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Say NO to Chemo?

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Poll Question: What have you tried outside of traditional treatment?
Poll Choice Votes Poll Statistics
19 [23.17%]
12 [14.63%]
7 [8.54%]
3 [3.66%]
33 [40.24%]
8 [9.76%]
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Katdoll View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 6:39pm
I'd encourage here to talk to another oncologist. They can give her detailed information about recurrence rates based on her individual circumstances, with chemo and without chemo. Also, there are different types of chemo, some with less side and long term effects than others. I chose the tough course and there were side effects but not nearly as bad as I thought. I know someone who had a different type of chemo - one I was offered but which had a slightly lower cure rate - and it was much gentler than mine with much less potential for problems down the road.. She had four infusions and the only side effects she had were hair loss and she slept a lot more than usual.
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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krisa View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2012 at 10:24pm
Alsquest, how did the doctor determine the age of the tumor? As others have said, sometimes we dont know if chemo will help us. It truely is a crap shoot. TNBC is not a one size fits all type of breast cancer ( no cancer is) but for most of us, it s very aggressive. There are many members here, who have chemo first and have seen dramatic results with their tumor/s shrinking- disappearing before they have surgery. Chemo works for them. Others will see their tumor grow (taxol) and have to change to a different chemo.
Take care.
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alsquest View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alsquest Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 8:05am
I'm not sure how the doctor determined the age, but he is a very well respected surgeon and we rust him. I cannot pm dmwolf to understand how to decipher the gene on the gene analysis. Anyone know? She refuses to see any more oncologists. She wants to do radiation, and I am hoping while we go through that, we will have some more time to better understand the chemo options. Please, pray for her, as I will for all of you. 
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 9:15am
I don't know where you are..but here are two recomendations..
 
M.D.A....Dr. Gonzalas...Houston
 
Vanderbilt...Dr. Mayer.....Nashville
 
I am sure there are many more that others can recommend


Edited by Carol (Tenn) - Nov 12 2012 at 9:16am
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 10:12am
Alsquest,

It sounds like your wife has made her decision without seeking the advice of knowdgeable oncologists. GPs and surgeons aren't trained in the same field so should not be making treatment decisions as an oncologist. I seek my oncs advice when making treatment decisions for TNBC. I seek the advice of my great GP for my thyroid problem.

I guess you must come to peace with your wife's decision. Chemo is given after surgery to mop up any cells that may have escaped from the tumor. There is a window of opportunity for treatment. After so many months (cant quote exact number), chemo is no longer an option. Radiation will only help prevent a local recurrence. It does nothing for distal recurrence.

As you can see from my signature I had a small tumor, no nodes and clear margins, but still had a recurrence to an internal mammary node on the other side of the breast away from the original tumor. TNBC is aggressive and doesn't play by the same rules. Krisa is right about all this being a crapshoot.

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 11:47am
Just wanted to share Mainy's comments in another thread for someone seeking advice on metaplastic bc. The only reason I'm reposting is Mainy is very wise and I wish I'd had known her when I was first diagnosed.

Originally posted by mainsailset mainsailset wrote:



My first thought was that I have seen too many friends here who were under treated by well meaning doctors. I had the same experience when I started out and it was only through the kindly kick in the butt from a member here that I packed my bags and got a 2nd and 3rd opinion whereupon I chose the toughest treatment regime that was offered. I'm a believer that the first go round is the most important and your instinct to leave no stone unturned is likely the instinct that will save your life.
 
Do keep an open mind to clinical trials if they are offered. Where are you? There are so many more specialists now and you may want to locate someone closer to home to add to your information after you go to MD Anderson. Anderson is rated #1 overall but that's not to say there aren't some true heroes out there in different states.
 
So glad you found us!
Best, Mainy
 
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 kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 12:49pm
Alsquest, 

Not sure why you can't pm dmwolf. She is extremely knowledgable and works in cancer research . We are fortunate to have her posting here. 

I was dx at your wife's age in 2001. I was was TOLD I would be having chemo. My tumor was a bit smaller than your wife's. all this was before they knew what TN was. I too, was stunned and didn't fully understand when I knew people that didnt go thru chemo. I feel fortunate that my dr.s insisted even though studies didnt come out for TN until several years later. Yes, there is always choice. Hopefully an informed one. I didn't want to live with regrets. Chemo was actually quite doable. I was a single parent and continued to work, barely altering my life. I looked at it as "giving up 6 months " to ensure my future. 

You've gotten some very good advice here. Good luck to you and your wife. 

A friend of mine would post for his wife that was dx a couple years ago. The wife refused to come on this forum. She still has. It gave the husband piece of mind to connect with everyone. 

I advocate for choice so do not mean to offend. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 2:36pm
Alsquest -- I recommend that you check out the information listed in NEW members > OPEN ACCESS links, articles. 
http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page1.html
The thread has basic and advanced information from the medical literature on all aspects of TNBC.  There is a window period for getting adjuvant chemo and it is important that decisions are made with all information available.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2012 at 4:38pm
Your doctor's wife should be able to tell you the percent chance of the cancer coming back if your wife doesn't get the chemo, and if she does. That is very important information to consider. Also, if the potential effects of the recommend chemo worry your wife, ask if there is a different type of chemo with lesser potential side effects. The chemo I took had some significant side effects and a very low risk of heart damage. The side effects were manageable and my heart is fine. I was offered a different course of chemo that I was told would like have fewer side effects and no danger of heart damage - but a slightly lower cure rate. I know two people who did that alternative course, and the only side effects they had were hair loss and they slept a lot more than usual.    

If your wife is so worried about side effects - how about she start the chemo with a plan to stop if the side effects are too much for her?
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 MUSHY1 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2012 at 4:36am
hi, I am Steve...try researching ALKALINE DIET......you need to flush your body of ACIDIC waste stored in your body. Also research GRAVIOLA FRUIT, it has natural powers of killing malignant cancer cells
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2012 at 2:54pm
Hi Krisa,
It is possible to determine the Approximate age of a tumor by the cellular growth rate and other factors.  For example, my tumor had a specific size and ki67---using that, along with other mediators, we determined that my tumor was probably 6 to 12 months old---likely at the most, 9 months old.  But, more likely, a tumor, or tumors, will not have a regular growth rate.  It can start as a partial mutation, achieve growth factors or other co factors, and stall or push on at an accelerated rate. 
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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