PSA starting to rise after ERBT

Thanks for the input so far guys. My desire to avoid bicalutamide (if/when it comes to that) follows on from my brief experience in 2016 but also my brother. He's been on it for 2 years now after his PSA started rising after high dose brachytherapy. It's the breast enlargement and soreness that is getting to him only partially relieved by tamoxifen. 

Purely by co-incidence, he is going to see the oncologist next week to discuss progress.

Just thinking a bit more about my latest PSA reading, I reread some of Patrick Walsh's book "Guide To Surviving Prostate Cancer" and he devotes some time to the issue of bio chemical recurrence and at what stage you start a fresh round of treatment - especially hormone treatment. He seems to be arguing that there is no need to leap straight back into this, or into it for the first time. Given the QOL issues, and on the assumption that it hasn't yet shown up on any scans, he argues that, if the cancer is slow growing, then hormone therapy can wait.

Would I be right in thinking that a period of "active surveillance" would follow the first sign of treatment failure?

I just thought I'd share a few thoughts. I am, by nature, a pessimist and I think I always expected the treatment to fail. The fact that the PSA has risen time after time without ever stabilizing confirmed me in that view even if the team treating me were unconcerned initially. Not only that but my older brother's treatment has failed as well (although he was gleason 9).

On the other hand, I suppose one could argue that failure might be a bit harsh. It will certainly have kicked the can down the road for a bit and I've had 3 years treatment free.

I'm 71 next month and I am not at all sure I would accept further treatment. Certainly not bicalutamide and this is what my brother was put on by his oncologist at the Christie (in Manchester) when his cancer recurred. I would have to do some sort of cost benefit analysis. How soon would it become terminal if untreated for example?

I think quality of life is so important at this stage so that's the decision I will have to make along with every other prostate cancer patient who doesn't get cured.

Unfortunately the steady rise in my PSA continues. It is now 3 ng. I spoke to the advanced nurse practitioner at Clatterbridge just 30 minutes ago and my oncologist will look at the upward trend and decide where to go from there. I'll get another call in a couple of days. We are now on 4 successive rises so it doesn't look good.

What the nurse said, and this chimes with my reading of this and other sites that any recurrence might not be immediately visible so it wasn't a given that I'd be having scans.

Watch this space as they say.

Things moving quite quickly now. Just received a call from the nurse at Clatterbridge. They are organizing a CT scan and a bone scan. I will then see the oncologist in 4 to 6 weeks to get/discuss the results. I've also been asked to have another PSA test ahead of my appointment.

I am having my bone scan this Monday (21st) - hadn't fully appreciated that it is a 4 hour job although once the dye has been injected they say I can leave the hospital for 2 hours and come back for X Rays. MRI scan is not until 19th of November and I also await a date for the CT scan.

Just a little comment on scans generally. Little item in the "I" newspaper today. The UK has a problem with a lot of ageing equipment in the radiology field but also, and more importantly, a lack of radiologists. Here we have 7 radiologists per 100,000 people compared to 12 per 100,000 people as an EU average. Admittedly the article was written in the context of lung cancer and the tragic early death of Leah Bracknell (ex Emmerdale star) at 55.

Not something that gets a lot of headlines and I certainly wasn't aware of it. Might drop an email to my MP. It's a vital issue for all cancer patients.

So I had my PET scan at the Royal in Liverpool on Friday 3rd January. To recap, this is the 4th scan I've had since my PSA became a cause for concern (more than 2 above nadir - 4 successive rises). Bone, MRI and CT were all clear.

Just reflecting how you become hypersensitive to anything out of the ordinary. My next onco appointment arrived in the post today (at which I will find out the extent of the recurrence assuming the PET scan has done its job). It's next Wednesday at 08.45 am.

I'm thinking "hey, all my other appointments were mid morning, what is the significance of this early one?"

I'm sure I'm not alone in this. Anyway, it will be interesting to see what treatment is proposed. Will I be "persuaded" to start HT immediately, will they hold off until it reaches double figures?

