If you were stage I, did you get chemo???

I have a lot of learning to do, but it's worth saying that grade is still used to determine chemo at some NCI-ranked hospitals.  At mine, if you had a grade 3 tumor, or lympho-vascular invasion, those were determining factors (along with the usual:  node-involvement, size, etc.) I had three reviews of my grade 3, all concurred.  You can always have your slides reviewed by multiple parties, it is well worth doing so.  I did by two separate,unaffiliated hospitals.  They both agreed.  From what I understand, grade 3 cells tend to be easier to determine than cells falling between 1 and 2.

I had multiple small tumors and was 31 years old. Oncotype came back 18. Due to age,oncotype intermediate range and multiple tumors, I did 4 rounds of TC.

Hi - I am a nay-sayer to chemo and will always be.  I don't want the life I saw patients "living" when they had gone through rounds of chemo and no improvement.  No there is an article in the "Cure" magazine that questions even the need to have an axillary dissection if one node is abnormal.  I had found enough info in the respected medical journals when I was being pressured to have an axilllary dissection and chemo, when there was a "woops" with the results of my node slide during surgery.  Suddenly the negative findings were called positive.  I pressed, with a lot of push back, for the actual size of the mets they said was now there.  Dr. Susan Love's book was saying that this is an important finding.  Mine was less than < 2mm.  From being a pathology student, the results weren't making sense to me but questions were not received well.  I said that I was not doing ANYTHING till I knew the size of the supposed mets.  The 2nd path said it was questionable cellular changes.  I refused an axillary dissection and chemo.  At the time they were pushing for chemo, I knew about two friends who had taken the same chemo treatment and now had heart damage.  The oncologist, who I didn't like any way told me that side effect is rare.  Well, it's rare if it doesn't happen to you!  I don't know that many people who have had BC and to see two long term survivors with serious heart complications made me doubt the truthfulness with the doctors as to the side effects.  You have to evaluate your available support network.  As a former medical professional, I know the support network you will need to go through chemo.  I did not have that in place with a recent move for my husband's job to a place where the medical care is just marginal.  Besides, the support that was there till I finished radiation has basically disappeared..  When asked why I won't do some volunteer activity and I declined, I was told, "well you are done with treatment now, what is wrong?  Well, do you have about 4 hours to tell you how bad I feel but cover it up on a daily basis, so I'm free to listen your problems, such as your shoulder pain from arthritis - try adding Tamoxifen to that problem!  I couldn't find an oncologist l liked or trusted in the required time period so I basically felt like, I'm going to die anyway, I'm going out in a way I can manage, and that does not/will never include chemo.  I saw too many chemo failures and deaths I wouldn't wish on a dog.  Since I was married to a veterinarian, I never saw a dog go through what happens to humans in the name of "treatment".  I'm not sure how you square what I know about human and veterinary medicine with someone who has experienced the end of life issues with both species.
 

Naysayer, what if this poster's Oncotype comes back 30?  Would you "always" say no to that,too?  No one said chemo was perfect or benign (though it's very important to note that the TC regimen has been a huge breakthrough for limiting long term SEs like heart problems). 

From this vantage, I'm really mad at my aunt's best friend who was node positive, had a family history, and refused it all.  Now, it's back three years later (no surprise).  She is going to die, perhaps 20+ years sooner than she needs to.  And make all of her friends suffer.

It's a personal choice, to be sure.  But when I made my decision, I realized I was doing aggressive therapy not just for me, but for my husband, and my parents.  They did all the research on pros and cons, and felt I must do it.  Perhaps asking people who really love you to do the research and assist with the decision may also be helpful.  My father, for instance, read many of the studies from his library database.

I don't pretend chemo is the "right" choice in borderline cases, but it was right for me.

I will pray for a low score for you. ... another thought... have you talked to you oncologist about what kind of chemo he would recommend IF your score came back higher?  Mine said he would have been fine with CMF... that regime "usually" does not have full hair loss (only thinning) ~ and supposedly less side effects in general... this made me a little bit less nervous while waiting for my score.

Oh ya, I was 37 at diagnosis.

Naysayer,

One would have to weigh whether the chemo actually afforded those extra years you saw in your friends who ended up with heart problems in the long run.  Is having a long run with heart problems better than a short one?  I know of way more women who did chemo that are alive and well and thriving than women who didn't do chemo and are gone.  None of us like having to make the choice to do chemo, some of us will do it even if it's just a few percentage points in our favor, some not.  The real issue is what our individual pathology discloses and what the best science is for treating it.  Of course, it would be easier for someone in early stage, grade 1, her/2 negative and no node involvement to skip the chemo.

