Very Frightened

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

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

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

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

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.

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

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

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

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

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

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