I'm just going to start by typing exactly the "findings" section from the most recent PET/CT scan...
Findings: Tracer distribution in the head and neck appears normal. Tracer distribution in the chest is also normal. No tracer avid pulmonary nodules are seen. Prominent lymph nodes are present in the mediastinum which are not metabolically active. There is heterogeneous uptake of tracer in the liver. Some of this is due to limited resolution secondary to the patient's body habitus. No definite focal abnormalities are seen. Again noted is a mass in the leftward and posterior wall of the rectum. The mass demonstrates increased tracer activity with maximal standardized uptake value of 8.7. This is significantly decreased from the prior study in which the SUV was 21.5. The size has also decreased from approximately 2.9 x 5.3 cm to 1.8 x 3.4 cm. No definite lymphadenopathy is evident in the abdomen or pelvis.
That is to say, sometimes doctors say things in strange ways...c'mon doc, just tell me I'm fat, OK :)
So, since 1/2/09 (the last PET scan...I've had CT scans since, but not PET) the SUV value has gone to almost 1/3 and the size of the inflamatory mass has shrunk to about 1/3 the size. This doesn't mean we're out of the woods yet, though, because the Oncologist says he likes to see the SUV under 2.5 and not be able to see the mass at all, but of course it could just be mostly scar tissue... He still recommends we discuss surgery with the surgeon, but he does not recommend any Chemo at this time because there is no spread and the Chemo is not as effective on the radiated mass because the blood vessels are severely compromised around it due to the radiation.
So, the options are: A) Have surgery to remove the tumor (basically the same risks as before) B) Wait 2 months and have another PET scan to see what the state of the tumor is at that time.
We are not taking this lightly and are definitely considering the options. Whatever we do, I am continuing with the Budwig and suplements. We also plan to send in for another HGC test in the Philippines.
Please pray for us as we make decisions that we would have wisdom to make the right decisions for me and us and that we would have grace to accept the outcome of the decisions whatever that may be.
God is good!
As always, feel free to ask me questions if you have them.
Tuesday, September 29, 2009
Tuesday, September 1, 2009
Learning to be (a) patient
My visit Monday with my Oncologist was a lesson in being (a) patient! I got there at 1:50 for my 2:00 appointment, got my blood drawn (they do this every visit) at 2:10, then waited until 3:00 until they put me in the exam room. At 3:40 the doctor came in...next time maybe I should just show up at 3:30...
We talked about the last CaT scan and he said there is no visible sign of cancer. However, this doesn't mean there isn't microscopic cell growth somewhere in my body.
He said it is tough to tell what the next step should be because their studies don't follow the path we've chosen. People in my situation who are part of a study go for surgery. Since we didn't follow the "normal protocol" the statistical numbers are fuzzier.
He said had I gone for surgery, he would suggest doing a 4-month round of Chemo where I go for Chemo for 2 days every 2 weeks for 8 cycles. He said that usually gives a 30-40% better chance of non-recurrence.
He said he doesn't know how he would work with Dr. Dramov (my Naturopathic doctor) because there just aren't the studies available in that genre of medicine (because the FDA doesn't back it and neither does Big Pharma).
Anyway, we will schedule another PET/CT scan in the next few weeks and then see Dr. Chang again the end of Septemeber. We need to make a decision whether to go through more Chemo or just to monitor at this point. Basically, if I decide to do more Chemo, I need to start sometime in October.
We will be researching the effects of the particular Chemo he suggests using and see if it sounds like a good idea at this point. Right now, I'm kinda 50/50 because I know some of the potential effects from reading before, but I didn't have any besides fatigue and diarhea before.
Please pray for us that we will have wisdom in this tough decision.
We talked about the last CaT scan and he said there is no visible sign of cancer. However, this doesn't mean there isn't microscopic cell growth somewhere in my body.
He said it is tough to tell what the next step should be because their studies don't follow the path we've chosen. People in my situation who are part of a study go for surgery. Since we didn't follow the "normal protocol" the statistical numbers are fuzzier.
He said had I gone for surgery, he would suggest doing a 4-month round of Chemo where I go for Chemo for 2 days every 2 weeks for 8 cycles. He said that usually gives a 30-40% better chance of non-recurrence.
He said he doesn't know how he would work with Dr. Dramov (my Naturopathic doctor) because there just aren't the studies available in that genre of medicine (because the FDA doesn't back it and neither does Big Pharma).
Anyway, we will schedule another PET/CT scan in the next few weeks and then see Dr. Chang again the end of Septemeber. We need to make a decision whether to go through more Chemo or just to monitor at this point. Basically, if I decide to do more Chemo, I need to start sometime in October.
We will be researching the effects of the particular Chemo he suggests using and see if it sounds like a good idea at this point. Right now, I'm kinda 50/50 because I know some of the potential effects from reading before, but I didn't have any besides fatigue and diarhea before.
Please pray for us that we will have wisdom in this tough decision.
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