Another "Chemo or No Chemo?" Dilemma!

crking71 · February 2012

Hi Jass - I don't have an exact percentage of ER/PR in my pathology report, but it says 3+ for both, so I'm assuming that is pretty high. What is also interesting is that my Ki-67 score is 15%, considered low-intermediate, my onco type score is also in that low-intermediate range, as well as being grade 2. I'm just in that general grey area for everything!

WK83 · February 2012

Hi crking 71,

I just got my Onco score today - 23. Had a lumpectomy on 1/24, with a 1.5 cm tumor, grade 3, stage 1, micro metastisis in sentinel node, 4 other nodes negative. ER/PR +, HER2-. I'd pretty much decided before my appointment with my MO that if my score was 15 or greater, I would do chemo. I too, have been struggling with this decision for the past few weeks while waiting for the report to come back. My MO told me that I was in the intermediate range, and that if I did not want to do chemo, she would support my decision. Knowing that I'm above 18...I want to reduce my risk of reoccurence as much as possible. And, as many women in this forum and other forums have said, I will have peace of mind knowing I did all that is "humanly possible" to improve my chances. Now that I've made the decision, I feel better...even though I know the journey ahead will be the pits! It's reassuring to hear some women say it was not as bad as they'd expected. I'm planning on it being horrible, so anything better than that will be great! Let us know what you decide...we can share the journey.

Thanks to all of the women who share their thoughts, knowledge, fears, and victories with those of us just starting this journey. You help us immensely!

crking71 · February 2012

Well, I had my second opinion, and this MO was even more reluctant to give me his personal opinion than the first. He stated the facts, percentages, chemo side effects and small but real possibility of a local or distant recurrence. He said if my Onco Type score was over 25, he would say "Get chemo," but that is not the case. He said in this grey area he advises his patients to do whatever will help them sleep at night. There is no wrong answer in my case. When I asked him if he would advise a family member to get chemo if they were in my place, he said "It depends on the person." He was being totally objective which surprised me because I was expecting him to either say "get chemo" or "I don't think chemo would benefit you." He didn't advise me one way or the other, so I was back to square one.

After a lot of research, second-guessing and crying my eyes out, I have made my final decision. I have taken my pathology report into great consideration, and knowing what I know about my BC, I made the decision not to do chemo. The details of my path report states that there is no evidence that my cancer has spread. I know that there is a small percentage of chance that it may have, but I feel fairly confident that it did not. The radiation and hormonal therapy will hopefully take care of whatever may be left. This decision was very difficult to make because I was terrified of making the "wrong" choice. It took me three agonizing weeks to decide, but in the end I have to do what is best for me and my situation. The bottom line is, I don't believe that a 3% decrease of recurrence is worth me turning my life upside down for. And I feel that chemo would turn my life upside down. There is just too much involved with chemo which would cause a major disruption in my life. It takes a very big commitment that I am not willing to make given my circumstances. If my path report had any red flags, if I had positive nodes, if my Onco score was higher, etc., then of course I would be doing chemo because there would be more benefit in doing it. But that is not my case, so I feel like not doing the chemo is the best choice for me.

My radiation simulation appointment is on Monday. I feel much better that I have made my decision, and now I can focus on treatment. I know radiation and HT won't be easy, but I think I will be able to manage and get through it. Thank you all for your support and guidance! Smile

ElenaMarie62 · February 2012

Hi crking 71,

Well, if it is any consolation to you, I chose not to do chemotherapy last year after my surgery in April. I had a PET/CT scan in June, which did not show anything out of line, and I am taking Tamoxifen right now. I started on Aromasin, but that really made me feel horrible, and I could barely move or get up from a chair. So, my Oncologist switched me to Tamoxifen, and then tells me that there is only about a one percent difference in recurrence, if I am taking that compared to an Aromatase Inhibitor.

Although I am 63, and my Onco Dx score was 28, I still am not worried that I chose not to do chemotherapy. I have other Autoimmune diseases that made me decide not to do chemo, and even if I die sooner than later, at least I have not suffered too badly through this past year.

