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

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Topic: To Chemo or Not to Chemo???? That is the Question
Posted By: sparrow
Subject: To Chemo or Not to Chemo???? That is the Question
Date Posted: Feb 09 2008 at 5:33am
Hello Everyone!
 
I am new to this site and new to breast cancer diagnosis.  I am a 60 year old white female and in generally good health.  Have been faithful to get routine mammograms on a yearly basis.  At the end of Dec. 07,  I was called back for ultrasound, more views, etc.  Had a biopsy by ultrasound on Jan. 3, 2008.  Invasive ductal carcinoma diagnosis on Jan. 4, 2008. 
 
At this point I'm stage 1, grade 3, triple negative.  Bone scan negative and all blood work within normal limits.  Have had a bilateral mastectomy on Jan.22.  Sentinal node biopsy was negative in the two nodes that were removed.  No cancer was found in all the breast tissue that was removed, so the cancer (about 8mm.) was removed at the time of biopsy.
 
I chose not to do reconstruction at the time of surgery because I did not know what chemo, etc. that I might be facing.  I really like my new body...sort of a Gweneth Paltrow look!!!!! (I always thought I was too heavy on top for the rest of my body.....don't have to worry about that anymore!)  I used to look like a big breasted robin.....now more of sparrow!Wink
 
Anyway, here's my question.  My oncologist says my chance of recurrence is 16-20%  He proposes 4 rounds of treatments at 3 week intervals using Cytoxan and Taxotere.  This would reduce my chance of recurrence by 3-5 %.  My surgeion says why put myself through chemo for only 3-5%.  Of course the decision is ultimately mine to make.  I have 2-3 weeks yet to decide. 
 
Any thoughts?  Anyone in a similar situation?  Do you know of anyone who was triple negative that refused chemo?  I appreciate any thoughts you may have on my situation. 
 
Thanks,
sparrow
 
 
 
 



Replies:
Posted By: CarynRose
Date Posted: Feb 09 2008 at 5:53am
Dear Sparrow,
 
I'd ask your doctor to consider testing you for the BRCA gene and perhaps doing an OncotypeDX.  Both of these will give you a better idea of your chances of recurrence (better than the simple general population stats).  Because you are triple negative, you don't have tamoxafin or other drugs to prevent recurrence and some studies are showing that aggressive triple negative breast cancer MAY metastacize at a higher rate.
 
I'd want to make sure I had as much protection as possible.
 
Caryn


-------------
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10


Posted By: cg---
Date Posted: Feb 09 2008 at 7:29am

When I asked about OncotypeDX......I was told it is only for estrogen receptor positive breast cancer.

 
 


Posted By: sparrow
Date Posted: Feb 09 2008 at 9:05am
Originally posted by CarynRose CarynRose wrote:

 
I'd ask your doctor to consider testing you for the BRCA gene
 
CarynRose,
 
Thanks for your reply.  I did ask about being tested for the BRCA gene and was told since there is no history of breast cancer in my family, it would be a needless waste of money.  Am told this testing is quite expensive (thousands of dollars).  If one is considering this test, it would be a good idea to check the insurance policy before asking for it to be done; some insurance companies require a pre-determination.


Posted By: sparrow
Date Posted: Feb 09 2008 at 9:18am
Originally posted by cg--- cg--- wrote:

When I asked about OncotypeDX......I was told it is only for estrogen receptor positive breast cancer.

Yes, I was told the same thing when I asked about OncotypeDX.   It is another expensive test, but it  would be well worth any price if it helped in the decision making process!


Posted By: Katie
Date Posted: Feb 09 2008 at 9:20am
Hi Sparrow,
Hope you are doing OK. I am starting 3 cycles of chemo on 14 feb , at 3 week intervals, I have a very similar diagnosis to you. Even with clear lymph nodes there is always a chance that some tiny cells have got into the blood stream, waiting to pop up somewhere else. For the sake of 12 weeks of treatment I think a 3% to 5% decrease in your risk is well worth it.
 
If you take his most positive figures i.e. 16% of recurrence, reduced by 5% if you have the chemo, then you have reduced your risk down to 9% which is 33% better!
 
Its such a personal thing, but for me its a must to have the chemo. I really dont believe my onc would do it without good reason..
 
Wishing you the best with your decision.


-------------
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.


Posted By: sportsmom
Date Posted: Feb 09 2008 at 9:42am
hi sparrow!  my mom is 68 years old and in a very similar situation to you.  had mastectomy, triple neg lobular cancer 5mm, stage 2-3, brac1&2 are negative.  my sis also had cancer 5 yrs ago, but was estrogen pos.
 
My problem is that my mom doesn't know whether to have chemo or not, and is looking to me to help her decide.  My sis is saying don't bother, 5% isn't worth going thru chemo.  Since she went thru it, I respect her decision.  But...I keep going back and forth.  This is my mom's 2nd bout with bc, first was tubular cancer, est positive, and she had chemo.  Four years later, mastectomy due to triple neg. lobular.  I see both sides of the story, and she really wants me to tell her what to do.  I know she can't decide this on her own.  HELP!!!


Posted By: sparrow
Date Posted: Feb 09 2008 at 12:03pm
Originally posted by Katie Katie wrote:

 I am starting 3 cycles of chemo on 14 feb , at 3 week intervals, I have a very similar diagnosis to you. Even with clear lymph nodes there is always a chance that some tiny cells have got into the blood stream, waiting to pop up somewhere else. For the sake of 12 weeks of treatment I think a 3% to 5% decrease in your risk is well worth it.
 
If you take his most positive figures i.e. 16% of recurrence, reduced by 5% if you have the chemo, then you have reduced your risk down to 9% which is 33% better!
 
 
Hi Katie,
 
You have a wonderful positive attitude!  Just wondering did your oncologist give you any figures re: chance of recurrence or how much you would reduce your rate by doing the chemo?  Sounds like they are prescribing the same regimen for both of us.  I know you'll do well with such an optimistic outlook.  Wishing you the best!
 
 


Posted By: sparrow
Date Posted: Feb 09 2008 at 12:21pm
Originally posted by sportsmom sportsmom wrote:

my mom is 68 years old and in a very similar situation to you.  had mastectomy, triple neg lobular cancer 5mm, stage 2-3, brac1&2 are negative. 
 
My problem is that my mom doesn't know whether to have chemo or not, and is looking to me to help her decide.  My sis is saying don't bother, 5% isn't worth going thru chemo.  HELP!!!
 
Hi sportsmom,
 
I can so relate to the difficult situation you and your mom are facing.  Our cases are different in that your mom's is lobular and mine is invasive ductile.  Maybe you and your mom and sister should make a list of pro's and con's...you might find your mom can then make her decision.  Also you might want to take your concerns and get a second opinion.  This is one thing that I am going to do in the next week or so.  I'll be saying a prayer for you and your mom.  I think once we come to our deciisions, we will have inner peace.  It is just the process of getting there that is difficult.
 
Thank you so much for your reply.  It is wonderful that there is a forum like this that we can share our similar situations and concerns.  I'm so glad I found this website!


