To Tamoxifen Or Not To Tamoxifen: That Is The Question

Hawk-it sounds like your MO didn't do a very good job of explaining things to you. You can ask for a copy of your pathology report & find "grade" "stage" "ER" "PR" & may be some other useful information. Since you were provided with so little information, you might want to find someone who is willing & able to explain things better. Even if all 3 of your tumors are stage1, grade1-you might want to consider the oncotypeDX test. Since so many things have gone wrong for you, can you go to a large cancer treatment center, even if you have to travel?

The BRCA test looks for changes in a couple of genes that are associated with increased risk for cancer.  These mutations are more commonly seen in women who develop cancer when they are young.  The Oncotype DX test looks at the gene activity in your tumor cells and uses that information to give you a recurrence score and an estimate of how you would benefit or not from chemo.  The BRCA looks at genetic mutations that are present in all your cells presumably from birth,  the Oncotype looks at the characteristics of a specific tumor.

Hi Hawk - The radiation is supposed to kill any cancer cells that might be left in the the breast area after surgery.  Chemo is supposed to kill any cells that might have escaped out of the breast area into the body.  IF any of those cells are out there in your body it is important to kill them so they don't start growing somewhere.  The tamoxifen also works to keep any stray cancer cells in the body from growing because it blocks them from getting estrogen, which they need to grow.  So radiation is to prevent local problems but chemo and tamoxifen are supposed to work to try to protect your whole body.

The tumor grade is an indication of how aggressive the cancer cells are.  If you take a normal breast cell and compare it to a grade 3 breast cancer cell the grade 3 breast cancer cell would be very different.  It would have a lot of problems inside itself that causes it to grow without the normal controls.  Grade 1 cells are only a little different from normal breast cells, grade 2 are a little more different and grade 3 breast cancer cells are very different from normal breast cells.  The good thing is that because grade 3 cells are so messed up they are more suseptible to chemo.  

Please do not forget the fact that the OncoType test results are predicated on the assumption that you will be taking tamoxifen as part of your treatment. 

The BRCA test indicates whether- or not you're at risk for Early Onset Breast/Ovarian Cancer Syndrome due to an inheritated genetic mutation.

Each of these tests are for different things, although they are, often, used in conjunction to plan your treatment protocol.

I had 2 lumpectomies  to get clear margins. I also had chemo along with herceptin for HER2 twhen the chemo was done I had radiation, then stayed on the herceptin for the remainder of ther year treatment. I also take Tamoxifen, because when I has a bone density I already had bone loss. I have a lot of side effects I hate it! I have my followup mamorgram this coming Monday a little nervous. Remeber everyone is different, you have to get the information and advocate for yourself, and then be satified with what YOU decided. good luck

Hawk, I think it is certainly worth a second opinion, but I'm not overly surprised they're not recommending chemo so don't panic, just do your homework.  As for tamoxifen, I've been on it for 3 years.  It was miserable for the first little while but once your body gets used to it most people don't have many complaints.  I was so afraid of so many of the side effects that I had heard about but I ended up with very few of them and it has all been very livable.  As I've developed my circle of bc friends, I've learned that most of us are fine on it.  I was 34 at diagnosis and just had a hysterectomy/oophorectomy last month.  I just had a bone density scan prior to my hyst and I am osteopenic.  I believe it is due to the fact that I was premenopausal, petite, and on tamoxifen.  I strongly suggest making sure you're doing weight baring exercise and taking calcium and Vitamin D daily.  Honestly, my thought is, you've had this twice.  You're body is not understanding what to do with estrogen and you NEED tamoxifen and you need it more than you need chemo.  Believe me I fought it, I researched the hell out of it, the fact is it does it's job.  Good luck and many hugs!

If you have ER positive bc tamoxifen should cut your distal recurrance rate almost in half.  It will also greatly reduce the chance of a local recurrence and reduce the chance of another primary in the contralateral side.  Your MO should be giving you hard numbers concerning your chances of distal and local recurrence to help you make these decisions.  They use a computer program called "Adjuvant online."  Once you know these number you will also know how much taking tamoxifen will help.

  The oncotype DX test looks at the proteins (actually mRNA but that is a precursor to protein) your particular tumor is expressing which is also used to determine your distal recurrence rate and also how much chemo will help you.  (In my case even with a 2.5 cm main tumor chemo only gained me 1% in survival so my MO recommended no chemo.)

http://www.adjuvantonline.com/index.jsp

http://www.oncotypedx.com/

A BRCA mutation looks for a genetic mutation (which is in your DNA and is independent of the tumor you have now).  Women with the BRCA mutation have a much higher chance of having a 2nd primary bc diagnosis and also higher rates of ovarian cancer and some other cancers.  This is important information both for you and also for other family members - expecially any children you have.  The BRCA gene mutation is a dominant mutation but it may be sort of hidden since you can inherit it from either your dad or your mom.  (If there a lot of men on one side of the family you are not going to see a lot of breast cancer.   Also even though the odds of having bc are greatly increased with a BRCA mutation not every woman with a BRCA mutation gets breast cancer). 

From my way of looking at things taking the BRCA test should be independent of the decision about tamoxifen.  Taking tamoxifen once you have been diagnosed with invasive breast cancer is most importantly about preventing a distal recurrence (metastatic disease) -- - cancer spreading and showing up in your liver or bones for example.  Tamoxifen reduces this risk by almost a half. 

for information about the BRCA mutation and hereditary bc : 

www.facingourrisk.org

My oncotype is 14 !

You're very welcome Sarah! I never did oncotype dx since its only been studied in women over 35 so my MO felt it wouldn't apply - so not sure about insurance. I think doctors only suggest it if they're on the fence about you doing chemo. I also had a positive lymph node which put me squarely in "need chemo" category.

Hawksfansarah - yes, I heard that oncotype is only for breast cancers that have not spread. And I'd go out of the box, but that's totally up to you.

Also... If it has spread, chemo is the only thing that can help.

Sarah, there are a ton of ladies with info here that are happy to give you explanations, as you have found out.

great that you are near a large city cancer center

you may want to nosey around and see if any folks you know have been down this road and can give you opinions on docs or such

head up, be a bitch to the dumb docs as it is your body and life! oh yes, a tape recorder for your next doc visit might be a good thought or take someone with you to make note of all details

good luck, 

Hawsfansar..., i had the oncotypedx test , cause I had a small tumor , no nods and no mets , what I know is that it is only or the early stages of bc ....good luck xx