To do or Not Chemo... HELP!!!

Mags44

Recently diagnosed with T1 No Mo Grade 3 tumor with er 20%positive and PR negative receptors. My dillema here is that I am now being recommended for FEC chemo and I am dreading the whole thing. I am now almost completely finished 5 weeks of radiation and I feel great but my onco thinks that because of the grade 3 cancer I have to do the chemo. Like others on this chatroom I do not know how to weigh the benefits of chemo against the negatives. I am 61 years old , very active (I do 2 hour gym workouts 3 times a week for a long time now) very involved in the community and I fear that the chemo would change my life totally. Yes I am aware that a recurrance is always a possibility but how much would the chemo prevent this. I was doing very well emotionally until I was told about the chemo and now EVERYONE, friends the radiation specialists etc can see a change in me emotially. I cry all the time and I think I am losing some confidence. Norm,ally I am a very positive up beat person and can take charge of most situations. Unfortunately at this time I feel 'beaten' and it is NOT a good feeling as it is so out of my character. HELP

amckn

Mags44- I am new to this website, and your post caught my attention. I am currently doing the standard chemo regimen for Stage IIB lobular breast cancer. I too tried so hard to not have to do chemo- as I know the outcomes are different for everyone. I am finding that chemo is not the horrible "thing" that your mind wants to think it is- I am managing to live with it- as an outpatient treatment. I am 42 years old- still working- and learning everyday that you can do what you want. You sound as if you are in excellent health otherwise, and that is great! My decision was based on possiblity of recurrence, and worrying over that every day of my post treatment life. I wanted to know inside that I had done everything possible to live every day that I can- and I guess increase my years with treatment if it was possible. I will be glad to share my chemo experience with you- no sugar coating it-if you feel that will help you. Just let me know- and I wish the best for you in your decision.

Teresa44

Hi Mags44, I am now dancing with NED (no evidence of disease)at just 15 months since I was dx. I had IDC with a tumor size of 6.5cm. I started with A/C chemo which was to shrink the tumor. With GOD and this chemo after 2 treatments my tumor had completely disappeared. I did a couple more A/C and then had my mast. in Jan of 05. About a month after the mast. I then did 5 doses of Taxol and finished up with 25 radiation treatments. Chemo was tough but it is doable. I was 43 when my tumor was found and I am also a triple negative (hormones) so I have no other treatment option available to me like hormone positive women have. I worked every day during chemo and also tried to walk at least 30 minutes a day which seemed to help. I had to have a neulasta shot after every chemo to help with the white blood cells and every now and then a shot for the red blood cells. I also had to have one blood transfusion and one plasma transfusion during the course of my treatment. This only helped me to feel better. I know that without God in my life and a faith that keeps getting stronger every day that things might not have gone as well for me. This is what I believe for me and is only my opinion for myself. Prayer was also a strong part of my healing. I had so many people, churches and family praying for me each day. My prayer was answered so I always try to help someone if I can. If you have any questions, please feel free to PM(personal message) me at any time. I hope things work out for you.

God Answers Prayers

Teresa44

slonedeb

mags i am stage 2a grade 3 and i choose not to do chemo they said it would on add 4 percent of it not comming back so i didnt want to be sick for six months for only 4 percent i had my mast 13 monthsago and so far so good i am taking tamoxifen but its really up to you just thought you would like to know therre are people who choose not to take chemo and are doing ok take care and god bless debbie slone from ky

ibasurvivor

Mags there are several tests that can be run on your tumor to determine what your chances of recurrance are. I suggest Oncotype genomic array.
Best of Luck to you.

Milica

Mags --- chemo increases survival -- I'll take any percent! And they have medication for nausea. Chemo will make you tired - after 2 or 3 rd one -- but what's 4 months out of a lifetime?
To get studies that are current:
go to:
http://www.cancerfacts.com/

The tool is called Nex Profiler:

select 'breast' (for breast cancer) That will take you to a sign up page - I have never received spam from this site.

Step 2 = Breast Cancer Options Questionnaire (you will answer long questionnaire -- nearly all questions deal with pathology report which comes after surgery) Answer what you can to get treatment options and studies and you can always go back and revise the data once you get more information about your circumstances.

After you fill out the form for your circumstances it will pull up reports, treatments, clinical trials, etc. Just click and read!

