Ok - tonight's lesson, the Oncotype DX. The Oncotype DX ® is a diagnostic assay that quantifies the likelihood of breast cancer recurrence in women with newly diagnosed, early stage breast cancer. In addition to predicting distant disease recurrence, Oncotype DX also assesses the benefit from chemotherapy. It uses formalin-fixed, paraffin-embedded tumor tissue to analyze the expression of a panel of 21 genes and the results are provided as a Recurrence Score (0-100). Right now insurance only covers this test in women who are early stage (1 or 2) and are hormone positive and node negative. Hey - that's me! Which is good since the test costs close to $5,000. Yikes! Seriously I had better get a free T-shirt before this is all over. I am paying for a lot of new boats for these doctors/pharmaceutical companies.
Angel Nancy first mentioned this test to me not long after surgery and she made sure that they sent out for this test. The trick is to have a low low number - less than 15 would be nice. This means that the cancer is not a fast grower which translates to a smaller chance of having cancer cells spread and also means that the cells are such slow growers that chemo really does not give much of a benefit in destroying any cells that might have spread. I was kind of hoping my score would be low enough to have my oncologist not recommend chemo but alas it was not to be. At the last appointment while he said he was fine with waiting for the test results before starting chemo he thinks I will get an intermediate score and even if by chance it does come back low with the other characteristics of my tumor he is still going to recommend chemo. I should have the scores back on the 13th in time for my appointment on the 14th. I have decided to go with whatever my oncologist (and every other doctor I have talked to seems to agree with him) recommends. Maybe though his decision will change when he finds out my cancer cells are the slowest growers ever and my tumor took 30 years to get to that size! Yep I've had cancer since I was 10! Let that be a lesson to you youngins out there - don't be like me - eat you veggies~!
One thing I just thought of - the request for this test was made close to two weeks after my surgery - they needed tumor tissue to analyze. Yuck - where the heck are they keeping my tumor tissue!?>!?!>! Wonder if I can get some to keep in a jar! Remember last month when I was showing everyone my wisdom tooth I had taken out - this would be way more fun to show people. "Guess what this is?"
Have I mentioned that I named my tumor "smacky duck"? I thought "smacky" was no more but she's still out there somewhere or at least some of her.
I am still lousy at telling people about this. I've just started to blurt it out - no warning - "I've got cancer". Sorry to all those whom I traumatized with my blunt announcement. Anyone have any hints on how to tell people? I'd prefer that I'd not be known as cancer girl but I figure it will be easier on all if I give folks a head's up before I show up bald. It's going to be hard enough from my end but just think about it from my unsuspecting co-worker's point of view. Someone you see everyday all of a sudden has no hair - what do you say? How do you not swallow you tongue and how do you not stare? I'm all about watching people's reactions in funny uncomfortable situations but this one is too mean even for me.
Why the heck with all of this (by this I'm thinking pain, chance of death, the sending away of lots of $, putting my life on hold for seven months, the hours of driving, watching of my loved one with tears in their eyes, etc.) does baldness have to be one of the symptoms of chemo? Sigh. I keep thinking I'll just go au natural but to avoid scaring young children I might have to invest in a wig. Actually, the cancer society here has a used wig depot -which seems a little creepy but it makes sense. If I do get a wig when I'm done with it I will never want to see it again and would like to think it will help someone else out. So, I don't know maybe a kicky red haired bob. Then today I saw a girl with a really cool bandanna but then she had hair so it might not look as good on me. I do have some great ball caps though. I said that when I moved here I was going to start wearing hats - here's my chance. I am going to do something way awesome for Halloween though! Give me some ideas - pirate is always good but over done. I could draw a pirate on the back of my head and walk around backwards - now that's a good one!
Sad pathetic note - can't believe I'm admitting this. I took some great pics of my hair last night so I can remember us like we were - while we are still together and happy. New theme song India.Arie's "I Am Not My Hair".
