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Anyone refuse chemo

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TNBC NC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC NC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2018 at 4:02pm
Thank you very much for the info and the reply
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2018 at 11:01am
The women that I know that refused chemo are dead or dying. Sorry to be a Debbie downer but that's the truth. Chemo sucks but it beats the alternative.
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2018 at 9:20pm
ElsaHope...Very eloquently written.  I personally know significantly more women who received chemo and rads who have died from tnbc than who have lived.  This may be because AA women may get the more aggressive subtype and the response to chemo is mixed.  I am so happy that most women in this Forum have had great success and have gotten past the 5 years milestone.  TNBC is complicated and complex and maybe there is not a one size fits all.  To suggests that a person is not fighting as much to live because she refuses chemo is interesting. The only thing that is certain when it comes to tnbc is....nothing is certain.  Maybe there is no wrong or right choice....not taking chemo for a 10 or 15% gain it just is a different approach that may or may not render the same outcome in the end.

Edited by clifford1 - Feb 21 2018 at 9:23pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susie H Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2018 at 1:35pm
Hi Elsa
I just got the same diagnosis you did. Had small tumor, lumpectomy surgery. 3 lymph nodes tested. All clean. Margins clean. They are recommending general chemo and radiation for 5 months. I'm devastated. Thinking of refusing chemo. What did you end up deciding to do?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2018 at 1:53pm
Susie H,

These are the NCCN Guidelines for considering chemotherapy.  We only get one shot of trying to stop this beast the first time.  If it returns, our choices are so much more limited.



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 gretta58 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2018 at 2:50pm
I HAD the mamaprint done, it showed a 94% chance of recurrence without Chemo. Not liking those odds, so i'm giving it a chance.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2018 at 2:39pm
Thank you, everyone, for the posting my mom was diagnosed with TNBC last week (July 18, 2018) according to the pathology she is stage1 (m) the size is .6 cm we are getting a PET Scan first to see if has Metastases then we are going to see a Dr. maybe two doctors for second opinion. My sister believes in cannabinoids (Cannabis THC oil) strongly she even believes that can kill the cancer cells mom is 74 years old with a good health and she does not want chemo. At this point, I don't know what to tell her I know the only treatment is chemo for this type of cancer. I like to know if anyone has tried alternative treatment instead of chemo and have reduce the tumor or went into remission. Thank you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2018 at 5:36pm
Hi there. Perhaps you might just put aside the decision until your mom has gone to have both opinions. There's so much to learn and I found having the different doctors go through their ideas with me was so helpful in making decisions.

There's chemo and then there's chemo. Before I was dx'd I really didn't know that there was so much available out there and how there are different subtypes of Tneg that react differently to the different chemos. Treatments have come a long long way since I was treated so your mom would have more options to consider.

I have noticed that when the tumor is small, like your moms, that there's often less treatment offered. While that's understandable, too often I see here women who see recurrences when light treatment is given. Tneg is a particularly aggressive cancer, it doesn't give up easily and it's harder to manage if it comes back. So bottom line, throw everything you can at it the first go round.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2018 at 8:25pm
thank you Mainsailset for your post I will definitely wait until we have all the options and decisions from the dr’s meantime mom is is using alternative methods. She is just trying to cope with the news is hard for her. Do you know if anyone who is using alternative methods?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2018 at 9:30am
Unfortunately, every one I've known here at the Tneg family who tried alternative resources has died. I'm sorry to be blunt, but that's just the way it is.

The news of being dx'd with tneg doesn't just take your breath away, it shifts the earth under your feet, all the things you take for granted suddenly seem out of reach. But here's an important tip, the weeks before you figure out and start a plan of attack with chemo are the very hardest. It's that feeling of limbo and not being in control that are crushing.

Once the first chemo is under your belt daylight comes back, the world stops spinning and you can open your eyes again. Strangely, chemo can become a partner to you. There's always challenges but a bond builds with the medical team and strength returns.

The fight takes commitment, she'll have to be good to herself and learn things about herself she didn't know. Exercise is a terrific way to maintain strength, to get out and engage the world.

Most of us here find that Vit D & Calcium are good things to have docs check levels on and then add to our vitamins. There's a terrific ongoing Vit D thread here which answers lots of questions.

Hang in there, and please come back often, we all know the feelings you and your mom have.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2018 at 7:04pm
I knew someone on another forum who was using alternative methods of cannaboids.  Sadly it didn't work to stop TNBC.  There's a big difference between "alternative" and "complementary".  Personally, I think some complementary treatment helps traditional medicine and may make it more effective.  I'm not so convinced with alternative medicine. 

