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Refusing Chemo?

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Nicole View Drop Down
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    Posted: Mar 20 2013 at 5:54pm
Has anyone refused chemo?  I've heard all of the arguements for chemo, now I'd like to hear from the other side.  Thx!
DX 12/12, lumpectomy, 1cm, clr nodes and margins. BRACA neg
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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: Mar 21 2013 at 1:01pm
Hello Nicole,
I cannot identify with your choice to refuse chemo, but I would like to welcome you to the TNBC site.  Maybe others will come along who can share why they chose not to do chemo. 
 
I hope things go well for you, whatever you do.  Please keep posting and sharing with us.
 
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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clicrowley Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 1:21pm
I refused chemo. I did my own research and made the my decision on what was best for me.
September I will be 3 years cancer free. Now I just keep up with my check up and continue to live
A healthy life
TNBC Stage1 Aug09, lumpectomy sep09, neg nodes, no chemo only radiation, BRCA1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 1:31pm
I think we are all conditioned to believe that chemo is a "necessary" treatment for TNBC. I understand this approach when tumors are large (2 to 3cm and bigger), or when nodes are involved, BUT why is chemo necessarily pushed when the tumors are small and there is no evidence of any spreading? I did have chemo (my tumor measured 3.2 cm), but IF my tumor had been 1 cm, I am not confident I would have opted for chemo either. I did have radiation too. Seems like a lot of treatment.

Lisa
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beck View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 2:34pm
I DID CHEMO FOR 1.5 CM TUMOR AND NO NODES BECAUSE IT WAS TN
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 3:11pm
I was Stage I and chose chemo. don't know what others have experienced, but nothing was presented to me as necessary or no other option.  Rather, my doctors explained options and the scientific research underlying the options.  With regard to chemo, what they said was:
 
--Studies show that without chemo there is about a 20% chance you will have a metastasis and an 80% you will not.
--With chemo you would reduce your chance of metastasis to about 10% and increase your chance of no metastasis to about 90%
 
(Note:  These stats were based on my personal profile, which included multiple factors such as stage, age, general health, tumor size, etc.  Stats are different for everyone, so do not assume these stats apply to you.)
 
So maybe I did not "need" chemo.  Maybe I was in the 77% that would not get a metastasis without chemo.  But that's the thing - it's impossible to know.  It's all about the odds - and I guess about whether you trust the medical research.  I really did not want a metastasis, and reducing my chances from 23% to 10% seemed like a wonderful thing, a gift really. And I have a lot of faith in medical research.  So I was "all in" on the chemo. 
 
 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 3:16pm
Nicole,

Most of us diagnosed with TNBC are Grade 3, which means it's aggressive.  You are the first I've seen diagnosed with Grade 1.  If this is accurate, I'd think you'd have a much better prognosis for the same stage or size tumor and a better argument for not having chemo.  If you are on the fence about a decision, maybe ask to have a second opinion on your pathology to verify it's grade 1.  We've seen where the pathology can change when reexamined by another lab. 

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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Nicole View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nicole Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 5:03pm
Thank you so much to everyone that has responded so far.  Donna - my grade is 3 (not one).  My main concern with chemo is long-term side effects.  I've had opionions from 2 docs with 2 of the top hospitals in the NY area, and both said "you need chemo" PERIOD (even though my pathology report is probably one of the best it could be for TN).  I was basically given the same odds as Katdoll (76% chance of no recurrence).  Having chemo would raise my odds only to 83%.  It's something, but it's so minimal, I'm not sure I want to take the chance of doing other damage.
DX 12/12, lumpectomy, 1cm, clr nodes and margins. BRACA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 5:50pm
Hi Nicole,

These are very hard decisions. I was a grade 2 (on the low side of grade 2) and my doctors did encourage me to have chemo to shrink the tumor before breast conserving surgery. That made sense in my case and I agreed and did the chemo, which did reduce the size. It was not fun of course, and I hated every minute of it. (Also, I am BRCA negative.) 

I am not sure how much stock you can put into statistics, as each individual case can be very different. I can say that from what I have read on this forum, almost everyone has had chemo, and that does seem to be the treatment du jour for TNBC. My docs at UCLA had said the combo of chemo and radiation will further reduce the odds of recurrence - I assume you are planning on radiation? 

Bottom line - no one can say for sure any amount of treatment will keep you from having a recurrence. You have to go with your gut instincts on this.

Best Wishes,
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clicrowley Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 6:25pm
I made my decision of no chemo after surgery. My nodes where clear and tested possive for BRCA pos. Aug2013 I will be 3 yrs cancer free, I thank God everday
TNBC Stage1 Aug09, lumpectomy sep09, neg nodes, no chemo only radiation, BRCA1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2013 at 7:02pm
Hi Nicole,

Thanks for clarifying the grade.  I know this is a hard decision for many and there's no absolutes with cancer.  I was stage 1, clear nodes, no signs of lymphovascular invasion, good margins, upper, outer tumor and did chemo.  I was given the same percentages as you and Katdoll.  I had about a 13% chance of recurrence after chemo and still had one.  All you can do is gather the information and go with what's right for you.  Wishing you the best.

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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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2013 at 8:57am
   

     Good Morning,    I was just reading your posts and I find it interesting that two of the top New York Doctors told you that you need chemo, Period.   

                    I remember reading Dr. Susan Love's Book, I believe it is called the Breast Book...What really struck me were her words that after all the Dr's say and do and prescribe in the treatment of Breast Cancer, it is really a "Crap Shoot".   This SHOCKED me...I mean this is what a top Breast Specialist says. It made me really realize that they do not have it down pat, statistics or not and it could be that may be one of the reasons you have been encouraged to have Chemo.


