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Tuesday, July 1, 2008

Doing What's Right For Me

Well, I finally have some decisions made and some time to update everyone. There has been a lot going on over the past couple of days. As you all know, my lymph nodes where negative which is an amazing blessing from God! After finding out the nodes where negative, I had still planned on going ahead with chemotherapy first. However, because I had not spoken or met with my oncologist since first finding out I had cancer, I thought it would be a good idea to call him and make sure that having chemo first was still the best option for me. I had begun to wonder if having the surgery first, knowing that the cancer is strictly confined to the breast, would be a better plan of action. I called Dr. Hoos (my oncologist) last Thursday morning and received a call back that afternoon from his nurse. She told me that Dr. Hoos did want me to proceed with chemo first because I had been diagnosed with triple negative breast disease. When I asked her what this meant, she wasn't so sure herself. Being the end of the day, I hung up the phone and immediately began researching triple negative breast disease (tnbd). I would highly recommend that you don't do this. I am going to add two very reputable sites at the end of this post where you can read about it if you wish. After doing some research, I was completely paralyzed with fear. Basically, TNBD is a fairly new term used to describe a breast cancer that is completely hormone negative. This means that hormone therapy will not benefit me whatsoever and that chemo is the only regimen by which to kill this kind of cancer. In addition, TNBD tends to spread at a faster rate and has a greater risk of recurrence somewhere else in the body. The one good thing about it is because it does not respond to hormone therapy, it is known to respond better to chemo than other hormone positive breast cancers.

Ryan and I had a lengthy discussion about my situation and where beginning to lean more and more towards having the surgery first, followed by chemo. I called Dr. Hoos Friday morning and once again left a message for him. I requested to meet with him that afternoon to discuss my concerns. This was very important to me knowing that I was scheduled to have chemo on Monday. The nurse finally called me back later in the day and said that Dr. Hoos had left for vacation and would be gone all next week. I cannot tell you the feeling of abandonment Ryan and I had at that moment. Here I had just learned (through my own research) that I had a very unique cancer that only affects 10 - 15% of all breast cancers and I had no one to discuss my options with.

Later that afternoon I met with my plastic surgeon, Dr. Geter, and he discussed with Ryan and I the different options for reconstruction. Ryan got to handle a silicone implant and he enjoyed that part. I thought for a second that he might even try to sneak one in his pocket to bring home! After leaving Dr. Geter's office, we headed over to Dr. Cavagnol's for any last bit of hope or insight as to what our decision should be. Dr. Cavagnol explained to us the benefit of having chemo first. He also said it could be possible that there are tiny cancer cells somewhere else in my body that need to be zapped and by doing chemo first we would get a jump start on killing those cells. When we left his office, Ryan and I thought we had made up our mind and had decided to go ahead with the chemo first. However, there was a bit of doubt within the both of us that this was the right decision, despite what the doctors where advising. Over the weekend, we talked about the pros and cons of both scenarios. Every waking minute was spent hashing over what we should do. We gathered the opinions of others (some in the medical profession) and really prayed that God would give us a discernment, wisdom, and peace in regards to making a decision. When you have cancer, you don't have a lot of time to make decisions and that is very difficult. If my nodes had been positive, I would have been having chemo first, no questions asked. However, my nodes where negative, by the grace of God, so surgery seemed liked a better option. The problem is, my nodes are negative, but my cancer is aggressive, fast-growing, and tends to spread.

Ryan and I came to the agreement that it was absolutely critical that I meet with an oncologist yesterday before having chemo or surgery. We felt that it was our right as the patient to be informed about my condition. So, yesterday afternoon at 4:30, we met with Dr. Holden, the oncologist on call for Dr. Hoos. We told him that we had decided to go ahead with the surgery first. I did discuss with him the possibility of getting a PET scan before surgery. He told us that this wasn't really standard procedure because the size of my tumor is less than 2cm, my nodes where clear, and my blood work looked good as well. However, he said that if I really wanted one, he would order one. Well, I'm not going to turn that down. He went on to explain that there isn't any research to show that chemo before or after surgery makes a difference. He also said that because I am young and healthy, he believes that the chemo will destroy any cancer cells that might be floating around elsewhere. He had no reason to believe that the chemo wouldn't do its job.

Ryan and I left his office feeling huge amounts of relief and with this decision made: I will have surgery first, followed by chemo. We are hoping to have the PET scan done before surgery, but we aren't sure if that is going to be possible. The only reason I would end up having chemo first would be if I have the PET scan before surgery and something shows up other than in my breast. If there is cancer somewhere else (and we have no reason to believe that there is) then we want to start killing the cancer as fast as possible. If nothing shows up, then we are on to surgery. Surgery would mean that I am cancer free! There is a chance that I won't be able to get the PET scan before surgery because of scheduling conflicts. If that ends of being the case, then I will have the surgery, forget about the PET scan, and never look back.

Through this process so far, Ryan and I have realized that we have to do what is right for me. We have to also treat what we know, not what we don't know. What we know is that I have a triple negative breast disease that is Stage I with no node involvement. We know that the cancer is confined to the breast. We know that by having the surgery first, I am staying one-step ahead of my cancer. We know that by having chemo, I am killing any little cancer cell that is still trying to set-up shop in my body. Leaving a cancer in my body, no matter how small, is not a risk I am willing to take. While speaking to someone on the phone this week, (thank you God for bringing this person into my life) they stated that you have to make sure your entire body is moving forward in this process. I have to keep my eye on the ball and treat what I know, and what I know is that after surgery I will be cancer free!

I am meeting with Dr. Cavagnol this morning to schedule surgery and to make sure he knows how to use a scalpel. As soon as I know when I will be having surgery, I will update you all! Now that decisions have been made, please pray that this process would begin very soon. The sooner it begins, the sooner it ends!

Thank you God for giving Ryan and I the wisdom and peace we so desperately needed!

http://www.tnbcfoundation.org/2007peaceloveandacure.htm

http://nosurrenderbreastcancerhelp.com

1 comment:

H P Austin said...

It's amazing to me that you can put EVERYTHING that has happened from last Thursday to now in written form. I know the past 4 days have been a whirlwind of stress for you and Was. However feel that God has given you more knowledge that you did not have if you would have stuck to the original plan. The most important thing is that both you and Wasson are confident in your decision so that you can fight this terrible disease in a positive way. Again, I am proud of you. Hang in there. Lots of love,
Hil, Kev, and Z