Any early stage women didn't take chemo?

hlya

Hi, Girls,



Are there any(or many) early stage women didn't take chemo with strong 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)

jill323

Lucky - Hi.  Just so you know, you are leaving out a couple of important pieces of data here that make it difficult to "compare".    What was the size of your tumor and how old are you ?  Both of these are also factors in determining whether chemo is needed for treating certain kinds of cancers - but certainly not the only factors.   There are actually guidelines (NCCN protocols) that the docs follow to make a recommendation and/or to model your recurrence risk, and tumor size is one of the first factors within the protocol they look at. 

I also find it very strange that your onc says he knows the outcome of your oncotype test.   That is the first time I have heard that for a Her2 negative tumor.   Oncotype is based on about 22 factors that characterize the tumor - and true, while ER+ and Her2- will take the number "down" based on their algorithm, there are several other factors playing in here that have not been measured. 

I am thinking that the size of your tumor was relatively small, (which is good news!) - and in many cases a person with a small, highly ER+ and Her2- tumor would get as much benefit from hormone blocking therapy (like tamoxifen) as they would from chemo.    If it was really small, that would also explain why they might not be able to have enough to send for oncotype testing. 

In any case, do you have a tumor size somewhere in your pathology report ?

Jill

QueenK

I was ER+, PR+ and Her 2 negative.My tumour size was 1.7 MM (yes Millimeters) and I had no + nodes.Grade 2.

Due to the size of the tumour (I use that loosely) I had a 2-3% benefit for reccurance and overall survival.In other words,my onc said some woman would and some wouldn't.He was okay with me not getting the chemo..so i didn't and I am very happy with my decision.

Anonymous

LuckyA - There are many women with early stage BC that do not get chemo - the ones I know are on the "new" oncotype DX roll call list - that shows the oncotype score and there are many that are in the lower group and do not benefit from chemo.  Many of those women also list there age, surgical choice and other info.  You may be interested in checking that out.

My score, unfortunately was high enough that I benefit from chemo, but I am doing "lite" chemo which is very easy to tolerate (CMF). I was 44 at diagnosis. My onc. predicted that my oncotype would be high intermediate, and she was right.

A second opinion is never a bad idea if you have the time.  I think that many women in stage 1 do not do chemo and are fine.   Hormone surpressant is VERY important in ER/PR + tumors and my oncl said even with doing CMF the tamox. will be the most important defense.  

Trust your onc.  Get a 2nd opinion - I bet they agree and you will feel good about the decision.

hlya

Hi, Thank you all!





Jill, I am 42, the tumor is 1cm (the MRI shows 1.1cm) and my ER is +++, I think that's the reason why my ONC doesn't recommend chemo, I also did bilateral mastectomy. But I still worry about the doc's recommendation.



BTW, my insurance doesn't cover oncotype test and I can't cover it by myself which is too expensive.

hlya

Hi, aprilgirl1:



My ONC also said CMF = AC, is that correct? How is CMF better than AC? Less sick? less hair loss? or? I know nothing about CMF ''cause I saw most of people talking about AC or ACT...

hollyann

I didn't do chemo as my oncotype score was 11.........Lucky did you have node positive or node negative bc?........Lucky you should contact Genomic Health that does the test for Oncotype and see if they will cover it for you.....My insurance at first refused but then Genomic Health contacted them and they finally agreed and covered it 100%.......Genomic Health also said they would not charge me if my insurance would not cover it.........My tumor was a total of 1.6 CM And was ER/PR+ and Her2Neu Neg.........No nodes were involved....I had a bilat mastectomy with immediate TRAM flap pedicle recons.........I did tamoxifen for 9 months......Had a total hyst and ooph.......did Femara for about 4 months and could not tolerate the SE's...Was switched to Arimidex and have been on that for a little over a year now......Still have SE's but they are a little moe tolerable....I had just turned 44 when i was dx'd!......Happy Birthday to me!.....

fortunate1

I'm 61, which definitely plays heavily into the decision. Tumor 1.2cm, some DCIS too, mast. ER+, PR+, HR2-.  My onc was pretty sure I wouldn't really benefit from chemo even before the Oncotype test put me in the lower intermediate bracket. It was the same score range  (20.5)  that I figured would be chemo for me, but he convinced me it would be OK to skip it and go straight to Femara. Definitely a scary move, lots of "what ifs".

Insurance hasn't paid for my Oncotype test, lots of denials.  But Genomic health will write off a lot of it as I have a pretty crappy income. I am going to keep appealing, though, Aetna is misreading it's own guidelines, and it may matter a whole lot more to the next women in this situation. If you want the test, call Genomic Health, they're very friendly.