Posted By: sportsmom
Date Posted: Feb 10 2008 at 5:43am
Sparrow--thanks so much for getting back to me.  We have gotten 3 opinions from oncologists, and their percentages are the same.  No one will actually come out and say what to do, as one oncologist said, "you could sue us if the outcome isn't to your liking".  We have been to the top drs in the NY area, and it's basically 20% - 30% chance recurrance without chemo.  With chemo, it drops 5% to 15% - 25%.  It's a lot to put your body through for 5%.  We're seeing her breast surgeon Tues., who I know will tell her to go ahead with the chemo.  Once you're over 60 yrs old, the drs have told us it's a much harder decision. 
I'll say a prayer for you & my mom that we come to the right one.


Posted By: smithlme
Date Posted: Feb 10 2008 at 6:41am

I saw my chemo as an insurance policy. Whatever I was offered, I took. Because it was high grade, I had dose dense AC for 4 rounds and 4 rounds of Taxol, plus gave myself Neupogen shots in between. I didn't have any node involvement. If there was a "magic" pill, I'd take that too...

 
Linda


Posted By: cg---
Date Posted: Feb 10 2008 at 6:57am
I agree with you absolutely.....my oncologist said that in five years I would have a 50% chance of being alive without chemotherapy, having had the chemotherapy raises my chances by 25% to 75% - I fought to have radiation done post mastectomy which the meta-analysis says adds another 6%. 
 
Whatever treatment - that adds any percentages to my being alive....I want to. 
 
I also did dose dense AC and Taxol with 7 Neupogen shots in between each cycle. 
 
I am 54 .... hoping to be 84.
 
cg---


Posted By: BrendaF
Date Posted: Feb 10 2008 at 7:52am
I think there may be some confusion with the math of how they figure percentages.  If the risk of recurrence is 20% without chemo, and then adding chemo decreases the risk by 5%, there are two ways of looking at the numbers.  The way it is generally analyzed is that the additionsl 5% decrease with chemo is additional 5% of the 20%, in other words 1/20 or one more absolute percent, so 19% chance of recurrence.  If, however, he means an additional absolute 5% chance of non-recurrence, that's a whole lot more benefit from the chemo.  That changes the risk of recurrence from 20% to 15%.  But usually, when they talk of additional benefits of extra treatments, it's a percentage of a percentage.
 
That being said, and as a 3N with mets at age 53, I'd do the chemo absolutely!  I'd do double treatments if they offered it.  Anything, anything, you can do on the front end is worth it.  Chemo is all we 3N's have in the arsenal right now.


Posted By: Cookie
Date Posted: Feb 10 2008 at 9:28am

Sparrow:

I am 60 and was diag. 12/14/07 with triple negative. I was thinking of mastectomy and then asked each of my Dr.s, If this was your wife, and you loved her dearly, what would you recommend - if all things were equal? They all said, a lumpectomy because my breasts were so large and the spot the tumor was in, I'd look just the same. They were right! There is no difference in my breasts now.

Everything I have read and been told, triple negative needs to be treated aggressively. Chemo is a must. The way I look at it, OK, I'll put up with the inconveniece for a few months and if it comes back, I'll know I'd done everything I could have, at the time.

My Dr. in Austin was going to do the usual treatment AC/T every 3 weeks and radiation. My Dr. in AZ is very aggressive and is doing dose dense (every 2 weeks) of Epirubicin and Cytoxen with the usual anti-nausea meds and white blood cell meds. I get the shot for white blood sells once a day for 5 days.

Good luck. It is so easy for everyone to say it is your decision, isn't it?  But remember, you are your only advocate, question, question and question.
 
Cookie
 


Posted By: Katie
Date Posted: Feb 12 2008 at 7:14am
Hi Sparrow,
 
To answer your question about percentages (and we all cling to them like life rafts!) this is what my onc told me:
 
" The lumpectomy might have cured you already"
I asked, 'OK but what are the chances I am not cured?':
he said "30 to 35%" .
 
I was surprised at such a high figure, but I guess he was trying to assure me that the chemo was absolutely necessary.
 
I asked, 'when I am finished Chemo and Radio, what are my chances of recurrence':
he said "20% or less"
 
My guy is known to treat agressively, which is whey I went to him, this is no time for pussy footing around!
 
By the way, he is also treating a lady who is late 60's and has -er-pr,  but HER2+, with chemo.
 
I think you could really get hung up on percentages and I really try not to. Much better to think of the treatment as the journey and the end of treatment as an end to the cancer.
 
 


-------------
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.


Posted By: like2canter
Date Posted: Feb 16 2008 at 10:22am
Hi Sparrow,

My diagnosis was almost exactly the same as yours.  My onc recommended chemo and I had 4 rounds of Taxatere and Cytoxan.  Originally they included Adriamycin, but dropped that when my sentinel nodes came back negative.  He only told me the percentages upon request, because he says it is not a great way to make a decision.  They are, after all, averages, not individuals.  Having said that, he showed me that my risk without chemo is 29% recurrence.  With chemo, I'm only at 15%.  That was enough for me.

The best news is that the chemo was not as bad as I feared.  Yes, you lose your hair and I even had to spend a few nights in the hospital because I got a fever and my white blood count dropped really low.  They gave me Neupogen, which was much worse than the chemo.  It caused serious night sweats, horrible joint pain and a killer headache.  But the chemo itself was not bad at all.  I never had nausea and very little of any other side effects.  I do have a bit of neuropathy in one foot that wakes me up some nights, but no other lingering side effects.

I do still worry about recurrence, and you never really know if chemo helped you or not, but I'm glad I went ahead with it.

Good luck with your decision.  Pray about it and you will feel better with whatever you decide.

Nora


Posted By: sharon in Mich
Date Posted: Feb 29 2008 at 8:28am
Hi Everyone--I just joined the board today. You are a wonderful supportive and informative group. I wish you had been around when I was first diagnosed with triple negative in March of 2005. Back then they didn't even use the term triple negative, but my oncologist made it clear it was a real bad combination and needed to be treated as aggressively as possible. I am lucky to live in a town with a great research hospital, so got several opinions and had first class doctors to choose among. I also had a wonderfully supportive group of friends and family.

I notice in reading the postings that with a couple of exceptions there aren't many who as far from diagnosis as I am. My story so far has a happy ending, or maybe I should call it a middle. I am coming up on 3 years out from diagnosis and have not recurred. I see my oncologist next week and sure do sympathize with that twisted tummy feeling. I feel a little spooky in writing this before my checkup next week, but want to share my (so far) successful battle with those of you who are just starting the fight and making hard decisions about treatment.

