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Very Frightened

User
Posted 16 Sep 2014 at 20:00
I was diagnosed with prostate cancer last week. The consultant said that the cancer had probably started 5 years ago but the symptoms only started a few weeks ago and were mis-diagnosed as sciatica. They have put me on hormone treatment - Cyproterone Acetate 300mg per day - but I don't know what is next in line. I have a pain in my right backside which I am assuming is from the cancer having spread, but I don't know.

I'm so frightened. I am 56 and have always been so very fit. It hasn't helped that I have recently split up with my wife and I'm living out of a single rented room. So my stress levels are through the roof.

I don't know anything about what is in store, what questions to ask, whether I can do anything to reduce or stop this disease.
User
Posted 16 Sep 2014 at 22:52

Newflyer,


Welcome to the forum, but sorry you are here due to prostate cancer.


It would help people to give you some advice if you could put your stats on your profile, so that people can see them and give you advice or guidance.


If you click on my profile you will see the sort of information to fill in. Things like your Gleason score, PSA level, staging etc. if you have them.


The first thing I would say to you is calm down and don't panic, I know how you are feeling right now as I have also been there and it is very frightening.


There are many things that can be done for prostate cancer sufferers, and many people live for many years with it as can be seen on this forum.


There is loads of information in the form of prostate cancer UK publications for you on the home page of this website.


I would suggest phoning and speaking to one of the prostate cancer UK nurses, they are excellent and will be able to put your mind at ease so please call them on this number - 0800 074 8383


Please keep us informed on how you are doing.


Regards, 


Gerry


Good luck and best wishes to ALL who are fighting or affected by cancer

User
Posted 17 Sep 2014 at 20:23

Hello Newflyer,


I think it is too early to say you are incurable. That is for discussion with your medical team who have all the results from scans & presumably the biopsy you have had. Only they can give such information .


There are cases where bone mets can be eradicated by radiotherapy and HIFU ( High Intensity Frequency Ultrasound ) is being trialled as an alternative. Prostate cancer bone mets are responsive to radiotherapy. The usual criteria is five or less bone mets in order for killing doses to be used ( there are limits to amounts that can be given). You need to ask about this. And if you get a poor response then a second opinion can always be asked for. So much depends on the scan results and how active your hospital is in this subject.


The Hormone Treatment ( HT ) is the normal initial approach to gain control.


 


You need more details before major decisions can be made. Some Oncologists are favouring earlier use of chemotherapy but again this is up to your medical team who will suggest the best approach for your case.


I think you need to go through the options they suggest & come back here with any questions as to the treatments.


It is fairly well-proven now that diet changes can slow any progression. If you click on my name & look at the Profile you will see the changes I made. They have helped delay progression I believe.


 


Even with spread to bone, many men continue to enjoy a good life and I trust you will become pro-active in learning the best approach by asking questions & looking at diet.


 

User
Posted 25 Nov 2014 at 21:43

Wow what a bad year old fruit, sympathies.
Just a note about "Stampede"; it has been running in several countries for several years. A computer program assesses your current state of health & fitness, and allocates you to one stream of treatment appropriate to how much your body can stand.
From the statistics of the results, they hope to define the 'gold standards' treatment for various stages of the disease.

So, whatever happens, you contribute to those in the future, you are advancing medical knowledge; you owe that to your fellow man (who may be your son or grandson). It helps you feel useful at least!

I believe some arms of the trial are closed (that is, they have enough to make statistics meaningful), so A, B,C are done already, maybe further now I don't know.

I was enrolled last year on Trial H, which is the fairly routine hormones followed by external beam X-rays, followed by hormones which have been added to due to a small PSA 'Bounce' about 18 months after diagnosis. There are I think other arms to the trials, and there are indeed other trials altogether being run.

One thing's for sure; if my tiny numerical contribution helps to give someone's son (possibly mine) to have an easier time in a few year's time, then my work here is done. Meantime, the extra attention one gets from experts and researchers whilst on the scheme is reassuring.

