Any early stage women didn't take chemo?

hlya

Hi, Girls,



Are there any(or many) early stage women didn't take chemo with ER+, HER2-, Grade 2? What did your ONC say and why did you opt that? Also would like to know your age at dx?



My ONC didn't recommend chemo but ovaries suppression (or even removal) + Tamoxifen and she said it's almost the same effect as chemo in my case. I worry about it quite bit and would seek the 2nd ONC's opion, but would love to hear from your experience as well.



Thank you!



(PS. for some kind of reason I can't take oncotype test but my ONC said it would be low-midium level)

Firni

I did take chemo.  As you can see by my numbers, my ILC was caught pretty early.  My onc was going to give me chemo anyway based on my age.  He wanted me to have a better shot at living at least another 35 years. (I'm 53, 52 when dx).  He was going to just do something easy and light.  Whatever that means.  He did order an oncotype test because my HER2 expression was in question.  Onc was shocked when my test score came back 39 with a recurrence score of 28.  I ended up getting 6 rounds of TC.    Did you have a mast or lumpectomy?  Are your nodes all negative?  If you are really worrying about her course of treatment, do seek out a second opinion.  

hlya

Hi, Firni,

You said your HER2 was in question, was that 2+? My ONC said if HER2 is 2+ which means "equivocal" and needs to re-test. Did you retest it? Also what was your grading score? 6 or 7?



I had mast with no nodes involved.....

Firni

Lucky, My HER2 was tested by the FISH and IHC methods.  Both came up equivocal.  One test was 2.2 the other was between the range of 1.5 and 3.0. That was why my onc ordered the oncotype test.  To get a definitive answer.  On the oncotype my HER2 sore was 9.4 with 10.7 being the cut off to be negative.  My grading score is 6.

Seabee

Lucky--I (notoriously) did not take chemo because I scored low risk on the oncotype test. What is the reason you can't take it?  It is now available both for node negatives and for those with 1-3 positive nodes. I'd press your onc for a reason, because some oncs, like mine, have been slow to catch on to the fact that some node-positives can be tested. I had to request it. It can be very helpful in deciding whether or not you need chemo.

terricarolyn

I was diagnosed with early stage ILC in Dec 2005.   My onc also did not recommend chemo--saiid I would get the best protection from taking aromatase inhibitors since I was Er pos.  My oncotype score was 10---so that confirmed it in my mind.  You have to weigh the side effects---both long and short term--and to me a couple of percentage  points just did not justify it.  I was 58 at diagnosis.  Good luck!

Angel10

Lucky,

I was stage II, ER and PR+, HER2-, 0 nodes but had lymphatic invasive...and 2 types of BC: tubulolobular and invasive ductal carcinoma.  DX at 51 but still pre-menopausal. I am getting the Oncotype DX test but really just to confirm my decision to NOT have chemo.

I thought my onc presented his recommendation to do chemo in an interesting, maybe even in a disengenuous way." Chemo will reduce your chance for reoccurrance by 10% from 30% to 20%, the addition of Tamoxifen will further reduce it to 14%".  So then I asked, what is my chance for reoccurrance if I do Tamoxifen alone? He responded, "18-19%" so.....Tamoxifen alone is MORE effective than chemo alone and the addition of chemo to Tamoxifen bought me only 4-5% more....sorry not going there!

Unless my oncotype results show a HIGH chance of reoccurrance, I think NOT to chemo.

And I don't understand either why you can't do the Oncotype Test.  Call Genomic Health the company that does the test yourself....they are very helpful about the test, what it is, who should take it, etc. 866-662-6897.

Best of Luck!

Angel 10 

hlya

Thank you all!



Hi, Angel 10: Sounds like your ONC is not as logic as you? it sounds funny. I am confused by what my ONC said as well, she said Tamoxifen will benefit 6-7% to me and Chemo will beneift max.4%. But to me they have no big difference...seems tamoxifen won't beneift to me a lot either.....then what would benefit to me? hmmmmm

Angel10

Lucky,

What did your onc say was your overall chance for re-occurrance?

Angel 10

hlya

Hi, Angel,



She said it's 18% without any treatment, tamoxifen will reduce 6-7% and chemo will reduce 4%, which sounds no big difference to me.

I think those numbers are very rough guessing and just an average.