Anonymous

LuckyA - hollyann has a great point - if you want the oncotype, call Genomic Health about their help - they wil help fight your insurance company.  I found them really great to work with - they call you to go over the information, and I called them once to check status.

I will pm the chemo info to you - I don't want to hijack this non chemo thread!

I really think plenty of early stage avoid chemo for good reasons.  I, personally was very happy to have the oncotype to make my decision.  er++++ for sure will be helped with the hormone surpressing treatment.

hlya

Hi, Lucy and Aprilgirl,



I am not in US (I am in Canada) so Oncotype is not a standard here....so frustrated! Lucy, I don't have node involved that's why I said early stage....but I still worry about it.



I am also told that if I need 2nd opinion I need to go through my ONC to contact the 2nd ONC, but how could she recommend me to somebody who doesn't agree with her?.....

AlaskaAngel

At the time of my diagnosis in 2002 as a HER2+++ highly ER+, PR+, the only breast cancer spokesperson who talked about the possible (but uncertain) value of hormonal treatment was Dr. Susan Love. At the time I suggested to my onc (a very prominent west coast onc with 25+ years of experience) that at age 51, possibly having my ovaries out and then doing rads and tamoxifen or an AI instead of chemo+rads+tamoxifen would be the best choice. Unfortunately he would not give me good answers about it, and I eventually gave in and did CAFx6, rads, and 1 3/4 years of tamoxifen. At 7+ years out I have had no recurrence, but the cumulative effects of chemotherapy are enough that I very much wish I had done what I had suggested instead.

AlaskaAngel

achen2iron

Lucky A. I'm 44 and have multi focal but the tumors were very close together and the lumpectomy had clear margins. I'm in the big gray area when it comes to chemo. I thought having all the drastic surgery I did would get me a buy from chemo but my onc and bc doc both agree that the oncotype test will be the deciding factor. I don't think they really know what to do with us "young" early stage gals, I think they end up overtreating a lot of people to catch those few who really benefit from it, I don't know if that's such a bad thing. I think if the oncotype test wasn't available I would probably go ahead and do the chemo. Then if it comes back I would know I did all I could do to beat this thing. It's definately a hard choice though.

Good luck!

jill323

Lucky -

Thanks for all the clarifications.  Still got one more little confusion.   You said that the MRI stated it was 1.1 cm.  I take it there has been no surgery yet and that the Grade and ER/Her2 status came from a biopsy ?  I am asking because sometimes MRIs can real sensitive and "overstate" a case and you are literally right on the dividing line.  

Anyway, let's move forward with it being at least 1 cm.  The new NCCN guidelines state for a tumor that is greater than 1 cm that is ER+ and node negative, the "standard" course of action is a test like the Oncotype test to determine the need for adjuvant chemo.  The fact that you are in Canada explains a lot in that they are not as "beholden" (for lack of a better word) to the guidelines.  Also, doubtful that insurance will cover if the doctor does not agree to sending it.   I would paste the guidelines here if I could figure out how to insert a document.    You can PM me later and I can send you the guidelines if you think it would help. 

What does this mean?  My point of view, for what it is worth is that you are the "prototype" of sorts for the Oncotype type testing, especially given your relatively young age (anything under age 50 is "young" in breast cancer terms).   While I clearly don't know your case as well as your doctor, I have never seen a doctor yet that could "predict" the outcome of the Oncotype test based on what information you have given, although the ER+++ and Her2 negative will help bring the score down.   However, I have seen ER+++/Her2 neg. tumors still come back with relatively high Oncotypes. 

Accordingly, here is what I think I would do:

1) Ask your doctor to model out what each type of therapy (hormone blocking and chemo) "buys" you in terms of recurrence risk reduction, and what combined therapy buys you.  YES, they can do this.   I just went in and did it myself on Adjuvant, which most of the doctor's offices use.      This will force the issue a bit with your doctor as well and give you some data from which to make an informed decision.  (Just so you know, my quick little experiment with the limited information you provided showed pretty much what your doctor said in that hormone therapy and chemo separately " bought" you about the same amount in terms of reducing recurrence risk.  Combined, they gave you a bit more, but I also don't know if you are considering radiation in the mix).

2)  If your doctor is reluctant to do this modeling or explain this to your further, then ask for that second opinion. It is your body and your right to do so.   I would not worry so much about whether this second doctor was chosen by the first on not.  Their first responsibility is to the patient. 