My basic story: diagnosed at age 60 with stage 2 invasive multi-focal triple negative ductal bc with at least one lymph node involved 3/27/05. I'd had a clean mammogram in August of 04, and the 2 cm lump was discovered by my PCP in my annual physical.   From the beginning all docs said I would need a mastectomy and chemo. The only question was whether to do the chemo before or after surgery. They were very firm about the need for chemo, and it made sense to me because of the lymph node involvement. The way I saw it, with it in the lymph there was a real good chance there were other cancer cells circulating in my body looking to set up franchises elsewhere. I did not want to give them any more time than necessary out there, so I opted for chemo before surgery. According to the docs and to things I read the only downside with this neo-adjuvant treatment is that if the chemo works you never know how many lymphs were involved in the beginning, but I thought getting on it systemically asap outweighed this. The other upside, which I learned after I started, was that the chemo only works in about 50% of the tns, and if the tumor doesn't shrink in the first couple of sessions you can stop or try another type. I have a job that requires me to do physical work outside and was in good shape at the time of diagnosis. My oncologist didn't feel she needed pull any punches because of my age. She gave dense dosage A/C--4 treatments every 2 weeks--followed by 4 doses of taxol, also at two week intervals and neulasta shots after every infusion. Back in 2005 that was about as aggressive as you could get out side of clinical trials.

I was at the lucky end of spectrum in terms of side effects. After the first treatment, which left me a bit shaky, I had hardly any side effects. I was able to keep on working and continue exercising, which really kept my spirits up. Best of all, the tumors reacted immediately to the chemo. My oncologist could hardly find them when I went back 2 weeks after the first session. When I had the mastectomy in August there were no living cancer cells in the breast or lymphs. I followed the surgery with 6 weeks of daily radiation. I was trying to keep on working normally, so had it scheduled at 7:00 AM. This did make me pretty tired at times and there were days that I had to call in sick and just go to bed for some extra hours of sleep.

So that's my story. I know it's a very personal decision for each of us, but I certainly would opt for chemo again.



Posted By: trip2
Date Posted: Feb 29 2008 at 11:02am
Hi Sharon and a warm welcome to you.
 
We're glad to have you here and thank you for sharing your story.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: sparrow
Date Posted: Feb 29 2008 at 2:44pm

Hi Everyone,

I want to give an update on my decision regarding chemotherapy.  I went to a major cancer center in Nashville, TN.  This was for a second opinion.  All my pathology was reread, and it stayed the same as the original diagnosis.  The oncologist I talked to is also an assistant professor of oncology.  All my previous scans, blood work and other findings were reviewed.  A computer print out was done showing my risk of recurrence based on my personal profie....stage 1, grade 3, age 60, tumor size 8mm, no lymph node involvement, overall good health,etc......the risk of recurrence in 10 years was 22%.  The statistics on the computer print out stated that chemotherapy would reduce my risk by 4.3%. (By the way, you can ask that your rate of recurrence be done for your individual case....oncologists have a program they can print out for you.) All this information was very much in line with what the first oncologist had told me.  At the second opinion appointment, I asked the oncologist of people in a similar situation how many choose chemo vs. how many do not.  The answer was that it is about half and half....some people want to do every possible treatment and others say they just don't have the time. 
 
My decision is not to do chemo.  I will be followed every three months and blood work done.  Scans will be done if I become symptomatic.  Please remember my decision is based on stage 1 and small tumor, 8mm, with no lymph node involvement.  
 
I am at peace with my decision and feel it was the right one for me.  Life has risks.  I live on a busy highway, and I'm sure my risk of being killed is greater than cancer.  We just have to trust the Lord for one day at a time.  Worrying will not change a thing....sometimes I just have to remind myself!
 
Thanks for all your input on this thread.  I hope others will continue to share their thoughts....I'm sure it will help others who come along later.
 
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


Posted By: CarolinOmaha
Date Posted: Feb 29 2008 at 2:51pm
Sparrow and Sportsmom,
 
I had almost exactly the same diagnosis in 9/07, IDC, 1 cm, Stage 1, Grade 3, no nodes, bilateral mastectomy and I was given the same percentages you both were.  I am also age 60 and had regular mammos and this came out of the blue.
I fought tooth and nail to avoid having the chemo but after getting a 2nd and 3rd opinion urging me to do so, I decided to go with it.  I'm at a major cancer center in Omaha at the UNMC and my doc is the head of their Breast Cancer Research Center. He's considered the best in the area and finally convinced me that I should do everything I could to prevent a reoccurance.  My tx is  4 x Cytoxan and Taxotere @ 3 weeks apart as well. I just finished round 3 two days ago - so one more to go.
 
It hasn't been too awfully bad but I really don't know what to say about the small percentage that it increases my chances of a reoccurance. It's sort of depressing in my opinion but I'm trying to remain optimistic about the fact that I'm doing everything I can to fight the return of this beast. Confused 
 
Carol
 


-------------
May your heart always be joyful,
May your song always be sung,
May you stay forever young.


Posted By: trip2
Date 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+


Posted By: susanb
Date 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.



Posted By: sportsmom
Date 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


Posted By: sparrow
Date 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


Posted By: sportsmom
Date 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


Posted By: neecie
Date 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


Posted By: sparrow
Date 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


Posted By: Carly68
Date 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.................................


Posted By: sparrow
Date 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


Posted By: BrendaF
Date 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.


Posted By: colleen
Date 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


Posted By: sparrow
Date 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


Posted By: colleen
Date 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


Posted By: sparrow
Date 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


Posted By: kirby
Date 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


Posted By: Dawnk
Date 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


Posted By: Dawnk
Date 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


Posted By: trip2
Date Posted: Jun 04 2008 at 3:11am
Let us know what you find out Colleen.Smile

-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Wendy2
Date 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


Posted By: Katie
Date 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.


Posted By: cduvall1
Date Posted: Jun 04 2008 at 4:58pm
Hi to all,    I have recently been dx with invasive metaplastic carcinoma: matrix producing, triple negative, had lumpectomy 5/28, tumor 2.2 cm, negative lymph nodes, will see oncologist 6/10 to go over options.  On a prior visit to the oncologist I asked many questions about chemo.  I have spent many hours online searching for answers, most say chemo is recommended for my BC.   At this point I will have the chemo. 


Posted By: like2canter
Date Posted: Jun 04 2008 at 5:13pm
Hi,

I just listened to the teleconference this morning on triple negative.  Their consensus was similar to what I had been told in the past - that triple negative is more sensitive to chemo - which means it works better on us.  And, that no other targeted treatment is available.  Ours is also more fast-growing and more likely to return within the first five years if it is going to return.  I have also been told that it is more likely to met without going through the lymph system, which is why they still recommend chemo when your lymph nodes are negative.  Because of all that -  I chose to do the chemo, although it was VERY tempting to not do it.  I was even more unconvinced on the benefits of radiation and I ended up doing that, too.  Neither one was as tough as I imagined, although they were tough. 

As I've heard so many others advise, though, your choice will be the right one for you.  For those of us who end up with mets, we don't know which action or lack of action really led to it anyway, or maybe there was nothing that could have prevented it.  There are those who have chemo and still get mets and those who don't.  So, once you make your decision, put on your positive armor and plan for the best.  Do what you can and what you are comfortable with.

God will take care of your heart and soul.  The body is temporary - for everyone. 

Nora


Posted By: sparrow
Date Posted: Jun 05 2008 at 2:20pm

cduvall 1,

Welcome to the forum!  Good luck on 6/10 with the oncology appointment. I still get nervous before an onc. appointment. Please let us know how it goes.  Feel free to ask questions here or just vent! It's a wonderful forum, and we want to help and encourage each other. 