Ladies - I'm a scientist first in any medical decision I make and chemo is included in that area.  I've had Master's level statistics courses along with courses in evaluating scientific research studies.  I was a research scientist evaluating test methods to improve the early detection of certain diseases.  I also benefit from being trained as a Medical Librarian (Master's level) at one of the leading cancer centers in the US - MD Anderson.  Several of my close friends work there now.  My husband is a research chemist who can probably figure out any statistisics issue better than the majority of the doctors you are seeing, though I seriously doubt that their ego would give him his due!  Doctors don't really have that many statistics courses compared to my area of concentration and certainly not that of my husband.  When the first oncologist started throwing around statistics, my husband got mad because he knew the guy was not using the absolute %.  He said to the doctor "liers figures and figures lie" and the Indian doctor didn't know what to say when asked to give my absolute % of improvement vs the general statement that "taking chemo improves your % by 30%".  I'm not going into the discussion with someone playing loose with the truth and "buying what he is selling"!  There is so much more going on that I typed in one response.

I was not going to ever take AC because I have previous heart damage due to a severe childhood episode of Rheumatic Fever.  There is no need for me to take Herceptin so it is an non-issue.  The treatment for Rheumatic Fever also left me with antibiotic resistant MRSA - 2 episodes in the last 3 years.  Yes, I want to be on something that is destroying my immune system!

 To me it is kind of like the boy who exposed that the king had no clothes!  Everyone was afraid to admit the fact.  I'm certainly able to do my own professional research on any medical topic as that is my area of concentration as a medical librarian with a Master's degree.  I feel like the comments here are those made by people who were afraid to admit the king had not clothes, e.g. the king is the oncologist or surgeon who sticks with the NCCN protocols and does NOT mention the other studies that are close to being accepted, such as the ones I have mentioned in CURE magazine.  Cure mentions the situation of too many (mainly women) patients needlessly being treated with chemo therpy that do NOT need to go to that extent of treatment.  What is wrong with bringling that issue up if this is truly as disscussion board and not just a rubber stamp for chemo.  I've already seen that another woman who decided that she did not want to "drink the Kool aid" was villified by many here.  I made the statement that my experience over a longer period of time that most have observed the administration of chemo, left me with a negative view of this form of treatment.  I also said that I have NO support network for intensive treatment.  What part of that is so hard to understand!  I don't live in an area where I have many friends and no family.  I have my husband - period!  There is also the issue of statistics.  If I have a 15% chance that I could have a recurrence, don't I also have a 85% chance that I won't have any thing more with surgery, radiation, and tamoxifen?  To me, that doesn't sound the same as someone's example her aunt not doing chemo and "of course it came back and now her family is suffering"  My cousin, whose line of family connection to BC is through her mother's side of the family, not by blood to me, is married to a doctor.  She had IDC with some positive nodes, lumpectomy, chemo, radiation, and 5 years of Tamoxifin.  She still how up with mets after doing all of that at 8 yrs.  Does she get more sympathy because she did chemo?  Will you with hold any feeling of sympathy for me because I didn't believe chemo was recquired and could cause serious health problems besides cancer.?  I have been trained to think and ask questions and not accept "this is how we've been doing it for 20 years.", especially when I see some pretty big cracks in the logic, of being accepting of a theory that has some pretty serious cracks in its foundation.  Read Cure magazine, hopefully available as a free subscription from your oncologist's office.  Don't belittle me until you've read the issues from the last year! - Kay

It took about 6 months before Anthem finally paid for my oncotype test. They kept asking for more information. It was crazy, but they finally paid. I don't get it when the test could save them a great deal of $$ if you score low and don't have chemo.