MargaretB

Mags, I so did not want to have to do chemo; my plastic surgeon and breast surgeon did not agree with the oncologist regarding chemo so I sought a second opinion from another oncologist - he felt I needed to hit it as hard as I could the first time - it's your best chance. He ran the statistics for me and chemo and tamoxifen increased my survivability rate from 65% to 93% - too much to not have the chemo. I am very active in my community too (although I don't do the workouts anymore) and found that chemo was very doable, I wasn't happy about it, but it was very doable.

Margaret

hope2004

There are many of us who faced this decision. I had 2 oncologists ...one said "chemo" the other "no chemo". I was 55 at dx and chose "no chemo" as I feared the possible long term side effects of the chemo. I would suggest getting the oncotype gene test done. This will give you some information regarding your chance of recurrence.

Also the www.mayoclinic.com site has a good article about making the "chemo" or "no chemo" choice. There is no perfect answer.

I have NED 18 mos after surgery. I am on Femara as I was ER+. I hope you are at peace with your choice. No matter what there are a lot of people out here to offer support.

fancy2

I also choose no chemo. However, I have a 1.6 ILC Nx M0 diagnosis. I'm 62 and I've already had chemo once. Lobular carcinoma does not respond to chemo as well as ductal, but it also is not as aggressive. I had ductal 10 years ago, with rads and chemo. I thought that was the best choice then, I believe no chemo is the best choice now.

Mithel

It would be dangerous for anyone else to give you "advice". So I'd suggest you look at the cold hard statistics and projections to determine if the benefits outweigh the harm of chemo for your specific situation. If nothing else sit down with your doctor and have him/her show you the Adjuvant Online projections.

Anonymous

Mithel: Seems like you are "preaching" again! I read through this thread and there is alot of good "advice". Pros and Cons to chemo.

On ABC World News last night there was a big debate by 2 oncs that specialize in breast cancer. And they couldnt agree.

Although a family member, friend, husband, partner wants to take part in the treatment. The reality is You Dont Have The Cancer. Now if that sounds cold, Im sorry, but its the truth. My husband has been my support through this whole ordeal. I dont know what I would have done without him. But he never, ever told me what treatment to choose. Mithel, I dont think you should either. Now if you come back and tell me you have been treated for cancer, I will whole heartedly apologize to you.

It is the people on this chat who gave me "advice", shared their experiences. I listened to my doctors, and then I made an informed decision. When it came to chemo, my husband straight out told me, that was my decision.

I done with chemo now, Im glad I had it. At least if it comes back I will know in my heart I tried everything.

Mithel, I think you really care about your wife. But I think you should keep your comments in the family section. Why are you in the biography section. You dont have bc.

Nickii

Mithel

I certainly was not "preaching". I suggested consulting with the doctor and looking at the statistics and data.

Actually I was treated for cancer 23 years ago. I do understand your sensitivity on this subject. It's my wife that's battling cancer and making decisions now, not me. I'm just researching and sharing. I strongly support that any decisions are the patients decision. And it upsets me when I see doctors using subtle tactics to pressure their patients. Look at the facts, make your own decision. I don't think that's "preaching".

Beesie

Mithel, women come to this board to get advice from other women who've already gone through BC or are currently going through it. We come here to learn & benefit from each other's experiences. Yes, in the end the decision on chemo is a personal decision made between the patient and her doctor, based on her own risk assessment, unique pathology & history, and the best available data. But understanding how other women made their decisions can be very helpful. Hearing how other women assessed the risks and benefits of chemo can help with one's own assessment, even if the conclusion ends up being different. Advice on how to get through the decision process, at a time when we're emotional and not functioning as rationally as we might otherwise, is very helpful.

This thread was started with a request from Mags44 for help in assessing the risks and benefits of chemo. Women have replied explaining how they made their own decisions and suggesting tools to help with the assessment. All very good advice, none of it dangerous.

Angel5466

I am doing chemo now I have had 5 out of 8 total 4 a/c and one taxol so far, I am 35 with invasive ductal carsonoma stage 1 grade 3 with pr- her2- and 25% er+. The plan is 3 more taxol followed by 6 weeks of rads. I am living in hell this has been so hard on me, even my dr says i am having a harder time than most I don't mean to scare anyone but i am torn I am thinkning of quiting the chemo and just moving on to rads but im not sure I know that the chemo i have had so far has been helpfull but I just don't think I can take much more. Im scared i don't wnat to die from this now or 5 years from now but im not sure what to do.

