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User
Posted 30 Sep 2014 at 04:07

Hi Everyone,

A thought occurred to me the other day which has been playing on my mind ever since.  I told my wife, thinking that she would just dismiss it as a load of rubbish but actually she was very interested in what I had to say (not always the case!) 

Just for your information, we live in a very quiet cul de sac of maybe 70 houses, on the very edge of Reading.  Anyone passing Reading on the M4 (junction 12) would probably see our houses in the distance, ours is the one with the front door that needs painting, was going to do it this summer but somehow I had other things on my mind (PCa diagnosis).  Anyway it was this.  I have PCa, my neighbour on one side of us had PCa nine years ago, which was sorted, but has recently been diagnosed with pancreatic cancer.  Our former neighbour on the other side of us, his wife died of cancer about 7 or 8 years ago while living next to us and the neighbour next to them, died of cancer about 5 years ago.  Added to this a good friend opposite us across the road, who we've know for years, has just been diagnosed with cancer again after surviving a bout of the disease ten years ago.  I hadn't even thought about it before but it does seem that out little group of houses has suffered more than most from this dreadful disease. 

It would be interesting to find out about the figures for the rest of the houses in the immediate area are but I'm not sure where I would get that information from.  Working for the media my first thought was that this would be a great story if it turned out to be more widespread than our little cluster of houses but I would be relunctant to publise it as I would be afraid my house price would fall if it became known.  You never know, if my treatment went badly and I needed to sell, which we probably would, I'd want to get the best price for the house, so we could go and see the world, while I had the chance.

One possible cause, which I'm sure CND would suggest, is that we live less than four miles away from the Burghfield nuclear bomb factory and only eight miles from the Aldermaston nuclear research centre.  In fact, some years ago, we had a monitor in our house for a period of time, to measure the radiation levels, provided by Harwell (I'd forgotten about that until I started writing this!).

I might do a bit more research to see what I can come up with but I thought I'd just post this to see if anyone else is in the same situation in the area where they live.

Steve

 

User
Posted 30 Sep 2014 at 11:57

There are known hotspots which I have read about and often near power stations or other potential problematic installations. I guess proving it is more difficult because it's not just the bare numbers but whether you can demonstrate a causal connection. Your house price would plummet though as you say so you may not want to advertise the fact!

One other thought is that does the incidence of Cancer amongst friends and neighbours increase when we are diagnosed if only becasue we notice it more. As about I in 3 have Cancer we would expect to find lots around us. I remember after having Cancer in 1982 every TV programme, newspaper and friend seemed to have a Cancer story. I have noticed it less this time though as my age group is particularly vulnerable there does seem to be more with cancer than I was probably aware of previously. For one thing when ithers know you have Cancer you get their stories almost spontaneously!

User
Posted 01 Oct 2014 at 20:55

OH Steve,

Please don't feel ashamed, everyone's journey on this rocky road is unique to them . Ok ours has not been great and our only claim to fame has been Trevor's high psa starting point (13.000) pretty unique ha. We had come down to 15  but have now had a rise to 66.

Funny old thing these Onco appointments just when you think it is all going well they hit you with something else. So not the news that you wanted to hear or as you say was expecting. I would keep focused on what your Onco says and if he or she is not worried then try and keep that to the front of your mind. I know it is not easy but you have so many options yet to explore.  I am sure that Lyn will come along and give some very helpful and wise statement. She has a habit of doing that.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Stay focused .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Oct 2014 at 10:46

Hi Steve,

I think there is a difference between having down times and being clinically depressed. Seeing the doctor will help clarify this for you and this will help decide if treatment is needed or not. Mood swings are more frequent at the outset becasue your life has been changed forever. Whatever the outcome you start to address issues like your own mortality and cannot avoid the massive impact on how you feel. I do believe that being as positive as you can helps. Indeed your own signature 'once you choose hope, anything is possible' to me is spot on. No amount of reassurance about your situation will help until you have got your own head around it. I found writing and talking to others invaluable in coming to terms with things. I did this in the 1980s when I had testicular Cancer and so in 2012 I felt more prepared for the second incidence of cancer, even though I have an incurable diagnosis now.

