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Posted

Does anyone know if this is fatal? painful? I believe my mom has this and she is in hospice right now. There will be no tests or treatment for it. I am wondering if this syndrome can speed up the dying process?

I worry that it is painful for her. Her head and neck are huge and also one arm is swelling now.

The hospice people only tell me that "we never know" crap. I am sure they have a pretty good guess! I just need for them to give me a general, non sugar coated idea of what vena cava is! Everything with Hospice is syrupy and much too sweet. I like bluntness and facts. Thanks for listening.

Thanks for any help

Kelli

Posted

Kelli-

I can't answer all of what you're asking but can tell you how John has dealt with it. John's vena cava is completely blocked - and he is still here. The veins made a new path to flow the blood back to the heart (I think) via the inferior vena cava. Since your mom's swelling came on so suddenly I would assume that the tumor has grown so quickly the blood hasn't found a new path yet. If you look at her skin, you should see some tiny blood vessels forming that are carrying blood away. Are you sure she can't have treatment for this in hospice care? It is not for the cancer per se-- more for the blockage. I don't know about the pain, John was real uncomfortable but his swelling never got to the extent your mom's has. I hope this helps a little.

Rochelle

Posted

SVC syndrome was my first symptom and I'd had it for a couple weeks before being diagnosed with SCLC. I didn't have any head or neck pain at all.

We had been on a vacation car trip for a couple weeks and I was experiencing back, neck and shoulder pains while driving. I was taking Aleve for relief and had occasionally noticed how my neck had begun swelling. Assuming it just was a reaction to the Aleve I quit taking it.

I should also also point out that around this same time I started developing what I called "spider veins" all over my chest. My veins were turning blue, just like varicose veins. I'd done some Internet diagnosis and concluded it was part of the normal aging process. I later found out how wrong I was. They were another indicator of SVC.

Once we arrived back home things just sort of developed over a couple days and I ended up being diagnosed with SVCS in the ER of our major local hospital. The rest of that story is history.

Back to your question though, I had no pain nor discomfort with SVC.

Posted

Kelli,

My dad had superior vena cava syndrome, and it was because of this that he needed treatment immediately. We were told that untreated he would have survived about 2 months because of the increase in size of the tumor and the fact that it was cutting off that blood supply. Dad too had a swelling that was unbelievable, and they say it was from the blood supply being cut off because of the tumor. Everything I know about this says that this is a pretty serious deal, and pretty scary. Once dad's chemo started working, the tumor shrunk, he lost the swelling, and svcs went away.

Stay strong. God bless you!

Jen

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