Back in permanent AF and warfarin dose decrease

[MarkS]

Hi All, I used to have paroxysmal AF which was ablated by Prof Schilling back in 2010. I had been in NSR. However I was diagnosed with prostate cancer back in the summer. I had huge delays and postponements before I had a biopsy. I eventually got the results 5 weeks later (rather than the two weeks promised) - I assumed this was because it was a low risk pussy cat. So I had a huge shock when the urology consultant said it was aggressive high risk cancer that was advanced (i.e. spread outside the prostate).

This was a very anxious time and I didn't sleep well. Whilst lying there, I wondered if I could be in AF. My Kardia had given up the ghost, of course, so I got a new one which showed a mix of AF, unclassified and NSR.

I booked to see an EP who looked at my Kardia results, including some ones dating back to 2022 from the old Kardia. He said they actually all showed AF. There was no P wave, and the heart rate varied from about 65 to 70 bpm - what he called slow AF. He said there was no point in doing anything as I felt well with no symptoms and I could do exercise classes, weights, etc. with no problem. I'm OK with that.

The other strange issue is that the warfarin I take to remain in the 2-3 INR range has reduced over the last 6m from 8.5 to 6. I don't understand this. My diet is the same, I'm on the same type of warfarin tablets, the K2 I take hasn't changed. My weight has been pretty consistent. I don't think it's related to the prostate cancer. I am having more probiotic food, kimchi, kombucha and kefir which might have increased warfarin absorption but that's all I can think of.

Following PET CT and bone scans, my prostate cancer has now been downgraded to localised - i.e. no apparent spread outside the prostate, though it remains high risk. I have opted for radiotherapy and hormone therapy under an oncologist rather than a urologist (who I have lost faith in). We are looking at a complete cure rather than palliative or adjuvant treatment which I am very pleased about.

So, men, get your PSA checked! I caught mine just in time 🤞

[Bagrat]

Hi Mark, my husband is in slow permanent AF and like you no symptoms. Sorry to hear about your prostate issues and that you had extra angst due to premature and a more serious diagnosis than it turned out to be. Definitely good decision to put your faith in an oncologist.Strange about INR variation. I wonder if there's been any research on the place of stress in such cases. Strange about fermented foods as they are high in vit k I thought.

Best wishes for your treatment and a successful outcome.

Wendy

[MarkS in reply to Bagrat]

Hi Bagrat, many thanks for your kind words. The stress only started in September with repeated postponements of my biopsy and yet the INR drop started back in June. It is strange as I had been as steady as a rock for the previous 13 years.

[BobD Volunteer]

Mark I am so sorry to read that and as you may remember I have been there too but 13 years this May and all good so positivity is king.

[MarkS in reply to BobD]

Hi Bob, yes I remember you had PC as well and a good example as you have done so well!

[CDreamer]

Hi Mark, sorry to hear about your prostrate. My husband had brachytherapy treatment for prostrate cancer back in 2014 ish. There has been no recurrence and PSA remains low.

Take care

[MarkS in reply to CDreamer]

Hi CDreamer, thanks, that's another good example and I wish your husband well. I'm not having brachy but VMAT radiotherapy for 7 weeks at a new centre just 2 miles down the road!

[CDreamer in reply to MarkS]

Really hope it goes well for you, the treatments and the accuracy has improved so much.

As a matter of interest - PSA - Hubble’s went up to 27 and first GP told him to ignore it(???!!!). When we changed GP and area as soon as new surgery received the notes they contacted Hubble to come in for another test, they had him to urology within 2 weeks who told us that we ought to sue the first GP!

PSA is creeping up slightly - went down to zero and now it’s something like 0.7.

@KiwiBlake - don’t delay in getting testing and then have annual blood tests, treated early you have no problems, we have lost several friends diagnosed with prostrate cancer at the same time but sadly had left it too late as it had metastasised.

[MarkS in reply to CDreamer]

Thanks, CD. The treatments have improved hugely on the radiotherapy side, less so on the surgery. I can't believe the GP did not act on a PSA of 27. With your husband's PSA creeping up, it might be worth having a discussion with a specialist oncologist at some point. I understand this might be if the PSA reaches 2. Something might need zapping and there are much more accurate scans for prostate cancer now.

[KiwiBlake]

Hi Mark. What does PSA stand for? I'm a 52 year old male, so I guess I need to pay more attention to these things. Is it a blood test?Cheers Blake

[MarkS in reply to KiwiBlake]

Hi KiwiBlake, Prostate Specific Antigen. In my view, all men over 50 should have the blood test every year, but you have to ask for it (in the UK at least). My PSA had been slowly rising over the years (I plotted it on a graph), reached 3.5, I then missed out a year due to Covid and negativity from the doc, then a nice lady doctor added it to my blood tests last June after I asked rather tentatively. Low and behold it had gone up to 12.7! The first thing too many men know about it is when they get bone pain and it has metastasised. Despite what you might be told, it is a remarkably good marker. One in six men in their 60's and 70's get it.

