CHEMO OR NOT

Karen54

Good morning everybody.  I am newly diagnosed end of June.  Had my surgery in August.  My tumor is 1cm, ER/PR +, HER-, 2 lymph nodes out of 21 positive.  My question is this - my oncotype test score is a 7.  My oncologist originally said my cancer will not benefit from chemo because it is estrogen driven.  Went to see her the other day after she brought my case before this tumor board.  Now she is saying that because the oncotype tests are usually done on node negative women they're not sure about the chemo.  She said I have a 90% chance the cancer won't come back - with chemo 95%.  I'm so confused about what do to.  Is 5% really worth all the side effects and everything else that comes along with chemo.  Help!!! 

Linda1966

Hi Karen. I think we would need to know a little more info before we can give you solid advice. What grade was your bc? What was your final pathology staging and have you done radiation? Did you have a lumpectomy or a masectomy?  In addition your age and health prior to bc would play a part in decision making.  I dont know a great deal about oncotype except I personally would not have my life dictated by it. My personal experience has been that idc grade 2 with lymph involvment = automatic chemo.

If you can supply some more information Im sure we can help give you a variety of opinions and reassurances and hopefully help you make an informed decision that is right for you. 

Anonymous

The best answer is that they don't know. 

For ER+ cancers, addressing the hormone issue seems to be the most effective treatment.  The fact that your oncotype score was so low means that the chemo is unlikely to have any effect. 

If you add chemo, you will delay the start of the hormone treatment by several months.  Are you willing to bet that the delay in starting the treatment that is most likely to be effective won't make things worse?

You know yourself.  Will you be less likely to complete the hormone treatment if you do the chemo?  Many people who plan to do both chemo and hormones get to a point where they feel like they've already done the chemo and just skip the hormone treatment, or give up on it if they get unpleasant side effects.  If so, you are probably better off sticking with the hormone treatment. 

With that low an oncotype score, do the risks of permanent damage from the chemo outweigh any possible benefit?  Some of the chemo agents can cause cardiac damage, some can cause permanent nerve damage, some can cause other cancers.  We aren't just talking about temporary inconvenience and hair loss, so it is worth seriously investigating which particular agents are being proposed for you, and what the potential side effects of those specific agents are.

Unfortunately chemo is not a magic bullet.  If it were, we wouldn't have so many angels from this board.  I wish you luck in making a very difficult decision, and peace with whatever course you choose to follow.

dltnhm

Wow. Sorry you have to be here, but I seriously wonder about your onc. The idea that your onc would tell you that chemo would be ineffective because your tumor was estrogen driven concerns me. Is there a possibility that you misunderstood her?

I'm not suggesting one way or another about you having chemo, but I'd do a little more research regarding that statement about chemo and estrogen driven.

Others will weigh in with more lengthy responses regarding the size of your tumor on one hand, the presence of positivlph nodes and the fact that you have IDC. Did you see your full final post surgical report? Was LVI present in your breast tissue. Lympho Vascular Invasion is not the same as positive nodal involvement. Also what was the status of your positive nodes? Did they show macro metastesis? If you don't have a copy of your final path, you should get one.

Bless you as you research and go through the decision making process.

Diana.

pupmom

Karen, I have a very similar profile to yours. My MO, who practices at an NCI hospital, told us that Oncotype testing is appropriate for people with 3 or less positive nodes. My score was 14 and I have not received chemo. Is your MO taking into account your stats for recurrence WITH a hormonal? I think it should be lower than 10%, unless you are weakly ER+. I am 100% ER+, and 99% PR+.  

curveball

@Karen54, I signed up for a clinical trial on use of Oncotype testing for node-positive breast cancer. When I got my test results back there were curves on the graph for both 1-3 positive nodes and 4 or more positive nodes. So there is data available about outcomes for node-positive women, although I think it was only for five years out from treatment.

I'd suggest you check with your oncologist and/or get a second opinion, but with such a low Oncotype score, chemo may have more potential to do harm than good, even with two positive nodes.

dlb823

Karen, if I was in your situation, I would absolutely seek a second opinion, preferably at an NCI-designated cancer center:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers2.html

These are the centers that see the most bc patients, so have the most experience to draw on when someone like you has possibly conflicting or contradictory features about their diagnosis.  They are also the institutions where the research is being done, so their surgeons & oncs are 100% dedicated to bc -- as opposed to more local docs who may also treat other cancers. 

