Another Chemo or Not Question

dlkillingbeck

I'm trying to decide whether I should do chemo or not.  My Recurrence Score is 22.  I had stage 1 with no lymph nodes involved, bilateral cancer.  I did lumpectomies and have clean margins.  My score indicates a 14% Distant Recurrence with just the Tam and 12% if I do the Tam and chemo.  I'm wondering if the 2% difference is worth the damage that chemo can do to my body?

HapB

Question on recurrence score

I am newly diagnosed also. Where do you get your recurrence score? Is the HER2 positive a factor?  I have not had the lumpectomy yet, just the biopsy which shows HER2 positive and positive for both Estrogen and Progesterone. They think it is stage 1, but not sure. I have had chemo 6 years ago for another cancer and I really do not want to go through it again. I was looking for some numbers to help me make my decision, but nobody has talked about a recurrence score. For me, if it were a 2% difference, I would not put my body through it again. But, each body is different. I went through chemo for the first cancer no questions asked at all. I did well, but it was a shorter course of treatment. Where can I find a recurrence score? 

jessiesmom1

The Oncotype DX test is a genomic test that can be used for ER+ women. It analyzes the activity of 21 genes that can influence how likely a cancer is to grow and respond to treatment. It also assigns a Recurrence Score. Less than 18 seems to indicate a low risk of recurrence. 18-31 is the intermediate range and 31+ is the higher range. Sounds like this may be useful for you. I wish you the best of luck.

HapB

jessiesmom1 said:

The Oncotype DX test is a genomic test that can be used for ER+ women. It analyzes the activity of 21 genes that can influence how likely a cancer is to grow and respond to treatment. It also assigns a Recurrence Score. Less than 18 seems to indicate a low risk of recurrence. 18-31 is the intermediate range and 31+ is the higher range. Sounds like this may be useful for you. I wish you the best of luck.

Thank you, JessiesMom. Where do I get that score? Is it on the pathology report from the biopsy or do I have to wait until the tumor itself is excised? 

jessiesmom1

HapB said:

Thank you, JessiesMom. Where do I get that score? Is it on the pathology report from the biopsy or do I have to wait until the tumor itself is excised? 

The Oncotype DX test is not routinely run on every biopsied tissue sample. Your doctor will have to specifically  ask for that test to be run. I do not believe that the tumor needs to be completely  removed for the test to be done but I could be wrong. Please ask your doctor about this test. 

Beepositive

Everyone system is soo different

Everyone body and system is sooo different and reacts to treatments totally different..so with that said..no one can make decisions for you on chemo /radiation etc its a tough pill on deciding what to do and whats best for your own body...at the end of the day its your body and you have to do whats best for you. so there is not stats to say yes or no on your individual situation...Please continue to ask lots of questions to your specialist and have them to give you the pros and cons of each.  GOOD LUCK WITH EVERYTHING..PRAYS TO YOU....BEEPOSITIVE....NO ONE WANTS TO SAY HEY DO THIS AND IT NOT WORK FOR YOUR BODY! THE DOCTORS SHOULD BE ABLE TO GIVE YOU PROS AND CONS ON EACH!  (just being honest..try not to work yourself up so much about it but your doctor and nurse navagator should be able to assist with your questions.    God Bless   ...BEEPOSITIVE  

dlkillingbeck

HapB said:

Question on recurrence score

I am newly diagnosed also. Where do you get your recurrence score? Is the HER2 positive a factor?  I have not had the lumpectomy yet, just the biopsy which shows HER2 positive and positive for both Estrogen and Progesterone. They think it is stage 1, but not sure. I have had chemo 6 years ago for another cancer and I really do not want to go through it again. I was looking for some numbers to help me make my decision, but nobody has talked about a recurrence score. For me, if it were a 2% difference, I would not put my body through it again. But, each body is different. I went through chemo for the first cancer no questions asked at all. I did well, but it was a shorter course of treatment. Where can I find a recurrence score? 

As the others have said, the Oncotype DX test is a test requested by your doctor.  I would ask about the MammaPrint test.  It tests on 70 genes instead of just 21 and gives you either a low score or a high score, no intermediate.  The Oncotype DX gives you low, intermediate and high.  Not so good for those of us with an intermediate score as there is not much study in that area.  I am not HER2 positive so I don't have that to worry about.  Good luck with your treatment.

 

HapB

Beepositive

Thanks again. As you say, everyone is different. I don't "get myself worked up about it", but it is my particular nature to want to know as much as I can so I can advocate for myself and make informed decisions.  I could tell you some very sad stories about people who just assumed that their doctors would make the best decisions for them or who assumed that all hospitals were equally equipped to handle every condition. So, no, I am not "worked up", but I am researching because that is my own comfort level.  Whatever works for you, go for it!  Thanks for being such a good cheerleader! We all need that.

Beepositive

HapB

ALL the best for you HapB!! I agree with you I know first hand . I had to advocate for myself too..if I did not insist on additional testing etc from my doctor after they told me my last mamo was ok..I would be waiting another 6 month/year. I knew something was not right with my left breast there was a good size mass that the mamo did not mention and I requested ultrasound/biopsy and turned out to be cancer.  we know our body better than anyone..even the doctors sometimes..

HUGS AND SUCCESS TO EVERYONE!!!   Beepositive

HapB

Beepositive said:

HapB

ALL the best for you HapB!! I agree with you I know first hand . I had to advocate for myself too..if I did not insist on additional testing etc from my doctor after they told me my last mamo was ok..I would be waiting another 6 month/year. I knew something was not right with my left breast there was a good size mass that the mamo did not mention and I requested ultrasound/biopsy and turned out to be cancer.  we know our body better than anyone..even the doctors sometimes..

HUGS AND SUCCESS TO EVERYONE!!!   Beepositive

Knowledge is power

Bee, thank God you knew your own body and pushed!  Knowledge is power. We need to learn as much as we can and listen to our bodies. For my first cancer, 6 years ago, I had symptoms and was sent to a Gastroenterologist. He did not take my symptoms seriously and told me I was working too hard in a stressful profession, etc. He prescribed some meds and treated me as though I had IBD from stress. I knew darned well it wasn't that, but went along with it for months and months. I was really busy and didn't have the time to be sick. But, I knew something was terribly wrong. I finally got fed up and went to another doctor,  a young Dr. of a different generation, who actually listened. Within days he had me in the hospital and diagnosed the cancer through biopsy. Thank God that I didn't just put it aside and I did worrry about the "what ifs". I thank God every day that there came a point where I  got fed up with that doctor. It is nice not to worry, but sometimes we do so at our own peril, as you know. there has to be a balance once we have cancer in our bodies. Each time we make a decision about testing or treatment we must weigh the risks and benefits for us. We simply cannot put all of the decison making in the hands of a doctor.