[BobD Volunteer in reply to MarkS]

My PSA ened up around high thirties even with medication they said would bring it down. I elected to have surgery which showed it had spread so a few other bits one can live without went in the bin and I had 33 shots radio and three years of hormones. Six monthly PSA tests undetectable. at thirteen years now.

[MarkS in reply to BobD]

That's great. The three years of hormone treatment could not have been much fun - my hormone treatment may last 3 years as well.

[BobD Volunteer in reply to MarkS]

Lost a lot of body hair but didn't grow boobs. lol. My wife said I was a much nicer person. For some reason I had monthly rather than quarterly implants and whilst one nurse never hurt me at all, one or two others did I suspect because they were nervous.

[KiwiBlake in reply to MarkS]

Thanks Mark. I get bloods done every 3 months to monitor my hypotherydism. I ask my GP to add PSA. I see King Charles is in hospital having a procedure done on his prostrate, which raises the profile of this mens issue even in NZ.Cheers Blake

[secondtry]

Thanks for posting. Hope you make a steady recovery from the PC and the AF keeps stable.

Definitely second that men (particularly with AF) should improve their diet/lifestyle choices once past 50 and get their PSA check (as part of annual GP surgery blood tests). The PSA is not foolproof but I understand still the best test we have at present from the newsletters I get from the newish world class Guildford (UK) prostate centre. I am also collecting info now about different treatments should I need to take action in the future. The next step would be a conventional MRI scan.

My PSA record:

2013: 60yo: 1.2 (year of AF diagnosis)

2018: 65yo: 4.1

2021: 68yo: 3.1

2023: 70yo: 4.7 (over 70yo the current quoted acceptable range is up to 4.9)

So in my 60's it has gone up significantly whether this is related to the time I have been taking Flecainide and higher anxiety although still in NSR, who knows 🤔.

[MarkS in reply to secondtry]

Thanks, secondtry. Your PSA does seem to be increasing a bit so worth keeping an eye on it. I was 71 last year when my PSA suddenly took off. That was followed by an MRI scan and then a biopsy. I think the Guildford centre does HIFU and Nanoknife which are suitable for low and intermediate risk cancers, but mine was high risk hence more sessions with very focussed radiation.

[Desanthony]

Glad they have down graded your Cancer. I was diagnosed back in 2015 with PSA just under 13 Gleason Score 7 (3+4) and T2 N0M0. However I had my MRI scan after the biopsy - should really be done the other way around, and the MRI showed that the tumour was pushing at the back of the prostate so T3 disease could not be ruled out as some cancer cells could have escaped so HT and RT were thought to be the best way forward as the RT would hopefully "mop up" any cells that may have escaped. I found a good oncologist who decided 9 months Hormone Therapy (HT) and a month of Radiotherapy after I had been on the HT for 6 months (the HT weakens the cancer cells and stops the cancer growing - so they normally wait until you have been on the HT for a few months and it has had some effect on the cancer cells before starting RT) and to be honest like both my urologist and oncologist said I can pretty safely say that I am now cured. You will find that the way your consultant and or hospital/health authority go about treatment varies as well as varying because of the difference in your own personal disease so you may be on HT for a longer time your RT maybe longer and lots of things done differently from others. I do know it works well and for me was no bother at all. Make sure you tell all your male relatives especially brothers, sons and grandsons to get their PSA checked regularly as now you have been diagnosed they are 3 times more likely to get it. I am evangelical about this and keep telling all my male friends and relatives to get checked - it Prostate Cancer is caught early then it is curable - though every annual PSA test still has me a little concerned and I know my wife worries a lot - my PSA is being checked next month again. Take care of yourself and keep watching your AF as some think that HT can have an effect on it.

[MarkS in reply to Desanthony]

Thanks, Desanthony. I have told all my male relatives and a lot more besides! I hope your PC remains fixed.

[Desanthony in reply to MarkS]

So far so good. Keep telling everyone who will listen about getting their PSA tests regularly.

[secondtry]

Re PC treatment: You/others may want to check out this newish book, I haven't read it but it comes highly recommended - 'How to starve cancer' by Jane McLelland.

It shows how conventional treatments can be combined with repurposed drugs and other anti-cancer substances to block the known pathways cancer relies on and to directly neutralize cancer stem cells for best outcomes.

[Tellingfibs]

I have found the same re Warfarin. I was diagnosed 7 years ago and for a couple of years, I was taking 10 mgs Warfarin each day to keep my INR levels right. However, over the last couple of years I’ve had to reduce my Warfarin to stay in range, and now I take a mix of 7 mgs and 8 mgs over a week. My diet is pretty constant too. Yet another mystery in our Afib journey !

Annie.