3) I thought Holly Ann had a great suggestion in terms of seeing if you could approach Genomic Health to get the test run and what they could do to help.  I do know of other women who have done this.  But, you still have the issue of getting the doc's office to submit it.   So, would not do it until getting that second opinion.

This is a tricky case.  I hope this was helpful.  

Jill

Anonymous

Another thing to pursue would be to investigate participating in the TailorX trial.  I'm pretty sure that they are still accepting people into the trial - the first step is to get an oncotype DX test - the scores for the intermediate group that are being studies in the TailorX trial are broader than the Oncotype DX intermediate scores (the tailorX trial includes the top end of the low risk group, and the bottom end of the high risk group as the group that they are studying). If your score falls into the study group you would be randomized to receive chemo or not  - it would be up to your oncologist to determine what chemo cocktail you would have.   People enrolled in the study are followed for 20 years. 

Doreen 

buffy

Lucky, I would trust your onc as long as you are comfortable.  Sounds like you had a low grade, no node involvement, ER+, Bil mastectomy.  I too had a very similar outcome as you, double mastec, no node, stage 1.  I did not do chemo, but am taking tamoxifen. It will be 2 years in August and was dx at 47.  I have a good friend who is a pathologist, and she informed me that if your cancer was LOW grade, histological and nuclear, chemo would do NOTHING to the cell if there was one floating around in your body, chemo goes after cells that are more deformed and distinctively different then normal cells.  She did advise that tamoxifen is an incredible drug and would kill any ER+ cancer cell by starving it if one happens to be lurking around.  She said to look at that as an insurance policy.  There are no guarantees with anything, just have to go with the recommendation and your gut.  People that have chemo have recurrences, as well as those that didn't, you just never know.  trust your heart....good luck!  

hlya

Thank you all so much!!! I wrote down some important info. from you girls which really helps me to talk to the doc or call somebody.



Buff: My grade is 2 not grade 1, but the Mitosis Count is 1, is it the reason why my ONC thinks it's low grade?

jill323

Lucky - It appears you are Stage 1 (which is early stage) and grade 2, which is "medium" grade.  I know it gets even more confusing.   Grade 2 is also called "moderately differentiated".  

What Buff says is correct in that low grade (i.e. grade 1) generally has less effectiveness with things like chemo given the tumor cells relative "simiarity" to normal cells.  However, grade is determined by three things - 1) how close the cells look vs. normal cells, 2) how close do the cell nuclei behave relative to normal cells, and 3) how fast they are dividing (mitosis).    In just looking at the math, if you are mitosis was 1, then at least one of the other two parts had to be a three .    The three scores together add up and make your "grade".   So.. look for something on the pathology report called Bloom Richardson or Nottingham score.  It will likely be a 6 or 7 for grade 2. 

I also agree that Buff says to go with your onc. as long as you were comfortable.  I was just sensing that you were not comfortable.   And while we pay our medical professionals to do what they do, I found out the hard way that you have to be your own advocate in this game.   (I had two doctors that were at extreme polar positions- which was not helpful- and had to work to get them to roughly the same place).   So.. arm yourself with as much information/understanding as possible, talk to your doctors and make informed choices.  In the end, some times the choices won't be as clear cut as we like, but they are yours to make. 

 Good luck. When do you see your onc again ?

Jill

   

hlya

Jill, My grading is 6 on the report, nuclear 2 and another one is 3. I actually didn't understand what nucleus and tubules meant before I read your post, Thanks! May I know what " Nucleaus - 2) how close do the cell nuclei behave relative to normal cells" actually mean? BTW, how old are you then?





I left a msg to my ONC secretary yesterday and today they called and said 1), my ONC would re-look at my path report , 2) there would be a conference this Friday and she would bring up my case to other doctors and seek their suggestion, then next Monday she would give me more info.....Before I called them, she gave me some documents to read and asked me to make decision in 5 days which was so hard for me!!

jill323

Hello again, Lucky !

OK.. good... we know for sure the grade, which is 2.  Basically grade is a measure of how "different" the tumor cells look and behave vs. normal cells.   I was being a bit generic this morning so as not to get into too much cell biology - which tends to excite us science types but gives other people a headache.  But, since you asked, I will get a little more specific.

Basically, when a pathologist looks at a tumor under a microscope, s/he looks at 3 features when determining a cancer's grade: the frequency of cell mitosis (rate of cell division), tubule formation (percentage of cancer composed of tubular structures - more is better), and nuclear pleomorphism (change in cell size and uniformity).  Each of these features is assigned a score ranging from 1 to 3 (1 indicating more "similar" and 3 meaning "more different").    The scores of each of the cells' features are then added together for a final sum that will range between 3 to 9.

