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Chemo no chemo

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Dawnk View Drop Down
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    Posted: 13 Aug 2007 at 11:17am

that is the question.

Trying to sort out ALL the information and make the best descision for me which is getting foggier by the minute.
 
My info: Stage 1 Grade 3 invasive ductal carcinoma
tumor 1.9 x 1.2 removed by lumpectomy 7/31 with sentile node biopsy
no node involement and I am triple negative on the hormone,, estrogen her2.  I am in good health other than I smoke and have high cholestrol
 
They are saying that by taking the combo treatment ac & taxol (??) I better my chances of reoccurance by 10-15 % . Pretty big number to me...I asked about wait and watch..he said that doing that ..when and if it comes back they will no longer be able to cure it.????
 
The radiation was just as I suspected..6 weeks of 5x a week treatments..these treatment cannt be done in my home town. Protocol is 4 months of chemo combo and 6 weeks of radiation. THere is a clinical they have going that gives the radiaton 2x a day 6 hours apart for a week straight and then a couple week rest and onto chemo..or not.. The quickness of it ..eliminating the drive 30x back and forth is really appealing to me. Just not sure about the sameness of the treatments...this means they dont know if this works as well as the standard??
 
I didnt really care for the chemo doctor...maybe just cuz he selling chemo..LOL.  As I have made clear to anyone I have talked to I dont want chemo but 15% is a pretty big number.. But is that 10-15% a true number.. that number in my head isn't true, as what if I am not one of the 8% that chemo does work on??...
 
the reasons for not wanting chemo are long too...going into menopause..im not absouluty sure I dont want a kid...also understand at 42 those odds arent to good on a normal person..but just dont want the option to be over.chemo would take away that option...the toxicitity of it..killing good and bad...almost guarnteeing menopause..possilbity of leukimia, damaginig my heart...of course losing my hair or the chance the chemo will cause another cancer...urgg..
 
Anyone choose no chemo?
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sportress View Drop Down
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i refused chemo   1.6cm tumor, negative SNB. i have adenoid cystic carcinoma which is rare. the am cancer society and mayo say chemo is of zero benefit for my type of cancer, but they really tried to bully me into it.
 
the onc went as far as to say dead or dying in 2 months, come back when you decide you want to live.  He also told me he guaranteed that i would spend 1 week a month in the ICU on a vent, because i had toxemia from a rash, and i am very sensitive to poision. Funny how he could not see why i did not jump at the chance.
 
it has been 5 yrs on the 22nd of this month since i had surgery.  I am just fine and grateful everyday that i am not suffering the long term effects of chemo.  this is my opinon however and no one elses.
 
i dont do well when pushed to the wall (which i felt the docs selling chemo were doing to me)  push my back against the wall and i will fight you to the death.
 
everyone makes their own decision. when i made the onc mad enough he admitted to the the MAXIUMUM benefit anyone got from chemo was 7% the average was 3%, he said wouldn't you want a 3% better chance of living 5 yrs???  The surgeon gave me a maximum chance of 50% survival at 5 yrs, 3% more would BE NOTHING TO ME.
 
 
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: 15 Aug 2007 at 11:46am
Hello Dawn and Sportress and welcome.
 
Boy chemo or not is a tough question and is surely a personal one.
 
I myself have gone w/chemo but that was my decision.
 
Best of luck to both of you and let us know what you decide to do,
Stage 2 2003
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Melaniesmom View Drop Down
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I went with Chemo - grade 3, 3.9 cm tumor, mastectomy. I hate every minute of the sh*t (sorry) but I do it to live - I want to see my daughter grow up, graduate, go to college, have a career etc. I also did it because I want to be here.
Sappy and all - as I have been told - this is a temporary situation. I was pregnant and lived in a 28ft RV while we rebuilt our house for longer than this is going to take! 
 
