I was diagnosed five years ago with Her 2 +, no lyph nodes, small tumor. Chemo yes? Chemo no? It was up to me. I said yes to partial mastectomy and radiation, no to chemo. One year later I had a recurrence and this time a full mastectomy.
I've worried over the four years that saying no to chemo led to the recurrence. I'll never know for sure. I worry that I'm at slighty higher risk for another recurrence.
In hindsight, for an 'on the fence' decision - I'm happier living with the worry than the effects short and long term, of chemo.
-Dani
My hats off to everyone who has had chemo. I was more scared of the chemo then the cancer. I had my reasoning for no chemo....I have had many family and friends die from cancer and they seemed to die faster once chemo started.My self having Agiolymphatic Invasion knew what that meant . Meeting the man with the poison.
My oncologist whom I admire and respect was alittle taken back when I said no chemo before he had a chance to voice his satistics ,but encouraged me to listen to him anyway.I still said no and he looked at me and my hubby and said WHY and I gave him my reasoning and he accepted . I could tell his concern and got to do hormone theraphy 
he kept a watchful eye on me every 3months for almost 3 years then 6 months then now finally 1x year. That was 7 years ago. Do I 2nd guess my choice ya alot and I have to live with my choice ,but it was my choice.Life is about choices and chances ...peace Barb
I felt I had very little choice nearly four years ago when I was diagnosed with an agressive, Stage III breast cancer with extensive lymph node involvement. I still had a teenager at home and a life I intensely wanted to live. I had a mastectomy, agressive dose dense chemo, radiation, and now take an aromatase inhibitor. After completing treatment, I seriously worked on improving my health - started running (!) for the first time in my life, dropped over 40 pounds, embraced a plant-based diet, and have never looked back. Chemo was very tough while I was in it and was the worst of my experiences in treatment. I would choose to have multiple surgeries before ever choosing to have chemo again. However, since completing treatment, I have never felt better, physically or mentally. I know I am very fortunate, not only because I have virtually no residual side-effects from the chemo (a little twitching from the Taxol), but also because I'm still here, telling you my story. If I ever had to decide to have chemo again in the future and my prognosis was in the gray area, would I? Probably. But that is in part because I watched my mom die of this disease after only four years, despite being diagnosed with Stage I breast cancer, and being treated with a bilateral mastectomy and Tamoxifen. Being Stage I, chemotherapy was not recommended. But who knows? You never know 'til you get there.
Phyllis, you sound like you made absolutely the right decision, given your positive nodes and aggressive cancer. None of us ever knows, ever, about treatment decisions we make along the way... Well, until the day we die of something else! But I'm happy with the decision to have chemo, back then - and perfectly willing to not have it if there's a next time, and it's a gray area. Thanks for sharing your story here - PJH
Oh yeah, me too, with thinking it would be over in four months, and finding the far-reaching hand of chemo is not done with me yet, two and a half years out.
I won't go into it all here, but I am still on disability from it.
I would always caution a patient to get educated, figure out what she (or he) really believes is best, and whether they can live with that decision no matter what. Chemo does treat us differently--some people sail through--but it is actually poison, not really medicine. One needs to really get educated and decide for oneself.
I quit chemo after 5 out of 8 (which saved my life from an infection brewing), and quit Tamoxifen after 9 months because of its awful effects. There has to be a better way of treating patients. I felt way better before treatment than I do now. I was working full-time, a productive citizen, and a writer on the side (so I know what you mean about congnitive issues being disconcerting).
The good news is, they are finding that healthy diet and exercise go a long way toward survival. Also, Vitamin D3, so people should get their levels checked.
Do I believe in fate? You bet. Flying through emails..I have no time to really read them all - evnen scan them all! I do a lot of deleting. If the subject line stops me, I may actually open it. That was not the reason I clicked open this one, but, boy...am I glad I did. Just fate.
Had bi-lateral mastectomy with L node removal on March 5th. Two nodes (of 11) were positive. Everything else came back clean. Surgeon had ordered a bone scan and intestinal/pelvic region ct scan prior to surgery...looking good on both of those. I am Her2 negative, estrogen (ER) positive, cancer was (forget what they called it) confined to tumor only, tumor grade 2, 1-1.5 centimeters. Forgive me, I am new at all this cancer lingo.