I'll report next week.

So, everything is now in motion. Good news is that a PSA test done on 20th January shows it is steady at 3.3. I have a planning scan at Clatterbridge on Monday 3rd February - the onco did mention CT and MRI so not sure if both will be done on the same day but I have been advised to allow for being there for several hours.

The full plan is 30 Gy of radiation to each positive node (there are 3 on the left pelvic side) and 2 years on Bicalutamide with a side order of Tamoxifen for gynaecomastia (I did get this back in 2016 when I had six months on bica). She will tell me when to start the pills. She doesn't want me to start until after planning as the bica might shrink them too much and make accurate targeting impossible.

Interesting point is that there was no recurrence in or directly next to the prostate. It looks like the first raft of treatment did a good job. I'm just wondering if, technically, this isn't recurrence but evidence that a tiny amount of prostate cancer cells had escaped before my main treatment in 2016.

Forgot to mention in a previous post but she has advised me to cut down on carbs and up my exercise levels. She thinks I am "a little bit overweight" and I am just in the type 2 diabetes area.

Might have a "last supper" type celebration over the weekend to mark the end of dry January (only 2 small lapses - a half pint of beer and one glass of wine) - this will involve good food and wine! Bootcamp regime can start on Monday.

Couple of little snippets from today's planning session at Clatterbridge. I established that SABR stands for Stereotactical Ablative Radiotherapy. It is similar to Cyber Knife and is used in similar situations. I gather true Cyber Knife requires a specialized machine whereas SABR can be done with a conventional machine presumably cranked up to full volume and narrowly aimed.

An innovation today was the "bean bag" - This device, and it is indeed a bean bag but an inflatable one, helps to stop you moving. You lie on it and the team pull you and it about a bit until they've got you where they want you. They then let some of the air out and it become hard and shaped to your body. Ingenious.

They also used my old tattoos from 2016. I can't see them at all but the trained eye evidently can.

I have now done 6 of the 9 SABR treatments. In terms of side effects from the RT I would say minimal so far although I am getting more tired. I learned a bit about how the treatment is planned and delivered on Monday this week. Each affected node is treated as a one off so node number one has 3 blasts of RT then, the following week, they move on to node number two. This means that there is a bit of last minute planning each Monday session so you are on the bed for a bit longer. They also call in "the physicists" presumably to check everything is ready to go. 

Final week starting next Monday so "the physicists" will be called in again. A lot more scribbling on your torso than I remember from my original treatment back in 2016 but I guess the treatment is more complex in terms of delivery.

I haven't noticed any massive side effects from the bicalutamide yet apart from tiredness. 

Bit of an update. Covid 19 put paid to an early post treatment PSA test. My first review was by phone and I was able to report that side effects from both the SABR treatment and the Bicalutamide were manageable. It was slightly odd not knowing what my PSA was.

Fast forward to a phone review with Clatterbridge this morning. PSA 0.1 so happy days although I am acutely aware that the  bicalutamide is a big factor here. The oncologist did say that the PSA result was "better than expected." I will now go back on to 6 monthly reviews with the advanced nurse practitioner (and, of course, regular PSA tests).

Side effects from the SABR are really minimal - flatulence being the main one but no diarrhoea or pain. The bicalutamide is causing the occasional mild hot flush and tiredness is an issue resolved by a mid afternoon nap. Gynaecomastia is very mild but I guess the tamoxifen is doing the job here.

I'll be on the Bicalutamide until January 2022. 

Not posted on here for about 6 months but today is one of those good ones that everybody needs from time to time. It's 5 years since my original diagnosis and my PSA is 0.1 so no movement at all since July. I am halfway through a 2 year course of bicalutamide after SABR treatment in March this year to treat a recurrence in the lymph nodes (3 small lumps). Allowing for the fact that bicalutamide can disguise any growth in hormone resistant cells, I am still pretty chuffed.

Best wishes for the holiday season to everybody on these forums and to all the wonderful staff at Cancer Centres and Hospitals throughout the UK.