Update. Good & Bad News.

Casper, yes, that jump to 19 seems a little questionable and needs some further investigating. It may be an outlier caused by other activities, etc... and this PSA test will fall back in line with your previous results. Always nice to have all of your treatment options on the table or at least have it be your choice to eliminate them. Good luck and keep us updated.

bigrich22 said...
Casper, yes, that jump to 19 seems a little questionable and needs some further investigating. It may be an outlier caused by other activities, etc... and this PSA test will fall back in line with your previous results. Always nice to have all of your treatment options on the table or at least have it be your choice to eliminate them. Good luck and keep us updated.

bigrich22, thanks for your reply. Well I am not going to let them rush me into a decision. It has taken me almost a year to get where I am now, so a couple more months will make no difference in my book. I just have a hunch that the 19 was either due to a mistake or some kind of infection, so am banking on a more favourable result with today's test. If that comes back high it could be because the test has been taken too soon after my biopsy, so will wait a couple more weeks and ask for another. It is my body, my life and I am in the driving seat here, not them.

They thought that because my score was 19 that something would show on the bone scan, but it was clear, so the 3+4 looks like it is prostate confined and not as aggressive as they first thought. Hopefully as lower PSA score this time round will confirm that.

InTheShop said...
Sometimes you can also get kicked out of LDR brachy if you prostate is too big. That was a concern for my brother but the RO decided it was just within limits so they went ahead.

Here's hoping they change their mind on your PSA and let you do the treatment you want. Still, EBRT isn't all that bad - except for the daily routine. You might get forced into that if they hold firm on not doing the brachy.

Hang in there,
Andrew

Andrew. I always respect your input. Thank you.

EBRT just wont work for me. 7 weeks for 5 days a week would just be to much. It is not just the travelling backwards and forwards, but as the treatment goes on the side effects can kick in. Having to do that alone would make this option unthinkable in my case. HDR mono would be my second option, should brachy not be on the table.

Another thing that I did not mention above, is that our health care over here is in meltdown. Funding being reduced and treatments being withdrawn. It is honestly not good right now. I was also told today that if ED became a problem after treatment they would automaticly refer me to there specialist clinic for a pump and special drugs. Because of cuts in funding they can no longer do that. I would have to go back to my regular doctor and ask for a referral, but, because of funding cuts they can refuse, so you are just left high and dry with little chance of a cure for the side effect. I have made an appointment to day to see my GP and ask her if she will refer me if I have that problem. If she says NO then I will have to seriously think twice before having any treatment. You guys over there sure are lucky with your insurance based health care system.

I'm no doctor that's for sure. But the more I look at your Psa progression the more I think it's suspect.

From 5.1 to 19 in two months? Maybe someone more knowledgeable here can correct me, but that sure seems like infection. Not saying you don't have Cancer, you clearly do, from your biopsy. But I would bet the real Cancer related PSA is way lower

Where are all the big guns here tonight? I was hoping for some more input before my meeting tomorrow.

Well it is midnight here, so am off to my bed before I turn into a pumpkin. Hmmmm! I wonder if pumpkins can get PC.....Pumpkin Cancer

Goodnight all.

InTheShop said...
I know about the health system you've got. My wife's family is from the UK - Worcester area - and I get to hear first hand the problems my sister-in-law has getting just basic health care.

I could tell you horror stories about the problems my brother-in-law had getting treatment after his heart attack. But then, you'd know all about that stuff.

Hang in there, hope something works out for you,
Andrew

I went through Worcester last Sunday, on my way to Birmingham. I also have a cousin in Redditch just north of there. I also used to have a holiday cottage in Stratford-On-Avon (Shakespeare country) just east of Worcester, so know the area well. They say the health care here gets better the further north you go, so your family must get a better service than we do down in the south east.

I had HDR brachytherapy and 59 PSA. No problem. My uro has used brachytherapy for men with 400 PSA. A very large LDR brachytherapy clinic here in Georgia told me they have used it with men over 1,000. They do not rule anyone out merely due to PSA. PSA 19 should not be an issue.

PSA can jump that fast, or faster, without infection being involved.

Such was my case.

In 2007 my PSA was above 4.0
In 2008,a year later, it rose to 12.3
Had my 3rd biopsy at that point, found the cancer.
Less than 8 weeks later, PSA rose from 12.3 to 18.X, a rise of over 6 whole points in less than 2 month, and no prostate infection was ever found in me.

