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Anyone refuse chemo

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ElsaHope View Drop Down
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    Posted: Dec 16 2017 at 6:53pm
newly diagnosed here, had surgery lump clear margin plus 3 nodes, all clear. Stage 1b. Grade 3
Want to refuse further treatment. Why if tumor removed, it still comes back, and reading other stories they did everything and still it was a crap shoot. I guess I am feeling chemo for TN is ineffective for most.
I'm looking for anyone else who said no. Thank you for reading.
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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: Dec 16 2017 at 7:16pm
Hi Elsa,

What size was your tumor?  The NCCN Guidelines say for TNBC to consider chemotherapy if tumor was .5 cm to just under 1 cm.  And chemotherapy for any tumor 1 cm or larger.

Here's a link to the guidelines:

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

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ElsaHope View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2017 at 7:58pm
Tumor. 1.8cm. I read the guidelines and spoke met with oncologist x4. All "recommend" chemo, because there is nothing else they can offer TN. They all agreed 25% distant reaccursnce if no chemo, 15% with chemo. For 10% seams a little steap? To give up health. My worry is I do not want to make things worse, like get another cancer from treatment or do give up my health for something that I might not even need.
I am looking for ANYONE who has said no, and survived this.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2017 at 8:30pm
Elsa: I think you should think about it. You have no lymph nodes involved. A 10% reduction in possible reaccurance with chemo is a guess, at best.

 Ask them what the error- rate is, if it's 5%, well, that's worthy of the total consideration.


My wife has a possible heart problem, caused by chemo, or radiation,but she was a more advanced stage 3A , so it's a give-and-take , maybe take some time so you are happy with decision...

They're are members and readers here who declined chemo, that could bring some clarity, perhaps...
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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ElsaHope View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2017 at 8:36pm
Error-rate? What does that mean?
All my dads family members died of heart problems.
Oh, I do hope someone will post soon.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2017 at 10:33am
To say chemo doesn't do much for TN is hugely untrue. It's been the reason for many 1000's of women'survival. TN in your breast will not kill you. TN in any other part of your body most likely will. Most TN is very aggressive and fast growing. If there's undetectable by scan cancer cells anywhere in your body, chemo does a very good job of killing them. We are lucky that way, the more aggressive our TN cancer, the more effective chemo tends to be on it. does it suck that we are stuck with such a harsh treatment? Damn skippy it does... But I'm grateful for it, and I'd do it a third time to have a better chance of a long life with my family.
All of that said, it is 100% your choice. I'd say do the soul searching and ask yourself if you'll have regrets if next year it's spread after declining chemo. If you can be at peace with that then you've probably made the right choice for you. If it's just fear of the chemo side effects, speak with a mental health professional that specializes in cancer patients to work through your feelings. And get a second medical oncologist opinion. I got a lot of clarity with my second opinion doctors both times I was diagnosed. It's a huge horrible decision, seek all the professional help you can in making your decision. And then follow your gut! And please stay in touch here, whatever your decision we support you   
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carrie 4 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2017 at 12:15pm
Hi , I was diagnosed with stage 3 A 31/2 year ago . I’m now stage 4 . I’ve done chemo twice now . This October I became NEAD “No Evidence of Disease “ I wouldn’t be NEAD without chemo and it did work for me . Will it come back again ya maybe . I have a family to consider and I want to stay here as long as I can . Even stage 4 has treatment . I think women when diagnosed fear the chemo sometimes more then the cancer . It’s only hair and treatment is for a short time and if you don’t do chemo at all to chase down the loose cells you certainly have a higher chance ending up like me .
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2017 at 1:25pm
Elsa,

I think it will be hard to find someone who refused chemo with a tumor your size.  The cutoff is usually at .5 cm.  You can search the forum for past discussions, but personally I can only think of maybe one or two people who refused chemo.  

I try to think of percentages this way, you'll either be 0% or 100%.  TNBC is more likely to travel through the lymph and vascular system than other types of breast cancer.  Chemo is used to try and catch those cells that may have gotten away.  There's no absolutes that it will work or won't work.  It's just the best choice we have at this time until they come up with targeted therapy.  Ask yourself, if you refuse chemo, how will you feel?  Will you worry you made the wrong decision?  If it returns, how will you feel?