Express your doubts on here and I know people will give you support and encouragement and you will work these things out. Talk to friends and family, share your doubts and naming them will make it easier to move forward.

User
Posted 06 Oct 2014 at 22:34

Hi Steve,

Re emotions and being tearful , firstly thank you for being very candid about your emotions it is very refreshing to read . I think a lot of the Guys on here probably feel the same way but would never admit it, stiff upper lip and all that.

Is it the HT  or just plain old vulnerability to hear the words that you have Cancer rocks your very soul, these are the words that we all dread. In the beginning with tests and appointments we are kept busy , still in shock , carried along in a whirl wind of  emotions. Then there is the lull where you are know waiting for your treatment to start. To be honest if you weren't tearful then you wouldn't be human.

Yes the HT must play a part but don't forget the major shock that you have had. It isn't always in the beginning that we react sometimes it creeps up when we are not expecting it.

Good on you for the charity work, I understand where your wife is coming from she wants you to concentrate on you but sometimes helping others gives a boost and a feel good factor.

Nearly at the start line Steve, try and stay strong.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Oct 2014 at 09:50

Good luck for today Steve, I will be thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Oct 2014 at 10:12

Hi Steve,

Good luck today, it must give you a real boost to know that so many people are thinking of you and wishing you all the best. I think your desire to pass on the awareness message to other men is a really positive step and you will find that your drive to help others is an important part of your recovery.

Good luck to you,

Miss

User
Posted 14 Oct 2014 at 17:02

So how did it go? I hope all was well and you now have a clear picture of how things will run for the next few weeks!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Oct 2014 at 18:15

Hope it went okay for you Steve after all the worry?

We had scan results today - all good!! So hope for you too to be positive.

Best of luck

Alison

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User
Posted 30 Sep 2014 at 11:57

There are known hotspots which I have read about and often near power stations or other potential problematic installations. I guess proving it is more difficult because it's not just the bare numbers but whether you can demonstrate a causal connection. Your house price would plummet though as you say so you may not want to advertise the fact!

One other thought is that does the incidence of Cancer amongst friends and neighbours increase when we are diagnosed if only becasue we notice it more. As about I in 3 have Cancer we would expect to find lots around us. I remember after having Cancer in 1982 every TV programme, newspaper and friend seemed to have a Cancer story. I have noticed it less this time though as my age group is particularly vulnerable there does seem to be more with cancer than I was probably aware of previously. For one thing when ithers know you have Cancer you get their stories almost spontaneously!

User
Posted 30 Sep 2014 at 13:00

Steve,

Bu@@er the house price run for the hills.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2014 at 13:22

Hi Steve,

Sorry for my strange sense of humour , so I will know do a more serious answer. Paul is right about statistics as 1 in 3 will develop Cancer then it doesn't seem quite so strange to have that many near neighbours with this disease . Also people don't always talk about it and when they find out that you also have it they are much more likely to talk about there own health.

However and this is where I am going to throw a curve ball, many years ago I lived in Swindon so not that far from Reading. I had a dog that was diagnosed with Lukemia  this is rare in dogs and my vet at the time said that it was the 3rd dog that week that had been diagnosed with the same disease. The vet also remarked that in the life of a practising vet you would expect 3 in a 30yr time frame and certainly not 3 in a week. She also suspected near by Nuclear Plants.

So who knows we have all heard of Cancer Hot spots across the Country.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2014 at 14:31

Thanks Paul & Julie,

Sensible thoughts as I would expect from you both, you're probably right.

Paul, I'm amazed how much I've noticed anything related to Cancer on TV, in newspapers or magazines and on roadside billboards.  It has been annoying my wife because she says she can't get away from it.