My opinion, Amy
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Ronda View Drop Down
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Hi Dawn,
    You sound alot like I was back in March.  I'm a self proclaimed granola cruncher who always swore if I ever had cancer they wouldn't get near me with chemo.  Well I ate those words.  My reasoning went something like this...
1). If it came back and turned out to be terminal I would have felt like I should have done the chemo.
2).  My husband really wanted me to.
3).  I compromised with my "all natural" lifestyle by using intergative natural medicine (with the help of an exceptional naturopath) with the chemo, my side effects were minimal.  My last treatment of AC+T was a week ago, and honestly I feel better today than I did before I started chemo, but everyone is different.
4).  I had found a web site that had photos of bc tumors that were the size of cantaloupes with festering nasty sores and a realized I needed to try to kill this crap with anything I could.
5).  Grade 3 tumors are really aggressive, so I felt I needed to be aggressive too.
6).  I spoke with many people who survived cancer with and without chemo, then I realized then ones who died from cancer had no voice or opinion they became a number in the statistics.  We are fortunate to have options, I chose them all.     
 
       The menopause thing was a big deal too, I'm 44 and even though I have kids, it really bugged me that the stuff did that.  I have missed two periods and have hot flashes, but I'm o.k. with it 'cause I LOVE not having periods.  You can make this experience how you want it, I interviewed docs and oncs and naturopaths until I had a mix I could live with.  I was high maintenance and picked and chose what drugs I was willing to take (next to none) for nausea.  I read up on every drug they gave me and I chose my path. I am totally o.k. with the results and hope to hell the crap never comes back, I did all I could and am still doing all I can by way of supplements.  It sucks being in this club, but I'm glad I found this site.  Best of luck to you!
Ronda 


Edited by Ronda - 16 Aug 2007 at 6:41am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote deb522 Quote  Post ReplyReply Direct Link To This Post Posted: 30 Aug 2007 at 3:14am
I was diagnosed last year with Breast Cancer and had bi-lateral mastectomies done with chemo to follow. Unfortunately I ended up being taken off the chemo early due to Congestive Heart FAilure. I now have and ICD implanted in my chest to ward off any Sudden Cardiac Arrest. The doc feels I have had enough chemo hopefully to ward off the disease. I had Hodgkins Disease when I was a teen and have had too much radiation to the chest (heart) as it is. I had Taxol, Adriamycin and Herceptin. So be assertive to have the doc keep an eye on your heart during chemo. My heart function was checked right before I started chemo, but wasn't checked again until it was too late.
My prayers are with you - Take care,
Debbie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sharon Quote  Post ReplyReply Direct Link To This Post Posted: 25 Sep 2007 at 11:40am
I'm 36 and was diagnosed 10/30/06. I had 8 rounds (ac/taxol) of chemo, right side masectomy and 35 rounds of radiation. The chemo had gotten all the cancer by the time I had surgery. I felt by doing the chemo I was getting rid of the cancer and by doing the chemo first I could feel the tumor shrinking. Not doing chemo was not an option for me. I would do anything in this world to be around for my daughter so my attitude was BRING IT ON. I say Chemo all the way. It's a very personal choice. Godd luck.

Edited by Sharon - 26 Sep 2007 at 7:47am
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I chose not to have chemo after I was diagnosed with DCIS, no node involvement, small tumor.  I did have 33 radiation treatments after a lumpectomy.  Found out I was BRCA2+, so I had hysterectomy, and double mastectomy with reconstruction.  I now have recurrence in my chest above my left breast where the original cancer was.  If I had it to do over again, I would have had the chemo, only because of what I have learned (very little actually, that's why I'm here) about being triple negative.  But three years ago, I thought I was making the right decision.  BTW, I got three other opinions from oncologists other than mine and they all agreed that chemo wasn't necessary.  Perhaps you may want to get several other opinions before you make a decision.  I had such a fear of chemo that I would have done everything I could not to have to have it.  And now here I am having it.  But like I said, at the time, I made the best decision I could based on what I knew and the opinions of other oncologists.  I wish you luck with your decision.  It is very hard, I know.  BTW, I was diagnosed at 54 years of age and I am now 57.
 