I was given the same percentages as you the first time.  I did chemo and it returned.  I did more chemo with the recurrence and was no evidence of disease after 2 cycles.  I hated the thought of chemo and radiation, but given the choices, it was my only hope for a future.  Chemo can be effective against TNBC.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lucky22 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2017 at 2:48pm
Elsa - I know of one woman on another forum who started chemo but had a bad reaction and that was it. She has been ok for about 4 1/2 years. Node negative and her tumor was 1.5 centimeters
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ElsaHope View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2017 at 2:56pm
123Donna,
Thank you for your reply and thinking about my case. I have to agree with you that it is 0% or 100%. One disturbing fact I learned is that chemo does nothing to cancer stem cells. And I just can not get over the fact that some woman do chemo and it still comes back. At the moment my soul questions to myself are, do I want to be sick waiting for it to come back or keep my health waiting for it to come back. I'm young, and have small kids so it makes this extreme difficult. I know if I had no littles I would not think twice to say "no thank you".
Are those that you know who skipped chemo alive?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lucky22 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2017 at 3:03pm
Elsa- my last chemo is this week, finishing 20 weeks. Obviously, it wasn’t fun and it could be hard, but it was definitely doable. I went camping three times and a week long trip to Universal Studios all during chemo. Once you start treatment you just do it. I have two boys and the thought of not doing everything within my power to be here for them as long as possible is my motivation to do all I can.
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2017 at 12:37pm
Chiming in on this.  I would 100% do chemo/radiation over again.  I finished in June 2017 with my treatment and I was diagnosed one year ago (Dec 7, 2016). It was scary for sure.  I do not regret the chemo at all.  It is very doable.  I pray I don't have to face it again, but if I do I will sign up for chemo again.  I hope this helps.  

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 1279561 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2017 at 2:31pm
My mother was diagnose with TNBC Aug 2011.  She did lumpectomy and after researching more into tnbc, decided to refuse chemo/rads.  All blood work/scans that she has had since have come back clear. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2017 at 10:16pm
Wow, Thank you for sharing about your mom. These are stories I was hoping to find. May God keep her cancer free rest of her life. it's so hard to find anyone who did not do chemo with TN, I'm overwhelmed with information that doesn't make sense.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2017 at 10:18pm
lucky22, thank you for chimming in. You are so brave, I don't think I have it in me for such strength.
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ElsaHope View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ElsaHope Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2017 at 10:22pm
Penny, what type of chemo did you do? They want to have me do dose dense AC-T. I can't, after reading about it, I can not sleep or eat or think or anything, how for stage 1 such harsh treatment.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2017 at 11:26pm
The majority of the long term survivors here did the exact same treatment they're prescribing for you. I worked straight thru my treatment, took care of my family most of the time as well. It was a blip in my life, because I know it got me to here, to today. I saw my son finish grade school, go to college. My daughter graduated college, she's thinking of making me a grandma. My husband and I are restoring our dream house, building our forever empty nest and having the time of our lives. I've not a single regret - just grateful that science had progressed to know the difference of TNBC, and a treatment was available to save me. It wasn't that far back that we were treated the same as all the other breast cancers...and we were those puzzling cases with bad outcomes.
My mother chose to forgo treatment for her breast cancer....It was 2008 and she wasn't young but I still...I'm haunted that she didn't fight to stay with us longer. It still breaks my heart. So yeah, I'm biased. When I hear of a mom with cancer I always want to say, fight for your kids mom if you don't feel like fighting for yourself! Do it for your kids mom, they need their mom, or at least to know she fought to stay with them!
But yeah, I'm biased...
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rstar Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2017 at 3:59am
Hi there,

Ask them about CMF. It's a lighter chemo regimen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2017 at 10:40am
With my small tumor size (.6) it just pushed me over the line to get chemo/RADS.  I had TC.  I know it's scary but so many people have gone through this successfully.  I would recommend getting a second opinion and listen to what the oncologist says.  Ultimately it is your choice.  I am risk adverse and was petrified.  I am through all the treatment and very glad about my decision to have the treatments.  I wanted the best chance to be here long term and for me it was.  You are at the hardest part now, waiting and worried.  Once you have made a decision and have a solid plan, it truly get's easier.  I hope this helped.

God Bless you, 

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lucky22 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 19 2017 at 2:19pm
Elsa - if you do opt out of chemo, would you get radiation?
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