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To Chemo or Not to Chemo???? That is the Question

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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2008 at 3:03am
Both times I had bc my tumors were small, one node involved but I went with the lump, chemo and rads the first time and chemo the second time since I also had had a dble mast. positive brca1 mutation.  I wanted to be as agressive as possible.
Even though I know in my heart I made the right decisions especially being positive for brca1 but to tell the truth I am very upset about the mastecomy.  After all the researching, discussing, collecting info, I felt it was the right thing, my surgeon tried to talk me out of it and I woudn't
budge but I do regret it.  That is just my personal feelings and situation.
 
When we make our decisions and have peace with them then we have to go in that direction and know that was the best for us.
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2008 at 11:22am
I was 46 when diagnosed, stage 1, grade 3, ki 67 at 54, invasive ductal carcinoma. I chose a double mastectomy (my surgeon tried to talk me into a lumpectomy) and I was node negative with clean margins. I had 4 rounds of AC and had a horrible time of it.  No one will know how you will respond to chemo, some women are ok with it and some (like myself) are debilitated by it. Would I do it again? Absolutely! I regret only the reconstruction. Chemo sucks, but it is all we have. My mother's cancer returned, as did her mother's. I have run the software myself for the 10 year chemo relapse advantage and it is not too bad (7.4%) but it has only 2.2% mortality benefit. In other words chemo may not extend my life much, but it can help prevent a return of cancer by 7.4%. I'd hate not to do chemo and have the cancer return.

It's been almost 2 years now and I still have fatigue and chemo fog but I'd do it over in a heartbeat if it means I get to live cancer free. You also have to remember that statistics are just numbers, you could always be the 2 women that die no matter what, or you could be the 98 that don't. It sucks to be the 2.2 percent that die anyway, but we have no control over that. You can get hit by a bus tomorrow too.

The point I'm making is to fight to live any way you can, and try to make the best choice possible for yourself. Read a lot, research everything you can, and ask a million questions. Hopefully some day we triple negatives will have more options open to us. Thankfully your cancer was caught early, as was mine. No one can really answer your basic question for you - Chemo or no?, I guess that all depends on you, how long do you think you will live otherwise, what kind of quality of life you have, how well will you cope with chemo, do you have a good support network, etc. My best advice is to go to support groups and talk to all of the women there about their chemo experiences. I found the breast cancer support groups at the Wellness Community to be hugely helpful.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sportsmom Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2008 at 3:20pm

Hi  Sparrow,

Thanks for your update.  It turns out that my mother and I made the same decision.  Based on her age (68), 5 mm, no node involvement, and almost the same info your doctors gave you (at least we know it's standardized!),
my mom decided not to go forward with chemo.  She is at peace with her decision, and I feel it was the right one for her. 
I think what I have learned is that whatever you choose, you must be able to live with yourself and your decision. 
To everyone, thank you for all of your input and opinions, it was great not to feel so alone, because making a decision for someone else is a huge burden, in a way worse than making a decision for yourself.
Thank you!
Sportsmom
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2008 at 3:28am
Hi Sportsmom,
 
I know it is such a relief to finally make a decision!  I'm glad your mom is at peace with her decision, and it is wonderful that her family supports the decision.  Family and friends mean so much at this time.  I am just curious how the doctors responded when your mom decided against chemo?  Were their reactions what you expected?  I was pleasantly surprised that my doctors were very supportive and even said they thought I would do well. 
 
Please do keep posting so we can learn from each other.  Now go out and do something fun with your mom to celebrate her decision.  Let's embrace each moment we are given.  As the words on a hat I saw stated:  LIFE IS SHORT; EAT DESSERT FIRST. 
 
God Bless,
 
 
sparrow 
Luke 12:7
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sportsmom Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2008 at 4:18am
Hi Sparrow!
 
