My New Classification - STAGE IV-NED

I haven't posted for a while because I was too nervous about the PET scan, and then when I got the results of NED (No Evidence of Disease) on Thursday morning before chemo, I was almost too relieved to post. Putting it down in writing, while making it seem more permanent, also scares me. Several months ago, when a different cocktail made my tumors in the lymph nodes in my neck disappear, they popped right back up as soon as I got off the chemo to prepare for surgery. I just don't want this to be temporary too . . . I am totally bored of cancer. It was interesting, but honestly I am really over it.

For those who can't remember the difference between PET, CT, and MRI scans:

CT scans show structure by looking how fast dye is absorbed, but it looks at it structurally. I can see a tumor, but can't tell if it is benign or not, for example.

MRIs can tell the difference between diseased and healthy tissue. So if we know that you have a tumor in your breast, but want to see the exact shape and size and how far it has extended toward the chest wall, we give you an MRI.

PET scans are cool because they measure how active cells are. They can tell the difference between dead tissue and live tissue, and cancerous (very active cells) and non cancerous tumors. They can also do 3-D images.

They can only detect cancer cells that have amassed in over a millimeter thick, wide, square, whatever. For us non-metric people, a millimeter is about 1/17 of a dime. Still visible and tangible, but small.

However, having a PET scan show NED is important emotionally and physically in so many ways.

• This is the first good news I have received. I can actually tell people that I am getting better rather than saying, "I hope I am getting better."
  
• I can now start my clear PET scan calendar as of July 2, 2009 and say, I have been clear for 3 months, 2 years, 5 years, 10 years (now we are getting into hopeful territory!), 20 years. A lot of woman start this calendar from diagnosis, but I would feel much safer with the aggression of my tumor to start from the first clear PET.
• Something is working on me. Hopefully it is the Herceptin because I can get that long term (year or two!) while the Taxotere is a chemo therapy and reduced quality of life somewhat.
• I have time. To be honest, I didn't know how much time I was going to have if this thing kept spreading, but now, I know I am going to be around for a little while! You will be forced to keep reading this blog for a bit!
  

However, this isn't the beginning of the end of treatment, as my doctor explained to me. We have to stop the cancer from coming back.

The information I am posting next is NOT meant to be a downer or depressing. It is a small sample of 100 woman (which medically, no one would take seriously), with nothing about age, attitude, life style changes factored in. However, it does show that we are just beginning.

There was a study published looking at 100 woman exactly like me, Stage IV-NED:

10% of women with metastatic breast cancer have a recurrence of their disease as an isolated lesion (local, regional, or distant). These are patients with stage IV breast cancer with no evidence of disease, or stage IV-NED. So I have a 1/10 chance based on this study of getting cancer again.

Patients and methods: Ninety-six patients with isolated recurrence of stage IV breast cancer were analyzed retrospectively. Prognostic factors were analyzed and correlated with disease-free survival (DFS) (this is the group I want to be in!) and overall survival (OS).

Results: Five-year DFS and OS for the whole group were 29% and 49% respectively. DFS was also significantly better for patients receiving systemic therapy after local treatment (31% vs. 19%). Remember, these statistics ONLY APPLY IF I HAVE A RECURRENCE.

Conclusion: Patients with stage IV-NED have poor prognosis due to early development of metastatic disease. Absence of axillary nodal involvement at the time of mastectomy and systemic therapy following local management is associated with improved DFS and OS (I did have axillary nodal involvement, boo). These results suggest that systemic therapy after local treatment in stage IV-NED is indicated (which is what I am getting, lots and lots more chemo!).

So, my goal is NOT to get cancer again cause then statistically I am in the shithouse and I will have to figure a way out again. My next post is going to be about how I am going to take control of that and make sure that doesn't happen!

So give me all the chemo I can handle, all the herceptin I can take, and all the supplements I can stomach. Still off of meat, cheese (MY FAVORITE), and wine (although to celebrate I had a glass of malbec and champagne last night). So have a glass of wine for me, eat some cheese, and I hope I get to see you all soon at some point! Love to you all! - Dana

PS - Gonna start video blogging soon! Will update as soon as I get my Flip HD Camera!