In your case, your mitosis score was 1, which means it was dividing at a rate similar to "normal" cells.  The tubule score was 3, which meant overall your cells were not comprised of a lot of tubular structures (less than 10%) - this means they were very different from "normal" cells.  The nuclear score was 2 which means there was a moderate amount of change in size and variation of the tumor cells.   Your overall score was 3+2+1 = 6.  A score of 6 or 7 is considered Grade 2 or "moderately differentiated".  

Whew.. I hope that wasn't too painful. 

Anyway, as to your other question, (which is easier), I was 43 at diagnosis.  My case was a lot different than yours in that I had two doctors at extremes.  I had a very small tumor (about 0.5 cm), but it was a mean, nasty sucker.  Highly Her2 positive, and in my case, the Oncotype was predictable.  It would be high based on the amount of overexpression of Her2 I had (FISH ratio of 10) and the fact I am only very weakly ER positive.  Genomic Health even confirmed this for me.   To make a long story short, I had one doc that wanted to only treat the characteristics of the tumor (and my age) and whack me with a very rigorous course of chemo and a different doc that only wanted to treat the size of the tumor and do basically nothing.    I ended up working with both of these docs, plotting out recurrence risks, etc.  and we ended up somewhere in middle.  I did 4 rounds of what I call "lighter" chemo in order to get the herceptin needed to treat the Her2 status.   Interestingly, studies that came out after my decision basically confirmed the choice I made in terms of treating even small Her2 tumors positive with systemic treatment.   That made me feel a lot better.

Anyway, that is the sordid story.  In your case, it does appear your doc is second guessing herself a bit and getting some other eyes on your case.  That is good and somewhat typical of cases that can fall in the gray areas of the guidelines.  

The only thing I am still not quite sure of is whether you have yet had surgery or not ?   I would be surprised in your case if they were considering neo-adjuvant chemo (i.e. chemo before surgery). 

I hope this was helpful.

Jill

hlya

Hi, Jill,



I called the Genomic Health in CA and was told all international patients have to pay the test from their own pocket, so they actually can't help me...:( ....they also suggested me seek help from my doctor, so sounds like my doctor is the only resource I could seek help from. I will see what she would tell me on Monday.



Also, I already finished the surgery which was bi-lateral masts, my ONC actually thinks it's too aggressive as well, but my surgeon highly supported me to do it. But my surgeon doesn't support me to remove ovaries but my ONC supports it, it's such a confusing thing!



Jill: May I know how your grading came from? nucleaus, mitosis, and tubules? I am guess your tubules score should be 1 or 2?

jill323

Hi, Lucky -

Bummer about the Genomic Health angle.   But, I am glad you tried.  Nothing ventured...

In reality, your type of case is why they invented the darn test to begin with - to guide women who are kind of in that gray area as to the benefit of chemo vs. the risks.    

As for the docs - man..your situation brought back a lot of memories.  I had the same thing - docs not agreeing and throwing opinions at me.   This is one reason I had to become my own advocate - to sort through this mess.   So... like I said, get as much info as you can to make an informed decision, but never forget it is your body and your call in the end.    Oh.. and one other thing I have learned is to NEVER second guess a decision you already made.   Does not help one bit as there is nothing you or anyone else can do about it.  So.. guess what?  The biltat was the right choice for you. 

Now... one more dumb question.  If you had the surgery, I am assuming you had a post surgery pathology report.  What was the size of the tumor reported in pathology report ?  I am asking because earlier you gave the size based on an MRI reading. 

As for my scores... you will be happy to know they were exactly the same as yours... Tubule formation = 3, Nuclear =2, and Mitosis = 1.    Total score was six for a grade of 2.   The variable that threw a monkey wrench into everything was the Her2 overexpression - AND that my ER/PR was "essentially" negative.    If I had been highly ER positive, there would have been a chance I would have opted out of chemo despite the Her2 situation given the size of my tumor.  But, alas, the stars did not align there.  

Let's keep talking if it helps you.

Jill   

anne26

I was diagnosis with stage 1 IDC, no chemo but hormone therapy, I was premen so I opted to have ovaries removed. I was reassurred that this was the best option, and my risk is low for reoccurrance,  my oncotype wqas very low. I know that not getting treatment can leave you with lots of doubts. trust me I have been there, I am breast cancer nurse inaddition to a patient, so I understand these feeling and issues. If you  cannot get beyond the doubts, get a second opinion, you need the peace of mind.

hlya

Hi, Jill,



I still don't really understand what Tubule and nuclea actually mean? to be honest....seems most of grade 2 women get these 3, 2, 1 like us.



