Fight Prostate Cancer
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High PSA of 53

My partner has had private blood tests done because GP kept insisting nothing was wrong, the test revealed a PSA of 53. GP has now referred for investigation with an urgent referral in 2 weeks time. What might we expect for this kind of result? As my partner is not well enough to ask himself but I want to be able to support him, I'd appreciate other's experience of PSA this high and realise it is likely to be cancer. The GP, although pleasant, seemed reluctant to say too much at all despite all my questions and said my care would be handed over for a few months. Thank you.

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Hi, I'm no expert but as I understand things a high PSA can be the result of other conditions such as prostatitis. I believe a urine test can confirm this. Obviously prostate cancer can't be ruled out but this can only be confirmed after a biopsy. It is usual to have a DRE (Digital Rectal Examination) as the first step. This is where the doctor puts a finger up the back passage to feel the prostate for any abnormalities such as an enlarged prostate or any bumps which might indicate cancer.

John

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Thank you so much johnjopp for replying. There is nothing worse than a vacuum once you've put a question out there. Obviously it's very early days and I am sure most people are in shock with unknown territory ahead.

My partner is 69 a and has deteriorated badly over the last year but we discovered that his surgery has never offered a PSA test despite all the symptoms of difficulty passing water and many overnight trips to the bathroom and pain (all reported to the GP). We are glad we had the test done privately as at least we have the referral which really can't come quick enough. This is like being in limbo land. Mornings are difficult as he is wretching, sweating and emotional and he has lost weight with no appetite. Hard to get him to eat but if he is is only going to eat tiny things, I am making sure it is nutritious which at present is all I can think of. Although I am researching through books, it's a minefield.

Could you recommend any books or articles or links?

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Sorry to hear about your husband. It seems there is more to your husband's circumstances than is immediately obvious. I'm not sure where you live and what kind of health service you're entitled to but if it is normally free, as it is under the NHS in the UK where I live, then your GP has been neglectful.

That he is so ill to be losing weight and suffering nausea is worrying. It may, or may not be related to the prostate. I'm shocked again by your GP, has the surgery investigated the cause of this at all?

Luckily he has been referred to a specialist. The specialist will have to investigate further. He or she will probably repeat the PSA. He/she may test for signs of infection/inflammation, this will include perhaps further blood tests and urine samples at least. He/she will do DRE. Hopefully he/she will investigate for causes of the weight loss to discover if it is or not related to the PSA.

If he/she suspects prostatitis, then your husband will be prescribed antibiotics before ordering a prostatic biopsy. The biopsy procedure is uncomfortable and causes an high risk of infection, so is not done lightly. He will be given antibiotics as a matter of routine.

The biopsy will more definitely confirm whether the prostate has cancer cells in it

If there are cancer cells, then the specialist may possibly order an MRI scan and a bone scan.

If the specialist thinks the weight loss is related to the high PSA, then he/she might go ahead with the biopsy and scans fairly quickly.

You are allowed to go with your husband to all consultations and investigations. The specialist should offer you information and explanations at all times. If he/she doesn't then ASK. Don't be afraid to be assertive!

It would be useful for you to find out what you can about prostate cancer. This will help you deciding what questions to ask and help prepare you for results of investigations.

Here in the UK there is an excellent organisation who are experts in this field. Prostate Cancer UK provides lots of information and has Clinical Nurse Specialists you can consult freely. If your on the internet you can get their web site. You can also phone them.

If your not in the UK, there may be a similar organisation in your own country.

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The link for Prostate Cancer UK is prostatecanceruk.org. phone 02080386368

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Thank you Timz for such a detailed reply.

Yes, there is more to my partners health condition. We are in the UK but have experienced (both of us) inadequate treatment from the NHS for years where we have not been taken seriously. My faith in NHS Drs is at an all time low and if we hadnt had the private screening done, we still would not be any further forward as the Drs at his surgery just have not listened, preferring to put it down to depression or obsessing about his health. No investigation at all ever re PSA test until I went armed with the test results and demanded to be taken seriously. These tests revealed problems with his kidney function, liver function, high PSA and vitamin deficiency. This on top of pre-existing conditions which there is no cure for. I do believe that his system has become toxic from all the chemicals over the years and this has meant his body has been deprived of nutrients.