Julie, I have to admit you made my laugh with your first post.  I needed that today.  I have been feeling a bit nervous because I have a meeting with my oncologist this afternoon.  Last time I saw her she mentioned that she thought there might be signs that the cancer may have spread to one of my ribs (see my profile).  In her review letter she sent to my doctor she said that I seemed "a little disconcerted" by the news, that must be the medical term for "scared sh*tless"!  Anyway, I'm sure things will be ok otherwise they would have contacted me before now. I used to be very confident about things before diagnosis.  Nowdays I'm not so sure about things that happen in my life, things will never be quite the same again.

Thanks to you both, you're really helping me through this.

Steve

User
Posted 30 Sep 2014 at 15:14

Good luck for this afternoon Steve, although I am sure you won't need it and everything will be fine. I know what you mean about worrying about everything after dx. It is very difficult to remain positive after you have been hit by The Cancer Train. Trevor recently had an attack of hives after eating a spicy meal with Chillies in it of course for just a split second I was convinced the lumps on his face where the cancer spreading. I managed to control my thoughts and rationalise it but it's not easy. (Mrs Worry Worts) .

As you say Drs tend to throw out statements and then leave you hanging for ages, I am sure if  the rib was of concern they would have  called you back before now. Yes I did know about the rib , I have been following your story, not that I am a stalker.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Let us know what happens.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Sep 2014 at 15:53

I have done a lot of reading around cancer clusters in the past. They do exist and usually there will be scientists somewhere in the background monitoring new diagnoses, outcomes, etc using data provided by local oncology departments.

Technically, for a cluster to be recognised as a cluster, the cancers must all be of the same type. So where I live, there have been a number of brain tumours and if you map them on an A-Z they lie in a perfect straight line. However, the brain tumours have not all been exactly the same variation so they are not a cluster. Cancers have such different causes, some are about what we put into our bodies (smoking) or expose our bodies to (melanoma in coastal areas perhaps) whilst others are related to environmental factors or genetics. In an area of high social depravation where there are more smokers, you expect lung cancer to be more prevalent. In a generally middle class or professional area with an ageing population, people live longer and we are more likely to see more people succumbing to the age-related cancers such as bowel/colon.

For a cluster to be truly recognised as such, one specific cancer needs to be over-represented and known as environmentally sensitive.

That's my understanding, anyway.

Edited by member 30 Sep 2014 at 15:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Sep 2014 at 20:44

Hi Lyn,

Thanks for your insight into this, you make some useful points.  The cancers in our street, I believe, were different types, 2 Prostate, 1 Pancreatic, 1 Breast, 1 Cervical and I think, 1 Skin cancer.  I suppose from what you say, it would be difficult to link these to any one cause. 

I'd still be interested in finding out what the figures are for my area though, I'll have to have to check with the health authority pr officer, he should be able to give me advice as to who would have these figures.  Before he took that job I'd worked with him for many years on a newspaper where he'd been the crime reporter.  He owes me a few favours.

Anyway, thanks again for your help.

Regards,

Steve

User
Posted 30 Sep 2014 at 21:16

Hi Julie,

Thanks for your messages.

I had the meeting with my oncologist as planned.  She was happy with my progress but it did provide a surprize that I wasn't really expecting.  The results of my blood test done last Thursday showed a rise from my last test (mid August, 2.35) to 4.14 now.  She said that was not unusual and she wasn't really concerned but it's a bit unsettling.  I think my wife was "a little disconcerted", to quote the onco's phrase from the last review letter!

I asked about the rib she had suspected the last time we met and she said she had seen the x-rays done to investigate this and decided that it wasn't of concern at the present time, so that was good news.

Overall, she was very happy to go ahead with the Radiotherapy 2 weeks today.

Glad I've got that meeting out of the way, I was a bit nervous after last meeting we had.

I feel rather ashamed when I read what's happened to Trevor, he's had a really had a tough journey.  It makes my situation seem minor in comparison.  Please send him my best wishes.

Thanks for supporting me in my journey, I really appreciate it.

Take care.