I would be interested in knowing your age and how the cancer was detected. Also, you may want to do a separate thread to introduce yourself in the Welcome New Members and more people will respond, as it will better get their attention.
 
God Bless.


-------------
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


Posted By: sparrow
Date Posted: Jun 05 2008 at 2:42pm


 
Nora,
 
Your last two sentences were very touching.  AMEN and Praise God!  The Christian is in a win-win situation!  Clap


-------------
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


Posted By: ravenhawk
Date Posted: Jun 06 2008 at 9:07am
I posted in another topic but this one exactly covers my dilemma.  I am younger than average Im told and that is part of the issue.  My tumor was 2mm so the specialist I saw says 10% or less chance of recurrence and doesnt recommend chemo (which would reduce the chance by 2-3%).  My oncologist says you are so young that ups your chances to maybe 15% chance.  Due to the tumors small size they couldnt get a result on the HER2 so I may or may not be triple negative.  The specialist I got my 2nd opinion from says the benefits from chemo arent large enough for him to recommend it unless I test positive for the BRCA1 or 2.  The genetics clinic hasnt even contacted me yet to set up an appointment and they only test once a month.  Ive been told there is a 4-6 week wait time for results.  So if I wait for the test to decide and it comes back positive Im a looking at chemo starting in August or maybe early september.  This part might sound wierd, No one knows how they will respond to chemo but if it hits me hard I would rather have to deal with it now when the kids are out of school, colds and flus are minimal rather than just as school is starting and cold season begins flaring.  I listen to the specialist and take that chance I wont be one of the 10 that have a recurrence or I can do everything in my power to help reduce that chance even if its only by 2%.  I am not sure what to do really and its very frustrating!!!

-------------
35yrs,DCIS 3/08,left mastectomy 4/08 with expander placement,invasive ductal carcinoma,2mm, stage 1, grade 2,node neg., er/pr -, her2 ??


Posted By: trip2
Date Posted: Jun 06 2008 at 11:41am
Ravenhawk, I'm sorry to say once you step into the c world it is out of our hands for the most part when you are planning your life.  You might work in a few things so don't dispair.  When we get diagnosed we probably had plans or didn't like the season, whatever, the main thing is to get well.
I had my BRCA results in 2 weeks.
 
Good luck to you,
 
 
 
 -
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: sparrow
Date Posted: Jun 06 2008 at 12:40pm

Ravenhawk,

I can certainly relate to your dilemma!  I know how frustrating the indecision can be.  I would ask for a computer print-out of your calculated risk of recurrence.  Computer programs are available and the doctor just types in age, size of tumor, hormone status, health status, and several other factors.  Although it is just a statistic, it will help you weigh the risk you are facing.

Now after you know your risk of recurrence, I would want to know what is my risk in taking chemo?  Not all people respond to chemo in the same way.  I would also ask what happens if you were not able to complete the treatments for some unforseen reason?
 
Is there breast cancer in your family?  I was told genetic testing would be a waste of money, since there is no breast cancer in my family.  You should probably ask to speak one-on-one with a geneticist who could advise you.  Most cancer centers have a geneticist on staff.  Insurance companies do not always cover the expense.
 
Because of your young age and small children, I would get feedback from close family and friends.  When you discuss chemo and get advance offers of help, don't refuse their help!  Breast cancer is hard, but you don't have to do it alone!  Friends and family will want to help.
 
Please keep us posted.  I know it is a difficult decision, but you are the only one who can make it.  Pray about it, and God will lead you to make the decision that is right for you!
 
 
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


Posted By: CarynRose
Date Posted: Jun 06 2008 at 1:04pm
Sparrow,
 
While genetic testing might not have been for you, it is inaccurate to state that just because there is no family history genetic testing is a waste of money.  I am BRCA1+.  I inherited it from my father.  There was NO breast cancer or ovarian cancer on his side of the family.  Why?  They were practically all men and those women in my generation who tested, were negative.  So, if someone is young, hormone negative, even without family history, it IS worth it to test. 
 
It is for that reason that a certified genetics counselor should be consulted, even after a generic oncologist (one who is not an expert on genetic cancers) might say not to test.
 
Cheers,
Caryn


-------------
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10


Posted By: BrendaStar
Date Posted: Jun 06 2008 at 1:11pm
Hi Sparrow,
I was diagnosed with estrogen positive bc in 05. Had the tumor removed and a 5 day rad treatment using the mammosite technique. Was diagnosed in 07 with trip neg. Same breast. Tumor was close to the chest wall.  No lymp involvement. This time, I went for everything. Had a mastectomy , 4 cycles dense dose A/C, followed by 4 cycles dense dose taxol and 28 treatments of rads. I tolerated the chemo extremely well. Only  had one day out of each cycle where I felt a little tired. My decision was to do everything in my power to be sure I never have to deal with bc again.
Brenda


-------------
1st dx July 2005 estrogen +
Lymp w/5 days mammosite therapy, Stage I, no nodes
2dx July 2007 triple neg, skin saving mastectomy. 4 A/C, 4 taxol plus radiation, Stage 2 grade II/III, no nodes


Posted By: sparrow
Date Posted: Jun 06 2008 at 2:00pm

Caryn,

I couldn't agree with you more!  I was just trying to explain what I was told about genetic testing, and this is why I was advising one talk to a geneticist.  Sorry if it sounded something other.  Thanks for clearing this up, in case others misunderstood. 

 
Thanks,
 
 
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


Posted By: ravenhawk
Date Posted: Jun 09 2008 at 4:02am
I was told even though I dont have a strong family history (I have one great aunt) that I could still be BRCA1 or 2 +.  The mutation has to start someplace and I too dont have a lot of women in my family so the gene could be there but just not expressed in anyone else yet.  I have the computer print out and it shows an 18% chance of recurrence but the oncologist I talked to said she thinks its lower than that because my tumor was so small (2mm).  Im still waiting for the genetics clinic to contact me and set up the appointment

-------------
35yrs,DCIS 3/08,left mastectomy 4/08 with expander placement,invasive ductal carcinoma,2mm, stage 1, grade 2,node neg., er/pr -, her2 ??


Posted By: sparrow
Date Posted: Jun 09 2008 at 9:12am
Hi Ravenhawk,
 
Did the oncologist tell you what percentage chemo would lower your risk?  I'll also like to hear what they advise you on genetic testing.  It might be good to find out if insurance will cover both genetic counseling and genetic testing....not that it would keep you from being tested but just so you would know upfront.  Insurance companies vary so much in what they will cover.   I just have not gotten around to looking into genetic testing, but then I'm much older and have no children.  I do have a young niece and wonder if I should be tested for her benefit....something I need to investigate more.
 
It's so wonderful that your tumor was caught at such a small size....I think that's the smallest one I've heard about. 
 
Thanks for keeping us updated!
 
 
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


Posted By: Ascott
Date Posted: Jun 12 2008 at 8:44pm
Has anyone taken a look at this ASCO abstract? I found it interesting because it is an actual sampling of women who went to the hospital with stage 1 triple negative disease over 5 years. The DFS numbers are much much lower than the ones given to me by my oncologist.

http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=32171


Posted By: Ascott
Date Posted: Jun 12 2008 at 8:55pm
I meant to say much higher. No one has died with 6 distant recurrences, 3 local. 25% did an ACT/TAC variety of chemo and 75% did either nothing or a different chemo regimen. My doctor has said that I have a 20-30% chance of recurrence and a 15% chance of death without chemo? How do they come up with their numbers and are they exaggerated?

