PSA starting to rise after ERBT

User

Posted 18 Oct 2019 at 15:33

There is a major shortage of radiologists who do mpMRI prostate scans.

The hope is that AI (Artificial Intelligence) will take this over in time. It is already taking over some other radiology areas.

User

Posted 18 Oct 2019 at 17:10

Originally Posted by: Online Community Member

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.

When I had my bone scan, they injected me with the radioactive tracing agent, and we repaired to the nearby pub where the parking is free, unlike the NHS hospital.

I returned after two or three hours, and the whole body scan took about twenty minutes, and Her Loveliness was allowed to sit next to me, as I was radioactive, not the whole room!

Best of luck.

Cheers, John.

User

Posted 04 Dec 2019 at 11:08

To the oncologist appointment this morning. All scans, bone, CT and MRI completely clear. I'll take that for now. My PSA is 3.3 ng. No treatment indicated at this stage but they are arranging for me to have a PET scan which should be able to find the thing (possibly some lymph node involvement) and I will see the oncologist again in February to discuss the results. Not many of these scanners around apparently so I'll have to go to the Royal Liverpool for this.

Don't know if this is a self defence mechanism but I've become quite good at compartmentalizing things. I see the next 2 months (including Christmas of course) as a bit of a free hit - no treatment so extending my treatment free period to almost 4 years.

User

Posted 04 Dec 2019 at 11:21

Great news Pete. Hope you and your loved ones have a fantastic festive period. :-)

simon

User

Posted 04 Dec 2019 at 11:28

Good news Pete. I’ve been compartmentalising my life too into 6 month blocks between full scans. And I’m 4 1/2 yrs treatment free now. I’ve loved the six month breaks and almost forget I had cancer at all until the next lot. I’m in the sh*t now though and in permanent panic I guess. But still I have Xmas clear , repeat scans end Jan and then treatment start at last Feb it seems. And I still feel 100%. I hate this disease ! Enjoy every minute.

User

Posted 04 Dec 2019 at 11:46

That's really good news, Pete. Have a great Christmas!

Best wishes,

Chris

User

Posted 04 Dec 2019 at 16:12

Good news Pete. Enjoy the festivities.

Ido4

User

Posted 14 Jan 2020 at 11:42

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.

User

Posted 22 Jan 2020 at 11:39

So, early appointment with the oncologist this morning. I knew the bad news because they had primed me to expect that the cancer had returned despite the bone, MRI and CT scans all being clear.

So the better/good news is that the PET scan has detected involvement in 3 lymph nodes at a very small level - the tumours are tiny. The better news still is that she thinks there is a treatment pathway that will push the cancer back and possibly even cure it at the second time of asking. The lymph nodes are all above the prostate so maximum dose to the pelvis is not an issue (I also had dose painting radiotherapy which minimises the dose to peripheral areas anyway). I will now have planning scans (MRI and CT) and then 3 extremely high doses of radiotherapy directed at the lymph nodes. The downside is that she wants me to resume Hormone Therapy (I had 6 months in 2016 around the original EBRT). Recommendation is bicalutamide rather than injections. An Australian study had shown better outcomes if the RT was accompanied by HT. I don't start the HT until after the planning scans because they might shrink the tumours too much and they wouldn't be able to see them.

This form of radiotherapy is called SABR (it's not cyber knife) but has a similar purpose.

I'll take this. I was becoming resigned to the rest of my days on HT with no end in sight. Have to say I haven't seen or heard of this precise form of treatment following EBRT before.

User

Posted 22 Jan 2020 at 14:08

In the circumstances, I think that is absolutely the best news you could have hoped for. It is the same route John's onco has said he will take in this situation.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Jan 2020 at 18:46

I agree this is the best outcome in the circumstances. Hope the SABR does the job.

Ido4

User

Posted 31 Jan 2020 at 11:17

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.

User

Posted 31 Jan 2020 at 14:27

Hi Pete

Sorry to read about your journey and your current situation, on the flip side things don't seem quite as bad as you might have first feared (I think?), although the failure with the original RT is, of course, a major disappointment.

Your story and original diagnosis are similar to mine (cT2c, MRI T3bN0Mo, Gleason 4+3, PSA 27.9), although your subsequent treatment differed as I had 7.5 wks of RT following 8 months of Casodex.

I am in a similar situation with a failure some 9 yrs after my original journey started in 2010 with a PSA reading of 12.8 taken in Nov last year (interestingly it has subsequently risen to 13.2 since).

Bone scans, MRI & PET scan thankfully show no spread outside the Prostate but a recurrence of T3b with two areas one in the Prostate & the other in the left seminal vesicle (sounds like a contradiction but that's how the Urologist described it, RE spread outside the Prostate.)

PS: I sympathise and empathise RE: HT, it sucks!

Anyway I don't want to derail the thread so I will be following with interest and lets hope things turn out in a positive way, all the best

User

Posted 03 Feb 2020 at 22:28

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.

User

Posted 05 Feb 2020 at 00:46

Hi Pete,

Just wanted to wish you the best of luck with this form of Radiotherapy.

I'll be very interested in how it goes for you as it maybe something which could help me.

Keep in touch with us.

Steve

User

Posted 05 Feb 2020 at 15:30

Yes - I'll update regularly Steve. The interesting thing was when the oncologist showed me the results of the PET scan on her laptop. 3 little green points of light. Interestingly the area round the prostate itself was completely clear so the initial treatment had evidently done a decent job. The key thing was this lymph node involvement was all above the prostate so the maximum pelvic dose of radiotherapy didn't apply and this opens the door for the SABR treatment which is similar to cyber knife in that very high doses are aimed at a very small area.

I was reflecting the other day that one's thinking can become a bit fixed. I was in the mindset that radiotherapy was a non starter because of this maximum pelvic dose thing. Clearly that would have applied had the cancer been around the prostate itself but my situation is not uncommon. The dose painting treatment I had was also a factor in that the original treatment was designed to spare surrounding tissue.

User

Posted 05 Feb 2020 at 21:48

It all sounds quite hopeful, Pete. Keeping my fingers crossed for you. I've seen entirely too much of Clatterbridge myself!

Very best wishes,

Chris

User

Posted 28 Feb 2020 at 15:27

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.

User

Posted 06 Mar 2020 at 20:36

So today was the final SABR session of 9 over 3 weeks. 3 lymph nodes treated. Quick update on side effects. From the SABR treatment, although I was warned about possible bowel issues, nothing so far. Tiredness? Well OK except yesterday, about 2 pm, I felt that massive tiredness that so many will be familiar with. In short it hit me like a train. I retired to the bedroom, lay down and was out for 2 hours.

In the background, of course, there is the hormone treatment (150 mg Bicalutamide Daily). Libido? That's gone after about a month. The other issue is the Tamoxifen - this is covered in more detail in a thread about exercise that I started in the Living With Prostate Cancer section. My oncologist prescribed 1 x 20 mg tablet daily. Spooked by reports of fatty liver disease, the one tablet a week NICE guidelines and reports of side effects, I have been taking one every 2 or 3 days but the dreaded breast pain is starting so I have gone on to one a day for now. Slight metallic taste which is quite common but, otherwise, no issues.

My brother was prescribed one per week as per NICE guidelines - as much use as a chocolate fireguard and all the evidence indicates that this is the case. He is suffering badly from gynecomastia. How we deal with this issue really needs gripping. The daily dose of tamoxifen works according to any number of studies.

4 weeks now to first review and PSA test.

To be continued.

User

Posted 08 Jul 2020 at 11:35

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.

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