Let's Talk About Chemotherapy - Chemo - should I or shouldn't I??

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Chemo - should I or shouldn't I??

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Category: TNBC Forums
Forum Name: Let's Talk About Chemotherapy
Forum Description: A place to discuss Chemotherapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=11524
Printed Date: Mar 26 2026 at 11:30pm
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Topic: Chemo - should I or shouldn't I??

Posted By: margaretc
Subject: Chemo - should I or shouldn't I??
Date Posted: Sep 19 2013 at 4:01pm

I'm new to the forum and have been reading through so many posts. Thanks to all for the great info and my love goes out to all of you who have to go through this . . I am 64 years old and recently dx with Stg 1 Grade 2 TNBC. There is no node involvement and I had clear margins on pathology. Had a lumpectomy and then Savi catheter inserted yesterday. Going for radiation next week 2x's day for 5 days. I know this is a CRAZY question BUT has anyone out there decided NOT to have chemo treatments? Are there any statistics on this or does anyone know of the possible outcomes with only radiation and no chemo?? I go to see the medical oncologist next week and have not made any decisions as yet. I was not a candidate for BRCA as there is no breast Cancer in my family (plenty of other types unfortunately). I would really appreciate any input (either good or bad). Thanks so much and God Bless all of you!!

Replies:

Posted By: 123Donna
Date Posted: Sep 19 2013 at 5:58pm

margaretc,

I'm sorry you have a reason to be here - TNBC that is. However, you'll find a wonderful group for support and information. Do you know how big your tumor was? Generally the cut off for chemo is a tumor that is 5mm (or 0.5 cm) or larger. Can you get a second opinion at an NCCN Facility? I'm a big believer in second and even third opinions.

http://www.nccn.org/patients/guidelines/breast/index.html#/4/" rel="nofollow - http://www.nccn.org/patients/guidelines/breast/index.html#/4/

http://www.ascopost.com/issues/december-15-2012/current-perspectives-on-triple-negative-breast-cancers.aspx" rel="nofollow - http://www.ascopost.com/issues/december-15-2012/current-perspectives-on-triple-negative-breast-cancers.aspx

http://www.cancernetwork.com/conference-reports/mbcc2013/content/article/10165/2131856" rel="nofollow - http://www.cancernetwork.com/conference-reports/mbcc2013/content/article/10165/2131856

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: margaretc
Date Posted: Sep 19 2013 at 6:12pm

Thank you for responding Donna. My tumor was 9mm. I'm not sure of the other parameters of the path report.

Posted By: Lillie
Date Posted: Sep 19 2013 at 8:55pm

Dear margaretc,

9mm sounds small but Triple Negative Breast Cancer is an Aggressive Beast. Like Donna said, a second opinion is a really good idea, especially, especially, especially since it sounds as though you fall into an 'iffy' category.

Most all TNBC patients choose to do some chemo. We only have surgery, chemo and radiation to fight with, so please be diligent.

I'm glad you found this site, but so sorry you needed to. Please keep us posted about what choices you make. This is a Terrific Support Site.

God Bless,

Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED

Posted By: margaretc
Date Posted: Sep 19 2013 at 9:08pm

Lillie thanks for the input. I think after meeting with the medical oncologist next week, I will make an appt. for a second opinion at a NCCN center. Its wonderful to have such a great online support system. Thanks again.

Posted By: denise07
Date Posted: Sep 19 2013 at 10:02pm

Dear Margaretc,

Sorry you are going through this.Donna and Lillie sure did give you great advice I agree with them 100%.When I read your post I thought tnbc no chemo? hmmm...to me i don't care how small the tumor is this beast is aggressive we don't have much to fight with this one we have to hit it with all we have.Second opinion great plan. You said starting radiation next week I hope you can get your second opinion in before that because if chemo is needed that is usually done before radiation.Good Luck. Please keep us posted.

Denise

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: margaretc
Date Posted: Sep 19 2013 at 11:51pm

Denise I decided to have the high dose radiation thru a Savi Catheter which has to be implanted fairly soon after lumpectomy (before the tumor space closes.) It is a 5 day, 2x a day treatment .That is why rads are being done first. The radiation oncologist suggested chemo right after this - to quote - "about 1 year of treatment from diagnosis until the end of treatment." Maybe this is finally hitting home with me! Such a small tumor, no nodal involvement and clear margins. I realize that chemo is the treatment of choice but wonder - and I know no one can answer this - is there a chance without chemo? I'd like to hear others feelings about this. Thanks for caring. Sorry I am rambling but as I said, I think its finally sinking in!!

