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

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    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
 
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2008 at 7:29am

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

 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sportsmom Quote  Post ReplyReply Direct Link To This Post 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!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post 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!
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sportsmom Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote smithlme Quote  Post ReplyReply Direct Link To This Post 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...

 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post 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.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cookie Quote  Post ReplyReply Direct Link To This Post 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.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote like2canter Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sharon in Mich Quote  Post ReplyReply Direct Link To This Post 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.

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Hi Sharon and a warm welcome to you.
 
We're glad to have you here and thank you for sharing your story.
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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
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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 CarolinOmaha Quote  Post ReplyReply Direct Link To This Post 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
 


Edited by CarolinOmaha - Feb 29 2008 at 3:10pm
May your heart always be joyful,
May your song always be sung,
May you stay forever young.
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