LauraLC

I was at the Breast Health Center at Kirklin Clinic, UAB today and discussed tamoxifen, chemo, and oncotype dx.  They again told me that since my ILC were so small, that it was caught so early, & b/c I had bi-lat. mast. they did not think tamoxifen or other chemo was needed.  My local onc told me the same thing.  But just in case I'm going to ask for the Oncotype Dx test to be sure I'm doning everything I can.  They keep saying that my prog. is excellent.

LoriL

Lucky A- I might be missing something here, but if Tamoxifen decreases your recurrence rate to 11% and chemo then further decreases it to 7%, you are getting a 65% reduction in the recurrence rate if you take both. That seems like a big difference to me! But, like I said, I might be missing something.

I meet with my Oncologist again on Thursday- will be curious what he has to say. The first time I talked to him (before surgery) he talked about just doing Tamoxifen and then considering chemo based on my Oncotype score (which I haven't gotten back yet). On ultrasound my mass looked to be 1.2cm, but the final path report showed it to be 0.8cm. So, I don't know if that might be a consideration as well.

hlya

Hi, LauraLC: Thanks! Your info. helps as well. Did you take lumptectomy or mast?



LoriBaby: Sorry I might not state well in my post. My ONC said without treatment, my recurrance rate would be 18%, tamoxifen would benefit extra 6-7% which the recurrence rate would be 11-12%, and chemo would beneift extra 3-4%. Hope it helps.



May I know where your grade came from? Nuclea? Tubules, mitosis? I would also like to know your ONC score as well when it comes back.. Our situation are very much similar, and I would probably take oncotype test as well and see whether I need chemo. I was told by another BC lady that sometime those tests are very confusing. High grade tumor got low oncotype score and low grade tumor got high oncotype socre. My ONC said grading is not as accurate/important as ONCOtype test, oncotype test should be a better method to judge the treatment.



Also may I know your age at dx? Thanks.

LoriL

Hi again!

OK, so I read the recurrence and treatment rates correctly. You would go from a 18% recurrence rate down to 7% if you did both chemo and tamoxifen. That's a pretty big drop!

On my initial biopsy report, my nuc grade was 3, mitotic 2 and tubular 3. In the final path report the mitotic grade was down to 1, and the other ones were the same. So, the overall score was a 7, which makes it a grade 2. That is another question I have for the oncologist- am I a grade 2 or a 3? :-). But, like your oncologist concurs, everything that I've read is that the grade in ILC doesn't seem to be as significant as it is in other breast cancers.

I'm 43- will be 44 in 2 months.

What kind of surgery did you have? I initially planned on unilateral mast, but then found out that the cancer (which I found myself) didn't show up on mammogram OR MRI. So, I felt like I had no way of knowing for sure that the unaffected side was truly normal. And, since ILC is more often bilateral, it just seemed like it was the right thing for me.

hlya

LoriBaby,



Ha, our situation become exactly the same now! After the surgery, my grading was 6 on the pathology report, and I pushed them to re-test my tumor for another excuse, but it comes back as 7 which is the same as your score! I asked ONC about it but she didn't really care about it - I don't understand why?? She also said sometimes the testing depends on the pathologists' judgement, different pathologist might give different judgement....hmmmm.... My husband joked that "seems your BC became more aggressive after leaving your body".... Your pathology report should be the most accurate, but I have 2 different pathology outcome, sounds funny huh? Also, I did the bilateral masts as what you did, one reason is besides ILC I also had LCIS(very small, wasn't picked up by MRI) , my surgeon recommended uni-mast, and I also worry about the word "clear margin". and I thought keeping single breast doesn't look good so I asked for bi-mast and she supported as well. MRI found some atypia in another breast but surgery came back as B9. Actually I thought if I didn't remove my good breast the chemo/radio would probably kill those atypia cells as well, and my ONC also thought it's too aggressive but that's just my personal decision based on my situation. And I had the surgery in May as you!! and I found BC by myself as you.



Could you tell me why grading to ILC is not as significant as other types of BC? I don't get it.



Also can we share Oncotype test result? When would your score come back?

