Tumor at Spinal Cord

@Call77

Sorry to hear about your situation. You did good coming to this forum. There are several people here who have had similar experiences and spinal metastasis. I am sure they will chip in shortly.
Sending you healing vibes an prayers.

I had a tumor wrapped around my L4 on my spinal cord. They did an MRI figured out where exactly it was located and then I had three sessions of SBRT radiation to remove it. The T4 seems to be more of an issue and in a different location.

If the radiation oncologist said they can’t use that then it could be that it has grown too much and maybe surgery can resolve it. I was told if the metastasis I had got any worse it could affect my ability to walk.

I’ve heard of a lot of different tumor problems people had, but nothing similar to what you’re having right now.

Here are some information from an AI search.

A prostate cancer metastasis on the T4 vertebra can potentially be removed or decompressed to relieve pressure on the spinal cord and restore or preserve leg function, especially in carefully selected patients. This type of surgery involves a neurosurgeon, an orthopedic spine surgeon, or a multidisciplinary team of both.

Hopefully you can get these kind of doctors involved real soon so you can get this situation treated quickly.

Since they’ve tried hormone therapy (ADT: Eligard & ARPI: Apalutumide [Erleada]), and he may be too week for chemo, have they discussed using Pluvicto (Lutetium-177) or Xofigo (Radium-223)?

Have they done a PSMA PET scan?

My tumour was at T3 in 2021, so in almost the identical spot as your husband's, and it also rapidly paralysed me from the ribs down. I had emergency debulking surgery to my spine to remove most of the tumour, then 5 rounds of radiation to my spine a few weeks later to destroy any remnants. I was flat on my back in a hospital bed for two months, then in the rehab centre for another month and a half before I could go back home (in a wheelchair).

Just sitting up was a struggle at first — I could barely even wiggle my toes. By 3 months, I could briefly bear weight by locking my knees. After 9 months, I was starting to use a walker for very short distances (100m was like a marathon). After a year, I was getting around more outside with a walker, and starting to use a cane indoors. At 18 months, I was using a cane outdoors, and I tried my first post-surgery bicycle ride.

I never fully recovered — I still have imperfect sensation below my ribs, and my right leg is weaker than my left — but after 2 years I was walking again without a cane, riding a bicycle, shovelling snow, and even climbing ladders, and now, after 4 years, I'm living an almost normal life, something I never thought I'd have again. I am very grateful for everything I got back.

But your husband needs to know that he's facing the challenge of his life: the 150 km bike rides were just a light warm-up compared to what it's going to take to regain mobility, and there will be lots of setbacks and no guarantees. Good physiotherapists and occupational therapists will be key.

I wish him and you all the best of luck. ❤️

I'm so sorry for what you're both going through, and know the uncertainty is as bad as the physical pain. Early this year my PSMA-PET scan showed one of my spinal mets starting to impinge on the spinal cord. Medical oncologist and radiation oncologist jumped on that right away with a fluoroscopically-guided intrathecal injection of contrast to get a detailed CT myelography, a CT of the lumbar and thoracic vertebrae. Then very targeted SBRT radiation to five specific areas reduced the mets that were most problematic and painful. I've been fortunate to have the best treatment and research oncologists at Huntsman Cancer Center here in Salt Lake City. Are you working with a major cancer center? Your husband's condition certainly may be different from mine, but you're wise to keep asking the questions and finding the best clinicians you can.

@northoftheborder

Thanks everyone for their reply. North of the Border, thanks for your info. Glad to hear you're fairly mobile now. They test my husband's strength every day and his legs are strong, and they poke him with pins and he has to tell them whether it's 'sharp' or 'dull'...
They are going to do radiation to get the rest of it I think in early December. Very very tough situation.
Three months in the hospital is a long time...I'm hoping his is a quicker recovery but as long as he recovers, that's what truly matters...
Thanks

@cal77 The earlier they catch it, the better, because there's less nerve damage that has to heal. I limped into the ER using a cane on a Monday morning, deteriorated gradually over the week, and woke up from a nap in my hospital bed Friday afternoon suddenly unable to move my legs at all: they rushed me in for 10 hours of emergency spinal surgery in the wee hours of the next morning.

If we'd caught it a week or two earlier, when I could still use my legs (albeit with poor balance and staggering sideways a lot), my recovery might have been weeks instead of a couple of years. So there's a chance they reached your husband's in time.

In my case, at least I could still wiggle one toe slightly, so they knew that my spinal cord wasn't completely crushed and that there was hope of some recovery (though they didn't expect it to be as good as it was; it wasn't at all clear at the time that I'd ever walk again unassisted, and the rehab centre trained me for life in a wheelchair).

@northoftheborder

We are praying and hoping it wasn't too late and he will walk, cycle and do all the things he was doing before. It all happened so fast. He started to feel very tired and fatigued beginning of October. Then, he said he sneezed and his upper back hurt.. He thought he had a virus...Meanwhile his PSA shot up to 205....This all should have been an alert to the Oncologist, but apparently not...

Anyways, we are going one day at a time He can move his legs, wiggle his toes, but can't stand yet...They will do radiation early Dec.,...to get the rest of the tumor...This is all such a nightmare.

@cal77, how are you and your husband doing? Has he started radiation?