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Anyone refuse chemo

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MJK View Drop Down
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    Posted: Aug 17 2018 at 4:04pm
First to thank you all for your sharing and courage. I was diagnosed in Feb/18, Stage 3c with a few nodes in question.Brca negative at 64yrs.No history in my family. Surprised but figuring the cancer odds ,not shocked. So many,too many.This sight has calmed my fears giving me great info on the so many questions,large and small. Like having a multitude of second opinions on treatments,side effects and insights. Helping me decide on dbl masectomy,no reconstruction,treatment options and managing the minor side effects. I was lucky to have 12 taxol and ned. My Dr held off on the Ac to monitor my heart,so went forward with taxol weekly.I then asked for CT to see how things were going.No tumor and benign appearance in 2 questionable nodes. Surgery:Great response!! Completely clear pathology.Just one week out of my surgery,drains out and healing. Much easier than I thought.Will have radiation next ,in case of any cell floaters.Then we'll see what we have. That has been my journey aided by this giving from all of you. To all of you ,much appreciation and love. Forever on!! MJK
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VEA2018 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2018 at 3:43pm
CMP thank you for your post. I have to retreat my post on aug. 14. I was wrong what the oncologist suggested. For my mom first is surgery then chemo treatment, that will depend on how many lymph nodes are removed including with a clinical trial, call Adjuvant PVX-410 Vaccine and Durvalumab in stage 2/3 triple negative breast cancer. I asked the dr. is this clinical trial is for stage 2/3 triple negative breast cancer he mentions it does not make any difference this will help her for a reoccurrence. The location Lee Moffitt Cancer Center and research institute in Tampa Florida. I asked about radiation he said if no lymph nodes are involved then radiation only.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2018 at 4:08pm
I had a 5 cm, grade 2/3b tumor.  I knew there was no question about chemo and I had 4 rounds of dose dense AC and 12 weekly Taxol with Carboplatin every third infusion.  I had read so much and heard horror stories.  Remarkably, I had few issues other than fatigue.  I followed the doctor's orders about taking the meds to lessen side effects and I think that was a key for me.

When I had my lumpectomy the entire mass was gone!  I did have some DCIS and lymph node involvement so I then had a mastectomy.  An auxillary lymph node disection was done with the lumpectomy.

I sure would want my oncologist to use their biggest guns.  TNBC is such an aggressive cancer I want every possible chance to keep from a reoccurance!


Ann
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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: Aug 14 2018 at 10:31pm
TC was the protocol.  4 infusions, 3 weeks apart with RADS to follow.  
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 cmp Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2018 at 9:16pm
VEA2018,

Can I ask what clinical trial was offered to your mother (what medication/who offers the trial)? It is interesting to me that he would not suggest radiation but advise the chemotherapy. I wonder why. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote VEA2018 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2018 at 2:15pm
Penny thank you for your post. My mom is 74 years old and she had .6 cm tumor on her left breast I ask the oncologist if chemo was avoidable he recommended a clinical trial instead less toxic due to my mom age. He suggested surgery than a clinical trial but I also mention radiation he did not suggest at all. I was curious what type of chemo did you had? and how many treatments?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2018 at 4:35am
Thank you for telling us your experience, Meadow.  It's lifted my spirits somewhat as I have been a bit depressed of late and feeling some sort of undefined anger.

I don't beat myself up if I am a bit grumpy and low in spirits BTW because I reckon I have earned the right to feel like that.

I had the whole kybosh, op, chemio, radio as advised and I was in no position to resist.  So no decision needed on my part, just as well!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2018 at 12:48am
cmp, my oncologist gave me the option of "treatment with a somewhat less toxic, shorter regimen," that is described in the second article you provide a link for. But it was still chemotherapy. I chose the more standard regimen because it had a slightly higher chance of success. I told my oncologist: "I want all the percentage points I can get." She said: "It's up to you, but that's what I would do if I were you." I was Stage 1 with a 1cm tumor. My sister had a 6mm tumor. At that smaller size, the lighter regimen had the same chances as the heavier one, so the lighter regimen was the only one given to her. We're both doing well 7-8 years down the road.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2018 at 8:14pm
Yes, they were aware of the NCCN guidelines and said since my tumor size was .6cm I fit into the "chemo" category.  .5 and below it would have been "considered" or optional.   .6 cm put me into the next bucket!  I wanted to make sure I had the most aggressive treatment possible and the MO and second opinion said chemo!

Hope that 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 cmp Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2018 at 7:06pm
Penny,

You were advised to do chemo Stage 1A grade 2? Did your oncologist go by the national guidelines:

or was he/she aware of this report:
https://www.mdedge.com/familypracticenews/article/97068/oncology/stage-trumps-biology-most-small-triple-negative-breast

Any other early stage T1a or b node negative, clear margin patients on this forum who refused treatment (rads and chemo)? Please share your experiences.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2018 at 7:40pm
chemo is very doable... 
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 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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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 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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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 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 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 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 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 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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