HER2- PR/ER+ What decides Chemo?

Bern25

Hi everyone,

I Have been jumping around trying to prepare myself for my MO visit on Monday and I am having a hard time finding the info I would like to research before going in. From what I can tell it seems to be a hormonal treatment since I had a BMX and no node involvement. However, since my sister was DX'd at 36 and had a second reaccurance and major surgeries and chemo the second time around would that be taken into consideration? I started with DCIS and lumpectomy, they found another spot in same breast turned out to be IDC so I went with BMX. I was just wondering if anyone else has this same situation.  I am not real cool on the tomoxifin but I am not sure what other choices I have.....sorry so long....thanks for any advice....

mdg

We have similar stats.  I was 45 when dx last year.  My tumor is bigger than yours but I was stage 1, grade 2, ER/PR+ and Her2-.  I had an oncotype test done.  My score was 17 which is technically in the low range where they don't recommend chemo.  I did have lymphavascular invasion though.  That was significant enough for me to strongly consider chemo and do it. 

If you go the the NCCN website, you can see the treatment protocol.  I am on tamoxifen too and did a BMX. 

Read up about Oncotype DX testing and ask your MO about it in your appointment. 

Kadia

You can also ask your MO to run your stats through Adjuvant Online to show recurrence rates with, and without, various treatments, including tamoxifen. My understanding is that all people with ER+ tumors will be recommended tamoxifen or an AI (if menopausal).

peggy_j

You may be in the zone where there's no clear choice whether to do chemo or not.  My MO looked at tumor size (0.5 cm) and grade (grade 1), node status (0/3) and wide margins, and disrecommended chemo. But since I'm highly ER+ (and pre-meno) she strongly recommended tamoxifen. (FWIW, I was dreading taking it but after a 4 month adjustment period the SEs have calmed down) 

As others have said, the oncotype and Adjuvant Online can help. So could a second opinion. (though I've heard stories of women here who went to three diff. MOs and got three diff. opinions: definitely yes, definitely no, and maybe). Some docs will also consider your age. What I've heard is that anyone under 50 is considered to "benefit" more from chemo. (due to long life expectancy). Due to your sister's BC, has she (or you) been tested for the BRCA gene?  Good luck. I remember that weekend before that big MO appointment and it wasn't very fun.  If you can, I hope you're able to practice some "distraction therapy" while you're waiting--maybe go a nice walk or something. I'll send you good vibes.

Bern25

Thanks everyone for your responses.  I did test neg for the BRCA gene but being 49 and my sisters at 36 and again at 40 makes me wonder.  I am so thankful for this site and all you ladies on it that make this feel like I am not alone in this journey. I am heading out for some "distraction therapy". I hope everyone is doing well and gets a chance to get out and take their minds off all this. Best Wishes.

dancetrancer

How many mm of IDC do you have?  I know for under 5 mm if HER2- only Tamox is recommended,, due to the excellent prognosis for tumors this small.  

Bern25

Hi dancetrancer,

The IDC was at the 5mm mark with >75% or tumor forming glandular/tubular structure if that means anything. I am wondering if the 5mm can go either way.....ugggh....sooo confused.

kira1234

Bern25, I suggest you go to NCCN to see their recommendations for you. You can sign in as a patient or as a professional. As a professional there is more info for you.

dancetrancer

Hi Bern, 

Per the NCCN guidelines, invasive cancers < or = 5 mm that are er+, her2neg, node negative:  "consider adjuvant endocrine therapy".  

If the tumor is > 5 mm it says to consider the oncotype test to determine further treatment plan.   

If you are leaning towards wanting more aggressive treatment, you may want to ask your doc if the onco can be run since you are right on the borderline, and it would help you make a decision.

Otherwise, the national guidelines are saying consider Tamox only.

Sorry you are in a grey area.  It sucks.  Been there (still there, LOL.). 

Bern25

Hi Dancetrancer,

They said I qualify for the oncotype test so I believe that may be the topic of discussion Monday. I heard the test take weeks to come back and I was hoping for some answers Monday. I know the waiting is the hardest part for all of us.

peggy_j,

The SE's is what worries me the most and since I already had a hysterectomy 10 years ago but they left the ovaries I really don't know what to expect.