Edited by 123Donna - Jul 25 2018 at 7:11pm
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 VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 7:46am
123Donna thank you for responding my post the only issue I have mom is 74 years old and her health is ok but she has cardio problems and some of the side affect of chemo could be cardio mom has told me she wants to have a good quality life if she can survive at least two years with out chemo she is ok with it rather then going to hospital constant for other issues cause by chemo. I don’t sometimes what to tell her. Sometimes I beieleve using THC can help her. We haven’t seen any doctors yet mom had her PET scan yeterday so we are now making appt. with doctors
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 12:06pm
I meant to say THC may help as a complimentary treatment.

There are NCCN guidelines about treatment you may want to review.  Two things come to mind where the suggestion for chemo is 0.5 cm and larger.  Your mom falls into that grey area of her tumor being 0.6 cm which is at the borderline of considering chemo and not recommending chemo.  The other consideration is her age and health condition. 

Look at page 42 about chemotherapy after age 70:


Look at page 44 about the grey area of "no chemo and consider chemo":


Look at this information and use it as a discussion tool with your mom's medical team.  Her overall health and age may be the deciding factor.  It may be that the benefit of chemo is so small that the risk to her health would be more detrimental to her.

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 Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 1:28pm
I too did not want chemo.  I found my cancer early and there was no delay in mammo and echo, needle biopsy, surgeon, anaesthetist, op.  I argued about having chemo for such a small lump (only 2 cm) and no lymph node involvement.
My surgeon explained that he didn't want me coming back after 2 years with mets and a friend sent me an article that said that surgery, chemo and rads is the only way to go.
Fortunately for me, where I live in France, this sequence is more or less invariable.  I did feel like I was on a conveyor belt and I was too confused and frightened to protest or get off the belt.  BUT, after my first year, I am almost completely back to normal health and this was despite a bronchitis that lasted 9 months all through my treatment and gave me more grief than the cancer and its treatment.
Everyday, I am glad that I went along with my treatment plan.  I feel that it's a tried and tested plan and, in the absence of any new treatments, it's as well to just take what's on offer.
It might help if you plan ahead: for example, sort out a diet full of vitamins and protein, keep active, prepare your body and your mind to hone them to the very best state possible and go see a wig specialist BEFORE treatment if you know you will lose your hair.  I had a beautiful wig and psychologically it gave me the courage to face up to hair loss.  I also arranged for help with meals and housework and, after all that, I sat back and thought OK now just bring it on, I am READY!


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 2:43pm
If you trust the scientific method and statistical studies, which your doctor can explain and share with you, I don't know why you'd decline chemo. In my case (1cm tumor, Stage I, age 44 in otherwise good health), studies and stats showed that without chemo I'd have a 23% chance of recurrence, and with chemo I'd have about a 12% chance of recurrence. So in other words the chance of recurrence was almost 100% higher if I didn't get chemo. It was a no brainer for me to get chemo - in fact I was eager to get it going given studies also show that if you don't get started within a certain amount of time after diagnosis, it will be less likely to work.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigi123 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 9:24pm
Hi I’m not one to give advice as I’ve been in denial of this awful disease. I posted when I was first diagnosed and scared to post again because it makes this more real. I’m going through the motions and hope you really consider getting a second opinion and giving chemo a chance. I am stage 1 grade 3. I opted for double mastectomy - tumor was 1.3 cm and dr said good margins. I’m going through chemo now and feel like this is my insurance policy. The first couple of treatments were not easy BUT they are doable. I did the 4 AC and 12 taxol. I have 4 treatments left and would not change my decision. Prayers coming your way!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2018 at 11:44pm
Gigi123 I really appreciate your advice I am planning to have two opinions for my mother cancer it just that at her age of 74 it’s hard for her to accept that chemo will work without any consequences keep in mind that she may accept radiation instead I will have to wait and see what the doctors will determine what will work for her body it is going to be a difficult decisions I know for fact that she wants a good quality life if means only two years.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2018 at 4:48pm
here is a very interesting article published last year

https://academic.oup.com/jnci/article/110/5/493/4718501

Recent Trends in Chemotherapy Use and Oncologists’ Treatment Recommendations for Early-Stage Breast Cancer


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Gigi123 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Gigi123 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 02 2018 at 5:12pm
Thank you for posting. I am not sure if this completely applies to us with triple negative. From what I can see some of these are ER positive. I will read it again.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2018 at 10:02am
You are correct Gigi, this only applies th ER/PR+, HER2- cancers, not TNBC or HER2+ cancer.
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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