While it's true that an aromatese inhibitor may give you a slight % advantage compared to chemo alone, some women (like me) have difficulty taking them for one reason or another and do not stick with them for the recommended 5 years.  If that were to happen to you, you might regret not doing chemo, if it's advisable for you.  I absolutely think you need more information, starting with a second and possibly even a third opinion, to be sure you've heard every shred of evidence and thought on your situation (not all doctors think alike), so that you can make the best decision for you.    (((Hugs))), and glad you've found BCO!    Deanna

Karen54

@yorkiemom.  Thanks for  your response.  Our cases do sound similar.  One question- what do you mean by stats for a recurrence with a hormonal?   I'm new to all this.  So unsure of what to do.  Wondering if I should get a second opinion.

Anonymous

If you are not sure what the best course for you is, by all means get a second opinion.  You need to trust that you are making the best possible decision for you.  Not necessarily the decision that is best for someone else, or the one that makes anyone one else feel better, but the one that gives you confidence and peace of mind going forward that you are following the treatment plan that is best for you.

dlb823

Karen, why are you wondering about the benefit of a second opinion?  It's a very common thing to do and should be covered by your insurance. With breast cancer, many times there aren't simple black & white answers, and getting a second opinion may provide you information you don't as yet have or experience to draw upon.   Also, most of us have found that after you have a bc dx, docs are very quick to give you an appt, so if you're concerned about a second opinion appt. possibly delaying your treatment, it shouldn't.   Deanna   

Denise-G

FYI... My good friend had an Oncoscore of 5 and 2 positive nodes, Estrogen positive. She is a very young 65 years old.   Here in Ohio at a small hospital they said no Chemo.   She went to MD Anderson as her daughter lives in Houston.  MD Anderson recommended chemo.  She is now doing chemo in Houston.

pupmom

Karen, there are statistics about one's chances for recurrence with and without hormonals. It's been awhile since I looked at all this, but I believe the Oncotype report gave that information. Also, a site called CancerMath does the same thing. You plug in what you know about your tumor and it gives you numbers about how likely a recurrence is.

dlb823

Karen, I just wanted to add... you can always take second opinion recommendations back to local docs so that you could, for example, have chemo locally, if it comes down to that.  That's what I did -- put my local onc in contact with my onc @ UCLA so that he could follow UCLA's recommendations, which at the time were quite leading edge and very different from what he and another local onc had recommended.  My bio page tells more about my experience and makes it obvious why I'm so keen on second opinions from NCI-designated cancer centers.     Deanna

msmpatty

With the pathology on my biopsy and 2 sentinel nodes that appeared okay in surgery, I was told no chemo.  But when the lab report came back and found tiny bits of cancer in the sentinel nodes, I was told I had to do chemo.   Who knows whether it helped or not.  But I don't regret doing it.  Sounds like you may be in a gray area regarding chemo, there may be no absolute right or wrong choice.  Just do what feels right for you.  And keep in mind chemo that is completely doable!  Sure it is a hassle and you lose your hair, but it is not as bad as we all imagine it will be.

Patty

christina0001

I'd suggest getting a second opinion as well. Two heads are better than one...measure twice, cut once... you get the drift. I have gotten second opinions a few times during this journey and it has given me a lot of peace of mind.

Susie123

Also Karen, you didn't mention what grade your tumor was. If it's grade one, chemo would not be effective against it anyway and with such a low oncotype score I'm guessing it's grade one. My onco said the risk of toxicity from the chemo would be greater than the possible benefit of chemo for a grade one tumor.

seniormom

I was diagnosed with IDC on July 12th, 2012.  Had a lumpectomy Aug. 1st and lymph node biopsy. Results 1.7 tumor, sentinel node positive. Second surgery Sept.10th, 18 nodes removed, 1 positive. A total of 2 positive nodes out of 19. My oncologist said she would not recommend chemo for me. I am 70+, in very good health but the risks and side effects almost balanced out the benefits of chemo. Chemo would have given me an additional 5% benefit, therefore I chose to not take chemo.  Last week I started taking Letrozole (Femara) and possibly next week will start radiation.  I do at times question if I have made the right decision, as much as I did not want to go through the chemo I would have if the percentage had been a bit higher.