First few hours

Many thanks. I do appreciate you getting in touch especially at this late hour. 

Hi Cader 28. I’m Tony and in a similar situation to yourself. Last December my PSA was 77.7 and my GP got me a red flag appointment in urology. Since then I have had many scans, tests, and a prostate biopsy. I have never experienced an emotional roller coaster like it! One day I’m 100% sure I have PC, and the next day I’m sure I’m clear. My wife, like yours, is also an emotional wreck. Last week I finally received news from my consultant, which shocked me. No sign of cancer in any scans or the biopsy, however he’s still very concerned about why I have such a high PSA level. So after a new blood test soon, I’m getting more biopsies etc only under sedation this time. I’m still pretty sure I have cancer cells somewhere in the prostate which were undetected in previous tests. So Cader 28, as I have learned in the last four months, you just don’t know until every test and scan has been completed and a final diagnosis' confirmed. Keep positive, and ask any question you can think of on this site, as these guys (and girls) are fantastic and so kind and encouraging. And stay away from google.

Tony

Hello Cader28

Sorry to hear about your results. You are at what I thought was the worst part of our own prostate cancer journey. The possibility of cancer is terrifying for us all. We found the journey through all the different tests completely exhausting with stress levels through the roof. Reading your description  of an ‘emotional tumble drier’ sums up exactly how we were. I actually kept a diary through it all. At one time I wrote ‘the dollops of bad news just keep on coming’ and at another time, ‘we are having to jump through so many hoops’.  

however, I now see they needed to do all these tests to determine the best treatment pathway. If only they could do it all in one day and get all the result on that same day! The suspense is agonising.

that said, the treatment for prostate cancer is incredibly improved! Even if they cannot cure the cancer, they have a whole host of tools to control the disease. There is life with or after prostate cancer! 

we came up against a lot of delays, a ‘couldn’t care less attitude’ at times etc in our local urology service. My diary came in really useful as I noted down who we had seen, what they had said and their direct contact details. At the time it gave us some feeling of control in a world that was spinning out of control! It also helped me to be politely assertive -‘you said but it’s not happened, why?’ - and push things along. We also said that we were happy to take any cancelled appointments and drop everything and get to the hospital asap. 

Another thing I did was to challenge the hospital on not meeting the Government’s Referral to Treatment (RTT) target of 62 days for cancer patients. This means that from the day of your GP’s referral to the day of your first treatment for cancer should be no more than 62 days. I always will remember the look of surprise on a doctor’s face when I mentioned this and their lack of attention to this target! I’m not sure whether he was surprised that I knew about it or surprised because he didn’t know about it!

once we got through this bureaucratic treacle and had a treatment plan, our emotions settled somewhat. 

I hope your experiences of your hospital are better than ours and if it turns out that your GP is correct in his diagnosis, that you get the treatment you need asap. I hope, too, that you will find, as we did, that life does go on! It shook us to the core but made us realise that we have to make the most of each and every day as none of us go on for ever! Life then becomes more fun despite the cancer diagnosis and family and each other all become closer and more precious! 

best of luck!

Good morning Cader28 from a wife whose husband was diagnosed with advanced metastatic prostate cancer in July 2020 and he is still going strong. These first few weeks and months are the most difficult for the family to get through until you know whether you have prostate cancer and it does involve a round of tests and procedures to determine this. There is a very good statistic that 98% of men die with it and not of it. As a starter to help you understand what the different tests are and what treatments are available IF you have cancer I usually point people to a book which you can download for free.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

There are a whole range of treatments available now which can either cure or keep the cancer under control so be positive. Ask whatever questions you like and we will try and help.

Thank you Tony. Getting some sleep is the biggest problem right now. Can't stop brain churning over. Such a shock. But you are right. Reading comments such as your really does help. Thank you. When I know more I will ask. In the meantime good luck to you and your wife. 

Thank you so much for talking the trouble to write such a full and honest account. Especially at that hour of the night/ morning. My wife also wants to say thanks. We've had no sleep, chatted and cried but hearing from others in a similar situation truly helps. Thank you. And best of luck to you both. Will keep a diary as recommended!

Thank you so much. I will follow the link you suggest. My wife does take comfort from your words of support.  It's just so hard at the moment... especially with no sleep! Good luck to you both. No doubt I'll be back when the tests etc start. 

As you can see from the number of replies you are getting during the early hours there are several of us who have a problem with sleep. For most this settles down but in the meantime try and distract yourselves by keeping busy and having little treats like going out for the day. You have been given an almighty shock but it can have its benefits. It made us re-evaluate our priorities, put our house in order and choose to live life to the full. We are a lot more spontaneous and it has definitely brought us closer together. Take one day at a time but also make sure that you advocate for yourself in getting the tests done in a timely manner. Depending on where you live you can often get results early if you have signed up to the patient portals so ask you doctor for 'full access' to your patient records. 

Again thank you for your good advice. We will take it all on board. The last 12 hours have been pretty grim, no sleep and paralysed with the worry and shock of it all. However, will distract ourselves as much as we can and keep routines going. All the best.

Hi Cader28 - oh, there are so many “brothers and sisters in arms” on here who have been through what you and your dear wife are going through right now! I know that you have been told to stay away from Google, but one site that I do recommend is PCRI.org.  The reason is that it is the site of Dr. Mark Sholtz who runs an organisation that does not affiliate with any specific treatment.  However, he is a leading oncologist and, with your PSA of 77, I think there’s a high likelihood that you will head down the oncology route.  Don’t panic: it may be some kind of prostate infection that’s giving the high reading (it’s happened before) but if it isn’t then I think it’s a good idea to watch some of his videos.  During my diagnostic phase, I found them very comforting and reassuring. He describes the effectiveness of the latest treatments clearly.  Believe me, you could be curable if it is cancer and still contained in the pelvic area. If it’s more advanced than that, there are many tools in the box to control it. He describes them all.  Hope this helps.   AW