His appointment is in 9 days time. I am very concerned that he is not strong enough to go through the biopsy procedure if suggested as, having M.E and other conditions, he has a very poor immune system and struggles to fight infection (has a high sensitivity CRP). The non-invasive tests would be okay. Naturally, I will be with him all the time as two minds are better than one when it comes to digesting information.

I will look on the Prostate cancer UK website as you suggested and of course keep searching for information.

Thank you so much for giving me a brief outline of what to expect! I appreciate it.

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I hope I have been of help. What you say explains his "additional" symptoms, which will be due to his liver and kidney problems rather than his prostate, which is a relief! You also don't mention any specific pains he might be having which is also a positive sign as regards prostate cancer.

To be honest, it seems his kidney/liver problems are more of a concern than his prostate.

Sorry to hear you have a poor deal from the NHS. My own experiences of my GPs have been excellent and, apart from some "glitches", was fairly happy with my care and treatment for my Prostate Cancer.

I have some involvement, on a volunteer basis, with NHS organisations. I am currently collaborating with my local Hospital on improvements in the management of prostate cancer and I also do some work for Healthwatch. In view of your experiences I suggest you contact your local Heathwatch. I think you will find them informative, although they do not deal with individual cases, I'm sure they'd like to hear from you. You can find your local Healthwatch from their national website at healthwatch.co.uk/

You may also find this website helpful,

nhs.uk/chq/pages/1084.aspx?...

I hope any prostate issue is dealt with quickly, in my case it was.

Good Luck

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And therein lays the problem. With all my partners medical conditions he is no stranger to pain and lives with it permanently so it is hard to isolate one sensation from another. Having said that, for the last two months he has experienced what he describes as a red hot knife pain in the groin which takes him by surprise, this then passes after a few minutes. It is unlike his kidney stone pain which he is familiar with. We will of course be telling the urologist about that and I dearly hope that at the point, the NHS experience will improve and be thorough.

It is reassuring that your experience regarding your PC was reasonable. Great that you are involved with the management of cancer at your local hospital. Once our lives are touched by cancer, what better person to be involved in decision making over treatment than you. Thank you again.

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Which reminds me, you may also find MacMillan very helpful and informative. I can recommend them.

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So sorry that you are here but you will never find a better group of people! It sounds like the first thing to do is forget the GP and go to a surgical Urologist that specializes in prostate cancer. He needs to get a biopsy of his prostate ASAP. Hopefully the biopsy will come back negative.If it comes back positive then he needs to get bone/CT scans.

Please note this, if it does come back positive that is not the end. This sight is full of men not only with cancer but also advanced cancer (including me) but who are still enjoying life. Please come back when you get the results so the brave warriors here could advice you and your partner. Please know that we are giving you advice and suggestions. You and your partner must follow the treatment that is best for you.

I believe that information is the best weapon you both will have in this war. To that end, here are the two best sights for information. The first one is from the Prostate Cancer Foundation. They have a booklet that you can download. They can be found at

PCF.org

The second one is the American Cancer Society. They can be found at

cancer.org/cancer/prostate-...

Again, let’s all hope that your partner does not have cancer. But if he does, pay absolutely no attention to the life expectancy that they list. I can not tell you how many men here have passed their expected life expectancy, sometimes by decades. For me, By their projections, I have only three more months left. But I am well enough that I am getting ready for a scuba trip. Also, if he does have cancer do not be afraid of the treatments. I have Stage 4A Cancer. I have had surgery, 38 rounds of radiation and I am on Lupron and Zytiga. Yet last year I went on two Caribbean scuba trips, road over 1000 miles on my bike and walk my dogs six miles a day. Life does go on even after treatment!

Also take care of yourself. I firmly believe that it is harder on the caregivers than the ones with cancer. You may have to be strong for your partner. But please know this, you are not alone! You are part of our family. People are pulling and praying for both of you. Please feel free to discuss any issue or concerns you may have. After all, people like us we have to stick together!

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Thank you Dr-WHO for your response. I am greatly comforted by the comments here by all of you who don't know me or my partner, thank you everyone so much each and everyone of you.

I have to admit your last paragraph got to me and I shed a few tears (I am not one of life's boo-babies generally. I am a tough cookie and would give my life for my partner of 20 years. The sheer helplessness is overwhelming when someone you love dearly is so sick but I will stay strong for him and learn as much as I can and ask as many questions as I can re the appointment which is now a week away.