By the way there is also a genetic survey going on, ask about it, it is only a questionnaire and you have to try and recall all your family history and so on. Doesn't matter you can't remember everything, you just do what you can and as well send a couple of simple swabs of in the post (so they can read your own DNA).

Just being 'useful' can be a lift, go for it and feel smug, it all helps the reality.
Best wishes,
b0b

Show Most Thanked Posts
User
Posted 16 Sep 2014 at 22:52

Newflyer,


Welcome to the forum, but sorry you are here due to prostate cancer.


It would help people to give you some advice if you could put your stats on your profile, so that people can see them and give you advice or guidance.


If you click on my profile you will see the sort of information to fill in. Things like your Gleason score, PSA level, staging etc. if you have them.


The first thing I would say to you is calm down and don't panic, I know how you are feeling right now as I have also been there and it is very frightening.


There are many things that can be done for prostate cancer sufferers, and many people live for many years with it as can be seen on this forum.


There is loads of information in the form of prostate cancer UK publications for you on the home page of this website.


I would suggest phoning and speaking to one of the prostate cancer UK nurses, they are excellent and will be able to put your mind at ease so please call them on this number - 0800 074 8383


Please keep us informed on how you are doing.


Regards, 


Gerry


Good luck and best wishes to ALL who are fighting or affected by cancer

User
Posted 16 Sep 2014 at 23:59

Newflyer


 


Stay calm, as Gerry said it would be good to know a little more detail so those on the forums who have been and are on the same journey as yourself and provide helpful information. At the moment we can only speculate and that's not good.


Give the clinical nurses a call and also as to speak to the one to one service. The clinical nurses will ask you for more info and they will get someone who is a close match to yourself to call you and you can talk through things.  The important things is you are not alone. The One to One service  is fabulous and the guys on there will keep in touch and help you through this, as will the nurses on the helpline. Ask them to send you a copy of the toolkit.


 


Any other info, give me a shout out on  here.


 


take care


 


Eddie

Living life to the full, there is always someone worse of than yourself. Smile and get on with it.
User
Posted 17 Sep 2014 at 09:45

All I know is that my PSA level was 15 on the 22 August and 20 on the 29 August. The cancer has spread to my right sacrum and the pain was originally mis-diagnosed as sciatica.


I really don't understand if these levels are very bad or not. I have no idea if there is anything I can do to limit or eradicate the cancer, nor what treatments I should go for. I am self-employed and I am really worried about losing all my income through this.

User
Posted 17 Sep 2014 at 13:58

Hi newflyer,
the fact that it has spread to your sacrum means that your cancer is probably not curable - however, your PSA is very low considering you have mets (spread) which may be a good sign that the hormone treatment (HT) can keep your cancer under control for many years. Whether you can continue to work whilst on HT depends very much on what kind of work you do and whether you experience fewer or more of the side effects.

Side effects of HT include a loss of muscle strength and/ or muscle wastage, a thickening of your waist, joint pain (due to loosening of the tendons and ligaments), man boobs and / or breast pain, breathlessness, fatigue, itchy rashes. If you work as a builder and are affected by muscle wastage then it might at some point in the future become hard to carry on working. On the other hand we have members with much more advanced disease than you but experience few side effects and are able to carry on working pretty normally.

There isn't anything that can eradicate your cancer although you may stumble across website advertising quack cures and magical potions. Bear in mind when looking at these - some of which are very persuasive with their case studies) that Steve Jobs (creator of Apple and wealthy enough to get the very best medical treatment) turned away from traditional medicine to follow some trend and he died.

If you are interested in helping your body to fight the disease, you could look at the publishings of Jane Plant who promotes a meat-free dairy-free diet. The Plant diet is a little extreme for some of us and she is not medically trained, however there is research from others to support some of her ideas. You could order the Prostate Care Cookbook from Amazon - this is published by one of the UK prostate cancer charities and helpfully explains the difference between a diet to prevent young men from getting PCa when they are older and a diet to help men already diagnosed to control spread or symptoms. Principles .... lots of tomatoes (cooked rather than raw), oily fish, garlic / onions and soya. Limited amounts of dairy, red meat, and try to avoid processed foods, burnt or overcooked food and saturated fats.

