Thank God it's my birthday!! I want 39 more of them!! (at least). I went to Dr. Hansen, Radiation Oncologist, today. I did not get exactly the news I had anticipated. He did his examination and said the tumor has definitely shrunk some even from last time (2 months ago) but that it's probably done shrinking (it will only usually shrink for 1-3 months after radiation). He said while he can do more radiation, he would recommend I go for surgery at this point. He also said he could completely shrink the tumor with radiation, but that would almost certainly cause anal incontinence and could cause impotence. These are exactly the symptoms we are afraid of with surgery. A rock and a hard place...
His opinion was that the surgery will put the non-recurrence rate at about 90% while doing a bit more radiation and then doing more chemotherapy would only give a 65% chance of non-recurrence. Also, if what is there is indeed cancerous, there is a 0% chance of non-recurrence.
He is going to put me in contact with another colorectal surgeon to get a 2nd opinion about the surgery. I'm also going to see Dr. Crocenzi (medical oncologist, Dani Arthur's boss) on June 9 to see what he says. I have a CT scan scheduled for June 2. This will show activity of cells. If we only see the one "hot spot" that's good, and would mean the cancer has most likely not spread, but if there are others, we would probably opt out of surgery, because generally that would mean the cancer has metastacized, and surgery won't control it.
There is more data to gather and more people to chime in on various topics.
Please pray we will have a clear cut answer (pun intended) by mid-June that we feel comfortable with.
ENJOY THE BEAUTIFUL WEATHER GOD GAVE US TO CELEBRATE MY BIRTHDAY WEEKEND!!
Friday, May 22, 2009
Wednesday, May 13, 2009
The Good, The Bad, and The Ugly
We saw the Medical Oncologist yesterday for the first time in 6-weeks. He was a bit surprised that I hadn't had surgery yet, but after I explained to him how I wanted to give some alternative methods a chance, and that I'm not real hip on the potential side effects of the surgery, he indicated that possibly surgery is not the right choice in my case.
He said because of my size, and the fact that we're not 100% certain the cancer is contained inside the rectum and potential complications of surgery, he seems torn between doing surgery and not doing surgery in my case. Generally, he would always recommend surgery at this point, but since there are other circumstances at play, he "is OK with me not having surgery."
He said because I am having second thoughts about the surgery, he thinks we ought to consider the other option which is to do cleanup with radiation and chemo.
The way I understand the percentages of recurrence in his estimation are this:
1) If we just do diet change and general lifestyle modification at this point and nothing else, I probably have somewhere in the 80% chance range of not having a recurrence.
2) If I go for another "cleanup" round of radiation and chemo, my chances go up 5% or so. So we're probably around 85%. While this may have tough short-term side effects, there are not as many potential long-term side effects. There is some potential for regional nerve damage and other side effects similar to if you had a burn in the region.
3) If I go for surgery, the percentage of non-recurrence goes up to the 85-90% range, but would require a permanent colostomy, and would have around a 10-20% chance of permanent impotence and/or bladder control loss.
He said if we are going to do surgery, it should be done ASAP, or within the next 4 weeks because at this stage the longer we wait the more trouble there will be from scaring.
I am leaning heavily toward the first two options. Really the only downside to crossing off #3 would be if later on I have recurrence and regret that I did not have the surgery. However, on the flip side of that, I could have the surgery, they could remove the tumor (and my rectum and anus), do the pathology and not find any more cancer. That would really make me regret :)
In the weeks to come, I will be discussing these options with my 2nd opinion Medical Oncologist, my Radiation Oncologist, and my Naturopathic Doctor (my primary care physician). We are in a "data mining" operation right now and will not make a final decision until we have enough information to make a decision we can be comfortable with.
There is no black-and-white answer here. I just have to make a decision I feel most comfortable with and proceed from there.
As always, your thoughts, prayers, and encouragement are greatly appreciated.
He said because of my size, and the fact that we're not 100% certain the cancer is contained inside the rectum and potential complications of surgery, he seems torn between doing surgery and not doing surgery in my case. Generally, he would always recommend surgery at this point, but since there are other circumstances at play, he "is OK with me not having surgery."
