T4 N1 M1b prognosis?

User

Posted 05 Jul 2023 at 00:05

Hello everyone,

Two months ago, aged 60, and following 7 weeks of 'sciatica' which ultimately affected both legs and made me housebound, I was rushed to hospital after a PSA of 75 suggested prostate cancer may be in the spine and was causing cauda equina syndrome.

I'm T4 N1 M1b, with 7 meta in the bones, 3 in the spine (two emergency-operated on with bone cement), one in a rib, and 3 in the pelvis/hips though they are said to be small. There's at least 2 masses, one 3cms under a branched artery, the aortic bifurcation, and 2cms near the iliac blood vessels, and there's cancer around a kidney's ureter which is affecting its function but does not yet require a stent. Cysts on my liver have been declared benign without biopsy on the basis of MRI reviews. Some of the liquid bone cement, which was squirted into the vertebrae during surgery, entered the venous system before setting and ended up in my lungs, now showing as dark opacities, and I've a slight cough as a result. Bought an oximeter to self-monitor.

I'm on Degarelix, and Apalutamide. Doublet therapy only (I'd asked for chemo) as my cancer hasn't migrated north of the midriff and was told chemo's only for triplet therapy for wider spread. I've responded well to Degarelix, testosterone down 99.4%, but PSA falling more slowly than some experiences on here, to 49 and still at 17, but these later tests followed me having flexible cystoscopy and urodynamics ahead of a planned TURP.

The Apalutamide, which I was nervous of taking due to its list of quite serious side-effects of high incidence, has so far given me some brief hot flushes within an hour or so of taking it but has also zonked me for half the day, making me sleep for up to 14 hours all told. Waking up became scary until I got used to it, I was so tired I thought 'this is it, I'm dying', but soon improved when vertical. My BP was already highish so needed to go onto BP pills first.

The spinal surgery went well, and for the first week I could walk and balance unaided, but a pain developed in my hip and I've since walked with a stick, fearing any fall. This pain comes on especially when laid down, and at other times it limits my walking range, and I drag my right foot when tiring, and I'm half the speed I was. Hard to believe that 4 months ago I walked and cycled everywhere, and said of myself I could "walk the back legs off a donkey". They'd cut away a bone cage off the L5 vertebrae during surgery and I suspect upward mattress pressure is now free to press on the cauda equina nerves when prone, or there is some permanent damage. The oncologist said the cancer in the hip cannot be the cause as it's tiny.

That's the background, sorry if it's too detailed. Before a bone scan was done I asked the oncologist how long I had and she suggested she'd known men in this situation last 3 or 4 years, some less, and some exceptional ones a decade or so, which didn't really tell me much. I'll be asking her if she can refine her prognosis now she has more info when I next see her (2 month gap) but wondering if anyone here can advise before then.

I live alone and am still in this stage where I don't know if I should be trying to urgently clear my house, which is jammed with a lifetime's collections, get everything sorted while I can, which I've already started but is physically taxing due to mobility issues and exhaustion, or there's plenty more time for that than I imagine.

Thanks for reading.

Steve

Edited by member 05 Jul 2023 at 14:54 | Reason: Not specified

User

Posted 05 Jul 2023 at 16:49

Sorry you find yourself here with that diagnosis. The prognosis of 3-4 years, but maybe more and maybe less is about as accurate as you will get.

It really depends on how well you respond to the hormone treatment. For some men it just stops the prostate cells in their tracks, your body will repair a lot of the damage caused by the cancer and you will live a reasonably comfortable life. For others the hormones don't work as well and the disease only retreats slowly, or stays the same or advances but at a reduced rate. At some point the cancer becomes hormone resistant and then, it just progresses as before. For most men the cancer can be held at bay for about four years, exceptionally the cancer never becomes hormone resistant and people survive decades.

The onco may be able to establish if you are currently responding well to the drugs, but predicting when the cancer will become hormone resistant is impossible, so the accuracy of the prognosis is unlikely to improve.

