Wednesday, August 4, 2010

Decisions, Decisions…

Yesterday Dan and I met with Dr. Helft, an oncologist at IUSCC. We were referred to him by a good friend who worked in the pathology department. We both were really nervous about what the oncologist would say. With Dan recovering so well, and back to his old self, it would be crushing to hear he would have to go through rounds of chemo and radiation.

Dr. H first wanted to make sure Dan was feeling ok. They checked his pulse, heart rate, weight, listened to his heart and lungs, looked at his incision, and palpated his abdomen. Everything looked great. They reviewed with Dan his initial symptoms and what was done and discussed at his previous Dr. appts. They also checked his and his family's history of all diseases.

He started from zero and went through Dan’s diagnosis. He indeed had Stage IIa colon cancer. His cancer was a mucinous adenocarcinoma which means the tumor was in a gland and the cells produced a lot of mucin, or mucous. This type of cancer occurs in 10-15% of adenocarcinomas and these tumors are typically more aggressive and harder to treat. The good news, all of his LNs biopsied were clear as well as his liver as seen in the CT scan. If the cancer was going to spread, it would most likely be to the lymph nodes, liver, or lungs. Dr. H would like Dan to have a CT of his lungs just to be sure they are also clear.

Next we went through Dan’s prognosis. Dan has a 20-25% chance of having a recurrence of cancer in the next 5 years (+/- 5%, but the doctor said he would lean towards the 25% because of the mucinous tumor). This was a little higher than Dan and I originally thought. The good news, after 5 years, his risk dramatically drops, and after 10 years he’s considered cured. The scary news, if Dan does have a recurrence, there is a 95% chance of it being incurable. It would most likely be treatable, but therapy goals would shift from curing the cancer to shrinking the tumor and preventing further metastasis (spread). Also, recurrence wouldn’t be in the colon. He could have a local recurrence (risk reduces after a year) on the outer membranes of the colon most likely caused by cancer cells being knocked loose during the surgery, or a recurrence in the liver, lungs, lymph system, or bone marrow. Dr. H did say that if we are planning on having children and we want to be sure Dan will be around, it would be worth waiting the 5 years.

So, with that, we moved to therapy options. There are three arms of chemotherapy options for Dan’s type of cancer.
The 1st is an oral medicine, Xeloda. This was approved by the FDA in 2000 and is typically used in Stage III colon cancers and breast cancer. Unfortunately, the dose approved by the FDA has horrible side effects, so the Dr. would have to give Dan a lower dose to help with the side effects, but there aren’t studies showing this lower dose would be as effective of a treatment. That and Dan’s was Stage II.

The 2nd and 3rd arms are treatment with a drug commonly called 5-FU or Fluorouracil. This is given as injections either in a port (2nd arm) or through IV in the arm (3rd arm). The port option is out because the risk of infection and overall discomfort is too great for us. The IV treatment is a cycle of 3 weeks on, 1 week off the chemo, for 8 months. As the side effects go, the Dr. said it's pretty minimal compared to some chemo drugs. He has had some patients with no side effects and the worse were functioning around 90%.  It’s very rare for hair loss, but it’s common to have fatigue, diarrhea, eye problems, temporary changes in eye and skin color, and mouth sores. Loss of appetite are seen with the mouth sores as well as developing a metallic taste. There are no lasting side effects, and the chemo would not affect his fertility, but we wouldn’t be able to get pregnant for 18 months after starting therapy, or else we would have an increased risk for a genetic mutation in the child. Treatment with this arm would reduce his risk of recurrence 3-5%.

Now, there is a genetic test that is being done on Dan’s tumor to look at the Microsatellite DNA in Dan’s tumor (different from Dan’s DNA). Basically, there is instability in the microsatellite DNA, then the 5-FU treatment is not effective at all, and can make his prognosis worse. The good news is, these tumors have a better prognosis than those lacking the instability. Only 22% of Stage 2 tumors are positive for this instability.


So, we go back to see Dr. H in 2 weeks and we will have the DNA test back, and the goal is to make a decision about whether or not to do chemo, and if we do, which type. We definitely have some tough decisions to make and I can argue either side. It’s a scary thing to think that we might be going through this again in the next 5 years, but we need to do what’s right for Dan and our family.  Hopefully we can make and stick to a decision by the 17th.  Or maybe Dan's tumor will be positive and we won't have to decide!

3 comments:

  1. wow. you do have tough decisions to make! I feel like maybe I'm misunderstanding a lot of what you said, but if he has a 1 in 4 chance of recurrance (which means a 75% chance of being CURED!!!!!!!!!!!!!) and the chemo with all the terrible side effects, at BEST, only brings it down to 1 in 5... IDK. if it were ME, I would not choose to do the chemo. but that is ME. and I have NEVER been in your situation! I know whatever you decide it will be the RIGHT decision for Dan and your family and I will be here to support you NO MATTER WHAT. Thinking of and praying for you guys. HUGE HUGS.

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  2. I am thinking of you guys so much right now. You are both in my prayers every day. You are both very strong people and I know that you will make the right decision for you. Love you both!

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  3. We are definately going to ask about other options. The 5-FU doesn't seem to be worth the effort. I'd like to look into a holistic approach with some alternative medicines. We are thinking about getting a second opinion. I want to explore all options.

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