Reading some of these posts here, I get a sense of warmth and compassion coupled with lots of facts, individual experiences and inspiration and hope.

Thank you all - will keep you posted.

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Just to add a bit more info about biopsies. There are two different procedures. What I would call a standard biopsy is performed from inside your back passage. There is a bit of discomfort but it's not painful. I liken it to being twanged inside with a small elastic band. I think in my case they took 12 samples but the number might vary. This is the type of biopsy which is normally performed first. There is a risk of infection and so you are given a course of antibiotics. The other type of biopsy is called a template biopsy where the samples are taken externally through the perineum (the area just forward of the anus). This is usually performed as a follow up to a standard biopsy and gives a more accurate picture of what's going on. It's more involved though as it's normally done under a general anaesthetic although I understand that some are now being done under a local anaesthetic. There is much less risk of infection with this type of biopsy and antibiotics are not normally required.

John

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Aah yes, I was reading about that johnJopp, and i appreciate your description of what it feels like as that is easier to relate to. At this moment, the risk of infection for my partner scares me greatly as he has had hospitalisation with sepsis before and we nearly lost him. At the same time, a general anaesthetic would be a lot for him to handle as it has previously taken months to recover from this.

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A pelvic multiparametric MRI is the noninvasive test and can be done on the NHS. It identifies if there are areas suspicious for prostate cancer.

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Okay, I will make a note of that information and ask about that at the appointment. Thank you.

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A pelvic MRI might alsi identify some other issue in the area - it's a very precise imaging technique.

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Just a general update. My partner has now stopped eating because of the constant nausea and gagging, he is losing weight too. He is only sipping liquid occasionally but does not get anywhere near the volume needed in order not to dehydrate. I have got hold of some Complan in the hope I can get him to drink this, he had one serving yesterday for the whole day. I spoke to his Dr yesterday on the phone and he suggested that he was anxious and a bit depressed. I am so sick of this happening! The Dr asked to speak to my partner when I told him this is not the problem, the problem is physical, why aren't you listening to me?

Then he went on to tell my partner that he would be prescribing anxiety medication and to let him know if he didn't feel better! End of phone call. Can you see what I am up against? It beggars belief, I feel like I am going mad. Does he have to be unconscious before they will listen? At this rate, I will have to take him to the hospital myself. I am concerned about his judgement and his cognitive function which normally is sharp. Now he seems confused and resigned. I realise this may not be connected to his prostate . . . . .

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That is a shocking decline. Infections can cause confusion and other cognitive problems that recover once the infection clears. I only saw your post today and hope he has not got worse.

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I am shocked at your doctor's conduct. I advise you take your partner to casualty. Later you should contact the British Medical Council. But first your partner needs urgent attention, this is not a simple case of anxiety/depression or prostate problems.

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My Dads PSA came back at 950. He was 76. He received hormone implant therapy as his health wasn’t great and an operation would have been too hard on him. He died aged 84 - not from Prostate cancer. I’m 60 and have it too.

Has your partner had his prostate examined by a doctor? That’s the finger up the back passage test. It’s not painful and neither is the TRUS biopsy - I’ve had two of those. It really isn’t sore - I’d rather have it done than go to the dentist - and it’s not in the least embarrassing!

I’ve had the finger test and the biopsies done by both male and female doctors. Both were good but in my experience the female doctors were better. Longer thinner fingers and I think more sympathetic!

What started me off was I went to the doctor with a sore foot and when I was there I asked if she would check my prostate. She sent me for a blood test and it went on from there

My experience of the NHS has been nothing short of brilliant and I’m sorry you’ve had the trouble you’ve had. Sometimes you need to be persistent and with men being the way they are, sometimes they need someone to go in with them to the doctor so they don’t forget to say what’s really wrong with them.

I asked for the digital rectal exam and it probably wouldn’t have been offered if I hadn’t asked.

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I have seen your separate posting about abnormal blood test. Don;t know if you looked up my comment there. There's no mention of liver or kidney function tests which need doing. I repeat that I don't think your partner's main problem is primary prostate cancer. A visit to casualty is a good option.

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I'm 59, my PSA was 5.2, I then had a biopsy and 6 of the 12 samples had signs of cancer. While 2 were the lowest level on the Gleason Scale and four were a little higher to treatment was necessary. I am currently undergoing 34 radiation treatments.

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