40 years old TN/1.4cm/grade 3/no nodes/clear margins


Posted By: trip2
Date Posted: Jun 13 2008 at 5:33am
 "Conclusions: Overall and among adjuvant chemotherapy treated patients, TN patients had significantly worse outcomes compared to HR+/HER2- breast cancer patients. Treatment agents and modalities specifically designed for the triple-negative subgroup need to be identified and tested to equilibrate outcomes."
 
 
Ascott, I will read this again but didn't care for the conclusions?


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Katie
Date Posted: Jun 13 2008 at 6:17am
Still, 88% surving disease free for 5 years is encouraging.
The stat I got from my Onc was about 80%+ , maybe becuase my tumour was 2.6cm?


-------------
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.


Posted By: trip2
Date Posted: Jun 13 2008 at 6:51am
Katie you are so right.  There is good and bad in just about everything.
Thank you for pointing this out and someday we will read a study where it is all good  news.Thumbs%20Up-


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: kymmie
Date Posted: Jun 13 2008 at 7:23am
Hi.
How is your chemo going?  I'm afraid I will be faced with the same question, chemo or not.  I am scheduled to have a lumpectomy on June 24th, my surgeon says I may or may not do chemo, but of course I will meet with the oncology team.  My tumor is less than 2cm, but I don't know if nodes are involved yet.
Pray, pray, pray!!!
Hugs to everyone!


-------------
IDC TN dx May 13, 2008
Had lumpectomy on 06/25/2008
0 Node involvement
Clear margins.
4 tx. of Cytoxin & Taxotere
6 weeks rads. Finished all tx on Christmas Eve, 2008.


Posted By: billie
Date Posted: Jun 13 2008 at 8:09am
Hi Kymmie,This is Billie.
  If I would have had my way my sister would have been going to MD Anderson too.She had the month away appointment with them also.But the things that took place during that period of time before seeing the surgeon at md anderson changed her mind.Nothing to do with md anderson,just wrong inf. from a lake jackson radiation oncologist.A long story.She is doing a better job at not looking back at the decisions made than I am.
  Anyway Kimmie,If you do not mind,chould you please keep me posted as to what is going to take place with md anderson.Is it for sure that you are trip negative.Where were you first told that you are trip neg.My sisters diagnosis,I believe was pretty close to yours,and there was no node involvement, thank goodness,after her lumpectomy.Maybe md anderson is doing their own  second testing to determine if you are indeed trip neg.This is why that I am interested.From everything that I have read,there is no getting out of chemo if you are diagnosed with trip neg.
  This could be very interesting to find out.Like I have expressed so many times,if my sister had just made it to MD anderson, I would never have to be waisting my time or brain on second guessing her diagnosis or treatment.
  So Kymmie,You are in what I believe to be in excellent hands.You have a wonderful day and if I do not hear from you before June 24th,best of luck with your surgery and the lympth nosed being negative.Lots of Hugsssssssssss    Billie posting for my sister Betty


Posted By: Ascott
Date Posted: Jun 14 2008 at 5:36am
Hi Pam,

The conclusions tell us what we already know - that our hr+ sisters have a much better outcome with chemotherapy. What I find interesting is that the numbers for death and recurrence are much lower than the percentages our doctors give us. I was told that I had a 20 - 30% of recurrence and a 17% chance of death. I have never been able to find these terrible percentages in any population based studies.


Posted By: trip2
Date Posted: Jun 14 2008 at 5:53am
Good comment Ascott.  Having bc twice I have never been given a number of any respect.
 
These percentages come up once in awhile and by that time they are usually old anyway.  I don't think anyone knows.
 
You hear all the stories where they should have gone on and survived and didn't and then there are the ones who were told to get their paperwork in order and alive years later.
 
-


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: kymmie
Date Posted: Jun 14 2008 at 7:16am
Hi Billie,
Thanks for writing me.  I've been really sad today, so it is good to be able to talk to someone.  When I 1st met my surgeon, Dr. Gildy Babiera, she asked me what all I know?  I said, "how much time do you have?"  She said. "as long as you need".  Anyway, I told her that I know I am 3n and she said yes.  The only way I found out I was 3n was through this or another web site.  I just asked someone what my marker test meant, and someone told me that I'm 3n.  So, md is not retesting me, I guess they are pretty confindent with my path report.  Anyway, she said, my tumor is very small and I may not have to do chemo.  But, the medical oncologist will discuss my options with me.  I just wonder, why my surgeon would tell me that unless maybe chemo is not necessary in some cases.  But, reading all these posts, almost everyone says chemo is a definate for 3nbc?!  So, I guess I'm a little confused right now.  I think if chemo is an option rather than a must, I may deal with it a little better.  I have been told md anderson is the best.  So far, I have had nothing but excellant experiences with them.  They are so organized, they get you right in and out, not a lot of wait time.
They also saw a calcifciation in my right breast so I have to have it biopsied on June 17th.  It is so micro that it was not even picked up on ultrasound, just on mammo.  So, I may be facing bilateral-lumpectomy.  I will keep you posted and good luck with your sister.
Hugs to you, you seem so guinine and sweet.
Kymmie


-------------
IDC TN dx May 13, 2008
Had lumpectomy on 06/25/2008
0 Node involvement
Clear margins.
4 tx. of Cytoxin & Taxotere
6 weeks rads. Finished all tx on Christmas Eve, 2008.


Posted By: kirby
Date Posted: Jun 14 2008 at 4:19pm
Kymmie,
 
It is interesting choice of wording for your surgeon. It is almost verbatim what my surgeon and oncologist said in 2001 ! I think they learn to say things in vague terms until maybe, they learn who they are dealing with[personality of patient] and what their approach is. It is a matter of semantics. Trust me, I am not excusing it. My first appt. with the surgeon I was told I was going for a consultation. I argued with the nurse when she told me to disrobe. I soon figured out every appt. regardless of what they called it everyone wanted to "cop a feel". Now that is old hat, and actually comforting to be checked. My surgeon also used the wording of seeing the onc to discuss my options, even though the indication was there weren't any, unless I wanted to refuse treatment. I found it very disconcerting to be asked by my oncologist "what brings you here?" . By that point, I did feel confused by what seemed double-talk. I replied to him, " you tell me, don't you have all my charts? I want to know everything and why everyone seems to be sidestepping." I like and have a great respect for both my surgeon and oncologist but it took a while to develope.  
 
Good luck to you. 