My mom's breast surgeon was very happy with her decision not to do chemo, and told my mom that it is what she would have decided.  That carried a lot of weight with us, because she has been with us for many years, due to my sister's cancer 5 years ago.  (but we are all BRAC neg!).
One of the oncologists we saw at Mt. Sinai recommended to us not to do chemo.  But, he said this in his office, and told us that he would not state that fact again, and if we had asked us in front of his boss, he would tell my mom to go ahead with chemo.  One other oncologist told her to do chemo, and one told my mom that she was on the fence with her.
Given all the above opinions, my mom's age, BRAC neg, 5 mm, no node involvement, after much PAINFUL thought, we came to our decision.
 
What was interesting is that all the docs gave the same % diff (chemo vs. no chemo) of 4 - 5%.  Did we make the right decision?  I hope so, but only time will tell.  But, it's the right decision for right now.  I have been showing my mom this site, and your and everyone else's info made her feel much better.  Knowledge really is power!
Sportsmom
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Post Options Post Options   Thanks (0) Thanks(0)   Quote neecie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 10 2008 at 6:25pm

As a younger woman, I've chosen to take the chemo route. I have 2 daughters ages 6 and 8. I want to see them grow up, I want to be a grandmother one day. I'm going to get cytoxin and adriamycin every 3 weeks for 4 cycles and then my second round will be taxol but don't know details of that yet.

May God's peace that passes all understanding be with you! It's with meSmile
37 yrs old
dx 2-4-08 idc 4mm stage 1 grade 3
lumpectomy 2-15-08
4 rounds AC (started 3/26)
4 rounds Taxol
33 rads
lumpectomy 20-15-08
Chemo starts 3-26-08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2008 at 4:22am
Neecie,
 
Thank you for your post.  This is a great place to get support from others.  As this thread shows, we all have different situations and are unique in our decisions.  Most people are quick to give advice to all of us, but only we can make the choice that is right for us.  I know your girls and your age are a big deciding factor.  Please keep us posted.  Glad you have peace about your decision....only God is able to give us this!  When we are weak, He is strong!!! 
 
May God richly bless you and  those precious little girls!
 
sparrow
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carly68 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2008 at 4:26pm
Well I am really confused now!!!
My surgeon did not even give the choice of chemo or not to chemo,,,,she just said that after the drians came out that was it.................I knew it sounded to good.................................
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2008 at 3:54am
Hi Carly68,
 
My advice to you is to ask your surgeon to refer you to an oncologist.  Since you are stage 11, most likely chemo will be advised if your body can tolerate it.  There is some debate in stage 1 (my case) if chemo is effective or worth the risk.  I would advise you see a couple of oncologists to get their opinion.  Please let us know what you are told.  Most treatment decisions are based on stage and other health factors. 
 
 
God Bless,
 
sparrow
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2008 at 12:41pm
Carly,
 
I looked and don't see your specs, but assuming you are stage II, I know that the protocol at Cleveland Clinic is to do chemo.  When I was dx in 2005, I asked and was told that any tumor = or > 1 cm, or ANY positive nodes gets chemo.  Since there is more attention to triple negative now than then, that might have changed to more aggressive for triple negatives, since the recurrence chance is higher.
 
See an oncologist.  You don't want to walk away not knowing that you have done everything possible on the "front end" of the treatment battle.  If you ended up metastatic, you would be really hard on yourself for taking the easy way out.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 10:36am
Sparrow:  What did you decide?  I am facing this same decision.  Stage1, IDC, Grade 3 Lymph node negative   TN
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 1:38pm
Hi Colleen,
 
I certainly know the feelings you are having now!   It is truly an individual decision, as you are the one who will live with that decision.  I chose bilateral mastectomy in order to avoid radiation.  I decided against chemo, but only after much research, praying and two oncology consultations.  By the time of the second consultation, I had already decided I was not going to do chemo.  The doctor told me that about half will choose chemo and half will refuse it.  I made my decision by looking within myself saying: "How will I feel if the cancer returns with chemo vs. without chemo?"  There are cases where women in our same stage cancer have had it return even after chemo.  Some of the chemo drugs have even been thought to cause cancer.  Many people have permanent damage to their body after chemo....it is not an exact science....always risks involved.  Whatever you decide, you will have peace within after the decision is made.  Everyone sees the treatment issues differently and will gladly give you their opinion.  So I guess my advice is to pray about it and look within yourself.  Life has all kinds of risks.  I live on a busy highway and believe my risk is greater every time I pull out of my driveway than the cancer risk is to me.  I have learned to just live every day to the fullest and take one day at a time.  There is a song that goes:  " For His eye is on the sparrow, and I know He watches me."  Remember those lyrics regardless of which decision you make, for that decision will be right for you! 
 
