Wednesday, October 1, 2008

sleepless night

I did not get much sleep last night. I am concerned about my chemo and making the right decision. I thought about it all night. I actually have three opinions, not just two. The first is from my oncologist.... my choice, with a 10% increase in my cure rate if I do the chemo. I have a 80% cure rate as of now and can improve it to 90%, the second is from my surgeon.... I was brought up in the "board meeting" with 3 oncologists and a few surgeons and doctors.... they recommend I do chemo since like I said last night, it is a systematic disease and it could have spread already and the chemo will kill any cells still in my body. But my question is ... Does it kill it? my mom did chemo and the cancer still came back! Many people do chemo and get cancer again. But then, I feel once they cut ya open it spreads anyway, not sure if that is the way to look at things. And then I have the opinion of my second opinion doctor ( which is a much bigger hospital.. St Joe's Medical Center) and that oncologist feels that chemo does not respond to this type of cancer. And then there is my friend Molly... her doctor feels that chemo does not work either... So now what???? Hopefully when I go to Karmos Cancer Center someone there will have experience with this type, (non of my doctors so far have had experience with it!) I need to make a decision.

3 comments:

Kristina said...

Stephanie,

Hello! My name is Kristina and I am also an ACC of the Breast Cancer Survivor. I was diagnosed in January of 2007. I found the lump myself during a routine self breast exam, then following a biopsy the Mayo Clinic confirmed that it was Adenoid Cystic Carcinoma. I live in Morristown, NJ and am a nurse at the hospital there. That is were I went for treatment. They did two lumpectomies in order to get clear margins then followed up with 6 weeks of radiation. I work on a surgical/trauma floor along with working in radiation and outpatient oncology in our cancer center. I was treated by surgeons and nurses that I am friends with and completely trust.

My doctors have only had experience with ACC in the head and neck but did extensive research on my type of cancer so as to give me the best treatment plan. I also got second opinions from another leading hospital in NJ that has also an extensive, experienced cancer center. I give you all this background so you understand where I am coming from when I say dont waste your time and damage your body any further with chemo. Not only have I had several oncologists, radiologist, surgeons all tell me that chemo has no effect on this type of cancer, what I have seen people go through with chemo I wonder even if it was advised with such small percentages would I chose it. It does more harm than good and the side effects can be permanent. I understand the doctors are dealing with an unknown and are afraid but that is a doctor mentality. To cover their own behinds. They are not the one going through the chemo and it has been proven to show that chemo has no effect on our type of cancer. Even if my cancer were to come back they would never advise chemo, unless it came back as some other type of cancer.

Check out the boards at the rare cancer website that Molly and I met on. Please think long and hard before you put yourself through more hardship for no reason. Find a doctor that has actually treated someone with ACC or have the doctors show you documented proof of their reasoning behind wanting you to have chemo.

Good luck, I wish you the best and know how hard these times for you are. You will get through and you will be strong again. Trust yourself and what your instincts are telling you, because in the end it is your body and you are the one going through this experience.

Sorry for the long comment I just dont want you to suffer more than you already have. This cancer thing is hard enough with all these different opinions.

Stay strong,

Kristna

Molly Brawley said...

Steph--I am so glad Kristina found you too! I just think you should ask your doctors for the research that shows ACC responding to chemo...there is none to show that chemo kills it, or even slows it down. I have read countless medical articles and can't find any cases of it working or even being recommended. If there were no bad side effects, I would say ok, no risk. I think the risk is too risky. On the RARE CANCER forum board that Kristina mentioned you will see that you are not the only one whose doctors recommended chemo but most,if not all, refused it.

i think what makes this difficult is that your doctors are recommending it. i know if my onco had recommended it I probably would have done it too because I am a rule follower. But not one doctor at the tumor board panel (40 plus MD's, including a geneticist, pathologist,etc) said i should have chemo. And to this day my onco says it does not work, and my other doctors (family, PS) say thank heavens you didn't have it because chemo is AWFUL.

NOW, if you do decide to do chemo, know that i will support you 100 percent because this is YOUR decision and yours alone. (unfortunately) I wish it was so much more definitive.

I am still curious about your path report. I am assuming you were triple negative, right?

Oh darlin, i am feeling your pain right now. Check out the rare cancer site (google "rare cancer forum") and read up in the ACC breast section. It really really helped me and led me to Kristina, who is my ACC angel!

I will try to email this weekend...I am here for you sister!

Molly

www.joywhitman.bloggerspot.com said...

STEPH, WHAT A GREAT SUPPORT GROUP YOU HAVE. HOW FORTUNATE TO HAVE TWO WOMAN WHO WENT THROUGH THIS WHEN IT IS SUCH A RARE CANCER. THIS IS WHAT I MEAN WHEN I SAY GOD IS HELPING YOU WITH YOUR DECESION THROUGH OTHER PEOPLE. ITS A HARD THING TO HAVE TO MAKE A CHOICE ON YOUR QWN, BY YOURSELF. BUT JUST KNOWING YOU HAVE FRIENDS WHO CARE AND LOVE YOU SO MUCH, CAN MAKE THE DECISION MUCH EASIER. MY SHOULDER IS ALWAYS HER FOR YOU TO LEAN ON AND YOU KNOW I WILL BE WITH YOU THROUGH THIS EVERY STEP OF THE WAY. GODS PLAN WILL ALWAYS BE BEST, AND I FEEL HES HELPING YOU THROUGH ALL THE PEOPLE WHO ARE CONCERNED AND CARE SO MUCH ABOUT YOUR WELL BEING...HANG IN THERE GIRLFRIEND....THIS TO SHALL PASS, TAKE ONE DAY AT A TIME AND THINK POSSITIVE, THE MIND DOES AFFECT THE WAY A BODY FEELS. IM PRAYING FOR YOU DAILY AND YOU WILL FIGHT THIS THING WITH GODS HELP AND WITH THE SUPPORT OF ALL YOUR LOVED ONES. XXXXXJOY