Oncologist suggests adjuuvant/preventative therapy: Four 'courses' of cytoxan and taxotere over a 12-week period, followed by (minimum) 5-year hormonal (letrazole 'Femara') therapy. I signed the consent last week, but have always had a nagging 'discomfort' about the chemo regime...I am with you - the chemo scares me more than the cancer. No one has mentioned to me LASTING effects of chemo, until I read these comments and PJ's original posting. I would like to hear more from anyone who has gone through the C&T chemo.
It is all really just a gamble, isn't it? The increased odds (for 10 year survival / no recurrence) are at about 7% with the addition of chemo. I am 57 years old, single, with a 19 year old son. I NEED to be able to work, and function at as optimal state as possible. I am also from the 'hippie' era...where anything un-natural, particularly lethal chemicals, were definitely AVOIDED! Maybe we were on to something.....
Candace, one more thing you can do is ask for the Oncotype DX test. I think you're a good candidate for this - it should tell you how effective chemo will be for you. If it were me, and I was able to take the test, and it came back low (chemo wouldn't do much); I'd skip the chemo. If it came back high (chemo would be very effective ) - I'd probably do the chemo. In the middle.... decisions, decisions... I really, REALLY don't want to feel that I'm responsible for giving anyone "permission" to skip chemo when their oncologist recommends it; and with two positive nodes, if it were me, I'd be leannnnnnnnning towards chemo... halfheartedly, but leaning that way. I simply wanted women who don't have any exprience with cancer, and who think "I want to do everything I can to prevent a recurrence - cut off both breasts, do the toughest chemo possible, pile the drugs on top of that" - to understand that all of these preventive measures come with their own downside. And if you do enough of them - to me, the downside might outweigh the X5 lwer recurrence rate especially if you're lowering an already low risk. So ask your doc about Oncotype, OK? And stay in touch here - we're here for you as you make this tough decision. Peace - PJH
I just had a mastectomy to the left breast. At the time of the biopsy the tumor was believed to be 2 cm but after the mastectomy it was 4.5 cm, node negative, grade 1, HER2 negative and ER/PR positive. When the tumor was believed to be 2 cm I was told that chemo was most likely optional but now that it is 4.5 cm I am being told chemo is a given. Since all the tumor characteristics (node negative, ER/PR positive, etc) are 'good', other than the size I'm struggling with how to know what the benefits of chemo are vs. the risk factor of not having the chemo. I don't want chemo but my husband and adult children do so I have to consider their feelings it this decision too. I have my first appointment with the oncologist on 4/20. Is there anything specific that I can ask the doctor to help me make an informed decision?
Red, definitely ask your oncologist for the Oncotype DX test. It's a test that gives you a good idea of how effective chemo would be for YOU, rather than just relying on statistics for your diagnosis. Do be sure to get the stats from your doctor, though - your risk of recurrence with chemo, vs. not doing chemo. S/he should have that data. If your risk is low anyway, and chemo reduces that risk another few percentage points, you may not think the benefit is worth the side effects. Bottom line: make sure you have all the facts before you make this decision. Chemo does NOT have to be a given; you have a choice here. Good luck - PJH
Candace,
I am deciding the same options and am very confused on what to do. My oncologist asked if we wanted the Oncotype dx test. We opted for it so I could find out the level of recurrence. I am really scared for the chemo treatment which would be the TC regimen. It is a hard decision to make. I had the lumpectomy and then did the mammosite radiation treatment. I am in stage 1 tumor was 1.3 cm, ER/PR positive, nodes -negative. I would like to hear more about the chemo. Good luck and let us know what you decide.
