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Chemo - should I or shouldn't I??

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margaretc View Drop Down
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    Posted: 19 Sep 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!! 
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: 19 Sep 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.  




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 NED8/12,CT NED 11/13

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margaretc View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 19 Sep 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.
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 19 Sep 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
ST-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 - 08/2013 NED
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margaretc View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 19 Sep 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.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: 19 Sep 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
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margaretc View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 19 Sep 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!!
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: 20 Sep 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 NED8/12,CT NED 11/13

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margaretc View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 20 Sep 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!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: 20 Sep 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
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margaretc View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 20 Sep 2013 at 4:26pm
Thank you Kirby.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: 22 Sep 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 22 Sep 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: 22 Sep 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote margaretc Quote  Post ReplyReply Direct Link To This Post Posted: 23 Sep 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: 23 Sep 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: 23 Sep 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
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 -
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: 23 Sep 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: 10 Oct 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: 10 Oct 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.
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