discouraged about Oncotype test

ohilly

I have invasive intraductal cancer and had a mastectomy on Feb. 21. I am hoping someone can say something encouraging or at least help me to put into perspective the results of my Oncotype test. Until I got the results this past Monday, I was actually pretty hopeful: my cancer is estrogen positive, the tumor was only 1.1 cm, and it did not spread to the lymph nodes. I am considered Stage I. However, the Oncotype test gave me a score of 28, which is in the high intermediate range. I am definitely going to do the chemo which will lower my risk of a distant recurrence to 12%, but ever since I got that score, I am so down. The way I look at it, it basically means I have a 12% chance of dying from a distant recurrence. I realize this also means I have an 88% chance of living, but I just can't seem to look at it that way. Did anyone else have a relatively high Oncotype score and how did they deal with this? I also try to tell myself that this test is very new and only represents probabilities, but it is disheartening. Thanks. Ohilly

Unknown

ohilly, don't panic. You and I had very similar tumors. Mine was 1.5cm, er positive, her2 negative, clear margins and nodes, and stage 1 but with a nuclear grade of 3. I too considered the oncotype but both my oncs said that the test was too new to base treatment decisions on. I eventually agreed. I had a lumpectomy, chemo, radiation, and am taking tamoxifen for 5 years. With all that my risk of relapse is about 10%. Similar to yours. Think about it, thats actually very good. We both have a very good outlook---really!! Nowadays, most breast cancer survivors(even those with far worse cancers than ours) never have a recurrence. Think positive, you are going to be ok-we will both be ok. Its still too soon for you to not be terrified. But you will see, eventually the terror will begin to subside. Just curious-your tumor was very small but yet you opted for a mastectomy. Why not a lumpectomy?

seof

ohilly,
Discouragement is part of being a survivor, unfortunately. What helps me is my faith and my Christian community. Christ is in control of my life, cancer is not. That does not mean I do not have my bad days, or that I do not yell and holler and scream sometimes because I am tired of having the possibility of recurrence in the back of my mind, I just do not allow myself to stay there. When I start to get down and discouraged about the daily struggle with cancer, I try to focus on the rest of my life that is not cancer. I have a great job, a loving husband, and 2 great daughters. I have other people around me I can focus on. I can call them and pray for them, I can help with a project at church, or at work...anything to get my mind off of me and do something more "normal" for a while.

Hope this helps, seof

ladybluepgh

HI...like you my oncotype test came out in the intermediate risk category...but since I had one recurrence, I really didnt expect anything different...I'm taking it one day at a time and thanking God that I have each new day to enjoy...still healing from my second mastectomy..I'm sore but looking forward to renewed good health...the cancer is gone for now and I plan to celebrate that...hope you can find a way within yourself to accept the things you cannot change and live for what you can deal with. Take care.

Unknown

Ohilly, I hope you are not offended by my asking about your surgery choice. Everyone makes the choice that is right for them. I guess after reading your story I felt a little pang of worry about my decision. Mostly I do not have any regret but one of the things that cancer changed for me was my ability to feel comepletely sure about anything in life.

3cbrca

I know what a struggle it is and have my own approach to accepting the statistics. Maybe some will help you look at the up side. I wish I had an 88% chance of living - mine's about 20% with a 96% chance of recurrance. I'm hanging on tight to that 20% chance and doing everything that improves my chance for survival including excercise, diet, massage, friendships and hanging out with other survivors that are upbeat. I also hang on to the words of those who post on this board who have similiar diagnoses that are still signing on to this board 10 years later.

Laughter no matter what the prognosis is still the best medicine and other than those situations over which I have no control, I only hang out with people that can laugh about cancer and talk openly and comfortably about life and death issues.

Hope this helps -She

PAINTEDHANDS

My onchotype was 45, did 4 rotations of chemo, now in my first week of 8 weeks of radiation. You can do this. I went horse back riding today, did a 14 mile kayak last weekend. Have had to work a 40 hour week all through my treatments, have not missed a day even after any of the 4 surgeries. I have a very physical job and cannot take any narcotics. All you can and have to do is one day at a time. Take care.