Hi Elares,
no-one can answer your question until you have a biopsy I am afraid. But what happens once you have had the biopsy? Here are a couple of possibilities ......
1. You are diagnosed with early prostate cancer and agree with your urologist to opt for active surveillance. This means that every year you have a PSA test and scan and, if the number is rising, another biopsy just to keep an eye on it. As long as the cancer trundles along slowly, you may never need to be treated but if it becomes a problem, you have the opportunity to change your mind and have treatment in future years.
2. You are diagnosed with later stage cancer or one that is particularly aggressive. In this case, it is unwise to leave it untreated as there is a risk that you will die and leave your wife with no carer. In your circumstances, if you were diagnosed with late stage or advanced prostate cancer, the most likely treatment would be hormone therapy which would be unlikely to affect your ability to care for your wife at all. You might get a bit more weary, and find it harder to lift her, but some hormone treatments are simply tablets that you take at home. There are also hormones that are given as an injection every 3 months at the GP.
If you are diagnosed with prostate cancer, you do not have to opt for surgery or radiotherapy and the choice will be yours so you could explain to the urologist about your responsibilities as a carer and then come up with a plan together. Even if you have advanced cancer, there is a good chance that tablets or injections will keep you going for many years yet. On the other hand, if you fail to get a proper diagnosis you risk leaving your wife alone and distressed. As a general guide, my father-in-law decided against any treatment or plan and lived for only 4 years. For your wife's sake, get the biopsy so that you know what you are dealing with rather than guessing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I can only echo Lyn's words. There are many options for you which may leave your wonderful care of your wife untouched but until you know what you are dealing with little can be planned. If there is some cancer there and the PSA is high then the consequences for you and by implication for your wife are going to be problematic. At each stage you can take control and do what you want to do but it would be tragic if early intervention would be able to deal with the problem and you did not take it.
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Thanks for your replies so quickly and they are helpful. It is good to just get the thoughts of others and it helps. And thanks Lyn for the long reply and the experience of your father in law. That sort of info is not always easily available. I will be getting the biopsy and take things from there. I know I can't really make up my mind until then and the knowledge gained here from others expoeriences will be a big help.
User
Hi Elares,
I have first hand experience of advanced pca and alzheimers disease and I can understand your dylema, I am not going to sugar coat this so please forgive me if this reply is not what you want to hear. Your wife's condition is at the moment as it sounds to me in the middle phase and she would be totally reliant on you and very disturbed by any change in her routine , new people or anything different would confuse and disturb her mental state. I applaud you for being such a devoted and caring husband and I would imagine that you are coping at the moment but with difficulty. You didn't say if you are having outside help but if you are handling this alone then one thing that I do know is at some point in the future you would need extra help and certainly the very real possibility of a care home.
You would need to be as fit and well as you possibly can to help and support your wife, you wouldn't be able to do that if you had advanced pca so my advice would be to have the biopsy and any treatment that you would need earlier rather than later even if this meant having extra help for your recovery time if a RP was needed. Contacting the PCUK nurses and a chat with your GP is good advice . Are you in touch with Alzheimers care line ?
As I said getting treatment for yourself and being there for your wife at this point in time is such a hard choice but in the long term you need to get treatment for your self because you wouldn't be able to help your wife long term without getting the right and apropriate help for your self.
BFN
Julie X
Thinking of you
NEVER LAUGH AT A LIVE DRAGON |
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Hi Elares
I am sorry to hear about your predicament.
As others have said at least when you have had the biopsy, and more than likely, further tests ie MRI and bone scan you will at least know what you are facing.
You say you are waiting for a care assessment. Your local authourity should complete this within 28 days if your wife has not had a previous assessment. You should also ask for a carers assessment.
You need to discuss your current circumstances with them and any likely impact that your condition /treatment will potentially have on your caring role. New legislation that local authorities are working within is focused on peoples well-being, prevention and helping people to remain independent. You or your wife may be eligible for support to achieve this and if so you could be offered a personal budget from the local authority or possibly the CCG (health) if your wife has specific health needs. A personal budget can offer you more control, flexibility and can help meet need more creatively. But they have to be satisfied that you or your wife are eligible for paid support.
please feel free to pm me if it would help
Bri
Edited by member 06 May 2015 at 07:20
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Bri your message box is full xx
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Hi Elares, possibly one of your best moves of late was to join this site, as can be seen from the above there is an abundance of experience here, and people that are always ready with help or advice.Ultimately any decisions you make are down to you,but others opinions are always good to hear.Best wishes Diesel.
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I would echo what Lyn says above. You would always have the choice about whether to accept particular treatments.
By the time my husband Tony was diagnosed last September - in fact this is the only reason he was diagnosed - he was in severe pain because the cancer had spread to his spine and pelvis. Within a few weeks he had changed from a fit and active man to someone who could hardly move around the house or get into a car. Only heavy painkillers made life bearable.
Once he was diagnosed, he immediately started hormone therapy, and within a week or two weeks was pain-free and active again. Obviously the hormones have side effects that impact both our lives, but at least he is able to live a comparatively normal life for the moment.
We both wish he had been diagnosed earlier, in time to treat the cancer more effectively. As it is, the cancer will eventually kill him, but at least the hormone treatment is buying him a bit of worthwhile time. Ignoring symptoms won't make a cancer go away, and could mean you become an invalid yourself sooner than you need to.
Marje
User
Your PSA is quite high and if you are to have treatment it may be advisable to have this before PCa advances. In your position I would ask your consultant to agree to an MRI scan as the next step which should help shed further light on where you are. (This is better done before biopsy anyway as the prostate takes some weeks to fully heal to the extent that a subsequent MRI scan is well defined). You could then decide if you were going to have the biopsy which is a pretty quick procedure and thereafter discuss treatment options bearing in mind your special circumstances. If you could arrange to introduce some support for your wife to begin to cover for your time away, that might might help.
Barry |
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Thanks for your advice and it is good to hear the experiences of others without any holds barred. I am sole carer but have some help from family as required but at the moment our son works away for 6 weeks at a time. He is on his last job now and finishes in mid June which will help. We will be away next week but will chase the care assessment before we go and also speak to my hospital to see if a MRI is possible. It was actually mentioned on my last appointment but when I postponed the biopsy and then asked about MRI the consultant said no MRI scan now. I am going to question that. I am now more ready to make what ever decision I have to make and in part thanks to this site and the online community.