EB...this was a very agonizing decision for me. I 'signed on' after considering it for 2 weeks after my first meeting (after surgery) with my oncologist...the drugs were delivered, I had my hair cut short (to get used to no hair'), even bought the wig! The weekend before I was to begin (on Wednesday), I FINALLY took time to sit down at my computer and do some research. The next day, I bought the book 'What your doctor may not tell you about BREAST CANCER - how hormone balance can help save your life'. I highly recommend this book to anyone who has recently been diagnosed with breast cancer, or those who have already gone through the 'ordeal'. I spoke at length with my reconstructive surgeon (I knew him prior to surgery), whose opinion is always very candid, and I trust him...plain and simple. He is a phenomenal doctor. As was my surgeon. I did not involve my family in my decision (I am a single mother of a 19 year-old son, but have close relationships with my two brothers and my surviving parent). I did not seek counsel from friends...I am not part of any 'support group'. I knew that this had to be my decision. I am a firm believer in the concept that any undertaking will only be as successful as you are passionate about it. I felt uncomfortable from the 'get-go'...prior to surgery, prior to any diagnosis. I have known family friends, and peers, who have deteriorated rapidly after undergoing chemo...many people say that it is not the cancer that kills some...it is the chemo. It is a horrible assault to an already somewhat 'fragile' state of being. There are many reasons I have chosen to go a different route of 'healing and prevention'. The potential 'pay off' of gaining an additional 2.5 to 7% chance of non-reoccurence in the next 10 years was far out-weighed by the potential, long term, negative impact of the chemo. Most oncologists are not likely to tell you the percentage of those who undergo chemo, who do have a reoccurence in the next 2, 5, or 10 years, or that the tumor in your breast has been growing there for 10-20 years. A nurse at my oncologists office told me of people who have experienced a reoccurence of cancer while undergoing chemo. There are MANY things that you can do which have a far-reaching, positive impact on your long-term health and well-being. READ about alternatives...read the book I suggested...it is an excellent source of information about women and cancer. Many have suggested that I read Suzanne Somers book regarding her decision to not undergo chemo, and what she has accomplished (health-wise) since. Pick up 'The Cancer Fighting Kitchen', or 'The Cancer recovery Eating Plan'...I have found 'Anti-Cancer - A New Way of Life' a treasure chest of knowledge about cancer...and how to REALLY live life as a survivor. I was not a candidate for the onco test. Post-menopausal and node positive. Tried anyway....insurance denied. Bottom line (sorry, I have been rambling here!), I stand firmly by my decision. I think it is very important that we EDUCATE ourselves about what has just impacted our lives. You are going to be amazed at what you learn. Think about this...millions, billions of dollars have been poured into breast cancer research for the past 20-30 years...yet the treatment is the same as it was 50 years ago...I think Dr. Susan Love calls it 'slash, burn, poison'. Something to that effect. Breast cancer is a mighty money-making machine. Money is not made by prevention...or lowering your risk. It is very political. Very SAD, for those of us who have been touched by it. We are left with very few options OUTSIDE of the medical community...it takes a brave, and strong-willed, person to take charge of your health, to ask questions, to examine all alternatives. Any worthy oncologist will tell you that chemo is purely a gamble. It is important for me to add that I have high regard for anyone who does whatever they are committed to, follows through with it, and does not feel hopeless, or apathetic, regarding their will to live...who are adamant about not allowing cancer to rob you of living your life...no matter what that time period will be (which I believe is determined by a force far greater than our oncolgists). My thoughts are with you!
Joie de livre...Candace
Candace, thanks for your input here. And for taking the time and energy to really do the research that brought you to the decision to forego chemo. I disagree with some of what you say; for instance, I don't believe the vast majority of oncologists try to hide information from us; nor do I believe, at bottom, that breast cancer is an "industry" fueled by greed, because I know way too many uneblievably devoted researchers working on shoestring budgets and pouring their heart and soul into finding a cure for cancer.
But I do think that chemo is difficult, dangerous, and comes with lasting side effects; and that each woman has to look at her risk of recurrence long and hard before deciding to go the chemo route. In other words, chemo shouldn't be a slam-dunk no-brainer; if your risk of recurrence is 10%, and chemo reduces that risk to 7% – is it worth it? Each of us, as you say, must make our own decision. Thanks again for connecting - PJH
Candace,
Thanks for your reply. I have been reading a lot on cancer and the variance treatments. The oncologist that we went to for my second opinoin had facts and numbers of percent for recurrence in the next ten years for hormorne therapy, chemo, no treatment or a combination of two. He also wanted the oncotype dx test (which our first oncologist did not recommend it) I will not find out the results of that test until after the 10th of May. I am leaning toward no chemo and taking my chances either with no treatment or with the hormone therapy along with a diet. I will pick up the books you mentioned. Are you taking any hormone therapy or just watching your diet? Thanks again.
ThankyouthankyouTHANKYOU for talking about the Oncotype Dx test, PJ!
