FIRST FOLLOW-UP

posted Thursday, 13 April 2006

Today was my first quarterly follow-up visit with my oncologist... How odd it felt to be back in that office that I frequented so often last fall.

It was like deja vu as I headed back to the lab for my blood work. It appears that my veins are beginning to heal, making this a rather uneventful experience. In addition to standard blood tests, I had an additional test called a CA-125 test (this is a protein that can be made by abnormal ovary cells and is used to help screen for ovarian cancer). Because of my BRCA 1+ status, I am also at high risk for ovarian cancer. Unfortunately, there really is no good way to screen for this (even the CA-125 is often inaccurate)... but I suppose this is the best we can do.

Next I saw the nurse for my blood pressure and weight. I think she was surprised to see that I had put back on all the weight I lost during chemo (and then some!)... I guess I hide it fairly well!

Finally I go in to see Dr Cairoli. He examines me and we discuss the ongoing screening. I had heard from some others that even with a mastectomy, they sometimes offer/recommend radiation (typically, you get radiation after a lumpectomy). Over the past few months, I had been thinking a lot about this... should I ask for radiation? (Am I crazy to want more treatment?) It feels so good to be done, but I do not ever want to look back on this and wonder "if only I had done the radiation..."

What I had heard was that with mastectomy, the recommendation is based on the # of + lymph nodes:


3+ radiation of the node field & chest wall

1-3 optional radiation (not necessarily recommended)

0 no radiation (risks outweigh the benefit)


I fall into the 1-3 range, where it is not really recommended, but sometimes offered. Dr Cairoli clarified the guidelines for me. He said that with 1-3 lymph nodes, radiation is only recommended if the tumor was very large (>5 cm). He really felt that the risks of the radiation would outweigh the benefits that I would receive, therefore he would not recommend it. After discussing it, I was comfortable with this recommendation and could put the issue to rest. I've done everything I can to fight this with the information that is available at this time and I can not/will not question that further.

We wrap up the appointment and schedule my next visit. On my way out, I stop by the treatment room to say hello to the nurses and show off my curls. It's like a big reunion party. It's kind of strange, as I look into the treatment rooms, knowing that that was once me sitting in those chairs... and in all honesty, it could be once again.

I now have to wait a few days for my bloodwork to come back. This is fairly excrutiating. Why is it taking so long? Finally, Dr C calls and lets me know that all of my tests came back normal. It is really a huge relief. I can't believe that I will be going through this every 4 months. The waiting game is frustrating, nerve racking and emotionally exhausting. It is hard to keep from thinking about "what if", but for now, I will try to focus on "what is".

SPEAKING OUT

posted Thursday, 6 April 2006

Tonight I attended a training for the Komen Foundation Speaker's Bureau. The Komen Foundation Central & South Jersey Affiliate runs the NJ Race for the Cure and has granted to hospitals and nonprofits to fund education, screening and treatment for the medically underserved.

The Speaker's Bureau volunteers lead discussions on breast health and the Komen Foundation. I am excited to begin giving back by spending time helping the foundation & becoming an advocate for women in NJ.

If you are interested in doing more, become an advocate- you can start small by emailing your Congress-person about pending legislation to fund screening and research for breast cancer. The website makes it super easy!

If you are interested in having somebody from the Komen Foundation (me?) come and speak to your group in Central or South Jersey, please let me know!


Komen Mission - To eradicate breast cancer as a life-threatening disease by advancing research, education, screening and treatment.



Central & South

Jersey Affiliate Vision - To affect a meaningful reduction in the percentage of late stage diagnoses of breast cancer through aggressive education and screening