Oncotype DX Test Results – Score of 20 & My decision on whether to do chemo

Today I received the results from my Oncotype DX test. Before I get into my results I will try to explain exactly what this test is. The Oncotype DX test is done on the cancerous tumor that is removed during surgery. It tests 21 different genes and the resutls gives a recurrence score. The higher the score, the more likely the cancer is to return within 10 years of the first diagnosis. A score of 10 or less means that you definately do not need chemo. A score of 25 or above means that you definately do need chemo.

It was just my luck that the doctor should tell me that my score was a 20. The doctor said that I fall into that ‘grey area’, where they are not sure if chemotherapy is needed or not. He told me that the option to do chemo was up to me.

The odds of the breast cancer returning, either in my breast or anywhere else was 12%. Radiation and hormone therapy would lower the odds down to 6 percent. If I choose to do chemotherapy it would only lower the odds by another 1%-2%.

Why would I want to do chemo if it only lowered my chance of recurrance by only 1 or 2 percent? I suppose because a one or two percent chance could mean the difference between life and death. The doctor told me the chemo drugs I would be given and the side effects I would have. 

The first drug is Cytoxan. The side effects are as follows:

  • Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.
  • Hair loss. Temporary – usually begins 3-6 weeks after the start of therapy.  Hair will grow back after treatment is completed although the color and/or texture may be different.  
  • Nausea and vomiting, more common with larger doses, usually beginning 6-10 hours after therapy.  
  • Poor appetite 
  • Discoloration of the skin or nails (see skin reactions).

The second drug is Taxotere. These are the side effects:

  • Low white blood cell count (this can increase your risk for infection) 
  • Low red blood cell count (anemia) 
  • Fluid retention with weight gain, swelling of the ankles or abdominal area.
  • Peripheral neuropathy (numbness in your fingers and toes) may occur with repeated doses. 
  • Nausea
  • Diarrhea 
  • Mouth sores 
  • Hair loss 
  • Fatigue and weakness 
  • Infection 
  • Nail changes (color changes to your fingernails or toenails may occur. In extreme, but rare, cases nails may fall off. After you have finished treatments, your nails will generally grow back.)

The side effects make chemotherapy sound very scary. Escpecially when it would only lower my odds of the cancer returning by 1%-2%.

I asked the doctor why I should consider chemotherapy. He told me that even though they did the lumpectomy and the tumor came out with clear margins (they got all the cancer from the tumor) and the cancer did not spread to my lymph nodes it still could have spread through my blood stream. He told me that it could be in my lungs or somewhere else right now and could eventually grow and spread. He said that the chemo should kill these cells, where ever they may be in my body. I say ‘should’, because it is not guaranteed. This is why my chances of the cancer returning would still be about 4%-5%.

The doctor also said that since I am only 37 years old I should consider doing chemotherapy. I felt hopeful when he told me that I still had a good 48 years left in me and the chemo would help to acheive living into my 80′s. He went on to state that he wouldn’t recommend chemo to someone with the same results as me if they were in their 70′s. He said the one or two percent wouldn’t be worth it to them because the chemo could cause unrepairable damage to an older body.

After he gave me all of the facts I knew it was time to make my decision.

One thought came to my mind when I was trying to decide if I would should agree to the chemo treatment. What if I refused the treatment and the cancer returned in two years? How would I feel about my decision then? Of course I would greatly regret it.

And what if I agreed to do the chemo and the cancer still returned in two years? At least I would know that I did everything I could to fight it.

As much as I don’t like the thought of losing my hair, I would much rather be alive and bald then dead with perfect hair!

I start my first chemo treatment on March 20th.

I would love to hear your comments. Please let me know if you have been through this and what your decision was. What was it like and do you think you made the right choice?

 If you would like to talk to others or share your story, I have created a forum for discussion.

UPDATE: You can read about my first day of chemo and the side effects I had for 21 days.

23 Responses to “Oncotype DX Test Results – Score of 20 & My decision on whether to do chemo”

  1. Your situation is very similar to mine. I got my oncotype results today and I am a 20 too. I have the same options and it is a very difficult decision to make. Reading about your experience is very comforting to know I am not the only having to make the right treatment choice. I wish you the best:)

  2. Hello…I was diagnosed with bc in November 2007 at the age of 38. Ironically I had decided to have a bilateral prophylactic mastectomy due to family history, etc. My mammogram 4 months prior to surgery was “fine”…my pathology indicated that I did in fact of bc….8mm invasive. I had an oncotype score of 15, and also decided to go for TC treatment. I’m happy that I did. I did not want to look back and regret my decision. I hope that you are doing well.

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