We each have to make that decision ourselves, armed with the most knowledge we can ascertain, and then I believe we have to live each day knowing that we chose what was best for ourselves.

I had a double mastectomy, and stopped taking estrogen (I had been on that for almost 18 years due to a complete hysterectomy) last year in February. My hysterectomy was back in 1993, and I was 44 years old then. I believe in 'quality of life', not 'quantity of life'. I know that maybe when it gets down to the nitty gritty, I may look back and wonder if I made the right decisions, but I try to live each day for all it is worth.

Best wishes and I hope you do okay with the treatment you have chosen.

Anonymous · February 2012

crking71, I hope that the peace that you have found in making your decision continues for many decades of good health.

GirlPowerDebbie · February 2012

Hi Cking ... so sorry you have to join this particular sisterhood.

Your diagnosis is similar to mine. I opted to do the chemo after lumpectomy because, as I told my oncologist, I wanted to throw everything but the kitchen sink at it and be done with it. My sister is a 32 year survivor ... her middle daughter died from metastatic BC at age 38.

No doubt about it, chemo sucks ass. No way to sugar coat it. I did 6 TAC treatments 3 weeks apart. Everybody's body reacts differently to the various cocktails. For instance, my niece that died -- her fingernails turned black and lifted from the nail beds during her first round of chemo. My nails looked better than they had my whole life. My biggest SE was fatigue. They have lots of things to combat nausea. I think I threw up twice during the whole thing. Yes, your hair will fall out. I stressed and pouted about that ... and when it finally happened ... well, there it was and you buzz it off, put on a hat and deal with it. It's growing back now.

Draw strength from the various discussion boards here at BCO. I found answers to my questions here, and whereas with family and friends you keep your "game face" on; here you can whine and bitch to people who understand, and they won't hold it against you.

I have 8 days of radiation left. Radiation has been a cakewalk compared to chemo.

But .. it was described to me this way. After the tumor is cut out (lumpectormy, mastectomy, whatever;) radiation sterilizes the area where the tumor was. Chemo is "search and destroy" throughout the rest of your body, looking for and killing that one tiny cell that broke loose and moved to another part of your body. I am a WARRIOR in this fight against cancer, so I chose SEARCH AND DESTROY.

Do your homework and then follow your heart. Best of luck to you!

Debbie

MaureneCA · February 2012

My story starts in October 2010 when my friend was diagnosed with breast cancer. Before her surgery (which the doctors said had to be preformed immediately) we did hours and hours of research on chemo and radiation and it's benefits and side effects. After her surgery she refused chemo and radiation because of what we were finding. We kept finding references to nuturition and healing. Well, I was diagnosed with cancer in my right breast and lymph node in Feb 2011. After the biopsy and meeting with the doctor and surgeon I felt like a cow going to slaughter. Everything was so cut and dry and I felt like they couldn't wait to get me on chemo, surgery and then radilation. I just didin't have a good feeling. I asked about nutrition and a raw food diet and it was like the doctor almost laughed at me. I could see the snicker on his face. I walked out of the doctors office and told my husband that I just became a vegan - which I did - and never went back.

After one year without a doctor and deciding to heal my body thru nutrition and the right foods (eating 80 - 100% raw now) I have shrunk my cancer by 51% as of Friday (2/24). I finally found a cancer doctor (a month ago) who is a 2 hour train ride away. She believes in taking care of the root problems first and them using traditional treatments as a last resort if they are even needed..She did tons of tests and blood work. She said everything was looking good. Even my cancer markers were down. My heart goes out to all of you who are going thru chemo and radiation. I just knew it wasn't the right path for me. I found this website in my research for the supplement DIM. I want to add it to my arsenal of supplements.

Even if you choose (or have chosen) the conventional cancer treatments, a good DVD to watch is "Healing Cancer from the Inside Out" by Mike Anderson. It was recommended to me by my friend who believes in a very healthy raw foods lifestyle. It was my AH HA moment as Oprah says. It will give you an understanding of how the right foods can (and will) help heal you. With all the drugs going thru your body the nutrients from juicing and drinking green drinks and eating a raw food diet will help rebuild your cells.