Lisa B.
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Choosing chemo is a very hard choice.  Once you start to loose your hair then people will know that you are sick.  Until I had breast cancer I have never really been sick in my life.  I know about the fertility issue because at the time I was diagnosed I was only 30 years old.  I could have post poned treatment for 6 weeks to harvest my eggs, but I decided to just treat my body here and now.  From talking to the doctors I know that my tumor which was 4cm grew in less than 6 months. I was fortuneate that my tumor did not spread to my lymph nodes. 
 
I just finished chemo in March of 2007 and radiation in May.  Have gone through all the treatment I know that deep down I have done the right thing.  I was able to work the entire time through treatment.  I also took public transportation everyday to work and never got sick.
 
I have no idea if I will be able to have kids till a few years down the road.  I hope to one day be blessed with having kids, but I know that I would rather fight the cancer now with everything that I can then leave a child motherless.  Life is an unpredictable path. If you can control somethings in your life then I say go for it.  However I will never sit by and let life pass me by.
Victoria
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stage 2a node negative
4cm tumor
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Hi everyone!
 
I am a newbie to the site.  I have just undergone a bilaterla mastectomy with reconstruction due to a second dx of triple x IDC.  It seems to be a local recurrence.  I was first diagnosed in 02/06 (stage 1) and had a lumpectomy, 4 AC, 4 Taxol and 37 rads.  I am now looking at chemo again, this time with 6 rounds of Taxotere.  I was just wondering if anyone else has had a recurrence?  I'm 42 years old.  This second tumor was 1.7 cm, in the same breast and seemed to come out of nowhere.
 
Thanks!  I also saw this foundation in People magazine's Style Watch section.   ;o)
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I am triple negative. Doctors haven't told me, found out by reading my pathology report. My tumor was less than 2cm but had spread to the lymph nodes. I had a lumpectomy and removal of the anxillary lymph nodes. My pet scan reveals the cancer has not moved to the lungs, abdomen or the brain. So, I just want to continue with radiation treatment and not have chemo. The chances of it coming back is great. The treatment for triple negative is still uncertain so why go through the process of chemo, losing my dignity and telling my children this is going to help when actually it may not. I am still thinking it over. I meet with the onc in 2 weeks. Maybe I will have my decision by then.



Edited by triplethreat1 - 10 Oct 2007 at 12:51pm
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From everything I have read -  triple negatives respond better to Chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mgindler Quote  Post ReplyReply Direct Link To This Post Posted: 10 Oct 2007 at 2:22pm
Hey Triplethreat1
 
I am a trip neg also.  I had Stage I with no lymph involvement and decided on a lumpectomy, chemo, and rads.  18 months after being diganosed it was back in the same breast.  It appears to be a local recurence, but I opted for a bi lateral mastectomy with reconstruction (1 week ago-feel great).  I will start chemo again at the end of the month.   My son (11) did ask about having to do all this again when we were so aggressive the first time.  We discussed the cancer and options and he is all for us doing whatever it takes.  I know everyone is different, but from personal experience I think you should go for all the treatment possible.  It was only about 15 months agao, but it seems like a lifetime.  We did get back to normal pretty darn fast and the treatments weren't as bad as I thought they might be.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dawnk Quote  Post ReplyReply Direct Link To This Post Posted: 12 Oct 2007 at 2:40am

Well I said yes to chemo.  Got in a clinical for partial radiation. 2x a day for one week and completed 8/24/07.  Started chemo 9/7/07, ac & t dose dense.

I have had some bumps.  First treatment even on senecot and colace I got contipated to the point of making me sick, nauseau pills didn't touch it.  That combined with the headache that lasted for 6 days from the dexamethazone it was no picnic. Dr. said Miralax and we reduced the amount of dexamethazone in half.
 