Posted By: 123Donna
Date Posted: Sep 20 2013 at 12:13am

I think the problem we have right now is there isn't a test to determine which people with early stage TNBC don't need chemo. We may have something that will help doctors in the near future, but now unfortunately it's just a crap shoot. Surgery, chemo and radiation is all we have at this time to fight this beast. I'd get a second opinion, then make your decision. How would you feel if you did chemo? How would you feel if you didn't do chemo and you recurred? There's no guarantee. As you can see many of us do chemo and still get a recurrence. I don't want to scare you, but this type of cancer is so unpredictable.

Good luck with your radiation treatment!

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: margaretc
Date Posted: Sep 20 2013 at 1:09am

thank you Donna. I guess I have some big decisions to make soon. Thanks for the concern. God Bless all of you on this site. You are a blessing to so many!

Posted By: kirby
Date Posted: Sep 20 2013 at 1:29am

Margaret, I am not adept at searches to do it for you but I do believe your topic has been a prior topic on this site. There have been a few that did choose to not have chemo or chemo was interrupted. You can do a search thru the archives.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: margaretc
Date Posted: Sep 20 2013 at 4:26pm

Thank you Kirby.

Posted By: clifford1
Date Posted: Sep 22 2013 at 2:43pm

This is a very difficult decision. And, you can only decide. I was diagnosed with a 1.5cm tumor in May 2012. No node involvement. BRACA neg. I had a bilateral mastectomy because I had read a lot of cases where women go back and have a mastectomy after lumpectomy. I decided against chemo after conferring with 3 oncologists. There was a 25% of recurrence without chemo and the percentage dropped to approx 12% with chemo. TNBC is not one disease. There are several subtypes. Each subtypes responds differently to chemo and different types of chemo. Therefore, I felt comfortable taking my chances. I am in perfect health, I take vitamin d and a curcumin supplement. I exercise and I eat a 90% vegan diet. I try to eat organic and local fruits and veggies. Another driver in my decision is my aunt's and neighbor's experiences with TN. Both women had surgery and chemo and experienced recurrence. They have both transitioned. There is a book, titled "Surviving Triple Negative Breast Cancer" where the author interviewed woman who did not take chemo and women who did. I think every person's experience is different.

You have to be at peace with your choice. Do a regret matrix. You have to make a decision that you will not regret....regardless of the outcome.

Good Luck....it is one of the hardest decisions I have had to make. However, I had to make a decision that I was at peace with.

Posted By: margaretc
Date Posted: Sep 22 2013 at 6:29pm

Dear Clifford, Thanks for your candor. I will buy the book, get another opinion and think long and hard about this. I'm not sure if I know how to do a regret matrix but I think I understand what you are saying. I have 5 children, 4 grandchildren and many people who love me but I could not tolerate being a burden to anyone. I have a lot of thinking and praying to do. Prayers to you and all who contribute to these message boards with love and support. Thank you

Posted By: lisab
Date Posted: Sep 22 2013 at 7:38pm

Margaret, so sorry you have to join us here. I opted for no chemo when first diagnosed in 2004. If I had it to do over again, I would have had the chemo. But I am with the others who suggest additional opinions. I actually had three opinions other than my original oncologist and all said they didn't think I needed chemo. That was, however, way before we knew what we know today. Please keep us posted and know that we are here for you.

-------------
Diagnosed June 2004. Lumpectomy and radiation. BRCA2+. PBM w/DIEP Recon March 2005. Mets in chest wall June 2007. Chemo (Gemzar and Carboplatin) with radiation completed January 2008 - 5+ years ago.

Posted By: margaretc
Date Posted: Sep 23 2013 at 8:05am

Lisab, thank you, thank you. I am going for another opinion and I am leaning toward chemo. I am so happy that you are now 5+ years!! God Bless you, stay well and thanks so much.

Posted By: lisab
Date Posted: Sep 23 2013 at 10:50am

Margaret, if I remember correctly, I think I read somewhere that having chemo after the first diagnosis of triple negative gives a higher rate of no recurrence, but don't quote me on that. I just remember reading something like that after my cancer metastasized. Please remember, however, when I was initially diagnosed, we didn't know much about triple negative - as a matter of fact, I didn't know I was triple negative until my cancer returned. I guess what I am saying is, there have been some major major strides in the treatment of triple negative breast cancer, so that is why I would seek a second opinion without hesitation.

I don't want to turn this post into a long one, so I will try to be brief. When my cancer returned, I went back to my original oncologist who had wanted to treat me with chemo in addition to radiation. I was scared to death of chemo and absolutely did not want to have it. I was told my margins were clear, I did have some lymph nodes removed but the tumor was so small that I decided to get several other opinions. Three doctors told me that the addition of chemo to my treatment at that time would only give me about 2% more chance of the cancer not returning and I just didn't think it was worth it. I am not sure, but I am thinking I would have received adriamyacin and cytoxin as chemo drugs. I opted for no chemo.