Edited by member 18 Sep 2014 at 00:53  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Sep 2014 at 20:23

Hello Newflyer,


I think it is too early to say you are incurable. That is for discussion with your medical team who have all the results from scans & presumably the biopsy you have had. Only they can give such information .


There are cases where bone mets can be eradicated by radiotherapy and HIFU ( High Intensity Frequency Ultrasound ) is being trialled as an alternative. Prostate cancer bone mets are responsive to radiotherapy. The usual criteria is five or less bone mets in order for killing doses to be used ( there are limits to amounts that can be given). You need to ask about this. And if you get a poor response then a second opinion can always be asked for. So much depends on the scan results and how active your hospital is in this subject.


The Hormone Treatment ( HT ) is the normal initial approach to gain control.


 


You need more details before major decisions can be made. Some Oncologists are favouring earlier use of chemotherapy but again this is up to your medical team who will suggest the best approach for your case.


I think you need to go through the options they suggest & come back here with any questions as to the treatments.


It is fairly well-proven now that diet changes can slow any progression. If you click on my name & look at the Profile you will see the changes I made. They have helped delay progression I believe.


 


Even with spread to bone, many men continue to enjoy a good life and I trust you will become pro-active in learning the best approach by asking questions & looking at diet.


 

User
Posted 17 Sep 2014 at 22:29
Newflyer

Sorry to see you here.
Not sure if have a "Maggies" near to you. Our local Maggies has a benefits specialist on the staff, he recently gave a talk at our local support group. They should be able to help with claiming any benefits you are entitled too.

Thanks Chris

User
Posted 18 Sep 2014 at 07:10
Hi Chris
I'm currently living in the north Oxford area but it is a little more complicated than that as I am living in digs having recently split up from my wife in Wales. So my 'permanent' registered address is still in north Wales

Currently I am still working but I am worried what happens if I'm not able to continue working

Tim
User
Posted 19 Sep 2014 at 16:30

Hi again


Well I had my consultation with Prof [name removed by moderator] at Queen Elizabeth Cancer Clinic Birmingham. He said that my cancer had spread to the right sacrum but he couldn't find any evidence of other spread. The scan clearly showed degradation of the bone in that region and he said that would have accounted for the pain which felt like a sciatic nerve pain.


He is recommending both the hormone treatment, which I'm already on, and radio therapy in the New Year - 37 'hits' one per weekday for 7 weeks.


Does anyone have any experience of [name removed]? He said that the RT was a little unconventional but he would recommend it. He said also that other hospitals probably would stick solely to the hormone treatment. Does anyone have any input on this? Also does anyone have any experience to indicate which is the best hospital / consultant in the UK (or Europe)?


[From the moderator: Our terms & conditions prohibit referring to specific healthcare professionals by name so I've removed that. Hopefully you will still get helpful responses to your question!]

Edited by moderator 22 Sep 2014 at 11:40  | Reason: Not specified

User
Posted 19 Sep 2014 at 16:46

One other question. There appears to be lots of sites promoting different diets. One which caught my attention was one which said (a) drink pomegranate juice and eat foods such as broccoli and (b) cut out sugar as "the cancer feeds on sugar". Any knowledge of validity of these claims?

User
Posted 19 Sep 2014 at 17:48

Briefly; R/T to bone mets is new'ish stuff & shows up-to-date approaches. I can't see how you could find a better approach with just one area showing up. I assume the prostate itself will also be treated ? You need to clarify this.


The wait until the New Year is to give the HT maximum effect to weaken the bad cells.


