Should I have chemo?
I am beyond confused! I'm a stage 1 bc with 5 neg nodes. My tumor was extremely small - 7mm and all of my doctors mentioned that they would be extremely surprised if I would have to have chemo. I received my Oncotype Dx today and it came back at 26. My onc is recommending chemo [and wanted to start me today], but I decided to hold off for a few days. I really don't know what to do. He feels that it's the best thing because I'm 42 years old and it reduces the chances of cancer by 8.5%. Is it worth all the risks and putting poison into my body that may just cause more damage in the long run? My surgery turned into a 13 hour long surgery - I had a mastectomy (after 2 failed lumpectomies), with immediate reconstruction. Due to the length of my surgery I developed a clot in my lung and has added complications to taking Tamoxifen. Has anyone had to make this choice and are you happy with the choice you made?
Comments
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I did not have the oncotype test because I had grade 3 triple negative bc. I was node negative but still had 8 rounds of chemo. Did your oncologist explain what an oncotype score of 26 means? What chemo did your oncologist recommend? I suspect most people here at your age with your oncotype score had chemotherapy.
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This is a personal decision, but I would get the chemo...better to throw everything at it out of the gate and not have to second guess decisions you make now later on. Even though I didn't have a choice in it, they needed to shrink my tumor in order to have a lumpectomy, it's the decision I would have made if I had a choice. I wanted everything they had...including radiation. Didn't want any what ifs haunting me if it came back later on....five years later still cancer free.
Chemo is different for everybody and, while not easy, it was a lot different than I thought it would be...it was all about the fatigue. I had no nausea due to the excellent drugs they have now to prevent that.
It's important you are at peace with whatever decision you make. Best of luck to you, cvixen.
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Hi there, cvixen!
As gsg wrote, this is a very personal decision and one that I had to go through myself.
My oncotype test came back at 21 - chemo gave me a 3-5% better chance. It was the most agonizing decision I have ever had to make and in the end, I waited too long. By the time I got the onco test back, it was 12 weeks since surgery. It took me another 4 weeks to make a decision (they like to do chemo within 8-12 weeks of surgery). I did sooo much research on the pros and cons, and coupled with my home situation, I decided not to do chemo. I really think I did too much research.
Chemo doesn't work on everyone, your cancer cells have to be actively dividing at time of infusion or it doesn't do any good, it only works for maybe 1 out of 10 women, secondary cancers, chance of neuropathy, blah, blah, blah.
I didn't feel good at first about my decision - felt I would always be looking back over my shoulder and I felt quite sick about it - probably should have bit the bullet, but there were personal reasons why as well as logical ones. Anyway, I went to a naturopathic doctor who specializes in cancer and started out on a more natural regime. I now feel much better, much more confident. Who knows if it will help, but it makes me feel I am doing something so I am finally at peace. Am also having radiation done as we speak.
In your case a score of 26 is very close to the score when chemo is highly recommended. Plus it has a chance of benefitting you 8.5%. Yours is a tougher decision than mine was, but if my score had been a little higher, I would have been taking chemo. Again, this is a very personal decision. If you have good support at home, that will make all the difference.
Take care of yourself and all the best!
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cvixen,
As everyone else has already said, this decision will come down to what is right for you. I can tell you that my Oncotype score was 22 and I was 44 at diagnosis with a grade 3 tumor. Two oncologists recommended chemo. All of these factors play into the chemo recommendation. In the end though, I knew that I had to do all I could up front otherwise I would not be at peace with myself.
I wish you much luck with whatever you decide.
Sherrie
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I had an Oncotype of 24 and a 9mm IDC, neg nodes. I decided on chemo because I wanted to do everything possible to prevent recurrance. I do not view chemo as a poison. I view it as a medication that has bad side effects (had AC, bearable). I also had a bilat MX and am on Arimidex.
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Hi
had a 27 on the oncotype, pre menopausal-- decided to do 4 rounds of AC with the support of oncologist and surgeon. Their argument was "why not make a good situation better". In my case, the chemo dropped my recurrence rate to about 8% (I think).