About 3 years later my cancer metasized to my chest wall. The tumor could not be removed because of its location. I decided at that time to change oncologists for various reasons and God was certainly watching over me because my new oncologist worked closely with doctors at MDAnderson and I received the same treatment I would have gotten had I gone to MDA. The drugs I took were Gemzar and Carboplatin. I never lost my hair either. I had chemo for approximately six months at 3 week intervals.

Should you decide to have chemo, make sure you get anti-nausea medicine. I took Aloxi which worked tremendously for me.

I'm not sure if this chemo regimen is still used but it worked (God willing) for me and I hope whatever path you take does, too.

God bless you and good luck. And if you have any questions at all, just let me know.

Lisa B.

-------------
Diagnosed June 2004. Lumpectomy and radiation. BRCA2+. PBM w/DIEP Recon March 2005. Mets in chest wall June 2007. Chemo (Gemzar and Carboplatin) with radiation completed January 2008 - 5+ years ago.

Posted By: arabella
Date Posted: Sep 23 2013 at 1:48pm

Margaret....I sought 3 opinions....my stats are below. Was very difficult decision and after very severe SEffects from first chemo, it was stopped and I made a decision to opt out of having another chemo combo. I too think it's a gamble and a crapshoot especially when you look at stats for our age group and you take into account potential life changing SEffects from the chemo that might not have any effect on your particular cancer cells. Get the best advice from oncs you trust, then trust yourself and make a decision that you can be at peace with.

Wishing you the best.....wishing you peace.

Kaye

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Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy

Posted By: Charlene
Date Posted: Sep 23 2013 at 2:43pm

Hi, Margaret,

Our cases have some similarities. At the time of my diagnosis, my oncologist said that having chemo would increase my chances of long term survival by about 7%. I was willing to do anything that would contribute to long term survival, but nothing that wouldn't. There are no guarantees either way. Am I glad I did the chemo? Yes, because so far I've done well. But I will never know with any certainty whether it was the chemo that destroyed the cancer or not. I think it boils down to what each of us can live with. When I finished treatment, I did eventually find some peace knowing that I had done all I could to fight this disease. Wish you the best.

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: BanR
Date Posted: Oct 10 2013 at 2:12pm

guess we must go for chemo. heard a stage 1 triple negative breast cancer, can come back as stage 4 lung cancer..who knows! this is one area where there are no definite answers and research is still on.

i have been recently diagnosed as tnbc, stage 1, lumpectomy done, margins clear and no lymph nodes, grade 3. am going for dose dense chemo fec and 3 weekly chemo with taxol starting in 3 weeks.

opted for surgery first, since the lump was small and didnt want to sit with it..and now let the chemo take care of the remaining.

all my wishes to you all!

Posted By: dmwolf
Date Posted: Oct 10 2013 at 3:14pm

How big was the tumor? If less than 0.5cm your risk of recurrence is very very low. Dose dense chemo is pretty heavy duty for a stage I tumor, especially if under 1cm. FEC can damage your heart, and taxol can leave you with permanent neuropathy. Did you get a couple of opinions? There is a 'chemo-lite' option = (cytoxin+taxol) X4 that is supposed to be just as good for super early stage like you.

-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: BanR
Date Posted: Oct 10 2013 at 3:33pm

kind of boundary condition mine is. it is 1.2 cm.

Posted By: margaretc
Date Posted: Oct 24 2013 at 9:15am

Well I have finally made a decision! I will be starting chemo next week with CMF. I did get a second opinion at Sloane Kettering. My first MO thought I should have TC but did give me the option of CMF (she did say that Sloane would recommend that). I was afraid of the taxane drugs as I already have some neuropathy in hands and feet. I hear that CMF doesn't make your hair fall out! They say it is the least toxic of the three regimens they suggested. I do have some anxiety about this especially with the holidays so near. Has any one had treatment with CMF? Would love to hear from you. Thank you all again for being such great support. God Bless!

Posted By: 123Donna
Date Posted: Oct 24 2013 at 9:35am

Margaretc,

I think you've made a good decision. So glad you got a second opinion as I really think it helps us make the best, most informed decisions. I didn't have CMF, but others have and hopefully will post soon.