Steve

 

Edited by member 30 Sep 2014 at 21:31  | Reason: Not specified

User
Posted 01 Oct 2014 at 20:55

OH Steve,

Please don't feel ashamed, everyone's journey on this rocky road is unique to them . Ok ours has not been great and our only claim to fame has been Trevor's high psa starting point (13.000) pretty unique ha. We had come down to 15  but have now had a rise to 66.

Funny old thing these Onco appointments just when you think it is all going well they hit you with something else. So not the news that you wanted to hear or as you say was expecting. I would keep focused on what your Onco says and if he or she is not worried then try and keep that to the front of your mind. I know it is not easy but you have so many options yet to explore.  I am sure that Lyn will come along and give some very helpful and wise statement. She has a habit of doing that.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Stay focused .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Oct 2014 at 21:52

Hi Julie,

Thanks for your message.

I'm more or less happy with the way things are going with my treatment is going and with the PSA situation but something happened this morning that was totally unexpected. 

I woke up and felt so sad that I found it difficult to go to work.  I did but it was a struggle to get through the day.  I felt as if I was under a huge cloud.  I've never really felt that before or at least I can't remember feeling like that.  It did get better later in the day but it was frightening while it was happening.  I struggled to hold back the tears most of the time. 

There's no reason for me to feel this way, things are going well for me.  I can only think it's the hormone treatment playing it's part.  I have been really struggling with my emotions since starting the HT.  I can't believe that it has had such an effect.  I never used to cry, now I seem to do it several times a day.

I hope tomorrow is a better day.

Steve

Edited by member 01 Oct 2014 at 21:54  | Reason: Not specified

User
Posted 02 Oct 2014 at 06:58

Steve,

What you are feeling is normal, my OH and me do really feel like this has changed our lives and it does scare us. You are right in saying that a cloud seems to be permanently above us.

All we can do is get on with normal life and some days are better than others. You are coming into the main part of the treatment, which is daunting for everyone who has to go through it.

Focus on zapping those Ca cells and the fact that you are in the cure camp.

Thinking of you.

Alison

User
Posted 02 Oct 2014 at 10:40
Thanks Alison,

I am fortunate to have a chance of a cure. I really need to be grateful for that chance. Once the RT is out of the way I need to try and back to normal. Only that "normal" will never be the same as it was. I have changed forever.

Many men believe they are invincible, that nothing can ever stop them or get in their way to living to a ripe old age. How wrong that belief is. We are all frail human beings. We should listen to what our bodies are telling us and do something about it (good advice that I should have followed).

I want to play my part in passing on the message to other men so they are at least aware of the risk of the disease so hopefully, they don't make the same mistake as I did. My wife said that it's not my responsibility to save the world and where were the people who should have given me that information. She said that I should worry about saving myself before worrying about everyone else. This is where we disagree because she doesn't realise how much doing that helps me in my battle against PCa.

I'm running next year's Reading Half Marathon, not only to raise a bit of cash for PCUK but also to try and get the message out there to people who may not be aware of the dangers. This will give me a tremendous boost and make me feel as if I'm doing something worthwhile.

Keep in touch.

Steve

Edited by member 02 Oct 2014 at 11:18  | Reason: Not specified

User
Posted 02 Oct 2014 at 12:23

Good on you Steve, that is the spirit.

My OH is off to Cardiff today for his 2 year check over, MRI, CT, bone scan and the rest. He will be radioactive so cannot come home for the weekend.

A worrying time for us too, been dreading this for 6 months and then a 1 month wait for the results.

Not easy for anyone.

Keep posting!

Alison

User
Posted 02 Oct 2014 at 15:27

Alison,

Best of Luck. I'll be thinking of you both. It's never easy. Hope everything goes well and the results are good.

Waiting for the results is always the worst time. Before I was diagnosed, I thought I may have cancer. Six hours before my results appointment, I knew I had cancer because the hospital's automatic reminder system texted me about my appointment the following week. Only thing was, I didn't know of an appointment so all I could think is that they wanted to see me again after the results meeting which could only mean one thing, I was going to be told I had cancer.