He said because I am having second thoughts about the surgery, he thinks we ought to consider the other option which is to do cleanup with radiation and chemo.
The way I understand the percentages of recurrence in his estimation are this:
1) If we just do diet change and general lifestyle modification at this point and nothing else, I probably have somewhere in the 80% chance range of not having a recurrence.
2) If I go for another "cleanup" round of radiation and chemo, my chances go up 5% or so. So we're probably around 85%. While this may have tough short-term side effects, there are not as many potential long-term side effects. There is some potential for regional nerve damage and other side effects similar to if you had a burn in the region.
3) If I go for surgery, the percentage of non-recurrence goes up to the 85-90% range, but would require a permanent colostomy, and would have around a 10-20% chance of permanent impotence and/or bladder control loss.
He said if we are going to do surgery, it should be done ASAP, or within the next 4 weeks because at this stage the longer we wait the more trouble there will be from scaring.
I am leaning heavily toward the first two options. Really the only downside to crossing off #3 would be if later on I have recurrence and regret that I did not have the surgery. However, on the flip side of that, I could have the surgery, they could remove the tumor (and my rectum and anus), do the pathology and not find any more cancer. That would really make me regret :)
In the weeks to come, I will be discussing these options with my 2nd opinion Medical Oncologist, my Radiation Oncologist, and my Naturopathic Doctor (my primary care physician). We are in a "data mining" operation right now and will not make a final decision until we have enough information to make a decision we can be comfortable with.
There is no black-and-white answer here. I just have to make a decision I feel most comfortable with and proceed from there.
As always, your thoughts, prayers, and encouragement are greatly appreciated.
Monday, May 11, 2009
Move More!
So, now that we've kinda got the eating thing down, and we are doing very well at it, it's time I get to the exercise thing!
I don't always have the energy to exercise, but when I do, I need to JUST DO IT!
We have a stationary bike, and we have lots of yard work :) (right, Jeanah)
We see Dr. Chang, the Medical Oncologist tomorrow for a follow up. Last we talked with him, we were still planning surgery (6 weeks ago). Should be interesting to see what he has to say about the path we've chosen to this point! I'll let ya'll know how it goes! We're hoping there is a non-invasive way he can test to compare how much cancer I have in my body...
I don't always have the energy to exercise, but when I do, I need to JUST DO IT!
We have a stationary bike, and we have lots of yard work :) (right, Jeanah)
We see Dr. Chang, the Medical Oncologist tomorrow for a follow up. Last we talked with him, we were still planning surgery (6 weeks ago). Should be interesting to see what he has to say about the path we've chosen to this point! I'll let ya'll know how it goes! We're hoping there is a non-invasive way he can test to compare how much cancer I have in my body...
Tuesday, May 5, 2009
No News is Good News (they say)
...whoever "they" are...I hope "they" are right. We have just been pluggin' along with our nutritional approach and the Budwig protocol these last few weeks. It's going pretty well. We've learned to eat more simply and are learning some new things that help us get the nutrition we need without the stuff that can cause inflamation.
A long with the nutrition and Budwig, I am also taking A LOT of suplemental pills. I just counted them and, well, just for the morning, it's 36 pills. That's a considerable amount to swallow!
I'm feeling pretty well these days. Getting my strength back and feeling better each day. The last 2 weeks I battled a cold, but I think that's over and done with. My immune system is supposedly getting stronger. Hopefully it's strong enough to ward off any additional cancer stuff and even to destroy the cancer that currently exists along with the Budwig destroying the tumor as well.
Love ya'll!
A long with the nutrition and Budwig, I am also taking A LOT of suplemental pills. I just counted them and, well, just for the morning, it's 36 pills. That's a considerable amount to swallow!
I'm feeling pretty well these days. Getting my strength back and feeling better each day. The last 2 weeks I battled a cold, but I think that's over and done with. My immune system is supposedly getting stronger. Hopefully it's strong enough to ward off any additional cancer stuff and even to destroy the cancer that currently exists along with the Budwig destroying the tumor as well.
Love ya'll!
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