                    I know that you are worried about the side effects but the risk of Metastases cannot always be reversed and it is sometimes much more difficult to go back and fix something.

                  
                    I understand your concerns. I have experienced effects of Radiation but am not sorry I had it.


                    This is just my point of view. I pray that you make the best decision for yourself and wish you a future of Good Health...Love, Annie




Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sugarmagzz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2013 at 11:06am
From my perspective as someone who has been diagnosed metastatic from the beginning and knowing what I'm facing, if there is any chance in reducing the risk of metastasis I would do it in a heartbeat. However, everyone is different and I have no idea what chemo your dr is recommending or what your other circumstances are, health or otherwise.

Good luck to you regardless of your choice.
dx 12/27/12 age 34
lymph, liver, & lung mets
BRCA1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2013 at 1:25pm
Hi Nicole!

My dx was TNBC.... 1.1 cm......lumpectomy with clear margins....ALND was negative....my report was Stage 1 and Grade 1 (I questioned this grade and was told that it likely was correct and the viewpoint was that it was TNBC....very aggressive....in spite of grade....as if grade was not a huge issue with figuring out treatment for TNBC....that just by virtue of it being TNBC, it made it a higher grade and whatever the radiologists decided to put for grade was not all that important...that if my tissue was done again it likely would be same, but they were looking at it as a higher grade anyway  in figuring out treatment for me simply because we're dealing with Triple Negative).  I sought the opinion of three oncologists and also my surgeon was very vocally pro chemo simply because it was TNBC.  One onc (my local small town) said no chemo based on my dx, age, statistics, etc.  The next onc was at UAB (expert on TNBC and helps make decisions on guidelines as to how this is treated nationwide) and she said because the size was over .5 cm, I needed chemo and the chemo du jour for me was 4 rounds of TC (Taxotere and Cytoxan) and she thought I would do very well.  I am 63 and in good health.  I then went back to my local (first) onc with this and he continued to disagree with UAB expert.  I decided to get another opinion of an onc who I had heard very good things about (an hour and a half away) who was well acquainted with TNBC.  I was fortunate to get into him as soon as I did with the help of my surgeon who knew him.  He completely agreed with UAB expert and said we would aim for 6 rounds of TC treatment as that was what MDAnderson was saying for someone in my situation.  So, I had my first TC and had very severe SEs and TC treatment was stopped immediately and I am in process of recuperating now.  We have now made decision for no more chemo for me.  I could take 3 rds of Andriamycin/Cytoxan, but there are no guarantees that it will even affect cancer cells in me and you do risk heart complications (even though I have healthy heart and this is not much of a worry) but I could have other SEs.  There is a chance that I have no cancer cells in my body since my dx is so good and this was caught so early and also that since the Taxotere almost killed me (the host of cancer), that his hope was that it killed any cancer cell in my body in this one round.  I am very comfortable with my decision to not have more chemo.  I begin radiation this coming Tuesday.

I think it is so important to remember that we are all different.....try to get the best advice that you can from doctors who you respect and trust.....remember that we are dealing with a very aggressive cancer......and then make your best decision  for yourself which in my case came from my gut.

From here on out, every day is a good day for me and I am so going to try and take care of myself in every way and value this life and try to be of benefit to others in the most positive way I can.

I struggled with my decision.....and wish you the very best in making your decision.

Above all, I wish you PEACE of mind.

Kaye Heart
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HOC Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2013 at 4:44pm
It was a hard decision for me, too, to do chemo.  And then, when I DID decide to do it, which type.  The doctors had recommendations, but in the end, it was up to me.  She was saying AC was my best option, but the Adriamycin can cause heart problems and increased risk of leukemia.  My family has had a lot of heart issues so I was very hesitant to go that route.  I didn't have a lot of faith in my first oncologist anyway, so I went to Seattle Cancer Care Alliance for a second opinion.  The doctor I saw there specialized in triple negative and is currently running clinical trials on TNBC through Fred Hutchinson Cancer Research Center.  I have a lot of faith in her and respect her opinion.  So, when she also recommended the dose dense AC followed by Taxol I took it a lot more seriously.  She was still willing to consider TC, but with my high grade (3) and the tumor being 3cm, she really felt AC to be the better choice.  I had an echo to evaluate my heart rather than the MUGGA since it can show more information and I had the heart concern.  My test came back with a very high score meaning my heart was even stronger than the average.  At that point I decided to just go for it.  Doing the AC reduces my risk of recurrence from 42% to 18%.  (The TC would have reduced it to 23%)  I just finished my second of 4 doses of AC yesterday.  The side effects aren't as bad as I expected.  The drugs to combat them are great and having doctors and nurses on call 24/7 is a huge relief if something does come up.  I wish you all the best as you make your decision.  For me, it was knowing that if it DOES come back, it's much, much harder to deal with.  I want to do everything I can to keep that from happening!
 
Good Luck!
Heather
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2013 at 5:29pm
Heather, I was also treated at SCCA, and had AC/T.  SCCA is amazing.  When I drive by the hospital where I had my ovaries removed and initial breast surveillance (due to having a BRCA mutation), I feel anxious and bit ill.  But when I drive by SCCA or come back for a follow up appointment, I just have good memories.  You are in capable and caring hands.  My family (the BRCA side) also has a lot of heart health issues, but I have not had heart problems nor have the other two women in my family who have done AC.  No leukemia either.  I hope everything continues to go well for you.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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