Anne: Wow, as you are a BC nurse you should help us a lot. What's the grade of your tumor? I worry about bone loss as a premen women, does zometa help a lot?

u2fan7

LuckyA- I am an early stager who did not do chemo.  I am er+ (90%) and her2+.The reason I didn't do the chemo was because my invasive focus was only 2MM and my gut instincts were telling me that hormone therapy rather than chemo/herceptin was the right thing for me. I started tamoxifen on May 15 and so far I am tolerating it well.   

Makratz

I was 42, IDC 9mm, ER/PR+++ HER- grade 2 Oncotype 15.  No chemo recommended. YEAH!!

Best of luck to you.

London-Virginia

Hello ladies - many thanks for this informative thread.

I wonder if you might guide me a little.  I am post menopause.  Due for lumpectomy 24 June. (and will also have breast reduction at same time so both match).

 I am not quite clear why many people who look to have similar stage/grade etc to me have mastectomies?    I probably should have been able to work this out by now - sorry for being a bit dim!

 At my last appointment, there seemed to be some backing off from the discussion about chemo. I had rather resigned myself to it but wonder if I might escape it.

Any thoughts?

Hope you all have a restful and happy weekend

Makratz

Hi London,

I've wondered that many times too.  My dx is almost the same as yours.  I think some people just feel better knowing they no longer have breasts and the worry factor is reduced alot (for recurrence).  Others have node involvement and I'msure there are a ton of other reasons. 

As far as escaping chemo, you should wait until you get your pathology report back and educated decisions can be made.  You may also want to ask your doc about the oncotype dx test.  That was the deciding factor for me NOT to have chemo.

Sorry you had to join us but glad you found us for help and support.

jill323

Hello, London !

Makraz is right.  Although the statistics for mastectomy and lumpectomy are identical in terms of recurrence risk, many women opt for the mastectomy due to personal comfort level and the peace of mind that it gives them.  Simply put... removing the ground for recurrence feels better than removing part of it for many women.   Some other women in your situation may not have a choice due to location of the tumor as well.

In case you are wondering, I did go the lumpectomy route, and my doc removed a good portion because the DCIS portion of my tumor was much larger than the IDC portion (although the chemo I took was because of that part).    I got very clear margins, which gave me confidence she got it all.   I found this a relatively easy surgery to bounce back from - the node removal actually gave me more problems.    The stats for my case show that the result I would get in terms of recurrence risk were identical as if I had gone the mastectomy route.  But, there is no wrong or right answer on this.   Your personal comfort level will play a lot into this.

As for chemo... get the surgery and let the pathologists determine what is happening for sure.   From there, they can determine a course of action.   But, I suspect an oncotype test may be in your future.  

Good luck, and I hope this was helpful.

Jill  

Makratz

Jill,

I agree, the SNB was much more uncomfortable than the lumpectomy.

MarieKelly

LuckyA wrote: My grade is 2 not grade 1, but the Mitosis Count is 1, is it the reason why my ONC thinks it's low grade?

The reason your Onc might think it's low grade might be due to newer research which is showing that many grade 2  tumors, when analyzed at the molecular level through gene expression profiling, are found to actually behave more like either grade 1 or grade 3. In other words, they're thinking that histological grade 2 really doesn't exist and doesn't provide very accurate prognostic information because a 'closer look' will show these grade 2's are really more characteristic and similar in behavior to either a grade 1 or a grade 3.  It's very possible that eventually, there will no longer be breast tumors graded as a 2. 

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=123848&ProduktNr=224272&filename=123848.pdf 

On the 3rd page of the link above, you'll find a graph that visually demonstrates these findings.  The fact that your tumor had a low mitotic count might be an indication as to why your oncologist thinks the tumor is low grade and would result in something other than a high score on the oncotype test.  As I mentioned, some histological grade 2 tumors behave very much like a grade 1 and others like a grade 3 and this research helps to explain why some of those with a grade 2 tumor, despite have otherwise very similar stats to others with the same, can end up with extreme differences in oncotype scoring. This information is not new news, so surely by this time your onc knows this.

prayrv

MarieKelly,

Sounds interesting!  I'll have to pull my path report and compare #'s and see what my might behave like.  Hopefully more towards the grade 1 as my oncotype was 12.  Will be interesting to compare.  Thanks for the link!

Trish