Good news travels slowly
March 6 , 2008 - Thursday

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hi All- Just wanted to give you the latest news re my cancer. It's all good news, at least from a medical standpoint. I have to say it certainly pays to question the wisdom of the doctors and the accuracy of tests before letting them bamboozle you into any major surgery. A few short weeks ago I was being told by a well regarded oncology surgeon for a highly respected cancer center that I needed radical surgery that would include removing a section of my liver, my entire rectum and anus, and a good portion of my colon, leaving me with a permanent colostomy. This was a major turnaround from what I had been told all along and from the news I was expecting. I was more determined than ever at that point to get additional opinions and demand more tests, since I never had even had a PET scan or MRI. I asked for a second surgical opinion and a second oncology opinion, since my oncologist disagreed with the assessment of the surgeon. I saw a surgeon from UCLA who disagreed with the surgeon I had seen from City of Hope ( who had gone so far as to actually schedule me for surgery.) The next week I saw a new oncologist from UCLA who basically "rubber stamped" the opinion of the surgeon from City of Hope. Well that made it two against two before MY vote was thrown in, and you can probably figure out where I stood. My regular oncologist referred me to another doctor to get a new test - a special type of colonoscopy that included an ultrasound This test would be as good as a PET scan in identifying how far the cancer had spread, if there was any lymph node involvement, and even the depth of the cancer. It was a test the UCLA surgeon said I should have had months ago, and certainly before I had any surgery. I had the test this past Thursday and the doctor came into recovery afterward and talked to me about the results. The test showed no spread of the cancer, no lymph node involvement, and that the cancer was not as deep as had been assumed. It was also clear there was NO liver involvement. He also said my blood tests were good. On Friday I went to see my oncologist with the results. He was, to put it mildly, very pleased. He wants me to have the surgery asap, but there will be no need for a permanent colostomy. As a matter of fact, I may not even need any follow up chemotherapy, as originally discussed, because things are so much better than some of the doctors had assumed. I expect to hear something early next week regarding the scheduling of the surgery. It will be at UCLA with the surgeon I saw there. I expect a rapid recovery and to be cancer free once it has been completed. I have no doubt that I have come this far, this well off because of the prayers of friends and family, my determination to fight this with all I have, refusing to surrender my care entirely to the medical professionals, and my daily intake of numerous supplements that have been shown to positively impact cancer, even though the medical profession in this country neither recognizes them nor is willing to even test them.

I've learned a lot of lessons during this battle. One of my goals now is to share my experience with others who may find themselves in a similar situation. I shudder to think where I would be this very moment had I just given in and trusted my fate entirely to the doctors and faith in there initial tests. I'm fortunate enough to be too hardheaded to allow that to happen, and determined enough to do all in my power to program a positive outcome every step of the way, and not allow apparent setbacks to deter me. I likewise shudder to think about how many people out there just figure "You're the doctor, I'm sure you must be right." I hope you are all well and thank you all for helping me through this. It ain't over yet, but things are looking better than ever. By the way, I wrote this on 2/26. I am STILL waiting for my surgery to be scheduled! Believe it or not, the PATIENT has to gather all the test results himself and get them to the surgeon before they can schedule the damn surgery. TICK TOCK!!!! So I have been on the phone daily and running all over SOCAL picking up and sending medical records. Does this seem like something that the cancer patient should have to do? All the doctors kept telling me I needed to have the surgery as soon as possible, and now all of a sudden I have to come up with all the test results on my own and keep bugging the various entities to send them or get them for me. Right now there is an envelope sitting on my dining room table with that cool "BIOHAZARD" label on it. It is the glass slides containing my cancer cells! I guess my question is just what the hell is my medical group doing for the money it is being paid by my insurance? Oh yeah, and they tell me that the pre-op tests that I had at the end of November may no longer be accepted by the surgeon because they are only "good' for 30 days. Like I keep saying, the fight with the doctors and insurance companies is harder than fighting the damn illness. I'll keep you posted as things progress further. Love to all.
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