Waiting a month is a long time, hope you're able to put it out of your mind a bit. I find working can help but if not just go and do something you both enjoy together.

I don't know what I'm going to do with myself for two years until I come off hormone treatment. As you know, that's when they will be able to tell if the RT has worked.

Let me know how things go. I think it's time I gave you a bit of support, you've given enough to me.

All the best,

Steve

Edited by member 09 Oct 2014 at 01:33  | Reason: Not specified

User
Posted 02 Oct 2014 at 19:31

Hi Steve, I seem to remember that you are to start your RT therapy this month so just wanted to wish you all the best. As someone who went thru' RT in 21012 I know that there is life at the other side and a damned good life too - focus on that. As for the HT side effects I seem to have had them all but seem manageable and all being well will come off that next year.

As for the crying I too at times can get a bit emotional crying for virtually no reason at all. I remember on one occasion just sobbing uncontrollably. and why I don't know.

I have recently become a volunteer speaker, which I really enjoy especially when you see the responses. That may be something to think about for the future.

Take care and best wishes.

User
Posted 02 Oct 2014 at 20:15

Hi Roger, 

Thanks for your message.  Really appreciate you taking the trouble to contact me to wish me well. 

I'm sure the RT will go fine, I'm looking forward to it.  I start the 19 treatments on Tuesday 14th October, the week after next.  It's getting closer!  Look out around about that time as I will be posting how I get on.

Thanks again, keep in touch.

Steve 

 

  

 

Edited by member 02 Oct 2014 at 20:16  | Reason: Not specified

User
Posted 03 Oct 2014 at 11:08

Thanks Steve.

The 2 years has come around quickly for us, same regime as yourself, and now the tests.

Everything crossed that it will be okay after years of worry, which will no doubt continue whatever happens.

Best wishes to all.

 

Alison x

User
Posted 05 Oct 2014 at 17:06
Steeve

Hi and thanks for your lovely post on my conversation too,I really do appreciate that.

I too got to thinking about clusters when Mick was first diagnosed. We had 3 cases of prostate cancer in our cul de sac of 6 houses, however two of the men were in their 80s regrettabbly one has since died not of Pca but of a respiratory problem, the other is still going strong at 89, basically there will be many things that happen along your journey that start you thinking of possible causes almost like rationalising, however almost every time there will be a straight forward answer. There are many factors as Lyn has said that contribute in different ways to differing forms of cancer.

There is one factor that I am hoping to do much deeper research into and that is a possible link between a specific type of genetic diabetes and prostate cancer. The form of diabetes is MODY diabetes, it is going to be a struggle for a number of reasons (lack of data, knowledge etc) By the time we get to the flyer in December I hope to have more to go on.

Sounds like you are going to be in great shape to start your RT on 14th October (another co-incidental date you will share with Mick as this would have been his 66th birthday), as for the feeling you had when you woke recently, do not be afraid or too concerned. HT does some very weird things as well as its primary job of giving your cancer a really hard time. Big emotional changes are one of the common side effects. If they happen frequently or become overwhelming or debilitating ask your GP for advice. A lot of Men (and indeed the wives and partners) take mild anti anxiety drugs to help get through this. Citalopram is the most common one. Having said that other Men say that these feelings become less intense and they cope with them in other ways like exercising or something.

Wishing you well and looking forward to meeting you soon.

xxx

Mo

User
Posted 06 Oct 2014 at 03:49

Thanks Mo,

I will be thinking of Mick on the 14th when I begin my RT.

There's one more co-incidence in our lives.  My only son is named Michael, named after my best friend at school and my wonderful father-in-law who sadly passed away from motor neurone disease.  It's strange how these co-incidences happen sometimes.

I might investigate getting something from the doctor to help with the low moods.  Everyone tells me to be positive, but that can be difficult when you're scared.  I'm not scared of the treatment, just of the outcome.  My confidence was damaged by the shock of my diagnosis.  I ignored symptoms I had for several years believing I couldn't have cancer but I was wrong.  I was stupid.