Second treatment or soon after I got a UTI, thought that I could take care of it like I normally would with plenty of liquids and cranberry juice to flush it.  Was sick with fever and puking for 4 days.  The fever broke and came back so even thou I alerted the Dr., thought it was under control.  I had been off all week and being the only one that does my job, I had to go in for payroll. Oops forgot that morning I also had to shave my head.  With the fever all week I had rubbed off the hair on the sides of my head.  It was coming in clumps, so I then decided to shower and wash whatever was coming out down the drain, clumps again.  Dried it, clumps again.  Tried to shave it with a clipper myself but between the tears and it being wet, I couldn't do it.  Called my Dad, who lives close and works from home to come shave my head.  That was the start of the worst day of my life. 
 
I then  went work and also called Dr. and she asked me to come to Mayo to have some blood tests and urine tests.  Decided I would go to Dr in my hometown and she would order the tests done.  There was more mixups but it ended in me leaving work half done with my dog still there for "tests".  My WBC count had dropped to 800 and indeed had a UTI.  The told me do not pass go, go directly to hospital.  Because of the UTI, my body wasn't able to rebuild those WBC's.  I was so sick that first night, vomited for 2 hours straight, strained hemmroids from contipation epidsode I didn't want to continue.  I questioned why I took this poisonn to begin with and was damn sure I wasn't taking anymore. But the antibiotic and neuprogen kicked in and I felt much better the next day.  This taught me the reality of this disease and it's treatment.  My body doesn't work like it use to, things that worked before don't work now,  that the first sign of trouble I need to alert the proper authorities not think I can fix it like before. Also to slow down and take time to rest, it's needed.
 
 
Ok so third treatment was last friday and other than being real tired, a bit more nauseated this time and "bottom" trouble,  it went fine.
 
I'm glad I said yes to chemo.  If I hadn't and it returned, I would have kicked myself.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote The SP Quote  Post ReplyReply Direct Link To This Post Posted: 12 Oct 2007 at 9:22am

Dawnk:

Sorry for your chemo troubles! I too am triple negative, found it when I was pregnant with my one and only (now) baby boy last November. All told me it was a blocked milk duct. I pushed and pushed and finally got the answer on January 17th, and a c-section on the 19th and both boobs lopped off on Feb 6th. Chemo begin March 15th. I pushed for dose-dense therapy and did 4 treatments of A/C followed by Taxol 4 times. Radiation followed 6 weeks earlier than was scheduled becuase my blood bounced back so quicky. All cancer treatements finished end of August.

And got my eyebrows back by Labor Day!

I too was SOOO constipated..luckily the only side-effect I suffered. My best advice is to take the colace everyday during chemo. I did and it saved my butt...literally!

Also, I went and continue to see a nutritionist who gave me great supplements and foods to eat during chemo. With every switch of the drug, I called her for more information.

Cookbooks: One Bite at a Time and Betty Crockers Living with Cancer have GREAT receipes that your caregivers/family can make to help you.
Eat that broccoli slaw and choke down those Omega-3 pills. Add Flaxseed to your cereal and eat meat only once a week. Exercise 5 hours a week. These are some lifestyle changes I made and I lost 47 pounds during the year (baby fat was 17 pounds only) and feel healthier than ever!
 
Remember, you do NOT want to gain weight while on chemo. Hard to do with all the steriods and the menopause it causes. BUT...get up and walk.
 
Chemo is your insurance that it will not return. What is losing your hair in comparision to saving your life?
 
Next body scan for me is October 29th. Last one was clear; this one will be too. I plan on living cancer-free until 93. Big%20smile
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: 19 Oct 2007 at 6:59am
Hi triplethreat1, you do have some hard decisions to make.  This is all very hard and usually there isn't enough time but I hope you will consider chemo as it is what they all claim works the best on triple neg.
 
It definitely is your personal opinion and I wish you well with whatever you decide.
 
Why do you feel it wouldn't help you?  And if you mean losing your dignity by losing your hair or being sick once in awhile, well it is crappy but you're trying to save your life.  There are lots of meds to help you thru and some really neat things you could wear on your head.
 
Please let us know what you decide. We stand behind you,
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Stage 1 2007
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