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: billie
Date Posted: Jun 14 2008 at 7:23pm
Hi Kymmie,  Do not be sad.Again I cannot stress to you enough that I feel that you are in the best place for treatment that you can possibly be.This might be a little long,I tell Nancy and Trip2 that somehow I always seem to end up writting novels.
  I was under the care of MD Anderson in june of last year.I have to say to you that if anything is found in my body that should not be there that is where I am going to go.I had an ultrasound of my abdomine done and on my left side there was a mass showing up.First let me say that I live in Houston,Texas.My daughter and I got on the computer and was able to get me into MD Anderson.Kymmie,I will tell you this,even though I was scarred out of my mind,a calmness came over me,because I knew that whatever the outcome was going to be,that I was going to get treatment at one of  the best places in the world.This is the way that I felt.
  Now I have to tell you that it was a slow going and that the first dr. I saw kinda scared me because she said that from the x rays and procedures that I had already had done and had sent in that this mass had cells in it that resembled cancer cells.She assigned me another Dr. who was going to be my surgeon. ..And everytime that I went out there they got more blood and more blood.Oh, and you will be assigned a number and that will be your identification.Some people say that they do not like that,but it never bothered me.How in the world,would they be able to keep up with so many people if they did not assign them a number?I think that it was about 2 weeks later and I met with this surgeon,got examined,and she said that because of all the markers that had been done from my blood work alone,that she was pretty sure that it was not cancer ,but could not be positive.But one thing that she could say for sure was that if it was any cancer , that they had not gotten into any other organs.I was just beside myself that they had the knowledge to determine that there was no cancer in the other organs from exams and blood work alone.
  Kymmie,my appointments were kinda far apart after that.Even though I was a little anxious to get the surgery done,I was no longer scared,and I knew that there were so many others that had not gotten the news that I had that needed things done asap..Because of my age,I had to see a heart Dr. and that took a little time to get an appt.with him.Anyway to make a long story short,I had my surgery and there was no trace of cancer,but the mass was on my left ovary and it was 21 cetemeters.Can you believe that?Anyway,what I am saying to you is this.When I walked out of that hospital,I know me ,I can tell you that if I had gone to any other place and been told that there was no sign of cancer,I would still be second guessing them.But I have never once second guessed MD Anderson.And when my sister finishes her treatments ,I already know that I am going to be second guessing .
  Now about my sister,when we first found out that she had  BC after her biopsie we  got an appt. with MD Anderson.And it was a month before she could get in.We knew nothing about bc,but my sister had made a statement that her choice would be to have the breast removed and because of her age no reconstruction..Scared to death.So,because it was such a long wait, we thought that she needed to see an oncologist in Lake Jackson,Texas(this is where she had the biopsie done and it is about an hour and one half from Houston,Texas)We were told to see a Dr.Bonnen.He is a radiation oncologist.We were not even aware of the fact that there were different oncologist,1 does the chemo and another does the radiation.So when we went to him we assummed that he had read all of her pathology report.He had her report in his hands.We also had ours that we had made copies of.This Dr.Bonnen had done his internship at MD Anderson and he had just recently broke away from them,that too made me happy,and he even assured me that if there was anything that my sister needed that they did not have,he would get with his collegues at MD Anderson and she would receive it..He told my sister that all that she would need is a few radiation treatments.And that they could be done down there in Lake Jackson.
   So, when my sister and I left his office,we were feeling so much better about everything.We decided that she would cancel her appt. with MD Anderson,which she did, and have the surgeon that had done her biopsie do the lumpectomy and sentinol node down in Lake Jackson.,and she would get her radiation treatments down there also.,this way she could have the treatments done and after each treatment go back to the comfort of her own home.No mention of triple negative. 
  So I was at my computer one morning with my sisters path report in front of me and the tv was on and we always watch Good morning America.I knew that Robin Roberts was doing treatment for BC and that she had to do chemo.because she had lost her hair. ,and she was doing an interview with Chris Rocks wife and the words trip negative came up.Robin said ,yes that is the kind I have.It was as if a light had come on.
  Oh my goodness,I looked on my sisters path report and there it was,It took a little figuring out and putting 2 and 2 together,but I finally figured it out.And I started gathering up information on it.Trip neg-treatment chemo and radiation-Aggressive-Old type of harsh chemo-young women and mostly women of color.It took me a few more days before I told my sister because I did not want to scare her in case I was wrong.My sister did not fit the profile.68 and caucasion.  The surgeon had mentioned the words Trip Negative,but guess what.My sisters and my brain could not get past the word CANCER.So finally I told her and she got another appt. with her surgeon.Oh Yes Triple negative.The surgeon even said that she probably needed a second opionen.
  And so my sister immediately tried to get back with MD Anderson,and her appointment had already been filled and she would have to wait another month.We knew that she could not do that,that was too long to wait.So we talked and she decided that she was going to stay at Lake Jackson and after her lumpectomy
 she would be seeing the chemo oncologist.down there also.I was so sad,but I had to think about her.I also knew that she did not need any more frustration.She was getting very upset by then.
  And come to find out ,the radiation oncologist DR. Bonnen had not bothered to read all of her path report before we came that day.I was so angry and even though I know that you cannot look back ,that you have to go forward ,I am still terribly upset with that Dr.Bonnen.But, I have to say this ,my sister is doing much better than I ever antisappated that she would do on the chemo and that 1 more treatment is all that she has to do,then it is on to the radiation.We both calmed down a lot after she got started.Her Chemo Dr. is a Dr.Falcon and he said that if she wanted to go to MD Anderson that he would help to get her in ,but that he really did not advise it,it had been to long since her diagnosis.
  So now,because of my sisters age and having to go through Chemo when quite possibly that is not MD Andersons way of treating a very early diagnosis and a small tumor and node negative,I am going to be even more upset. with that Dr. Bonnen,because after seeing him ,we cancelled with MD Anderson..Just maybe my sister did not need the chemo after all.
  But you listen to me Kymmie,These people know what they are doing and cancer is all they deal with.And I truly believe what they say on there website,your first choice of treatment will sometimes determine your outcome.If they determine that you do not need Chemo,be happy and get on with your life.These people know what needs to be done.Your treatment will not be the decision of one Dr. like my sister has ,this will be a team of Dr.s.that will come to this decision.about your treatment.I recently read on a website and I wish that I could remember where it was ,but I can't,that the USA is sometimes to quick to give Chemo and that all countries are not like that.Also I understand that at this time there is really no standard way or standard chemo that is given for trip negative.So much Research is still being done.
  So again Kymmie,put yourself in the hands of these people and let them do their work,you may feel at times like they are not getting to you soon enough,but these people know exactally what they are doing..I have to also tell you that when I first started reading on this site ,it really scared me.,that is why I do the research for my sister.I knew that she would never read on here,it would scare her to death.As she goes along with her chemo,when she mentioed a little blood in her nose it was only then that I told her that some of the ladies on this site speak of blood in their nose.Sis don't be afraid,that is sometimes one of the side effects.After my sister finishes her treatment and if God Forbid it decides to come back,we have already decided that MD Anderson is where she will be going.
  OK I warned you,my posting somehow always turns into a novel.But I wanted you to understand why I feel the way that I do about Anderson.There is no place in the world that you could be in better hands.Believe it.  So you take care and think positive thoughts.No matter what the outcome is these people are going to take care of you and you will receive the best possible care that is anywhere out here.  Lots of HuGGGGGGGs  Billie


Posted By: sueellen
Date Posted: Jun 14 2008 at 8:09pm
Billie,
I did not start my treatment at MD Anderson either.  I was diagnosed in Sept 07.  had lumpectomy in October by local surgeon then started radiation locally 35 treatments finished 12-29-07.  I wanted to go to MD anderson for chemo so my radiation doctor made a call and got me in Jan 14, 2008 and I have been there doing chemo (4 FECs and 12 taxols) since, should finish July 2008.
 
