no appointment with the oncologist re the radiotherapy.  Not sure at this stage how much this matters.  Latest PSA was 0.5 but they have never been that high, so not sure I believe in them really.  I have been in touch with the appointments department at the hospital where I am to have the radiotherapy, but they have nothing showing for me. 

My daughter works as a GP Secretary so I have asked her how this all works.  Evidently, the referral letters are triaged by the consultant, and she (mine is a lady), decides on urgent, not so urgent, and routine, i.e. those who could have opted for active surveillance, but have decided to go for radiotherapy instead.  

I'm not at all certain where I fit into all this.  I have, as already posted (should anyone actually be able to find it), locally advanced cancer, T3a NO.  No bone metastases from the bone scan I had back in February.  I am guessin this is not considered urgent, although I have no idea what the criteria for urgent is.  The hosptal I am attending is a renowned cancer hospital, thus they have referrals from all over the country, not just my local area.  

I also did post some things about travel insurance, and I have been lucky to find one that will cover me for this, and my other conditions, high BP, asthma and arthritis of the knee.  They don't charge an arm and a leg either, so for anyone who is in this position, try Insurancewith.  They won't let me buy an annual policy but presume that's because of the uncertainty as to when I will have the radiotherapy.  They ask a multitude of questions, but to me that means I'm getting more of a personalised quote, rather than algorithm driven one.  

User
Posted 05 Sep 2024 at 15:00

Hi John thank you for your very useful post. My OH Alan is in a very similar position as yourself,  he's due 2nd HT jab on the 11th September, and he will also have Radiotherapy at a later date.

 We are due to go on a holiday coach tour to Spain in Oct. (This was booked up before he was diagnosed  with PC.) He has to get travel insurance also, when I tried to get a quote with Insurewith, they won't quote until he has had 2nd jab.☹️ Thanks to you we will try Insurance with now and see how we get on. We do have insurance through the bank. Did you phone first or email them John please?

Regards

Jac & Al

User
Posted 05 Sep 2024 at 17:52

We also have insurance via the bank. They’ll insure my wife but not me, hence why I have to get my own. 

we did the insurancewith policy online. It’s quite straightforward although a bit time consuming due to all the questions they ask. Obviously any other medical conditions have to be declared as well.  Age affects the price also, as I’m 77 that means I pay more without anything else. 

Good luck. 

User
Posted 05 Sep 2024 at 18:53

Thanks John for the info, hopefully we can get it sorted without costing arm and leg for a 72yr old.🤞

All the best to you

User
Posted 05 Sep 2024 at 22:29

Hope you get sorted out ok. Post and let us know.

Also hope the radiotherapy gets done in a timely fashion. I guess where you’re located and the hospital you’ll be attending will impact on waiting times. 

User
Posted 06 Sep 2024 at 08:36

Will do thanks John. 

Al had his appointment come through yesterday to see the Oncologist for the 1st time on the 16th September. We are at Wolverhampton. Initially results for Scan and biopsy took a while last year, (NEG Biopsy) improved since he was diagnosed in June for PC gleason 9 after Turp surgery for BPH ☹️

 

User
Posted 06 Sep 2024 at 11:29

That’s wonderful he’s getting seen soon. I know from my results I won’t be triaged as most urgent, I suspect I’m just into intermediate urgent. Gleason 9 but 4+5 rather than the other way around. No spread into seminal vesicles. 

I’d love to get the radiotherapy done before Christmas but realistically I’m probably looking at early next year. 

User
Posted 08 Sep 2024 at 08:08

John my dad as the same as you not sure where it as spread yet though they have said that the lymph nodes are slightly raised but no mass don’t understand all of this it’s worrying me 

User
Posted 08 Sep 2024 at 12:27

Terriex.  I know this much be all very worrying and confusing.  How bad, or not this is depends on so many things.  The scoring they use to determine how slow, or fast growing they think the cancer is, whether it is still located inside the prostate, whether it has spread outside the prostate into the surrounding area or not, and if it has spread somewhere else.  

Obviously it's much better to have a slow growing one, contained within the prostate, but all of these things take time to work out.  How many tests has your dad had, and are there more to come.  Has a treatment plan been worked out yet.  I understand you might not want to put personal details on a forum like this.   

You mention lymph nodes being 'slightly raised", I assume you mean enlarged?  There are many reasons for lymph nodes to be enlarged, one of which can be that the cancer has spread there, but it can be a sign of infection.  

Does your Dad have access to the specialist nurses at the hospital he's attending?  They are wonderful at explaining what's going on, and if you are able to go with him to appointments they can explain it to you.  If not, maybe your Dad can give them permission to speak to you.  It's a complicated illness with all the variations there can be, but knowing as much as you can about it help you to manage your concerns.  

Please come back on here though, there are many good people who would help you to understand it, and hopefully ease your worries a little bit.  

 
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