I was diagnosed in early March, had my lumpectomy in early May (had to wait for BRCA test results--and I did a 2nd test because I didn't believe I was negative--I am), and thought chemo was off the table for me. First appt with the oncologist, he told me it wasn't, which completely deflated my basically positive approach to dealing with the diagnosis. Then he discussed the Oncotype Dx test with me and I knew that if I could have an answer before starting treatment (just as I did with BRCA pre-surgery--when I thought I'd have a mastectomy), I'd feel better. Thankfully, I scored an 11, so I now know that chemo really isn't right for me. Radiation starts in a couple of weeks and at least I can start knowing I have all of the info I need.
As with just about everything in life, knowledge is power. Thanks for helping spread the word about this greatly unknown/under-utilized test!
Chemotherapy terrifies me. I am desperately searching for survivor stories of those women who are similar to me who "opted out" of chemo. Here is my story:
44 years old. Stage 2A, Grade 2, ER PR positive, No Node involvement. Bi-lateral mastectomy and removal of ovaries. No radiation. No Tamoxifen.
Oncotype Test resulted as a magical 23 which places me in the "intermediate" range and chemo may or may not benefit me.
3 very notable oncologists recommend CT regimen Chemo for me because I am young but I am terrified, not of the side effects, that I can deal with, but of the possible secondary cancers associated.
I have prayed, meditated, and sought 3 "second" opinions (Duke, MD Anderson, and Ohio State), my gut still says, DON'T do it! Any similar stories would be appreciated!
Hello i was reading your posts and i am confused as well with my own decison to do chemo. I am stage2a..(2.3 grade 3 tumor.) good margins.. no node involvement.Triple negative (which im freaked out about also) I have had all my scans turn out ok.Ct scan showed Small cyst on liver they said most everyone has these and the are not concerned but will keep eye out. My onc says chemo then rads. I just dunno what to do....hEll im scared
Hi - If your cancer was hormone-receptive, then I think you might have more doubt about choosing chemo. But with a triple negative diagnosis, chemo is your only and best weapon against recurrence. And, chemo tends to be more effective for women with a triple negative diagnosis. With no node involvement, you might be tempted to bypass it; but with a fairly aggressive cancer, and stage 2, I'd lean towards chemo pretty heavily if I were you... Yes, it comes with side effects, both immediate, and potentially long term. But you have no way of predicting what those side effects will be. They might be tough; they might be very light.
I'd say ask your oncologist what your risk oof recurrence is with chemo, vs. without. Then weigh that difference against the potential for side effects; and also against your capacity for worry and recrimination, should you choose not to do chemo. That'll be the grounds on which you make this tough decision. Good luck - PJH
Toni, I didn't skip chemo because I had a Stage IIIB cancer. There was no gray area for my chemo decision; however, I did have some other medical decisions to make where the "right" decision was not clear. This is the process that helped me. My husband and I listed all the positives and negative possible outcomes of each choice. If you are not married or if your husband isn't the best person to help you think this through, I would encourage you to get a friend or other trusted person who knows you well to help you with the listing process. Another person will give additional perspective. When you make your list, include any stats you can find for people with a similar diagnosis and medical history. What are the chances of recurrence? What are the chances of cancer as a side effect from the chemos the doctors recommend?
Once we had our list, we talked it over one more time with the doctors to make sure we understood each treatment choice and its possible consequences. That is the "head" part of the decision-making process. When your choice is a literal matter of life and death, you don't want to start with fears and emotions.
Then after all that thinking and consulting, I went with my gut.
I'm a little surprised that your doctors are not recommending some sort of hormonal treatment like Tamoxifen since you are ER positive. A follow-up treatment like that might make you feel more confident about not taking chemo. Of course, I'm not a doctor, and if three doctors at top cancer centers are not recommending a hormonal, there must be a good reason in your medical history.
My best wishes to you as you come to a final decision. Once you make it, try not to second guess yourself. Don't look back. Go forward and be well.
I saw this note and was very interested in your comment about triple negative BC. Im 53 recently had a mastectomy, and diagnosed with triple neg/no node involvement/stage1/.9 tumor size. I do not feel that the odds given is worth the risks of side effects from chemo. 75% no reoccurance no chemo/ 86% no reoccurance with chemo
I would really appreciate feedback.....i want to make the right decision
i have three daughters and want to make sure to help raise my grandchildren
thoughts??
