Thanks Tanya. My dad has a very rare cancer called adenoid cystic carcinoma. It does not travel through the lymph system, but along nerve routes, invading the coverings around the nerves as it goes. It usually begins in the major or minor salivary glands of the head and neck, and basically invades the nerves and tissue of that area. When it metastisisees it usually does so in the lungs and liver. My dad's has spread to those areas, along with his spine and hip. Those areas aren't causing him any problem at all, fortunately. People can live quite a while with it in the lungs and liver. It is very unpredictable - sometimes a person can be cancer free for 15 years and then it is found again in the lungs. It can go dormant, or come back with a vengance, and that's the case with my dad. He had a spot on the roof of his mouth 3 years ago, and had surgery and radiation. Unfortunately, he didn't see a specialist for this type of cancer, and they didn't treat it aggressively enough. He should have had a body scan 3 years ago and didn't. This summer his face started to go numb and his lymph node swelled up. A biopsy on the roof of his mouth showed cancer, and a scan of his head showed it had taken over the right side of his face - jaw, hard palate, sinus, septum. Initially they were going to perform surgery and radiation and remove it all, requiring a year long recovery. But when they did a body scan they found the rest. They determined they would shrink the cancer in his face and hip since those were the only areas bothering him. Of course they had to go through all the approvals and mappings and more tests, and by the time they got to his face it was Nov., and it had grown rapidly, causing him to lose his vision in his right eye, invading the nerves and causing extreme swelling and pain. The cyberknife radiation they used did shrink it considerably, for about 3 weeks. Now it looks worse than before, although the tumor itself isn't as painful as it was. Now he's receiving external beam radiation twice a day for 30 days, and the pain is from the burning and blistering it is doing to the inside of his mouth and throat. He cannot swallow pain pills and is on liquid vicadin. They finally gave him IV therapy when my brother called the Dr. because he's dropped to 115 lbs. Supposedly they are going to give him a feeding tube. These are things we asked for in Nov. My dad isn't very proactive, and of course now in his condition I don't think he could be if he wanted to. My brother is doing all he can, but his schedule limits him. My dad's girlfriend is very helpful but not very forceful.
So my younger sister and I are headed out to see if we can be the squeeky wheel that will be heard. It's very hard being all of the way across the country (I'm in NC, he's in CA and my sis is in PA). We would've gone right away, but we found out about my husband's cancer 3 days after we found out about my dad's, and initially we really thought they were going to be able to get my dad's condition under control.
One thing I've learned from this situation is that you have to get as much info as possible, ask every imaginable question, and be an advocate for your own health. We've alreay told the Dr. that if Jeff's PSA is still high we want every possible scan/imaging test we can have before we start radiation. We won't be taken by surprise again, if we can help it. This site has really helped me to know what kinds of things I should be asking the Dr. The first few visits I didn't say much. Once I found this site I went in with a page of questions I'd written down!.
I see by your signature that you are still deciding what course of action you will take. You should be able to get a lot of insight from the folks on this site. They are wonderful.
THanks for your prayers, hopefully I will have good news to report on both my dad and Jeff -
becky
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007