Oncotype score 26. What should I do?

Hi Auriga and graphics girl..

I also got a score of 27 on my oncotype test.I too am now contemplating chemo. Yes it is our life and we all want to live. Do we really have any choice but to say yes. I do have two appts with oncologists but in my mind I will just be discussing the type of chemo with them. 

Here is my story.I am a 61 year old women with hormone postive lubular cancer.I had two sites the largest being 1.2 cm.  I had an unsuccessful lumpectomy in November .My margins were not clear. So now I am scheduled for a mastectomy on January 5th.On my preop visit with my breast surgeon she told me my oncotype score. I was so upset. It always seems to me and my husband that each time we think we are almost done with this stuff they come up with something else. Yes this cancer stuff is complicated and I have learned there is so much to it. Unfortunately I have learned so much about this topic more than I have ever wanted to know.

I went to my internist yesterday and she said chemo would not be easy but it definitely will be much less agressive at this time than if I do not do chemo and have a recurrence in 5 or 10 years. They they would get the big guns out..She also said think of it like winter ,,soon you know spring will be here. So I guess I probably will go through with it.

Graphics girl..Thanks so much for writing in your first time so others like me could share and learn form you. Please do tell me a little more in detail about your chemo. Did you loose your hair..were you very nauseated etc..I am retired so I do not have to worry about work.

Once again this board is a life saver for all us women with breast cancer who feel so alone.

BTW the NY Times mentioned the Breast Cancer. org board today. They said that women could learn much from it.

Happy Holidays all.

 Francine

auriga, my Oncotype score was also 26.  Both the oncologists I spoke with recommended that I get chemo.

An Oncotype score of 26 isn't really "right in the middle."  It's in the upper third of the "intermediate risk" range (18-30).  The relationship between the score and the risk is "continuous."  That means a score of 26 is a lot closer to the "high risk" category than to the "low risk" category.

Besides my Oncotype score, the other features of my tumor that argued in favor of chemo were the size of my tumor (1.8 cm, which was "almost" 2.0 cm), the grade of the tumor (grade 2 = intermediate differentiation), and the fact that it was ER+ but PR- (tumors that are PR- have a greater risk of recurrence and progression than tumors that are ER+ PR+).  I see that your tumor was also at least 1 cm in diameter and was ER+ PR-, although it was only grade 1.

The final reason I was given for chemo was my "young" age.  I had to laugh, because I was 56 at the time and didn't consider myself young anymore.  The thing is, younger age is associated with a greater risk of recurrence, plus a lot more years of life to "protect" through more aggressive treatment.

I don't know your age, but some of your other details are similar to mine.  I didn't consider the benefit of chemo to be "only" 5%.  I understood the risks of chemo and the serious SE's that could result; but for me, the risk of recurrence was high enough to justify choosing chemo.  I finished 4 rounds of Taxotere & Cytoxan this past June.

otter 

Hey, cancer twin!  LOL is right...

I won't try to convince you one way or the other about whether you should get chemo.  That's something only you and your onco can decide, based on your own level of comfort with risk-taking.  That's what it all is, really--it's risk-taking.  And, I'm really bad at risk-taking.  As my husband would tell you, I won't even put down a $2 bet at the dog track.

Anyway, here's how I thought about it.  Okay, there are some long-term risks associated with chemo drugs.  A few of them are very serious, like leukemia and heart damage.  But, given my stats, the risk that I might have some of those long-term problems was quite a bit less than the risk that my cancer would come back if I didn't have chemo.  And, I tried to imagine how I would feel if my cancer did come back.  I decided that if I skipped chemo and my cancer came back, I would always be kicking myself for "wasting" that opportunity to reduce my risk by 5% (or 6%).  On the other hand, if I went ahead and had chemo, but the cancer came back anyway, at least I would know I had tried my best.

Yes, the hair thing sucks. It sucks really big time.  I wasn't afraid of losing my hair--I just hated it.  My husband was so very supportive of me, and I was lazy--I never did buy a wig; I just wore caps and scarves, or went bare-headed at home.  There was nothing easy about it, though.

What was interesting about chemo was how much worse the anticipation was, compared to the real thing.  I had to start chemo just one week after getting the results of my Oncotype test.   I wasn't ready for chemo, but nobody is.  I wasn't ready for my hair to fall out, but very few women really are (no matter what they say).  I wasn't totally ready for the other SE's of chemo, but reading about them on these boards really helped prepare me.  And, I found a great group of women (several groups, actually) to hold my hand (virtually) and give me the courage I needed.

Whatever you decide to do, just do it and then move on.  If your decision is to have chemo, be assured that you can do it.  You really can.