I also could not take tamoxifen so I am on lupron shots to shut down my ovaries and femara (because you have to be at least in chemical menopause to have the femara be effective, same for arimidex) If you want more info on that, just let me know.
I was 48 with 2 young kids, so I just went for it---- it was tough, but not terrible-I worked throughout most of it..... I think the hair thing was the hardest--but the good news is that it is all grown back now--look pretty much like myself......
I decided on the chemo because I knew I was reasonably young and very healthy so I could withstand it and I never wanted to have to do this again--there are no guarantees, but that decision has let me sleep very peacefully every night since..
all that said, it is hard. I would suggest that you think of chemo as a healing agent instead of poison... our thoughts really influence us... I thought of it as "PacMan" racing through my body to pick up any potential stray cells......
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I am waiting for my onc type dx results as well and hopefully that will tell me whether or not I have to do chemo. I also seem to be "in the gray area" re. need for chemo. I am worried that I will make the "wrong decision." Is chemo really as bad as I have heard? I must do the radiation though.
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HI, I had only a score of 17, but because I could not do rads (prior bc in the same breast) I had chemo and mtxmy and recon.
am on arimidex, had an ooph/hyst to lower risk further. 3 years and no recurrence.
good luck to you whatever you end up doing. It's a per sonal choice. I felt fine (did CMF) no nausea, some tiredness, no hair loss, tho it thinned. I did pack on some weight from the steroids, tho, ugh.
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Can a person "max out"on radiation?
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You can see my stats below. My oncotype score was 17 which is the highest number in the low range. I am 45 and have a 4 year old son. The one thing on my pathology report that scares me is that I had angiolymphatic invasion listed as "present". This means despite clear nodes, my cancer had a pathway to spread via blood. We don't know if it did or didn't for sure. I was also grade 2 which is in the middle....not aggressive and not slow growing. I got 2 opinions. One onc said no chemo and the other said they feel there would be benefits for me with chemo. I had to make a choice. I chose chemo. I also chose to do Penguin Cold Caps to keep my hair to make this easier on me. I started 4 rounds of taxotere and cytoxan on 3/2 and am half way done now. I still have my hair. So far the chemo has not been that bad. I had a few rough days one the first round of chemo but did not miss a day at the gym working out. I did much better this second round with no real aches or pains...worked out 5 days a week, no days in bed at all either. I am also happy to report I am half way done with chemo and still have a full head of hair. I have gone out with people we know that don't know I have cancer at all (we have not told everyone) and they have no idea since I still have hair and all.
This is a tough, personal decision. I knew that I had to make a decision I could live with with no regret. I wanted to do everything in my power to try and kick this now and for good but know there are no guarantees. Good luck with your decision. Feel free to PM me if you have questions about my chemo experience or anything.
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I just saw my onco for the first time last week. He has sent my pathology for oncotype and I get the results on April 19. He has already told me that he strongly recommends chemo for anyone with a score in EITHER the high or intermediate range, if she is on the younger side. He considers me "relatively young' since I am 52 (yeah, I love that man!). I have already decided that if chemo will improve increase my chances of long term survival to 3% or more, I am going for it. We have 2 young adult sons in college and an 11 y/o. I want to do everything I can to make sure I am here for all the college graduations, weddings and to enjoy any grandchildren! It is a personal decision for you, but I am just sharing my thoughts for whatever they're worth.
Good luck to you and lots of prayers for your wisdom!Nancy
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There are a number of factors missing from your profile that would be used at my hospital to make the decision. My hospital factors:
Grade
Size
Lympho-vascular invasion
Cancer type/Hormone Status
Node Status
Age
And the question is also whether your multiple surgeries were to obtain clear margins.
I had a low Oncotype score (12), however,due to my age (39) and grade (3) my doctor recommended chemo. I had a wild journey: second doctor at (non-NCI ranked hospital) said "no chemo" then third doctor at the most famous research hospital in the country said "we just don't know, you are right on the edge of Tailor X trial info being made available."