I do not regret the decision to go to MD Anderson - it is a great place.  So if your sister still wants to go, tell her to do it!!
 
My prayers to you and your sister and everyone affected by this disease.
Sue


Posted By: billie
Date Posted: Jun 15 2008 at 2:50pm
Hi Sue,Thanks so much for your reply.So you are at MD Anderson also,the same as Kymmie.She sounds a little frightened that she thinks that they may not give her the right treatment about no chemo. 
   This is also something that a lot of us have not heard of.To get the radiation before the chemo.I'll bet that you are going to have a lot of reponces to that.
  I sent you a posting this morning ,but I guess that I did not do it right.But please forgive me if you get 2 answers from me.
  Sue ,To be quite honest I do not think that I could drag my sister away from where she is now.I would never have believed that she would have done as well as Ishe has.I was so worried about that.She even got the shot of Nulasta Fri. after her 3rd chemo.Now nulasta is suppose to have some horrible side effects.But guess what she only had one day of discomfort and that was it.She has arthritis in her back and she is also alergic to just about everything,but she is coming through it like a champ.I am so proud for her.
  But ,as I said in the posting to Kymmie,If I were to get BC or any other kind of cancer and if,god forbid hers metasticises,MD Anderson is where we are going.They are really a caring bunch of people and I truly believe that they know there stuff.
  How are you doing?Are you making it ok? Are you from around here in Houston?You and my sister both will finish sometime in July,but my sister will then have to do chemo.And because that will be so often,I am kinda glad that she will be close to home.Her husband has taken her to every chemo treatment,and I am sure that he will take her to every Radiation treatment.She is 68 and he is 70.This does make it so much more conveient for both of them.
  You keep in contact with us and let us know how you are doing.This place is such a wonderful caring place to come to.The women posting on this foundation are such a great bunch of ladies.Some of them are going through horrible times and yet they taKE THE TIME to help to counsel others.Wonderful So you thke care Sue and so happy to have you with us.Lots of Huggggggggs   Billie


Posted By: kymmie
Date Posted: Jun 16 2008 at 4:15am
Thank you Billie for all your advice, you are a lot of help.  I don't even "physically" know you, but you make me feel better than any of my family or friends.  I do feel confident with MD Anderson for sure.  But, it is also good to hear it from other people.  After all, my grandmother went to MD Anderson and died of breast cancer but that was 27 yrs ago!
I really hope I don't have to do chemo, because I am 44yrs old and  very shy, and don't like attention brought to me in any way!  I want to get back to work, but I can't imagine wearing a scarf or  wig!  I may feel totally different if I actually get to that point.  I do realize that no hair for a couple of months is a small price to pay for our life!
Good luck to you and your sister, she is very lucky to have you.
Oh yeah, I live in Las Vegas, but my daughter lives right here in Houston on Memorial, so we are very lucky to be so close to MD Anderson!
Hugs to you!  I will keep you posted!
Kymmie


-------------
IDC TN dx May 13, 2008
Had lumpectomy on 06/25/2008
0 Node involvement
Clear margins.
4 tx. of Cytoxin & Taxotere
6 weeks rads. Finished all tx on Christmas Eve, 2008.


Posted By: billie
Date Posted: Jun 16 2008 at 7:45am
Hi Kymmie,I am going to try to make this one short and not a novel.We'll see.HEY HEY
  I am so sorry to hear about your grandmother.Twenty seven years ago is a long time ago and I am positive that they knew very little as to what they know now.But one thing that you have to think about.How far advanced was your grandmother before she was diagnosed.Like they say early diagnosis is the key to survival.What worries all of us is this being triple negative and its reaccurance.You might ask to be tested for the BRAC gene for your daughters sake.But I am willing to bet that you will not have to ask MD Anderson to do this test.With your history of your grandmother's BC and you being 44,if they don't mention it,you should suggest to them that you would like it done.
  Also ,one more thing,some of the ladies mentioned a tape recorder.What a wonderful idea.MD Anderson suggested to me last year a binder for all appt.  and procedures that are printed out to be put in.That worked Great also.Perhaps both.
  Kymmie keep your chin up and keep us posted.   Lots of Huggggggs Billie


Posted By: Dawnk
Date Posted: Jun 18 2008 at 3:29pm
I posted this very same question on another board last July and this is what one gal posted.  I found saved it so must have gotten something from it.. I hope someone else can too.
 
 
Dawn:

I was just there in your position a month ago, diagnosed June 5th. I am 42, single mom, had IDC with DCIS removed in two surgeries. Stage 1 Grade 2.

Here's the deal:

The doctors will RUSH you and try to just throw to down the conveyor belt of treatment. You must be your own advocate and learn as much as possible so that when you go into treatment, you understand everything and have CHOSEN your own path. Any doctor will tell you the the standard amount of time that they allow you to wait is THREE MONTHS, so don't let them rush you into anything.

The best advice someone gave me was to go out and get the Dr. Susan Love Breast Book RIGHT AWAY. It will answer all of your questions about everything. It can be scary at first but ultimately it puts the power into your own hands and helps to clear up all of the craziness of a breast cancer diagnosis.

Personally, I have chosen to refuse chemotherapy. This is based on the fact the chemo only helps 8% of the people treated with it and they have NO IDEA who it helps and doesn't help. IF it is that I happen to be one of the 8%, my oncologist tells me that it will decrease my chance of recurrence by a whopping 2%. I have been given a 15% chance of recurrence after surgery and with no treatment, so bringing it down 2% means that after chemo I would have a 13% chance of recurrence. Hardly worth it to me. Ask ANY oncologist for the specific details, and they will have to tell you this sad fact.

Lots of folks will jump down my throat here, and I've gotten used to that. Chemo has indeed helped a LOT of people who had advanced disease and larger tumors, but for early stage folks like us it is still a big huge gamble. There are many other ways you can lower your chances by 2%. The thing is figuring out what YOU feel good about. The NIH says that 99% of people will do ANYTHING for that 1% additional chance. I'm willing to do just about anything, including changing my lifestyle. Some folks would rather not change their lifestyle and just go ahead with chemo instead. Its a personal choice.

I compare it to all the people in my family with dangerously high cholesterol. They are all on the verge of a heart attack and take medications to lower their cholesterol levels... when all they have to do is STOP eating cholesterol! Cholesterol comes from animals, thats it. Stop eating animal products and the bad cholesterol goes away. Its as simple as that. But some people would rather eat their Big Mac and take a pill, than stop eating meat. Same with chemotherapy. Its a personal choice.

Radiation is another debate but does have better odds of working to eliminate LOCAL recurrence. Just remember that if they tell you it lowers your risk by 30%, and you're starting at a 15% chance of recurrence, then it really brings it down to about 10%. The Susan Love book explains how all these figures are formulated very well.