Unfortunately, there's no black and white, "right" decision here. Or, there is - but there's no way to know WHAT it is. Once you choose, only time will tell whether you have a recurrence. Think hard about those odds, and what your personality is. Are you a worrier? Do you second-guess yourself a lot? You might be more inclined to do chemo. Are you a glass-half-full person, someone who takes life as it comes and deals with it? You might lean away from chemo. Whatever decision you make - know that it was "right" for you, given the information you had, and what your mind and heart and gut told you. Take care- PJH
A method that helps me make decisions based on statistics is to picture people in a room. Imagine that you are in a room with 99 other women. The doctor says, "We know that even without chemo 75 of you will be fine and will not recur. With chemo, 86 of you will be fine. Unfortunately we do not know which 11 of you are the ones who will have the cancer recur if you decide not to do chemo." In that room of 100 women 11 will recur (based on the history of previous patients), and although some of those who recur will get better with treatment, their treatment plan will need to be much more aggressive than if they had chemo to start with. Note that 14 of the women would recur anyway even with chemo. With an 11% difference in recurrence rate between chemo or no chemo, most doctors would probably tend to recommend chemo. They will treat hundreds of women, and they don't want to have to face those 11 women who might have avoided recurrence.
As PJ says, your personality is the big determiner for what is right for you. You can go with the three out of four chance you have to stay well even without chemo. Or you can decide you want to reduce your current 24% chance of recurrence to 14%. Once you decide, don't look back.
Thanks so much to all of your thoughtful replies. I have made a decision NOT to take chemotherapy treatments. I feel as though a weight has been lifted as my heart continually pulled me in that direction. I truly am walking around as happy as I could possibly imagine. I meet with my oncologist again Monday to give him the good news 
. I AM going to take 5 years of an aramatase inhibitor, most likely Femara. I'm good with that.
My mind and body feels whole and well. I am excercising and practicing Yoga and meditation daily. I've also changed my diet and juicing spinach, carrots, celery, fruits, etc, and have created some terrific concauctions if anyone is interested.
I went the aggressive route - having a double mastectomy AND my ovaries removed to stop future estrogen production. So, I certainly don't advocate a totally holistic approach to cancer. However, I do believe so much can be said for diet and excersice and well mind to build the immune system and keep the cancer at bay.
Love and hugs to all my sisters!
Good for you, Toni! It was a tough decision, but it sounds like you're going forward with a lot of confidence. Love your focus on healthy eating, exercise, and meditation; while nothing is a surefire cancer deterrent, all of those will definitely help with your genral health - and that's a good thing! 
PJH
Many thanks for this - I have been thinking hard about whether or not to have chemo and radiotherapy as my breast cancer staging is T2GR3NO infiltrating ductal carcinoma following a lumpectomy with no spread to the lymph nodes, and have decided against it, in view of all that you and other data have shown. A 5-10% increased chance of survival in 10 years with all that treatment, over a 70-75% chance without any treatment, as put to me by my oncologist here in the Uk just isn't good enough for the adverse benefits.I am planning to follow a regime to boost my immune system which will hopefully do a better job of preventing any recurrence. I prefer to let the body heal itself and to balance my system which obviously had become unbalanced for the cancer to appear.
Sarah, given the stats your doctors have given you, skipping chemo makes sense. If ten people with your prognosis were in a room, 7 of them would be just fine without chemo. Adding chemo would mean that 8 would not recur. From the point of view of an oncologist who sees hundreds of patients, sparing that person #8 from a recurrence is a strong incentive to recommend chemo. As the person who would have to go through it, knowing that 7 people would stay well may be enough reassurance that you have made the right choice. I hope all goes well for you.
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I am with you. If I have a reoccurence I won't do it again. It is more about quality verses quanity of life for me.
Tough decision, Kathy. I totally don't want to dissuade women from having it who definitely need it. But I didn't go into it with my eyes wide open. As I said, I figured 4 months and it's over. Not so... for me. We all have our own personal experiences with it, though, so I'm sure many women did chemo and never felt any lasting effects. The thing is, you just can't know what group you'll fall into. You must still be feeling it, eh? Hope someday we both feel "right" again. PJH