 


The diet & Lifestyle section ( including stuff from old forum ) should guide you with diet. Prostate cancer feeds on hormones ( initially testosterone ) hence the Hormone Treatment. It doesn't feed on sugar directly but sugar is where much of energy comes from so it is part of the feeding chain. General advice is to stop all added sugar & processed foods which are high in sugar. Vegetables & some fruit is fine in the diet. Not too much carbohydrate though.


Red meat, Dairy produce & egg yolk & some oils in particular help the cancer to spread faster. Via the Arachidonic pathways.


Dark green veggies. broccoli & a good mix of coloured vegetable help slow progression. Organic if possible. Also fish oil is considered very helpful.


 

User
Posted 20 Sep 2014 at 00:26
Hi Tim

I am being treated at the QE in Birmingham, and can recommend them, they seem to be up to speed as regards treatment, showing by the way you have been offered RT, as I believe it's not offered on a routine basis at other hospitals when bone mets are present. The prof you mention is not the one I am under but it seems he knows his stuff.

All the best

Roy
User
Posted 20 Sep 2014 at 12:01

Newflyer, this forum doesn't have many rules but one is that we should not name the doctors, consultants etc.



I have already suggested the Prostate Care Cookbook to you which is available on Amazon and explains some of the research data on pomegranate, broccoli and other so-called super-foods

Edited by member 20 Sep 2014 at 12:03  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Sep 2014 at 21:13

Oh I'm sorry I didn't realise. Obviously I just want to make sure that I maximise my chances. Everything is so strange since this happened.

One of the side effects of the treatment is loss of libido and ED. Is there anything anyone can suggest to alleviate this - especially the ED. I know it might seem like the least of my problems but I would like to feel some form of normality, especially after all that has happened to me in the last 9 months culminating with this diagnosis

User
Posted 28 Sep 2014 at 22:18

Hi Newflyer,
Yes there are things you can do to get an erection even on HT. Viagra and other similar tablets depend on the man feeling aroused so will not help if your libido is shot but are often useful for a man who is aroused but needs some oomph. Injections (Caverject) and pellets (muse) work for many men even with no arousal. A vacuum pump can create an erection which is then maintained by placing rubber bands at the base of the penis.

I think this will be hard for you to imagine until it happens but the challenge of maintaining an intimate life on HT is not usually the mechanics of getting an erection. Loss of libido has been described on here as something akin to looking at your partner and feeling that s/he may as well be a lump of concrete. There are some fortunate men who do not experience total loss of libido but these are rare. With no libido, it might be possible to get an erection but using this to have intercourse etc feels pointless, ridiculous or even distasteful.

You can read here about how it affected us http://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED#post119001 .

The best description I have read of loss of libido is here http://community.prostatecanceruk.org/posts/t9100-The-HT-and-RT-treatment-Journey#post9100

Edited by member 28 Sep 2014 at 22:34  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Oct 2014 at 17:44
Well it has been many weeks since I was diagnosed. The HT treatment is kicking in I guess. The cancer had spread to my right sacrum and denuded the bone, which eventually gave way in a micro fracture setting off my sciatic nerve and pain right through my groin and penis - the most intense and intimate pain I had ever felt...and it was the only symptom of a cancer that the consultant said was probably 5 years old. I say the treatment is probably kicking in as I can only observe the side effects. The forecast weight increase is only marginal at present and I haven't grown boobs The only definite sign is ED. I use viagra which does lead to an erection and I still enjoy making love with C, my partner, but I now find that I don't reach climax, so my satisfaction is now limited to knowing that my partner is enjoying the sex. I don't know how this will progress and I'm worried about it. This year has been the worst in my life. My wife and I split up, I moved out, I had searing pain which was for 10 weeks diagnosed as sciatica, and then told I had cancer. The only upside (but it is a big one) is that I met C and have totally fallen in love. This early in the relationship though it is hard for both of us.
User
Posted 25 Oct 2014 at 18:40

Hi Newflyer


It sounds as though things are pretty tough for you at the moment. This damned disease is enough on its own, without having the trauma and consequences of a relationship break down. I'm glad that you have managed to meet someone else but beware: the cancer puts a huge strain on any relationship, let alone a new one, and the quality and frequency of sex can deteriorate to the point of no libido or interest which can be a strain for the partner. On the other hand, you are not stopped from having cuddles and closeness which can be very important.