Hugs...

otter 

Hi,

Thks graphics girl for all your comments. I do feel better after hearing all your comments. I am also so terrified as the others are of loosing my hair. I guess hearing from others their experiecne help to convince me that I too can do it. I too am fearing chemo more than I am my mastectomy, just as Auriga has said. It's funny that after all we have been through we still fear the loss of hair. I guess it is a feminine thing. Men wouldn't really care.

One question I have for auriga is that I do remember on another board reading about women getting silicone fills during chemo. Is that what your reconstruction was to be? My will be started during the mastectomy.

Well I wish all of you good luck with your decisions and your chemo. I will check back to see if any decisions are being made. I must first have my masectomy on January 5th, heal and then the end of January I go to the Oncologists.

Francine

Hi:

I had an Oncotype score of 20 and I did the chemo.  I was so afraid of losing my hair but it really doesn't bother me that much.  I'm fuzzy, never went totally bald.  My only complaint is that my head is cold.  Glad I didn't have to do this in the summer because I have so many hats and scarves now, my head would be too hot if it was summer.

Good luck with your decision.  I had 4 rounds of Taxotere and Cytoxan and only had 2-3 bad days per round.  It's very doable.  

Peeps

Ladies,,Auriga,Peeps etc.

Thanks for all the replies. Auriga I do understand now that you will have to wait for the exchange. I think I will be having the fills along with the chemo.

Yes ladies you are a godsend. It is so encouraging to hear posive comments about the chemo.

I feel that although this is a journey I would have chosen not to take I think my decision will be to have the chemo.

Good luck..Auriga whatever your decision is..

Hi Auriga and all.... wow, there are people who had minimal SE from chemo.... how glad I am to hear that....Auriga my dx sounds similar to yours.. and I'll be 47 in May... I'm 3 weeks out of a bilat and my onco score was 22... so I'm smack in the gray area.. not knowing what to do.  Onc says AC 4x will increase my odds by 3-5% but can I handle it?  I don't know.  And what's the difference between AC and TC?  TC seems more like the more popular chemo cocktail.  I'm totally confused about that.. and fear feeling sick for 12 weeks.  I feel rushed into the decision too... onc says I must make it 4-6 weeks after my surgery which is coming up soon..... ugh!!!

Auriga:  I remember discussing with you the fact that my oncologist said that her treatment regimen for an ER positive and node negative cancer with a tumor of 1 cm [such as yours and mine] would be tamoxifen only.  I am taking Tamoxifen only,  However, in researching further, I came upon a study which seems to support that in the case of post-menopausal women [like moi], there was no substantial if any benefit of chemo in addition to tamoxifen.  However, there appeared to be an increased benefit in premenopausal and even perimenopausal women - with a treatment regimen of chemotherapy plus tamoxifen.  Here is the article:

http://jnci.oxfordjournals.org/cgi/content/full/94/14/1041

In light of the article above, I think that for you, at your premenopausal stage in life, the additional benefit would seem to apply. 

However, that said:  Did you ask your oncologist what the risk of recurrence would be if you had:  A.  Tamoxifen alone, versus. B. Chemotherapy plus tamoxifen.  THIS would be an interesting question.  I mean, we still all have a percentage of risk of getting cancer again, so no treatment regimen will eradicate our risk entirely.  But for those of you who did have the Oncotype DX test, was the treatment regimen of tamoxifen only vs. chemo plus tamoxifen quantified?  I really would like to know so that I can pose this question to my own oncology team.  I just might decide to get that test.

But auriga, if in the end analysis the addition of chemo will reduce your risk by 5%, as much as I deplore the notion of chemo myself, I too would be out there next week, shopping for a wig. 

Hugs,

Deborah

Auriga I had a score of 16 which I still debated chemo but 2 oncoligist told me no.  With a score of 26 I for sure would of took the chemo.  It will be tough but the ladies here are great and will have so much advise for you.  Good news with the oncotype test, if your insurance won't pay it you might qaulify for aid from them.  At 1st my insurance wasn't going to pay for it and was in tears but was so happy to find out that a family of 4 if you made less than $84,000 we won't have to pay one penny of that test.  I'm glad to say after doing 3 apeals we finally got the insurance to pay.

I'm hoping the best for everyone here (((HUG)))

crusader (Francine), you've pointed out something very important:  Information about the optimal treatment for BC is revised and updated fairly often.

The paper mentioned by Whippetmom is an editorial that was published in 2002.  It discusses results of a study that was published in that same issue of the Journal of the National Cancer Institute:  International Breast Cancer Study Group (IBCSG):  "Endocrine responsiveness and tailoring adjuvant therapy for postmenopausal lymph node-negative breast cancer: a randomized trial."  J. Natl. Cancer Inst. 2002; 94:1054-1065.