I did chemo. I don't know, and probably won't for some time whether it was "the right thing to do". What I do know is, women with lower grade and a score in the intermediate range tend to go for chemo, and tend to be encouraged by multiple doctors to do so.
My doctor felt that in the grade 3 environment the oncotype was less predictive. And, in young survivors, not enough study had been done about its accuracy.
I am as happy with my decision as any intelligent cancer patient could be knowing full well the treatment choices are not always clear cut, but it is the best we have at this time. I'm in chemopause, not sure if I'm thrilled with that. I'm on Tamoxifen and doing fine. Other than some hot flashes and still thinned eyebrows, I am even better than I was before diagnosis with a new approach to self-care.
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Seems like a no brainer. An 8.5% decrease in risk of recurrence is huge. Kick cancers butt and do it. Chemo is doable. You won't regret the peace of mind.
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"An 8.5% decrease in risk of recurrence is huge."
I agree. Who wouldn't take that?
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I agree. 8.5% would certainly persuade me. Do it and know that you did all that you could do.
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None of my doctors ever even mentioned an oncotype test. Is this a common test that should be done? Now I'm worried.
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CarlyC- oncotype is usually primarily for none negative, er+ it is never done when nodes are involved and HER2 usually is a high score so they dont bother doing it. it is to determine if chemo is warrented for people wihtout lymph nodes. hope this helps
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Thank you, that clears it up!
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Cvixen, this is a very personal decision. These boards tend to be very pro chemo which I think you need to be a little cautious of. I think you need to be careful and read and listen to some of the down sides and see how you feel about what it would mean to have long term permanent side effects. Most do fine, but, some don't and you need to really think about how you would feel if you ended up with heart failure or permanent neuropathy. On the other hand, chemo is a year out of your life, but, the constant worry and risk of recurrence is the rest of your life. Good luck, just remember it is your decision
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Like most have said here it is definitely a personal decision based on so many factors. My Oncotype just came back yesterday in the mid 20's and chemo is being recommended for me. My MO tends to prescribe it for anyone who comes out in the intermediate range under the age of 55 with grade 3 tumors and I fit the profile. The treatment plan is for 4 treatments of Taxotere and Cytoxin, spaced 3 weeks apart so I will be done in 9 weeks give or take. I figure 9 weeks of my life is worth it in order to have a much greater chance of being there for all the college graduations, weddings and any future grandchildren! Let us know what you decide to do.
Nancy
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Nancy, that 9 weeks ended me in the ICU as my PCP keeps reminding me "you almost died" and forced into changing careers because of the debilitating permanent neuropathy. It really wasn't until after that my Onc told me to expect 9 weeks of chemo and a year of recuperation and after 2 years you'll know what is permanent. Which was my point, I worry about someone being told this decision is a no brainer. I'm happy to know how much I decreased my risk of recurrence, so in a way I'm glad I did it. I want to see DS grown and happy, maybe grand kids some day etc. But, there are days when the effect chemo had on my quality of life makes me realize that if I had truly known how things would turn out that I probably wouldn't have done it. I have a friend who went through this a year ahead of me, she did great, recuperated completely, and would do it all over again. You just don't know going into it if you're going to be in the small percentage who really takes a hit and I really worry about how often people aren't told that when making this decision. I'd give anything to be able to do something as simple as pick a pill up off of the counter, put in my ear rings, walk a block without having to watch my feet, anything to do those things again, even give up a few years of life. I do realize most would think that statement is crazy. I just worry about people not realizing what a big decision this is. It really is a hard and persona decision
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Happened upon this post while on Google making the same decision. I asked my oncologist to do the Oncotype DX test even though I had 1 positive node because I am 95% sure I will not do chemo. Yes, most people on this board seem to be pro chemo but I am not one of them.
If anybody out there is on the fence with this same choice I suggest you read this:
Most of it makes sense to me although there are a few questions I had after reading this. I also don't feel 8.5% is enough of an increase to put chemo into my body. If the docs could give me a 100% guarantee that this crap would never come back I would highly consider it. I plan on following a better nutritional plan and praying for the best.