I have since been told that cancer (in the majority of cases) is a slow growing disease. You have cancer from10 to 40 years before it's ever detected. That I had time to decide my course of action. My original cancer doctors sure didin't tell me that. That's when I did research almost 24 hours a day for weeks. What turned me away from the conventional treatments was that the doctors insisted (and I mean insisted ) that I get right in and start my treatments.

I am actually starting on a 30 day juice feast (the final phase to rid my body of cancer) for the entire month of March. I'll b 63 March 2nd and want this month to be the end of my cancer journey. I would like to be totally cancer free by June.

I have just started a blog (lavitatotalwellness.com) where I am sharing information I am learning from my cancer doctor and all the health conferences and cancer summits I attend. I am actually in the process of becoming a Holistic Health Practitioner and want to become a Naturopatic Doctor. I believe that's why I got cancer. To help others make informed decisions about their treatments. We all have to make decisions that are right for us but we are never told about the other side of the coin by the majority of cancer doctors. Granted it cost more money to go the route I am taking but I feel for me it was the right way to go. Organic foods and supplements aren't covered my insurance. I spent 1 week at the Optimum Health Institute in San Diego in April 2011. It actually put me on the right path. I had an entire week of detoxing my body. It's a 3 week program but it's $850 / week and one week was all I could afford. There I learned what foods to eat and how to combine them. I will be sharing all of that in my blog also plus sharing recipes.

One very important thing you should check is your Xenoestrogen level. On the blog I explain what they are and how you can tell if you have them. The first thing my new doctor told me was that I had way too much xenoestrogen in my body. They play a major role in cancer and I had.no idea. No other doctors told me that. You can either go to my blog or just do a Internet search. If you have breast cancer it's more than likely you have way to much xenoestrogen in your body and it's important to get rid of it..

Everyone has to decide what treatment is best for them. The problem is that most doctors won't discuss how to heal your body (from almost all diseases thru the proper nutritional choices). It doesn't make them any money.You have to be an informed patient and don't take the doctors word at face value. Do research (I know it takes alot of time) and then make the decision that is right for you!

Remember that God created our bodies to be self-healing machines.

I'll keep all of you in my thoughts and prayers. God bless!

Maurene

woodburns · March 2012

I know how you feel. I was there January 2011. My onco type came at 19. My background was that I had a left mastectomy in 1996. No treatment what so ever. January 2011 I had a right mastectomy and had the sentinial lymph node positive. The rest were clean. I had clean margins. Between the onco type and all the negative tests that came back, I decided against chemo. Then the last week in Dec. of 2011 I felt a lump. Here I had no breasts and find a lump. Same place as the last cancer. Yes, it was Stage II. I have had MRI, Bone Scan, and Pet Test. All negative. I have chosen to take chemo this time. I will be taking TC. I will always wonder if I had done chemo last year, would I be going through this now? I had the Brac tests done this time too. Negative, thank God.

No one can tell you what is right for you. Am I scared? Yes. But I am not ready to take any more chances. I figure 4 rounds of TC 1 round each 3 weeks is little time out of my life for a life time of living.

Wishing you nothing but good.

Granuaile · March 2012

Maurene;

Are you trying to sell something? I only ask, because you don't post details of your diagnosis (you didn't get a path report, right - just decided to "treat" your "cancer" by yourself?) I have to say I'm somewhat skeptical about the nature of your post. Too much anecdote, too little fact. For example, your supposition that the majority of cancers are slow-growing - where did you get that? And then I went to your blog, only to discover that you have a store... The women on this site are suffering and looking to each other for support, and considering this is your first post, supposedly a year after your "diagnosis", I have to wonder about your intentions.

Stay well.

bcisnofun · March 2012

good luck Carrie - I'm glad you made a decision you're at peace with. Making that decision was the toughest part of my journey too.

Another "Chemo or No Chemo?" Dilemma!

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