Beesie

Angela, I'm sorry your treatment is so difficult for you.

How large was your tumor? Since you mention that you are Stage 1, I assume that you didn't have any lymph node involvement. Is that correct? I'm guessing as well that part of the reason that your oncologist recommended chemo is because of your age.

Did your oncologist tell you how much benefit you will get from the chemo, how much it will reduce your odds of recurrance and increase your survival rate? If the benefit is significant, that's good reason to stick it out. But if your survival rate was high to begin with (as is probably the case for Stage 1) and the chemo is providing only a small additional benefit, then maybe you won't risk as much by stopping now. Have you discussed this with your oncologist?

Anonymous

Angela: I had the exact same chemo you are getting. I went through 4 a/c and 1 taxol and at that point I wanted to quit. The taxol for some reason was really hard on me. In fact I told my onc I wanted to quit. Just didnt think I could do 3 more. And I kept thinking, well maybe the chemo I already have had, has taken care of the problem. My onc changed me to taxotere. So I went pouting into the office for the next round. Didnt feel much better after the taxotere, but took a deep breath because then I only needed 2 more and I knew I could do 2 more.

You are very young compared to me. Im 56 and I thought I was young. Geez! I have been on this chat/boards for over a year and I know there were some woman who told me they just couldnt handle the chemo. It made them so ill, the physician made them stop.

So I have a couple of suggestions.
...keep coming on the boards and the chat. We will help you through this.

...Talk to your onc and see what he thinks about quitting, changing to taxotere (they are from the same chemo family), or keeping the same treatment plan.

...See if you can get some medications to help with the side effects. I thought I almost had a whole drug store here. Something for nausea, heart burn, bone pain, low wbc's, low rbc's, chemo induced asthma, anxeity, depression. This list goes on but what is important is that you have something to take for each side effect to help you through this.

Now Im 5 months post chemo, and feel great. My hair is growing back, Im strong, and Im enjoying life again.

Good Luck

Nickii

Angel5466

Thanks my tumor was small .05 cm with clear margins I had 6 sental nodes removed all where neg (thank God) I talked to my dr and he said at this point I have to decide if the side effects are worth the bennefit he said at this point the chemo I have had had probly helped but the beniffit will proably be more from the tamoxifin then chemo he broke it down like this for me.

At this point my survival rate is 85% to 90% and finishing the taxol will help 3 in 100 women.
I have two choices here swith to taxoter and that may have less side effects or may not or quit chemo and move on to rads and tamoxifin.

Anonymous

Angela: Sounds like you and your onc have a great relationship. The invasive component is very small. Once you make your decision, go with it and dont look back.

Nickii

Angel5466

Thanks for all your insight I have made my decision and I'm not looking back. That is that.

Angela

ritimosa

Do the chemo you will be fine. I'm so proud of myself because I did very well on the chemo, almost to well. Near the end I received almost no attention-ha ! I stayed active I got out and walked every day and enjoyed my free time I did not stay in bed or watch life time movies. The worse weekend I had was when I took all the meds that were prescribed to me. I felt much better when I just took some otc pain killers. The emend works great I did not throw up one time. I'm only 40 years but I think that since you said you were healthy and active you will do great !!

68Jeri

Angela I also have IDC and had a mast,October 3 2006 . Just remember we are fighting this and we are going to win. I am 68 and I am not going to let this get me . I have too much living to do still. Anything that can help stop this I say go for it.

juli0212

Quote:

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It would be dangerous for anyone else to give you "advice". So I'd suggest you look at the cold hard statistics and projections to determine if the benefits outweigh the harm of chemo for your specific situation. If nothing else sit down with your doctor and have him/her show you the Adjuvant Online projections.