Sorry, just realised how late it's getting.

Anyway, I look forward to seeing you in December. 

Take care.

Steve 

User
Posted 06 Oct 2014 at 10:46

Hi Steve,

I think there is a difference between having down times and being clinically depressed. Seeing the doctor will help clarify this for you and this will help decide if treatment is needed or not. Mood swings are more frequent at the outset becasue your life has been changed forever. Whatever the outcome you start to address issues like your own mortality and cannot avoid the massive impact on how you feel. I do believe that being as positive as you can helps. Indeed your own signature 'once you choose hope, anything is possible' to me is spot on. No amount of reassurance about your situation will help until you have got your own head around it. I found writing and talking to others invaluable in coming to terms with things. I did this in the 1980s when I had testicular Cancer and so in 2012 I felt more prepared for the second incidence of cancer, even though I have an incurable diagnosis now.

Express your doubts on here and I know people will give you support and encouragement and you will work these things out. Talk to friends and family, share your doubts and naming them will make it easier to move forward.

User
Posted 06 Oct 2014 at 22:34

Hi Steve,

Re emotions and being tearful , firstly thank you for being very candid about your emotions it is very refreshing to read . I think a lot of the Guys on here probably feel the same way but would never admit it, stiff upper lip and all that.

Is it the HT  or just plain old vulnerability to hear the words that you have Cancer rocks your very soul, these are the words that we all dread. In the beginning with tests and appointments we are kept busy , still in shock , carried along in a whirl wind of  emotions. Then there is the lull where you are know waiting for your treatment to start. To be honest if you weren't tearful then you wouldn't be human.

Yes the HT must play a part but don't forget the major shock that you have had. It isn't always in the beginning that we react sometimes it creeps up when we are not expecting it.

Good on you for the charity work, I understand where your wife is coming from she wants you to concentrate on you but sometimes helping others gives a boost and a feel good factor.

Nearly at the start line Steve, try and stay strong.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Oct 2014 at 23:25

Hi Julie,

Thank you for your message. 

My low moods are probably just "pre-match" nerves.  I think I'll be better once the RT gets underway.  After that, I going to have to put cancer in it's place and get back to living my life again, if that's possible.

Our first grandchild is due to arrive in just over two weeks time so that will give me and my wife a real boost, hope I don't spoilt things by being too emotional, it's going to be hard not to be.

Keep in touch.

Steve

User
Posted 12 Oct 2014 at 21:05

Hi Steve,

 

Good Luck with the radiotherapy starting this week.   My O.H. had his in Aug,, now free from treatment until check up in Feb.   LIVE IN HOPE!!!

 

El.

User
Posted 12 Oct 2014 at 22:07

Hi El,

Thanks so much for your "Good Luck" message. 

Keeping my fingers crossed, and everything else, for a successful outcome.

Hope everything goes well with your OH's results when he has his check up.

Keep in touch,

Steve 

 

 

User
Posted 14 Oct 2014 at 09:50

Good luck for today Steve, I will be thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Oct 2014 at 10:12

Hi Steve,

Good luck today, it must give you a real boost to know that so many people are thinking of you and wishing you all the best. I think your desire to pass on the awareness message to other men is a really positive step and you will find that your drive to help others is an important part of your recovery.

Good luck to you,

Miss

User
Posted 14 Oct 2014 at 17:02

So how did it go? I hope all was well and you now have a clear picture of how things will run for the next few weeks!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Oct 2014 at 18:15

Hope it went okay for you Steve after all the worry?

We had scan results today - all good!! So hope for you too to be positive.

Best of luck

Alison

User
Posted 14 Oct 2014 at 20:36

Thanks everyone (Julie, Miss, Lyn and Alison), for all your good luck messages.  I really appreciate your support.

Things seemed to go really well. I'm going to give more details under my other thread started today.

Steve

 

 
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