But everyone has to make the choice that best suits them. I am 56 with 2 boys in their 20's so I'm in a different place than those with young children.
God bless whatever you decide is best for you.
Denise
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I'm 47, 2/6 nodes and IDC which is a little less aggressive then the ILC (or so I've been told). My Oncotype was 22. I don't care if my kids are 13 and 9 (as they are) or 25 and 21 (which they could be). I've been married almost 27 years and NEVER want to tell anyone of my family and friends that I didn't do all I could. I'm not saying chemo was an easy decision... it wasn't. It took me 2 months to even do my surgery and then another month of painstaking research (I am a researcher) to compromise on my TCx4 and not TACx6.
I have to say that although this treatment isn't easy TCx4, is chemo light. My children are proud of me, my family is by my side and I look like a million bucks. I was very healthy going into this and I can now tell others that they too can do it. I will rock bald when it comes next week and I'm pretty happy about the 5 pounds I lost this week eating only small meals.
Read, Plan, Prepare and then kill any little MF cells that are left over floating around!
Good luck to all in their decision process!
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I am 26 and dxed with stage 1 BC one month ago. I decided to do a nipple sparing, unilateral mastectomy to avoid the long term effects of radiation at my age (was not an easy decision). I am ER/PR +, no lymph node involvement, clear margins, and no lymphatic/vascular involvement. That said:
So my oncotype came back today at 14. My MO suggestion was to do Tamoxifen for 5 years and did not think chemo was neccessary. My reoccurence rate with doing soley the hormone therapy was 9%. Doing chemotherapy combined would bring it down about 3-5% more. I want to do everything to bring it down to the lowest number without compromising my health. At this point it appears that chemo isn't in my favor. The side effects seem to risky, but I just feel like I want to do everything..I am so conflicted. I have no children and would like to someday. Doing chemo would obviously cause a huge road block in this. Fertility is my main reason for NOT wanting to do chemo..I don't know. I know the numbers are so low and they are in my favor, but it is hard to believe that when I got BC at such a young age and my risk for getting it was like 2%...
It makes it hard for me see such "low numbers" as good when the numbers for having breast cancer were in my favor already. I don't know. I just keep going back and forth. I know the MO is saying it is safer not to, but how do I be sure?
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Hi,
I am interested in what you finally decided about chemo and are you happy with with your breasts after direct implant?
I would appreciate it if you would share. Thank you.
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I am stage 1 grade 3 with no nodal involvement and clear margins. BMX with immediate reconstruction. My oncotype score was 23 and my husband and I along with my MO decided to go for 8 rounds of CMF chemo rather than 4 rounds of taxotere as I have to work while undergoing chemo.
I developed blood clots and am on Coumadin until chemo is over.
My MO said it but my chances by another 5%. We decided to throw everything that we have at it now in hopes that it would catch any rogue cells in my body and knock them out.
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Hi , can you explain why you had a mastectomy when your tumor was so tiny? Did they recommend that?
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My number was 34 and I chose no chemo. They are keeping a close eye on me. So far so good.
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I have learned that tumor size is not the entire indicator of the severity of the cancer. I have a 1 cm tumor too and I am having a BMX in April. It is the biology of the tumor, or what is driving it.....I am told. Tiny tumors can be more aggressive than larger tunors......so I am told. I also am going to need chemo since my Mammoprint score for probability of return was high. I was shocked with the news and had sort of decided on a lumpectomy, but all that changed with the results of this test that was done on the pathology slide from my core biopsy.
I would like to hear from others who had the Mammoprint done. My doctor said it was more reliable than Octotype test. ??
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I didn't have chemo with either, nor an onxotypeDX although I requested it the second time around and the oncologist said he would recommend it because treatment would be the same. For some reason he felt that I had even less than a 2% chance of recurrence. I never got the "poor man's oncotype" which is the Ki67. I have to live with this but if I had to do it again, I would chose a light chemo routine.
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