Thanks everyone for your help...

peggy_j

Bern25, for some reason, the SEs for tamox vary significantly by patient.  One of my friends, a 12+ yr BC survivor, had a horrible time; her MO said her SEs were the worst of any patient he had seen. In my case, I had some but they settled down after about four months, just like my doctor predicted. I remember asking my BS for her opinion on tamox and she said "Why not try it? You can always quit."  Afterwards, I thought that was the perfect surgeon's answer; they don't get many do-overs.  BTW, there are threads in the hormone forum on tamox SEs. As another member pointed out, keep in mind that patients who aren't having problems are less likely to post, since we often come here for support. (and there's a thread for women who didn't have many SEs). 

Bern25

Thanks Peggy_j,

After my appointments yesterday I still have no idea where this is heading. They are going to do the oncotype. All points were going to hormone therapy except when they factor in my age and my sisters age. I also didn't realize I had two different cancers in one breast. So another 2 weeks of waiting for oncotype but I am going for a bone scan and Dexa, plus they drew the bloods to see if I am in/near menopause. Thanks for all your help!!!

tohisglory

Hey, I was IDC 1.3 cm which was determined after they did a bmx, no nodule or vascular involvement.  I had an oncotype score of 23 which is right smack in the middle where two oncolgoists give you their recommendation and then you make the decision - JOY....Even though there is an Taylor study ongoing to people in the midrange oncogtype scores which will probably favor not being treated with chemo, I UNcourageously opted for the chemo and here is why. I'm 49, have two children under 10, I also work and just felt I had to throw EVERYTHING at this I could.  I just finished treatment six of CMF and have two left and I have to tell you, but for the first three days of nausea which some people are treated successfully for, and fatigue, I still worked, and thoroughly enjoyed every non-five-treatment days so it is doable.  HOWEVER, my first oncologist only recommended taxotere and cytoxan and that scared me but Sloan kettering in NY recommended CMF and it was a no-brainer b/c it's almost like chemo-light and felt beyond grateful that I had that option.  I'm a court reporter and TC  I think had the possibility of some finger tip nerve damage...how weird is that?  Anyway, pray and make you'll make the right decision.  oh ...I ordered a wig and never needed it...although I will have significant thinning after this treatment...but it will grow back..I'm also having my ovaries taken out during the reconstruction so will go on femara instead of tamoxifen..  peace....

Cindyl

 I came looking for the answer and find that you guys are confused too. My med oncologist tells me that the next step is up to me. I can skip chemo and go straight to radiation, or I can do chemo and then radiation, or we can run another test and see if it give us a better picture.

So, I  am waiting on the results of  the oncotype dx test to decide what that next step should be.  I had a lumpectomy on March 1.  They found two tiny tumors along with the 3 cm one.  So I guess if I'm going to be hanging around waiting, I'll do it here.  You all seem like interesting folks...

Bern25

Hi Cindy,

Welcome aboard...I am very new here but everyone here is great! You will find alot of support and answers.

I found this site on Cancer Diagnosis Stories about the oncotype testing, may be helpful.

http://www.genomichealth.com/OncotypeDX/PatientStories.aspx

Cindyl

Thanks, very interesting and informative!

Browneyes48

Hello,

I will be going for a BMX on May 18th, after a lumpectomy which showed 3 small areas of micro-invasion and unable to get clean margins so I am choosing this route, My MO says no Tamaxifen as benefit does not outway the risk and if lymph node neg no chemo, no rad.so I too am confused as all of you, I will however be taking all my results post BMX as well as the tissue samples to be re-read for a second opion, this will be the only way I can have some peace (if there is any with this dx).  I just had the braca test done and they said the sample was too small for onco-type. Thanks for being there as this is one scary ride

doxie

Browneyes48 - A 2cm tumor too small for an oncotype test?  No!  No Tamoxifen for ER+/PR+ tumor if you are pre-meno????  Is it low % and/or low stained?  Either I'm missing something or you need to see another MO for a second opinion.