That study looked at disease-free survival and overall survival in 1,217 women with ER+ tumors.  It also looked at women with ER- tumors, but they're not relevant to this discussion. Half the ER+ women received CMF and tamoxifen after surgery; the other half received tamoxifen only.  This was the researchers' conclusion: "Postmenopausal patients with lymph node-negative breast cancer benefited substantially from adjuvant chemotherapy if their cancer was ER-negative (i.e., endocrine-nonresponsive). In contrast, if their cancer was ER-positive (i.e., endocrine-responsive), they obtained no benefit from the combination treatment compared with tamoxifen alone."

That conclusion was important because it contradicted the "standard therapy" for BC up to that time.  Through the 1990's and early 2000's, chemo was based on the size and grade of the tumor:  women whose tumors were larger than 1 cm almost all got chemo, even if they were node-negative and the tumor was ER+.  Tamoxifen was given for 5 years after the completion of chemo.  The 2002 results meant that many women with ER+ tumors would no longer get chemo; instead, they would go directly on to tamoxifen.

There are several problems with that report, when we look at it now, 6-1/2 years later.  First, although the report was published in 2002, the study on which it was based was conducted between 1988 and 1999.  Much has changed since then, including the optimal surgery and the most effective chemo regimen for preventing BC recurrence. 

Second, the adjuvant chemotherapy used in that study was CMF.  CMF is considered a "first-generation" chemo regimen and is not used much anymore, although it is still popular with a few oncos and at a few cancer centers.  Larger or more aggressive tumors are generally treated with one of the more aggressive chemo regimens that have been developed since then (ACT, TCH, etc.).

Third, as Whippetmom said, the women in whom chemo was found to be "ineffective" were post-menopausal.  We know today that younger women are likely to have more aggressive BC.

Fourth, oncologists now understand that not all BC is equal--not even all ER+ tumors respond the same way.  Just because some women with small ER+ tumors won't benefit from chemo, does not mean there is no benefit from chemo in ER+ BC.  The main change has been because of Oncotype testing.  However, Oncotype testing is fairly new; and some oncos still don't trust it.  They want to see more studies to validate its reliability in predicting recurrence and benefits from chemo.

Wippetmom also said this:  "Did you ask your oncologist what the risk of recurrence would be if you had:  A.  Tamoxifen alone, versus. B. Chemotherapy plus tamoxifen.  THIS would be an interesting question."  She is absolutely right.  Our oncos should be giving us those numbers, if we want to hear them.  (Some women don't.)  The Oncotype report provides some of that information; there are also several on-line and computerized risk calculators that oncos can use.  My onco told me my 10-year risk of recurrence with tamoxifen alone was 17% (based on my Oncotype score); and she said chemo would reduce that risk by one-third.  So, after chemo and 5 years of tamoxifen (or in my case, an AI), my risk of recurrence would be around 12%.

I hope this helps.

otter 

Otter:  Here is an article from September, 2008, based on studies on this issue we are discussing.  Your thoughts?  The article is indeed this year, although the studies on this topic were finalized in 2006.

http://www.medscape.com/viewarticle/578955_1

Appreciate your commentary!

Otter:  I discussed this entire issue with my surgical oncologist today.  It is the "post-menopausal" status which infers, by virtue of many clinical trials, that I would receive no substantial benefit with chemo as an adjunct to Tamoxifen.  That said, I still may take the Oncotype Dx test.  I'll discuss this with a medical oncologist in a couple of weeks.  I am 58 years old and went through menopause early - at age 46.  But some women, such as my sister, who is 57, go through menopause later in life.  My sis is just now having prolonged length of time between periods.  So to think my one year younger sis might fit into the pre-menopausal category is amazing.  However, she is having her prophylactic bilateral mastectomies in March [she decided to do so the minute I was diagnosed]- so she will never have to take the test.   

Have a wonderful holiday!

Hi swimangel72: 

My current oncologist put me on Tamoxifen for 5 years and then states I will be placed on an aromotase inhibitor thereafter.  I do not have the risk of endometrial or uterine cancer - as I had a hysterectomy at age 43 - although I still have my ovaries.  Incidentally, based on auriga's topic of the Oncotype Dx - did your oncologist mention it at all to you?  I would be interested to know if post-menopausal women are being offered this test.  Based on my discussion with my surgical oncologist today, we are getting a referral for a second medical oncology consult. I will see what his/her opinion is of the Arimidex vs. Tamoxifen.  Thank you for mentioning this....

Chemo, chemo, chemo! Do all you can to fight this ugly disease!