You know though - it's not so much the losing of my hair - I actually think it will be kind of interesting to be bald (plus I've always hated my straight hair and it might come back curly) and reading the other side affects of chemo it will be the least of my worries once we get to that point. It's what others are going to think of me that I am freaking out about. No way will I be able to hide what I'm going through. I've had some friends seriously offer to shave their heads with me - I think that is awesome but one of the absolutetly dumbest things I have ever heard. You know who you are and trust me I would never in a million years do the same for you! So, keep your beautiful locks and tear off a fingernail or two for me instead! Yep - another fun chemo side affect, your nails crack and fall off....
OK - I know I said I'd post reasons why life it good. I'm still working on my list. I had a dear friend ask me to finish my earlier post "these cancer cells are messing with the wrong lady". She writes I encourage you to keep going... TELL ME WHY... WHY do those cancer cells not know what kind of woman they are messing with????? What kind of woman are ya, huh? Why do you want to live? Why do you want to survive? Do you deserve that? Huh? Why?????????? Because, believe me, that is exactly what those cells are screaming out inside of you for you to answer.... so let me have it... I want to know, in bleeding, screaming, shining vivacious color for all the world to hear.... WHY ARE YOU GOING TO CHOOSE LIFE????? She sent those questions on July 29th. I still don't have any answers for her. I'm working on this list too...............
5 comments:
Seems like you are becoming a cancer expert out of necessity! How can it be that confusing? Bottom line, you are going to fight through this because that is how we were raised - don't take the easy way out of anything!
Count me as one who would consider shaving, er, cutting my hair really short in support of you. I'm not excited about it, but if you're being brave going through all the other crap, the least I can do is make you feel a little less alone in your journey. Yes, we'll both cry at the beginning but then we'll laugh and cry and laugh some more. Can't wait to visit you!
Okay.. so the head shaving is out. Damn. That's probably good.. I was concerned there'd be little rolls at the base of my skull and I'd look like a caterpillar. How do you feel about tattoos instead? Is 'I Heart Lin' over the top? Whatever encourages you or makes you think you've got the goofiest friends on earth, by god, I'll do it!
Hey Friend,
Welcome to medical school! Hoe did the pic line go? If it bothers you keep some heat on it. Make sure whoever uses it is very sterile. Don't be afraid to be a little bossy cause sometimes the nurses get lazy. So just make sure the always use alcohol. You will actually love having the line it will make life much easier.
You probably already have this but if not ask the Dr about Zofran! It will be your new best friend. Also ask about magic mouthwash. It will help if you get any mouth sores! I just want you to know I am thinking of you often! When my health permits I might see if Heather wants to take a drive to see you. I will not just pop in though. Will call first and see how you are. Don't hesitate to call Roz if you have any questions. She said she woulld be happy to talk to you. Hang in there friend and let me know if I can do anything for you!! Love you tons, Shelli
Janet Lynn don't make me come over there and kick your butt - you even think about cutting your hair and I'll be all out of lollipops~!
I Heart Zombies - you know you are the wind beneath my wings and I already know deep down that my friends are the goofiest of all. I miss you most Scarecrow!
Oh Shell - I am going to need all of your wisdom in all this _ I absolutely hate that you walked and continue to walk this path before me. Would love to see you and Heather anytime! Just keep the Grand Canyon on your right and I'm to the left.
Love you all!
Regarding your Aug 2 post:
You seem to have misunderstood your oncologist. In the TAC vs TC clinical trial, TAC is the control group. Six cycles of Taxotere/Adriamycin/Cyclophosphamide (three weeks each) is currently the accepted adjuvant chemo for breast cancer (node positive, etc, etc...) Adriamycin (the Red Devil) is known to cause heart problems, and also is a leukemia risk. The purpose of the trial is to see if six cycles of Taxotere/Cyclophosphamide is good enough. A decade ago, four cycles of AC was the standard. At that time the AC vs TC trial was started, which (after many years) showed that four cycle of TC were better than four cycles of AC. But before those results came out, six cycles of TAC became standard (argh!), hence the new trial. You might want to check with your oncologist to see what drugs are in store for you. A very dear friend of mine signed up for the TAC vs TC trial and was randomly assigned TC (whew!) So far (day four of first cycle) her only complaint is metallic taste--everything tastes bad. No hair loss yet, but that usually doesn't happen until the second or third cycle. 17 weeks to go...
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