On the plus side, treatments seem to be improving almost daily and the survival times for individuals are consistently rising. I was diagnosed in 2009 and I still have a pretty full and enjoyable life (despite no sex) so there is definite hope. Plus, if I feel down I talk to the specialist nurses at this charity and they are very helpful and supportive. You might find you have a local cancer support group that you can get in touch with - where I am it is called Big C and the volunteers there are great.


As to food and drink: personally, without an iota of medical knowledge, I eat and drink what I want because since I've already got the cancer, I want to enjoy whatever life I have left. But if you think a special diet will make you feel more in control, then go for it!


All the best


Dave

User
Posted 29 Oct 2014 at 19:13

Hi Dave

That does reassure me a little. I guess so much has hit me this year that I can't really comprehend the massive change in my life. Clearly I'm still very frightened. It seems that everywhere there is news on Cancer and I can't escape it...even for an hour. I thought I was going to live 'til 90 and now having met someone who means so much to me I don't want to lose that chance.

There seems to be so much in the web about ED and drugs to help, pumps, injections, that I am really confused.

Tim

User
Posted 04 Nov 2014 at 15:40

I have been put onto a drugs trial called "STAMPEDE". Has anyone had any experience of any side effects for the drugs. I have to take 9 pills per day....Xtandi 40mg x 4; Abiraterone Acetate 250mg x 4; Prednisolone 5 mg x 1

User
Posted 04 Nov 2014 at 18:45

This is a very new approach to combine the two newest hormone treatments available. Something I'm sure many are interested to see the results of. And have looked forward to seeing trialled.


 


Likely side effects are some fatigue & lowered libido. You may need to watch out for mood changes until the body adjusts, which it should do in time. If permitted by the trial instructions taking the Xtandi in the evening might lower the fatigue a bit. Try to keep up exercise to mitigate muscle loss ; brisk walking or swimming for example. Otherwise it is too new an approach for other effects to be gauged I think.


I hope you will keep us informed on psa results & your progress on the trial.


And Best wishes for great results of course.


 


 

User
Posted 25 Nov 2014 at 21:43

Wow what a bad year old fruit, sympathies.
Just a note about "Stampede"; it has been running in several countries for several years. A computer program assesses your current state of health & fitness, and allocates you to one stream of treatment appropriate to how much your body can stand.
From the statistics of the results, they hope to define the 'gold standards' treatment for various stages of the disease.

So, whatever happens, you contribute to those in the future, you are advancing medical knowledge; you owe that to your fellow man (who may be your son or grandson). It helps you feel useful at least!

I believe some arms of the trial are closed (that is, they have enough to make statistics meaningful), so A, B,C are done already, maybe further now I don't know.

I was enrolled last year on Trial H, which is the fairly routine hormones followed by external beam X-rays, followed by hormones which have been added to due to a small PSA 'Bounce' about 18 months after diagnosis. There are I think other arms to the trials, and there are indeed other trials altogether being run.

One thing's for sure; if my tiny numerical contribution helps to give someone's son (possibly mine) to have an easier time in a few year's time, then my work here is done. Meantime, the extra attention one gets from experts and researchers whilst on the scheme is reassuring.

By the way there is also a genetic survey going on, ask about it, it is only a questionnaire and you have to try and recall all your family history and so on. Doesn't matter you can't remember everything, you just do what you can and as well send a couple of simple swabs of in the post (so they can read your own DNA).

Just being 'useful' can be a lift, go for it and feel smug, it all helps the reality.
Best wishes,
b0b

User
Posted 26 Nov 2014 at 07:25

My OH was on the Abiraterone arm of the STAMPEDE trial and finished the 2 years trial length in the summer.


It did not include the Xtandi though.