Also, did your doc give your recurrance rate, with/without tamoxifen, chemo?

tabby

Lucky A:  My ILC was also caught very early.  I was diagnosed in Jan. 09 with LCIS (after biopsy I pushed for as I was not going to wait six months and watch calcifications).  The BS had to do another biopsy (or lumpectomy) to reconfirm and make sure nothing else was there at the site but she ordered an MRI first where a fibroadnoma was found in the same area.  I asked her to remove that while she was there and the ILC was found within the tissue of the fibroadnoma.  I had bilateral masectomies on May 7.  My oncologist says I can do chemo if I'd like but he recommended the tamoxifin.  I don't like what I see on the stuff and would rather remove my ovaries (my bs also would rather I do this as I had a lot of LCIS in the left breast).  The way the oncologist explained it to me was that I had maybe a 8 percent chance of recurrence at best.  The tamoxifin would cut to 4.  If I remove my ovaries it would cut it to 5-6. (I could also try the meds for post-menapausal plus do the IV bone enhancing drugs--that would give me as good or better result as chemo).  My Breast Surgeon (who I trust) said I should no way do the chemo as the side effects were not worth the pay off.  My best to you as you navigate your way through this nightmare.  (Oh, did the tissue expanders and have been fighting the infection--who knew this reconstruction thing would be such a pain in the behind?)

hlya

Hi, tabby,



Thanks for sharing! May I know your age as you said you are post-menu?



Haha, I didn't do any reconstruction right away 'cause I heard it caused lots of pain /problem from the forum here, which scared me......My husband doesn't support it at all as he doesn't want me to go through more pain - as BC women we already got so much pain in both of our body and mind. He said maybe someday when the reconstruction technologh is improved a lot, you could consider it, but not now.



BTW, I did my surgery on May 8, which was one day later than you.

LoriL

Hi Lucky,

I see my Onc. on Thursday, so I'll keep you posted. I'll be curious to hear what he says about recurrence rates now that I had bilat. mast (I originally was considering lumpectomy and rads). I wouldn't mind getting rid of my ovaries, too, if that decreases my recurrence rate and helps me to avoid chemo. I figure that they'll quit functioning soon anyway, so might as well get the "menopausal thing" overwith! :-)

I don't know why the grading is less important with ILC. I've read it several times in different studies, but I don't know why that is. Sorry!

I'm not sure how long the Oncotype Dx takes to come back. My surgeon made it seem like it was the Onc. that needs to order it, not the surgeon. So, it might not yet even be processing yet. I'll keep you posted! Are you on the Tamoxifen now? Any side effects?

Firni

Your onc is usually the one to order the oncotype test and it takes about 2 weeks to come back.  I've been on Tamoxifen for about 3 weeks now and the only SEs I'm having is some vag. discharge and some nausea in the morning.  I take 20 mgs at night before bed.  From what I understand tho, the SEs from the Tamoxifen don't really start showing up until you've been on it for 2-3 months.  So, we'll see.

LoriL

Hi Lucky!

Here is what my Oncologist told me today.... since my tumor was quite small (8mm), without lymph involvement, and considering I had bilateral mast, my chance of recurrence was about 6-8%. I will need radiation because there was some LCIS surrounding the tumor, which came within 1mm of one of the borders. Doing nothing more than radiation, my chance of recurrence is 6-8%. I have the option of Tamoxifen, which would decrease that chance of recurrence by about 2%. Chemotherapy would further decrease that by another 1% or so, depending on my Oncotype Dx score. 

So, as of right now, I will be having radiation, and then will be started on Tamoxifen. My Oncotype Dx score will be back in 10-14 days, and if it is high we may do chemo before the radiation. I don't know if you have heard of it or not, but we were initially thinking of enrolling me in the TAILORx study. But the problem with that would have been this: If my Oncotype Dx score was low (therefore no chemo needed), I would need to start the Tamoxifen within 2 weeks of enrolling in the study. He didn't want me on Tamoxifen until after I had completed radiation as he wanted any possible remaining LCIS to be "active" and not subdued by the Tamoxifen.

So, considering all this, at this point I have decided to NOT do chemo unless my Oncotype Dx score is high. If it is low or intermediate, the potential benefit just doesn't seem to be high enough. But, you know never know, I might change my mind between now and then! :-) I was really surprised to hear that Tamoxifen wasn't even an "automatic." I guess if I hadn't had a bilat.mast, that would be a different situation.

Good luck!  

tabby

Hi Lucky A!  I am 46 but I will be post menapausal if/when I remove the ovaries.  How are you doing?  I'm curious as to how I would be had I opted out of reconstruction.  It was the right decision for me, but it's no fun.  Sounds like you have a loving/sweet husband.

hlya

Hi, LoriBaby,



Our cases are almost the same! As my tumor extended to skin and the radiologist recommend radiation as well, although both my ONC and Surgeon don't think it's a problem, as my surgeon burned that area of the skin actually during the surgery, but I have to listen to radiologist's opinion as it's his area. I would be in that trial you mentioned, but I never heard the tamoxifen has to start in 2 weeks which will impact the radiation, weird......Your reccurance rate is much lower than mine even without any treatment, and seems tamoxifen and chemo don't benefit to you at all...1-2% don't mean anything statistically.

hlya

Hi, tabby!