Getting you affairs in order makes sense, make a will etc. If you can't get the house sorted, don't worry too much, once you're dead it's someone else's problem.

Dave

User

Posted 05 Jul 2023 at 22:59

Hi Dave,

Thank you for replying, I know I'm asking someone to look into a crystal ball really, and that there will be huge variance depending on how an individual responds to therapy, and for how long, but you confirming what might perhaps be considered typical offers me some reassurance.

I'm most concerned about a tumour sat below a branched artery, ready to rupture it one day, and how long it might be between scans to show this isn't happening, but hopefully something else will be tried there, to kill cancer cells rather than only keep them on a leash, such as radioactive beads.

I'll try to get all the essentials done, and some dusting (!) but leave the rest for a house clearance man, and try my best to chill.

Steve

User

Posted 05 Jul 2023 at 23:57

Originally Posted by: Online Community Member

But, unless you are exceptionally unlucky and have a rare hormone-independent cancer, the degarelix & apalutimide will shrink the tumour below the branched artery very quickly so arterial rupture isn't a significant risk.

Once HT has started, it is unusual for a man to have further scans unless the PSA starts to rise significantly. Hopefully, it will be some years before you fall into that group. Radioactive beads would only usually be placed in the prostate (brachytherapy), a treatment that is not available to men who are incurable. A short spat of RT, at a high dose, may be offered if the tumour is not too close to the aorta or other major organs or if they identified at some point in the future that it was getting too close to the aorta and becoming dangerous.

I think the most pressing risk is spinal cord compression - I assume from your post that the episode 2 months ago has not left you paralysed but it is essential that you a) know all the potential symptoms and b) seek emergency treatment if you believe it is happening again.

Fingers crossed your PSA drops more quickly now the apalutimide is playing its part.

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

User

Posted 06 Jul 2023 at 06:33

Definitely sort the house out it's highly therapeutic to have a good clearout

User

Posted 07 Jul 2023 at 18:58

Hi francij1,

Thank you for your reply. I've so much stuff I haven't been able to decorate for 20 years as there's no space to put things while I empty another room. To get rid of the dust would be something, I don't want a Kim & Aggie type running their fingers down things. Somehow I must devise it so that I have clean underpants for hospital and spotless picture rails and skirting boards prior to the pearly gates.

User

Posted 07 Jul 2023 at 19:12

Hi LynEyre,

Thank you for your reply, the results of my next PSA test on 11th July will reveal if my cancer is as hormone sensitive as other mens can be and the tumour isn't growing, even at a reduced rate. PSA's have been heading in the right direction, but maybe not fast enough...

I've another (slightly) fractured vertebrae, T8, which they're not doing anything about, and I can now feel it, and I get aches and pains all over the place, and of course automatically think it's cancer when it might be the treatment.

Not paralysed, as I can walk to the bus stop 1/3rd mile away, slowly and with a stick, and I remain continent, but it's possible there is some degree of permanent damage to the cauda equina nerves, something which, had A&E not sent me home with Codeine 2 weeks into 7 weeks of 'sciatica' I might have avoided and not have to keep taking pain medication.

The migration of bone cement into lungs which were clear of cancer on a CT scan before the op is something I could have done without too. Not on thinners yet, but a GP is doing a phone consultation on Tuesday so will ask (concerned about the risk of blood clots - the bone cement and the exhaustion from Apalutamide making me tired/lie down more).

I wasn't called forward (aged 60) to have a Covid booster, even though I'm now immunocompromised and with a lung deficiency of sorts, but I recently managed to get it myself as a drop-in.

Thanks for the heads-up about radioactive beads not being an option. The aortic bifurcation sits low in the abdomen so it would be the same risk as the 5 palliative fractions I had on the surgical site if I was to have RT there, bowels generally. Rectal wall is said to be thickened with cancer on the MRI so any zapping through that area would be a bonus.

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