God Bless and please keep us posted. 
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote colleen Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2008 at 6:22pm
Thanks so much for your response Sparrow.  I am getting a second opinion Wed. June 4th.  I am glad to see some woman questioning the chemo!!
 
49 wf, dx 2008/april
stage 1, grade 3, no nodes
1.8  cm clean margins
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2008 at 1:35pm

Hi Colleen,

If you call the American Cancer Society, they will send you all their publications on breast cancer.  One of the pamphlets:  "Breast Cancer Treatment Guidelines for Patients" was very helpful to me. Be sure to request the most recent version.  Their number is 1-800-ACS-2345

My tumor size was less than 1 cm, and I'm 60 years young!  Oncologists have a computer program they can run  to show you your risk of recurrence.  Be sure and ask for a copy of your particular stats.  Age,stage, tumor size and general health, etc. are all factored in.  Be sure and alert the doctor to any other health problems you have or have had in the past.
 
It is also good to have a friend, spouse, or relative  go with you.  Two sets of ears are good, and it will be helpful for the person to take notes while the doctor talks.  You don't have to make the decision on the spot, so it will be helpful to review your notes and discuss it further when you get home.   
 
Hope this helps.   
 
 
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2008 at 2:10pm
Most ACS stuff is available online. The last time I stopped in the local office, they didn't even have pamphletts.
 
At one time chemo was also determined by age and pre/post menopause.That may be old info by now.
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 Dawnk Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2008 at 5:10pm
Some say if you don't take chemo and it mets, you would kick yourself for not taking it.  I'm at the point now, where if it mets, I would be pissed I took that poison for nothing.  It's a crap shoot and you know you best and must decided what YOU are most comfortable with.
Stage 1 Grade 3
Lumpectomy 7/07
Trial Partial Rads 8/07
Chemo 4AC 4Taxol finished 12/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dawnk Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2008 at 5:16pm
sparrow..I just went back and read your post.  What wonderful wisdom you have and put it so nicely.  I wanted to give pretty much the same advice but I guess I am just a little rough around the edges..
 
Colleen..good luck tommorow!!
Stage 1 Grade 3
Lumpectomy 7/07
Trial Partial Rads 8/07
Chemo 4AC 4Taxol finished 12/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 3:11am
Let us know what you find out Colleen.Smile
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wendy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 5:54am
In my humble opinion, I was stage 2, grade III, had lumpectomy, chemo (Taxotere,Cytoxin) times 4 in '06, had sentinel node biop., no lymph node involement, radiation x 40,  sounds pretty good - well...3/08 mets. to the lungs, back to chemo. I would take the chemo. TC isn't too bad - loss of hair a few days of feeling tired, then back to normal.  There are no guarantees, I was sitting in the best position I thought. I really felt I licked this thing with the no lymph node involvement. My onc. explained to me that TN is very squirrely and TN gets smart to chemo and works it's way elsewhere, however, it does respond well to chemo - anyway as confusing as it is and hard to decide - again my humble opinion is take the chemo!
Wendy2
dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 7:38am
Hi Wendy,
So sorry you have mets, its what we all hate to think about. Was it picked up in tests or did you have symptoms?also, can I ask why you were stage 3, was it the size?
Many thanks for sharing your information.
Katie
46yrs: DX 12/07:Lumpectomy:Stage 2a:Grade 3: TNBC
Lymph nodes neg (SNB)
Clear CT and Bone Scan
Taxotere & Cyclophosphamide x 4,
25 Rads, Fin June 08
My Mom ER neg 1988, still here, no recurrence.
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