One of the key reason I didn't do reconstrution was that I have to wait for PS's schedule to book the surgery which would delay the surgery a lot, but I couldn't wait at that time.....the radiologist told me lots of women don't have any problem with reconstruction although I told him I heard lots of reconstruction problem from internet....seems he doesn't think so..... he is the kind who supports women to do reconstruction, he said even I don't do it now, I should do it later....



How will you deal with bone loss as you are so young? That's the biggest SE to me from ovaries removal and my surgeon doesn't support it, and I am scared of hair thining as well....hmmmmm

TXBadboob

Hi Lucky

  I'm 46, and I had my BMX in Feb. with TEs placed.  The masectomy was the most painful part, but really not so bad.  There is a little pain with each fill, as it stretches your skin and muscle, but still not much.  June 2, I had my exchange for silicone implants and an oopher/hysterectomy, and I went back to work the next Monday-Wed part time, now back to full time.  Just a little soreness around my abdomen, I have no feeling in my breast area, so no problem there.

  I have been on Tamoxifen since March, and my onc will be measuring my bone density and has recommended IV therapy for this, as I am somewhat thin.

  Doing recon is a very personal choice, and after all we have been through, only we can decide whether to do it or not.  I hope you're healing well

Deen

hlya

Hi Deen,



Thanks for sharing your experience.



May I know why you decided to remove your ovaries instead of ovaries suppression injection? I am thin as well, do most of thin people have less bone density?

MaureenA

Hi Lucky,

I was diagnosed with ILC at age 58 and did not have chemo; had a lumpectomy and radiation.  My oncotype score was 16. No evidence of new disease yet, but very early.    I am beginning my second year on arimidex.  Thinking good thoughts for you.

Maureen

LoriL

Hi again Lucky,

Thought I would let you know that I got my Oncotype Dx score back yesterday, and it showed a Recurrence Score of 16. So, with that being considered low, we are going to stick with the original plan of no chemo- just radiation followed by Tamoxifen. I got tatoos and the simulation done today, and will be starting rads next week. I feel comfortable with this plan and it is nice to know that chemo wouldn't be of any further benefit for me. My chance of a distant recurrence is 8%, so I'm praying that I will be in the 92%! :-)

Rabbit_fan

Hi LuckyA,

I know it's been a while since you started this, but I thought I'd chime in just in case you're still looking for info.  I was dx at age 45 <1cm, no nodes, ER+, grade 2.  My first onc said I should have chemo based on my age and the grade 2, but I pushed for the Oncotype Dx and it came back as 11, with distant recurrence risk 7% that would be reduced to 4% with Tamoxifen, no added benefit from chemo.  My second onc said not doing chemo was a no-brainer.  I started Tamoxifen but am still mulling ovarian supression and AI.

Editing to say that I don't know where the reduction to 4% recurrance risk with Tamox figure came from - my doc gave me the results over the phone and he threw out a 4% number, but I finally got a copy of the test and it just shows that with RS of 11 and taking 5 years Tamoxifen, you have a 7% risk of recurrance.

glovie2

Hi - I had a bilateral mastectomy on June 19 with 9 lymph nodes taken from the side with cancer and 2 from the other side, and am leaning toward skipping chemo.  I haven't ordered the oncotype dx yet because I have been trying to decide whether to enter a clinical trial, which would pay for it but not give me the option to choose my treatment.  I suppose if I go ahead and get the test, I may as well skip the clinical trial, since I have not the figured out the advantage of being in one. 

hlya

Thank everybody for sharing your experience.  Sorry I have been busy with something else in my life and didn't access here a lot recently!

Lori: Thanks for letting me know and congratulations to you for skipping the chemo. My surgeon doesn't support chemo neither but I am still waiting for the result. 

hlya

Hi, Loribaby:

My score just comes back today - I start to be anxious now 'cause it's been 2 months since my surgery and I have not been on any treatment yet.   Anyway, the score is 10 so I will not take chemo as well, as you , and will start radiation ...as you... I feel much more comfortable now...as you,   My recurrance rate is a little big higher than you guess my tumor is bigger.  

Hope you and everybody here are all well!