It is difficult to say exactly which symptoms came from which drug, be he had low potassium levels due the Abi (and had to take tablets to counteract it. This was monitored very carefully as potassium affects the heart) and also the Abi caused high bp so he had to take tablets to lower that too.


The prednisolone caused the usual steroid type side effects, weight gain and feeling hungry.


My OH found the Abi difficult to swallow too.


Tiredness etc and the usual other effects of the hormones (weight gain, loss of libido).


It was reassuring to get the additional monitoring of the trial though and the 2 years which seemed to have flown by.


I will help with any further information if I can.


All the best


Alison

Edited by member 26 Nov 2014 at 21:18  | Reason: Not specified

User
Posted 26 Nov 2014 at 16:54

I have no experience of Xtandi but I've been on abiraterone and prednisolone for several months, which supplements continued Zoladex.  The abiraterone works, to my perception quite gently and because I have some residual PCa in my urethra, I'm able to see the evidence of shed dead PCa cells from time to time.  The PSA reduction and maintence at a low level is further proof that the stuff works (for me at least).  I can honestly say that the newer two drugs have had no side effects at all.  There is a tendency to weight gain with the steroid, I understand, because it stimulates appetite.  However all of us with PCa and on HRT are wise to keep our diet under control, take plenty of exercise and make sure we don't gain weight.  I've managed to lose 10 lbs in the past six weeks so I know that weight gain is NOT inevitable and that with the willpower weight loss is possible.


We are all different and the only rule with PCa is that there are no rules, so good luck with your choices in  the challenges ahead.


 


OC in Northants

User
Posted 05 Feb 2017 at 11:14
What is the one to one service please?
User
Posted 05 Feb 2017 at 17:08

PenP, It might help your question if you take the quote from the answer you are looking at.


I don't know to what you are referring


 


PS. Have found what I think you were referring to below


 


Quote "Give the clinical nurses a call and also as to speak to the one to one service. The clinical nurses will ask you for more info and they will get someone who is a close match to yourself to call you and you can talk through things.  The important things is you are not alone. The One to One service  is fabulous and the guys on there will keep in touch and help you through this, as will the nurses on the helpline. Ask them to send you a copy of the toolkit."


 


It presumably means that dad, if he wants to, can speak to somebody personally and get some first hand knowlege on how the other person deals with his condition.


 


Hopefully somebody else will be along to either confirm (or shoot me down in flames http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif)

Edited by member 05 Feb 2017 at 17:14  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 05 Feb 2017 at 17:57

Well done Johsan, I looked back over the thread and couldn't find it!

Assuming that is what you were asking about PenP, you can call the nurses at the number on this website 0800 074 8383 and they can put you in touch with someone that has been in a similar situation to you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Jul 2018 at 10:54

Using complementary or alternative medicine instead of scientifically-based treatment can be an extremely dangerous thing to do. See this article for more information:


https://scienceblog.cancerresearchuk.org/2018/07/20/mixing-complementary-therapy-with-standard-cancer-treatment-could-affect-survival/

User
Posted 20 Jul 2018 at 13:35
Certainly some alternatives to standard approved medicine and procedures may alleviate pain and calm people down but for PCa should not be considered alternatives to the medically approved ones. Indeed, there is a possibility that they may work against rather than with some medically prescribed treatments. If anybody is contemplating complementary medicine it would be well to discuss this with your consultant. Relying on alternative medicine could be dangerous.
Barry
User
Posted 20 Jul 2018 at 14:28

Interesting article in today’s Times headed “ Cancer deaths higher among users of alternative therapies “ from Cancer Research UK. In particular it cites that patients considering alternatives should regard them as complimentary therapies not as alternatives to conventional treatments 

User
Posted 20 Jul 2018 at 14:32

I see that you are living in the Netherlands and that you are interested in prostate cancer rather than having someone being diagnosed as having prostate cancer so perhaps your viewpoint may be a little less relevant perhaps? 

User
Posted 20 Jul 2018 at 15:27
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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