rcca

Guess what - I'm still here two years latter, when gloom and doom was all that I had in store for me if I didn't go along with the falicy of "insurance" the term used by the oncologist here.  There is no "insurance" and chemo should NEVER be presented to any patient, framed in that context.  It is an option to use, provided the doctor has been truthful with you.  Mine was NOT and that started it off very poorly.  This same wonderful oncologist is an owner in the clinic where I had been getting mammograms for 3 years.  They remodeled his office to a deluxe set of suites, possibly because he is an big revenue producing center for the clinic?  At the same time, they delayed implimenting digital mammography in favor of cosmetic remodeling.  The OB-GYN who had been ordering my mammograms sent me to the facility that was in their clinic, rather, as I found out later, to the center where I'm now going, 30 miles away, where they had digital mammography two years earlier.  This was where she had been getting her mammograms.  I had not had a call back or ever told there was ANY problem on a mammogram, so I wasn't worried and this same clinician had told me that she was recommending I stay on HRT at least one more year.  There is no real family history, so I was going along fat, dumb and happy that I was doing what needed to be done by getting mammograms each year.  No discussion of the benefits of digital mammograms, but obviously she thought there were some or she wouldn't have gone there for her own.  To show up with a 1.3cm growth, of low grade, when they did convert to digital, makes me wonder what they missed the year before.  For me to trust my health to the onocologist in this same clinic when there was a problem, really made me wonder about the profit motive in their practice.  I guess I'm not allowed to give any frame of reference to say that I do understand many aspects of statistics.  I negelected to say that I was also a pharmaceutical rep for 2 years so I know the games that are played with studies.  You've taken your drugs and I hope they serve you well.  I see that it does no good to go against the status quo because you are all right and none of the issues I raise are valid.  What I actually meant is that we in veterinary medicine to not put animals through the horror I've seen in hospitals, watching my own father begging for death.  Oh yes, that is the way I want to go out, with my loved ones last memories of me was hearing my screams.  If you haven't seen misery and death then thankfully you haven't seen what I've seen.  As I said, there isn't any discussion of alternatives, it's all just standard of care.  Of course I know what the standard of care has been in many medical situations over the years.  We have the right in this country to refuse any treatment that we are not comfortable with.  I am not telling some to go to Mexico and have a coffee enema for cripes sakes.  I'm saying that there is real science out there, questioning the use/over use of chemo and axillary node dissections.  You're not the person who will pay if I'm wrong by buying into this too soon.  I just want other women to know that they can ask questions and what they could be, because I still hear too much of a mentality of the doctor always knows best.  The frequently refer to Dr. Susan Love because she raises some good issues and taught me how to frame the statistical quesitons so Dr. Draino was getting away with the general statement, "chemo reduces your risk by 30%."  30% of WHAT????  Those of you who just said, "take the chemo" didn't suggest that she frame the question to get some real answers.  She apparently has doubts, how about helping her think it through, because maybe by asking some hard questions, she will get the information she needs to make a truly informed choice rather than just saying well, if the NCCN says that's what I need to do.... when maybe that is not the end all be all agency in her particular situation.  It's pretty worthless to call this a discussion if it is only accepted if we all agree.  Science has never progressed by accepting the accepted for any length of time.

Wow - Kansakay you are coming across as very defensive.  Plenty of stage 1 women do not need chemo.  Plenty do.  Each of us have very individual cases - as much as the docs categorize us into stages and grades - as a scientist you would know that it is not nearly this simple.

My oncotype was 23 - middle ground - so I happily did chemo.  44 at diagnosis, and with two young kids and as others have posted, would be much happier with the knowledge that I did chemo as the gray oncotype category is not known at this time if chemo really helps.  I really don't care. For me, I know I did all I could with the info. I had to decrease my risk of recurrence.  I feel GREAT.  LOOK GREAT!  Had no side effects at this point and don't expect to have any.  I did CMF which is very "popular" in my region.  It was very easy for me to tolerate.

I was put into chemopause, and the pause stuck, so I am on femara with quarterly estrogen checks by my oncologist.  With femara I am lucky that I don't have any noticeable side effects and have been on it for a year now. Like most of the women on here, I have no family history, and my only risk factor was having my first child at 32.  

My point is, Kay - I think we all support your decision.  For you this is what made sense.  The sense I get from  your posts on this thread is that you believe those of us who are stage I and did chemo "drank the Koolaid" because we are somehow less intelligent, or misinformed - or basing our decisions on FEAR not FACTS.  This could not be farther from the truth - I am very informed and very intelligent, as I believe most of us are.  I most often question authority, had multiple opinions and many doctors in my family that reviewed my case.

The question was - "If you were stage I, did you get chemo?????" and you can see many of us did, and many of us didn't- as I said,and you know it would be wrong to not use the oncotype to help us to make our decisions.

Hoping that all of you waiting for the oncotype get a low score!  

MDG, any news yet?  Thinking of you!

mdg

we all know how hard this is.  I wanted to comment on your concern about your son.  Kids actually take their cues from you.  My kids were a little older at my dx and we waited to tell them anything until the lumpectomy---and it took a few weeks for the oncotype to come in..... then we told them about the chemo and what would happen---

Truth is, not much happened.  I had my treatment (ACx4), was nauseous and tired for a couple of day, then went to work.... I did lay a little low on their school activities--but the whole thing took only 8 weeks.  I got a human hair wig and my kids, although they knew I would be getting a wig, could not tell it was a wig when I came home with it on.   

 I think my h and I were honest with them, but we also kept them on their schedules, etc. which made a huge difference-- we just tried to keep things as normal as possible.  My kids were 11 and 6--- and their view of cancer was entirely different--they both had classmates who had had cancer and had friends who had parents with cancer--- and they saw it is as completely curable... it was so very different from my childhood view of it when no one ever talked about it and the survival rate was very different.  

Your son will take his cues from you.... I think the anticipation of chemo is far worse than the actual experience.  And that is still (maybe) in the future--- first is the surgery-- have you decided on mastectomy or lumpectomy?

Your little guy will be fine...... and so will you.