Story time!This started out as a small update, and got bigger as I started writing. I really need your help on this one. All of you. If you read this, I would really appreciate it if you could please weigh in with an opinion.
Pat from the Feather River Hospital Cancer Center called me this morning. She let me know that Dr. Pisani's office sent over all of my records last night, and the radiation oncologist and radiation nurse were looking over it all today in preparation for scheduling my initial consultation.
Pat also asked me if Dr. Pisani had discussed medical oncology with me at all, aka chemo. I told her my story of how Pisani had said "no chemo" and his PA Bella had basically said that it was still an option being discussed.
Pat said that they were having their medical oncologist look over my file as well, and would like me to have a consultation with him in addition to the radiation group. *ulp*
Of course, I still have no idea if this means I'm likely to have chemo or not. My interpretation of Pat's remarks is that their people seem to think it might be a good idea. I told her the same thing I've told Pisani and everyone else--that if it's going to make a difference in whether I live or die in the immediate future, I will do it.
Frankly, I don't actually even understand WHO makes that decision. Does Dr. Pisani, as my surgeon, and the thus far the point person on my real treatment team make those decisions? Or, do the radiation oncologist and the medical oncologist make those decisions based on what they see when they review my files?
What concerns me the most is that before surgery, Pisani said this was "completely surgical," with no need for radiation or chemo. Now, it seems that has changed, obviously.
So now we reach another really important and really frightening questions: What are my criteria (for lack of a better word) for deciding if I'm going to do it or not, if the doctors recommend it?
After surgery, Dr. Pisani explained that I had about a 15% chance of the cancer recurring. He said that if I have radiation, that chance goes down to mabye 5%. Ok, no-brainer, I'll get the radiation.
SO, if the radiation takes me down to 5%, how many more percentage points does it take to say that chemo is a good idea? Is chemo worth it (with all its nasty side effects and such) if it takes my chance down to 4.5%? 4? 3? 2? If it gets me down to 1%, we're back at the no-brainer point, but above that I'm going to have a hard decision to make.
Very hard. Just having a discussion about it with Lloyd actually sent me up for the Xanax. Lloyd feels like if it were him, 5% is low enough for a chance. I really don't know what my threshold is. I mean, there are some hellish side effects.
Ultimately, the decision is going to be mine, but I am really interested in what my friends and family think. Lloyd says if it were him, he would say no to the chemo. He is also afraid my system would really not be able to recover from it.
What do YOU think?
Would you do it, if you were in this situation? My recurrance possibility percentage could drop anywhere from 0-5% if I have the chemo.
PLEASE voice your opinion, no matter what it is by leaving a comment or emailing me. I may even try to set up a poll on here, if I can figure out how that works. I can't stress enough how much I really need your input.
Now I think I really need a nap.
Thank you, everyone.
5 comments:
The final decision obviously rests with you but given your immune system/health status, I think it seems somewhat straightforward that chemo is not an option if it can be avoided. Chemo wreaks havoc on strong people, which may not describe you in the physical sense right now. If chemo reduces recurrence to >1%, you seem prepared to do it. If not that low, how drastically do you want to impact your life and functionality given where you are currently at?
(1) print this entry and bring it to your consultation with all the docs, have the docs read it and discuss it.
(2)if you are working on such small percentages then you also need to know what the chances of you getting killed/maimed in a car accident driving to/from chemo. If you do chemo to take 2% away but have a 5% chance of getting into a serious car accident then it really isn't doing you any good is it? My point is - this is your life, quality and quantity - but it is not a numbers game; don't try to make it an excuse for a decision.
(3)your worrying about something that you don't know if you need to worry about it yet.
I think that you should just take one step at a time. Will radiation work first? If that won't cause you much discomfort, then try that first. I would try all avenues to see if those work before going through Chemo. I also thought that your body has to be at a certain level of healthyness BEFORE you can even start chemo. Seeing how hard it was for you to recover from your surgery, I can't imagine having to go through chemo, too. I would get all the facts first and try any other solution before chemo. Good Luck and let us know if you need anything. -Jamie
Hey there: My percentage is also 5%. Considering everything, I was OK with that percentage. With all of your other health issues, I would say give your body a break and don't do the chemo. We will always have cancerhead, we will always wonder if we are going to be the 5%, but we also need to trust our bodies and our instincts. Take care of yourself! Love ya!
They turned the power off at 7 a.m. to do repairs and it just came back on, so this is the first I've seen of this.
First, do what Darcy said. Print this out and use it as a cheat sheet when you see the doctor. The doctors at Feather River will be the ones directing your treatment. I've never known a surgeon yet who went beyond the surgical recovery period. They all hand the rest of treatment off to another specialist.
Second, and maybe most important, you need to get the doctors at Feather River to outline precisely why this went from completely surgical to radiation and chemo. Was there something in the path report that made them decide to take that step? Was it the specific type of cancer it turned out to be? Make them give you clear, concise and understandable reasons why all this has changed.
We think it would be best is not a reason, it's doctors patting you on the head and treating you like a child. Been there, done that and bit the bastard's hand. Make it perfectly clear you're not agreeing to anything without facts and medically valid reasons.
Realistically, you can't make a decision without knowing all of this. Don't even try.
Also? The type of chemo and the length of treatment has a lot to do with side effects. Make them give you all that information as well. Six months is a hell of a lot different than six weeks. Some treatments are hell on earth, some newer ones are unpleasant but the cure isn't worse than the small chance the cancer will come back.
Gather the facts, weigh cost vs benefit, and then decide.
Love you
Mom
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