Another important tidbit to keep in mind while making your decision is that overall survival rate is hardly affected by standard treatments, if at all. For example, radiation doesn't have a thing to do with overall survival.

If you want to discuss this more off the boards (because some folks will attack now, watch) email me at spillingblue@gmail.com. I'd be happy to share my resources and information and I only follow well documented research and alternatives.

There are also lots of folks who have either quit chemo or refused it or refused it a second time around on the Health Lifestyles board area of this Web site discussing natural health.

The main thing is... you have time! Get the tumor removed asap, and then take all the time you need to find what feels best for YOU. We will all be here to support you in any decisions you make...

Oh, and one more thing... YOU ARE GOING TO BE OKAY! MOST people live a very very very long time after diagnosis, and by catching it so early, YOU will be one of those people! SO CELEBRATE LIFE!



-------------
Stage 1 Grade 3
Lumpectomy 7/07
Trial Partial Rads 8/07
Chemo 4AC 4Taxol finished 12/07


Posted By: Dawnk
Date Posted: Jun 18 2008 at 3:40pm
Here is one more...
 

Hello,

I am sorry you've had to begin taking steps on this very hard but enlightening journey.
We welcome you with open arms and wide shoulders having been there before you.

Step is such a gem! What amazing advice and what a long time it probably took to write that for you.

From someone newly diagnosed (just a few weeks out of surgery) she sure is informed!

Its funny to me how they've started amping you up for chemo and radiation BEFORE they even know the size of the lump! If you are stage 1 the chances that chemo will help you are tiny, miniscule.

Radiation, I also did not take. I was 1.7cm IDC rather largish tumor but I am 3 years out-- absolutely fabulous. Since I had a grade 2 tumor (like yours not extremely fast growing), and I was told by Majid Ali, MD that he would not offer radiation to his breast cancer patients because in his 'experience' (which is vast) if you get a local recurrence after radiation it always comes back more virle. In addition I was facing another lumpectomy if I had a recurrence (and still would be), and if I had taken radiation I would have to get a full mast if a recurrence happened.

I did surgery and ALL NON TOXIC ADJUNCT treatment after that. It was all non invasive, fairly affordable (when you consider just the co-pays that you'd be forking over for standard treatments) and not too difficult.

The most difficult part of this whole journey is remaining balanced when you are faced with your own mortality. Another difficult aspect is LEARNING all you can about the disease so you can be your OWN best ADVOCATE. Many women will not do this, they are busy, they are 'old school' and are not interested in learning science but instead they are 'trusting' science. We are all different people. I did what was right for me, I am so happy I did.

YES it feels like the world sits sideways for a few weeks (till you get pathology back from surgery). Then for most it gets much easier.

I agree many many girls have done chemo and radiation and had no recurrence. And there are also some (especially stage 1) who have done no toxic treatment and worked hard on lifestyle changes and other integrative treatments that treat the whole body and not just the cancer 'symptom', and have also had no recurrence.

We are the few who will do anything to save ourselves from the side effects of toxic treatment, and from getting wrapped up in the never ending cycle of one doctor after another, one procedure after another (because many times they want to take your ovaries, etc), and one pill after another.

All these treatments make your body more acid (which is why your body was a likely host for cancer in the first place).

Here is a list of questions for your surgeon.

Make sure you write down the answers and have a friend/family member with you to assure you what you heard and remind you what you missed.

If at anytime your doc gets impatient with your questions, or does not give you proper answers GET A NEW DOC. The most important thing you need to do right now is be your own best advocate.

Here's the questions: (others may add more)

1. HOW MANY SENTINAL NODE BIOPSIES HAS THE SURGEON PERFORMED?? (my guy answered over 500 and took only ONE node).

2. HOW MANY NODES WILL YOU TAKE?? (the answer should be ONE or TWO unless they find cancer in those, then they take a few more and test those BEFORE closing you up, (you can write this in on your 'consent form for surgery') ideally you would like a few taken until they do not find any cancer and LEAVE the rest. Some surgeons do a 'full scoop' which makes their job much easier and your recovery much harder, try to avoid this.)

3. WILL I KNOW UPON WAKING THAT THE MARGINS ON THE TUMOR WERE CLEAN? THE NODE INVOLVEMENT?? (The answer should be YES because if he does not have rapid preliminary pathology standing by then he's not up to date on cancer surgery and you could face extra operations and undue suffering which can be avioded by having patholgy present during surgery)

4. If you cannot get clean margins on the tumor, what is the procedure? (Mast on site or will you then need an additional surgery?)

5. By EYE (reading the mammo and sonogram, and biopsy results) at this point, WHAT DO YOU THINK WE'RE DEALING WITH?? (experienced surgeons have seen this stuff so many times that they have a good idea before hand of what they will see)

6. WHY do you they think it is stage 1? What size do you expect it to be? (under 1 cm doesn't get offered chemo)

7. Do you have statistics for people in my position? Do you have "shared decision making capabilities"? (my doctor had a program he punched in my stats and it printed out a sheet of HOW MUCH all the treatments would help someone in my exact position, as well as my survival statistics, this made me feel MUCH better about going to see an oncologist).

8. Can you show me photos of people after the surgery I am going to recieve?

Any of the above can be skipped depending upon weather they are pertinent or not.

Sending you light on this journey it is a hard one but you will get through it.

If for any reason you wish to contact me see the link below

 

 

 



-------------
Stage 1 Grade 3
Lumpectomy 7/07
Trial Partial Rads 8/07
Chemo 4AC 4Taxol finished 12/07


Posted By: kymmie
Date Posted: Jun 18 2008 at 4:42pm
Dawnk,
Thanks so much for posting this message.  I am going out to buy the Dr. Susan Love book first thing in the morning.  This is not the first time I've heard that it is a great book.
Good luck to you.  Love this website.
Kymmie
And yes, MD Anderson have the most caring people I have ever been around in my life.  I get in a good mood when I step into that place, sounds kind of weird, but it really gives me a comforting feeling knowing I am being treated there.


-------------
IDC TN dx May 13, 2008
Had lumpectomy on 06/25/2008
0 Node involvement
Clear margins.
4 tx. of Cytoxin & Taxotere
6 weeks rads. Finished all tx on Christmas Eve, 2008.


Posted By: colleen
Date Posted: Aug 29 2011 at 9:46am
How you doing Sparrow?  It's been 3 years for you and me.

-------------
Colleen
DIAX 4/08 age 49 Stage 1C, 1.8 cm, IDC, Grade 3 Lumpect 5/08
rads 33 end 8/08
no lymph node 0/4 BRCA 1/2neg
no chemo
< stress
> nutrition
9.11 N.E.D


Posted By: colleen
Date Posted: Aug 29 2011 at 10:04am
Do you know how to get in touch with Steph?  Her spillingblue email does not work anymore.  She is probably the single biggest factor in me being an informed patient...so far it has served me well.  I would like to contact her.  Cheers!

-------------
Colleen
DIAX 4/08 age 49 Stage 1C, 1.8 cm, IDC, Grade 3 Lumpect 5/08
rads 33 end 8/08
no lymph node 0/4 BRCA 1/2neg
no chemo
< stress
> nutrition
9.11 N.E.D



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