Donna

Posted By: margaretc
Date Posted: Oct 24 2013 at 2:11pm

Thanks Donna. Looking forward to other posts. Margaret

Posted By: Fats1976
Date Posted: Oct 24 2013 at 4:18pm

Hi Margaretc

My mom did Cmf, Schedule A infusions Day 1 and Day 8, with tablets Day 1 to 14... Then two weeks off, she did 6 rounds, so treatment took 6 months... She didn't loose her hair, but had of thinning, have a look at www.macmillan.org.uk search cmf Chemo it will give you all the info... It was tough, but mom survived it! Keep us updated on your treatment, all the best Fats

-------------
Mom Dx 9/12
Stage 1c No Nodes involved.
Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED.

Posted By: Fats1976
Date Posted: Oct 24 2013 at 4:33pm

Margaretc

My mom started the Chemo in November, then again beginning December, on her two weeks off, we went on holiday over Christmas and new year, She did get tired easily, so we just allowed her to rest most afternoons.... She still helped with my boys because she wanted to, I think with the cmf, it got harder with every round! But everyone is different, I think all Chemo's now a days are managed better with all the medication they give to help with side effects! Just think of all the amazing ladies here that have managed to do chemo, You'll manage! GOD Bless

Posted By: margaretc
Date Posted: Oct 25 2013 at 10:26am

Thank you for all the info Fats. I will check the website. Not sure if i will have pills. I was told all IV. God Bless to you and your Mom.

Posted By: Fats1976
Date Posted: Oct 25 2013 at 10:40am

Hi Margaretc

Yes, there is a few different ways that cmf is given, the Iv one, if I remember is every 3 weeks, The tablets were very hard to take, towards the end, mom hated them, so I think the IV is better!

Have a great weekend!

Fats

Posted By: margaretc
Date Posted: Nov 05 2013 at 11:21pm

Hi all. Had my first chemo last Thursday and I'm still feeling good!! I get a bit "jumpy" at times but the nurse navigator said that it was from the steroids I was given prior to the IV drip. I have heard that the SE can be cumulative so I will just have to wait it out. I'm trying to be VERY positive about this because I have so much to look forward to in the next few months - my daughter and family are coming here for the Christmas holidays and I have a cruise planned for the end of January. (Planned long before my diagnosis but I did take out insurance!!!!) I was hoping to hear from others who had the CMF regimen but I will report back after the next chemo which is in 2 weeks. God Bless

Posted By: lisab
Date Posted: Nov 06 2013 at 8:16am

I am so glad to read that you are responding well to the chemo. I hope this continues and know that we are here for you. I wish I knew about CMF but I don't - I am sorry.

Keep us posted and God be with you through this journey. So many wonderful things for you to look forward to. Keep focused on those and your loving family.

Lisa B.

Posted By: amw3806
Date Posted: Jan 19 2014 at 5:10pm

Just saw this forum and I can really relate. I was diagnosed with TN IDC in Nov. My tumor size was measured at 1.7 cm and I just recently had a lumpectomy with node bx. Thankfully I had clear margins and no node involvement. Also I had the BRCA test and was neg and blood work came back really good as well. I have been trying to decide if I want chemo as well. I do have a fear of recurrence but I am also 31 and want to have a child and have heard about chemo and infertility. The procedures for fertility ( egg/embryo freezing) are too expensive for me. I will definitely be getting a second opinion but I have to meet with my Oncologist Thurs to discuss treatment....Good Luck I guess it really comes down to what is right for you :)

Posted By: TriplePositiveGirl
Date Posted: Jan 20 2014 at 11:55am

Hi amw3806,

Since you are very young with this diagnosis (31), I would bet that even if you had chemo, you would probably see your periods resume normally after treatment is finished. Of course there are no guarantees, but I bet there are other women on these boards that were in your situation (wanting children) that experienced chemo. I hope they share their stories. Since your tumor is 1.7 cm, I'm sure the doctor must be wanting you to do the chemo, right? I think getting a second opinion is smart too. Just keep in mind TNBC is very aggressive, and attacking this cancer with all that is available from the start can help keep recurrence odds down.

Best of luck to you,

Lisa

-------------
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.

Posted By: 123Donna
Date Posted: Jan 20 2014 at 12:26pm

amw,

It's a good idea to bring a list of questions with you when you meet with your onc on Thursday. Do you have a recorder or smart phone where you can record the session? A second opinion is a great idea. I'm just throwing my 2 cents - get the chemo and radiation. Your tumor was 1.7 cm, Stage 1. We only get one chance to throw everything at this beast. TNBC is very aggressive, but usually responds well to chemotherapy. My tumor was 1.5 cm, I did chemo and it still came back. Don't take this diagnosis lightly. Please do everything you can to prevent it from returning. Live with no regrets. At your age, you should get your period back. I've seen several women on this forum and on facebook groups who've gone on to have children after treatment. Wishing you the best.

Donna