Sacrum tumor

[Pops78]

Anyone have experience with a Sacrum tumor? Onc. wants to do a needle biopsy, then radiation but reading up on this, IF it shows a Chordoma, radiation is only done AFTER surgery and a surgical team should be standing by ready to go if it is a chordoma as the needle will spread it immediately and it's hard to treat. Radiation alone does not kill it. Called Mayo for a second opinion with Dr. Khon but it will take awhile to see him. This has grown from barely visible in Feb 22, which our Onc. missed, to 4.0 x 3.5 x 4.0 in transverse. Also additional separate enhancing osseous metastasis measuring 2 cm involving the left superior articular process of S1 in the left L5-S1 facet joint and upper left sacral ala. on MRI 9/07/22. Orch and Nubeqa, dx last year with advanced PC and bone mets.

[Tall_Allen]

You should be talking to a neurologist. Invasion into the spinal chord is relatively rare.

[Pops78 in reply to Tall_Allen]

Thanks TA.

[Pops78 in reply to Tall_Allen]

Question, his MO is at Houston Methodist. Found a Neurosurgeon at MD Anderson who specializes in spinal tumors so trying to see him. MDA also has a RO who is really good at Proton. Meth. is going to use 3D Phroton which I understand can actually go through the tumor but is Proton strong enough? ( We started at MDA genitourinary but had communication problems there). This was questioned on a scan in Feb. and suggested to follow up with Nuclear and it was not done. Is it ok to use doctors/specialists at one place, like MDA, while the MO is at another, Meth? Looking for a new MO anyway since she's been gone most of this year, maybe why she missed this in Feb? Sorry but I'm the wife and he cannot help with his care, or much else, and I'm on overload!

[Tall_Allen in reply to Pops78]

Protons can penetrate to any depth. Use the neurology consult.

[Pops78 in reply to Tall_Allen]

Thank you very much!

[cesces]

Why would not a stiff focused hit of sbrt radiation not kill or at least stunt it?

If you cant see Khon, try to see someone on his team along with an sbrt specialist. And per TA a neurologist.

Mayo is really good at cross discipline. They might be one of the few places around where you can get this to happen.

If you get his team to look at you, and you are an interesting case, they will discuss you with him.

Just try to get in the door there with his "team".

[Pops78 in reply to cesces]

Sounds like it can take awhile and not sure we should wait? But thanks for the good advice

[cesces in reply to Pops78]

measure twice, cut once

and don't rely on only one doc, get multiple second opinions

If you talk to only one doc, they will just never explain everything to you

Thry just won't

[Pops78 in reply to cesces]

True that!! So hard to get any answers except from the neurosurgeon. He actually called from his car going home after reading my email and we've never seen him!

[MateoBeach]

You have APC metastatic to bone. The sacrum lesion must have the features of a bone metastasis. If so then treat accordingly with RT per advice of RO. If doubt about it persists then get high res MRI to clarify.

“Common things are common”, such as in bone mets in PC (unfortunately). Chordoma is rare and very unlikely, absent symptoms such as numbness around anus or loss of rectal/urinary control. Go with your RO’s advice.

[Pops78 in reply to MateoBeach]

Thank you. Spoke with a neurosurgeon who treats Chordoma and he says it is not that, wrong symptoms but says if I send him the imaging, he will look over if we want. He doesn't see why Onc wants a biopsy since Radiology said metastsis? Another concern of mine is they are using a regular needle rather than one that is encased to reduce seeding (spreading) for the biopsy. Can't believe one of Houston's biggest hospitals would not use the Trocar needle?