---

AMEN to the above. It's such a personal choice, but a medical one as well...get LOTS of second opinions (surgeons, oncologists, radiation oncologists (yep--THEY are THE smartest people I've EVER met)) and weight your OWN decisions based on the facts you receive...no one here can answer that question for you, only give you what WE'VE decided (based on our OWN research/best for us).
WISH you the VERY best in your decisions...juli
(IBC-Stage 2 dx 5/06; 2 surgeries 1.8cm tumor smack against the chest wall found on mammo-not felt; port implanted; chemo 4 months-4 different meds; 31 radiation treatments; endometreosis biopsy (-); estrogen +; premenopausal (age 47) before taxol/gemzar, the C/A chemo meds caused menses to continue every day thru the 4 treatments); chemo-induced menopause--THIS IS VERY IMPORTANT to decide what meds to take; tamoxifen presently; clinical trial added gemzar to taxol last chemo treatment; gemzar is already used now for recurrences-hopes gemzar in firstly-dx'd cancer patients will PREvent recurrences--benign lumpectomy in OTHER breast 2004 w/rapidly developing cells, also HPV 2002 (getting the HPV vaccine-cervical cancer--you get ANY cancer, you are so much more likely for ANOther cancer)...so for ME, I wanted to take NO chances at ALL, all I questioned agreed with my choices. (partial mastectomy in right breast 2nd time after lumpectomy, no clear margins first time).
EVERYone has a different history and outcome...sorry so long..not having a good week, so guess writing it all out has helped some????? thx for letting me rant...

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Harley44

Teresa,

I agree that prayer helps... God has helped me through this bc experience, every step of the way.  Even before I knew I needed something, God provided it for me.

Now I am going through chemo, which I tried to avoid, but it hasn't been too bad... again, God is helping me get through this too...

Mags44, whatever you decide, you will be fine... there is the Oncotype Dx test, which I had.  It is a genetic test they do on the bc tissue they took out, which helps predict your risk of recurrence.  I had this test done, with the help of my new onc., he got it done for me, at no cost to me...  but, in the end, I was still in the 'gray' area, and finally decided to go ahead and take the chemo plunge.  It hasn't been too bad, and in fact, every step of this has been much easier than I imagined. 
Did you say that you were stage 1, grade 3?...lymph nodes negative...  ER+... this Oncotype test is a good tool to help you with your decision.  It wasn't as helpful for me, because my recurrence risk was MUCH HIGHER than I would have liked, so that is why I am getting chemo...  I am halfway thru, and only have 2 more treatments, Sept. 18 and Oct 9th... In the end, I wanted to be sure I have done everything I can to make sure the bc never comes back!!

Good Luck!

God Bless,

Harley

sharebear

OK, I've been through this twice. When I was 32 I did the lumpectomy, rads, and 5-FU. New my chances of it coming back in the next 20 years were pretty high (I'm trip neg and BRCA1+) Not great odds when you're only 32. Back then I said, you know I'm not doing this again. I'll get it removed but I'm not going through this again...........Well we do alot of "big" talking when we're young. 12 years later, I'm still pissed off enough to do it again. And you know, it's an inconvenience, O.K. a huge inconvenience, but it's just that. One bad year out of my life for hopefully many more good. I'm just not ready to give up yet.

It's not an easy decision.

Little older, hopefully little wiser,

Sharon

twink

ITC's are sometimes thought to be cells dislodged by the SNB procedure.  Everything I've read indicates isolated tumor cells are so small (<.25 mm) they shouldn't warrant treatment.  I had micro-mets in three nodes at the time of my bilat mast, so I understand the worry. 

melissasamei

Chemotherapy is a very difficult decision.  I spoke to my surgeon, onc., friends, bc survivors, before I decided to go ahead.  I had a large 6cm tumor and at least 3 lymph nodes involved.  I went 4 rounds of a/c and 4 of taxol.  Do not lose hope or feel depressed.  Your symptoms are very minor compared to mine and I am 4 months out of treatment and doing well.  I had such a terrific response to chemotherapy that all pathology was negative after my bilateral. 

rubytuesday

MAMHOP, I had micromets (6mm) in my sentinel node.  I also had tubular tumors, two of them 1.2cm and 1.6cm in the same breast.  I was soooooooo upset.  I knew that the vacuum assisted breast biopsy (which I argued with my surgeon for an excisional biopsy....obviously I lost the argument) has the potential to spread cancer cells to the sentinel node but didn't realize that the sentinel node procedure itself can also spread cancer cells and effect the sentinel node.    After agonizing over auxillary node dissection, I did have it and the rest of nodes (10) were negative.  Long story made short, I had a mast and didn't require either radiation or chemo.  Take a deep breath and think positive thoughts....I hope all turns out well for you.