Thursday, August 28, 2008

The ball dropped!!

I knew it was too good to be true. Everything was going too smoothly to not have a wrench
thrown in here somewhere. Let me try to explain this.....stay with me here....this is a long post.

First let me say that I do like my oncologist. He is a cute little round man with white hair and a white beard. Dan thought it would be nice to be receiving cancer treatment from Santa Claus! Too bad his big, red velvet bag will only have toxic drugs for me. I'd prefer a good book, or at least a nice toy!

Here's where the wrench appears.....I have two types of cancer (I already knew this). One is the original DCIS (Ductal carcinoma In Situ) which is non-invasive and the easiest to treat. This means that in that tumor area, the cancer is limited to the milk duct itself. I also have IDC (Invasive Ductal Carcinoma) in another separate area which means that the cancer has actually left the milk duct and entered into the surrounding breast tissue. This is a different ball game.
There a few factors that help to determine my personal prognosis with this disease. Here are some of the factors:

1. Type of cancer
2. Size of tumor
3. Grade of tumor
4. Lymph node involvement
5. Margins
6. Vascular involvement
7. Metastases
8. Hormone receptors
9. Kinetic DNA (agressiveness)
10. Her2/Neu

According to my pathology...we already know what type of cancer I have (see above) and the size (2.7cm x 2.0 cm x 2.1 cm). This is in the moderate range and therefore puts my tumor at a Grade 2 because it is greater than 1.0 cm but less than 5.0 cm. I had no lymph node involvement (37 were removed...ouch!!!). My margins were clear and that means that there was more than 1 cm of tissue around the actual tumor that was free of cancer. I had no vascular involvement and to my knowledge...I don't have any metastatic disease anywhere (more on that later). The DNA was good in so far as it shows slow growth and that I have a low risk for recurrence. Yippy.
I thought that I was hormone receptor positive. This means that my tumor thrives on the estrogen that my body produces. This would have been a good thing because there are drugs (like Tamoxifen) that block the estrogen from the cancer cells. However, that information was regarding only the one part of the tumor that is DCIS...the non invasive kind. Statistically, DCIS is hormone receptor positive 80% of the time. Unfortunately....they did NOT do this test on the invasive portion of the tumor. This is a totally separate type of cancer and therefore I cannot assume just because the one is positive...the other will be too. If it is hormone receptor negative...this is not a good thing. It doesn't necessarily mean that I will die tomorrow...but it does mean that one type of ammunition to fight the cancer is not available to me. Rats. My oncologist said he spoke with the pathologist about this today and they will do that test tonight and should have the results sometime next week. More waiting!!!

The Her2/Neu has to do with certain proteins and gene amplifications. Very confusing. All I know for sure is that high levels of this protein indicates that there is poorer survival and also this can make the cancer less responsive to certain types of chemo although they can be treated with something called Herceptin but I don't know much about it. The other part of the wrench here is that they also neglected to test my tumor for this too.

So....all of this to say that I am without two very vital pieces of this puzzle when I thought my puzzle was complete. The outcome here is directly related to my long term survival and this scares the "you know what" out of me.
On a slightly positive note.....he says I don't have to have radiation.

One last the next two weeks I need to have the following:

1. Port-a-Cath inserted into my right chest area under the skin which will remain there for one full year following the completion of chemotherapy. (Good bye drains....hello portacath).
2. Nuclear Medicine full body bone scan
3. Cat Scan (with contrast) of my chest, pelvis and abdomen
4. Muga Scan (I think this checks to see if my heart is strong enough for the effects of the chemo).

Needless to say, I'm a nervous wreck about all those tests...I mean, technically, I could have cancer all over my body and not even know it. I swear I will be totally gray from worry before my hair falls out!!

I'm walking around in a daze. The reality of it all has hit me yet again. This isn't something than I can fool around with. I'm fighting for my life here and I'm not sure I can handle it. I don't know what to think, how to be, or what to do. All I know is that today...for this minute, I feel very alone. I know there are tons of people praying for me everyday and I'm so thankful...but today, I'm having a "Garden of Gethsemane" moment. I don't want this cup...


Suzanne said...

Nancy - i am a friend of a friend of your husbands. She told me about you. My situation was almost identical to yours. the only difference was the size of my tumor was smaller. I am three years cancer free. You are going to be fine. I want to talk or email you. Please let me know your email or phone number.

Frank said...

Wow. You are going to have a medical degree by the time this is done. Try to hang in there. I read that you don't have a bad prognosis. You just don't know what the prognosis is yet. Sounds like Baptist dropped the ball by not ordering all of the tests right the first time. I still don't understand why they are sure you need chemo. when the margin was clean and all the lymph nodes came back negative. I'd think they'd want to see the result of the body scan first prior to starting chemo. That's a lot to go through if you don't know that you have a problem remaining. Hang in there!


Nancy said...


I would love to touch base with you. My email is
Email me anytime. Or...drop me your email and I'll contact you, whatever is easier for you.