It was just the case of rapid PSA growth from the PC itself, a very troublesome path I have been on from day one, even to now.

Thanks guys for all your replies last night. Unfortunately they came through while I was asleep.

I am waiting at the hospital right now, so will hopefully have more news and be able to reply more when I get home tonight.

Could any of you guys make anything from my biopsy report above? I did not understand the “painted blue” parts!

More later and thank you.

Well this past couple of days has been a bit of a roller-coaster for me and I am glad it is now over, well this stage anyway. Now it is decision time.

I found out yesterday that although my bone scan came back negative they had removed my main option of choice, LDR Brachy Seeds. This was because my PSA was above there 15 threshold. Thanks to those of you that told me the sudden spike from 5.1 to 19 was very unlikely caused by my PC. I challenged that yesterday and they took a fresh blood sample. I walked into the clinic today and the nurse that I saw yesterday came running up to me and said with a big smile “lucky you questioned your PSA reading yesterday, I have just had the new results through and the reading is now 6.4”.......YES!......YES!......YES!. Thank you all very much for keeping me focused on that point. If it was not for you guys I doubt I would of asked. Talk about an early Christmas present.

So now all options are back on the table, but it not as clear cut as I thought it would be. Let me explain. I first saw the surgeon. He told me that he could do a good job at nerve sparing surgery apart from the right side, because that is where the mass of the cancer is. He then said that I would most certainly suffer major ED. That was good enough for me to say thanks, but no thanks and moved onto number two, the external radiation guy. He told me I was a very good candidate for his treatment and was confident about a good outcome. After he explained about the seven and a half weeks, five days a week I told him that I don’t think that part would work well for me. I explained my reasons and he did agree that maybe the treatment was not for me. This is too easy I thought as I moved onto number three, The LDR & HDR Brachy guy. He explained that I would be a very good candidate (where did I hear that before) for LDR Mono Brachy Seeds and that he had carried out this procedure for the past eight years, at the rate of 80 per year. Then he told me about HDR Brachy and said that treatment would involve HT as well. I know that you guys have some big issues with HT and I don’t really want any of that and explained this to him. I thought “job done” I am going with my first choice! Then he surprised me by offering a third choice. He told me that they were doing clinical trials that I could take part in “single dose high dose rate brachytherapy monotherapy in prostate cancer” Do any of you guys know about these trials? He gave me a technical document about it, but I cant say I understand it. It was written by a guy named Peter Hoskin. Any help or advice regarding these trials would help, because it could be a further option for me, as it does not involve any other treatment, not even HT.

He said if I wanted to go with the seeds then he could schedule an appointment for December 10th, but I told him I would rather get Christmas out of the way and have it done Jan/Feb next year. He said that with my latest PSA score there is no rush and that would be fine. If I wanted to go with the trials option then it would be later in the year 2015, plus that would also involve me having a key worker who would contact me regularly to find out how things were going and I would have to go back to the hospital on a regular basis to allow them to gather information regarding my trial treatment. Once a month at first, then every three months and then every six months over a period of 5 years. Anybody have experience or knowledge of these trials?

Well it has been another very long day and it is 11.30pm here, so I am off to my bed. I still have to reply to some of last nights posts, but will do that tomorrow when I have more time.

Thanks again guys for pushing me to question my 19 PSA score. If you had not done that then I would of probably ended up going with an option that I did not want.

Thank you all very much.

Caspar, so happy for this good news you received.
I sent you an email

Hi Casper,
Great that your PSA has settled back down – Jeff is the king of PSA bouncing around as you can see from his footer below!
We are also in the South East and Jeff went down the Brachy route coming up for 4 years ago. As our NHS Trust didn’t have a consultant practising brachytherapy at the time, with the help of our MacMillan nurse, Jeff was referred to Prof Stephen Langley at Guildford hospital who carried out his implant. Jeff pretty much sailed through the procedure and recovery and 4 years later he has no side effects and it is like it was all just a bad dream!
I wish I could understand your biopsy results; they are so different to how it is usually presented as in % core involvement. Might be worth a call to your MacMillan nurse to see if she can translate it for you as I’d be wanting to know how many samples were taken in total during the biopsy and where in the prostate and what % of the sample was positive.
The option of the clinical trial has thrown a spanner in the works for you by the sounds of it but at least you know LDR is back on the table should you finally decide to go that route.
All the best to you.
Susan
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