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Worried about BC Recurrence

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lisab View Drop Down
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    Posted: Oct 21 2007 at 4:11pm
I have been having a really hard time the last week just thinking about whether or not I am going to die from this BC recurrence.  It just seems like every time I watch a movie or read an article about triple negative breast cancer and not having done chemo the first time around, my chances of living more than two years after getting this recurrence are pretty slim.  I know there have been alot of new treatments and drugs and such, but I just keep hearing "two years" more often than I'd like to.  Any comments?  I'd appreciate it.
 
Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fd411 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2007 at 4:55pm
Hi Lisa,

All I can say is this: I did chemo the first time around. I now have mets, so don't let the fact that you didn't do chemo the first time around make you beat yourself up over it.

Everyone is different. You're not a statistic.

From one human being to another, I think we should try and enjoy whatever time we have on this earth, whether it be 2 years or 200 years.

From one triple neg sister to another, it's scary to see those stats. It's very hard to ignore them when they're plastered everywhere. But I'm hoping you're one who responds really well to treatment and have NED.


Ferne
2006 - Stage IIIA IDC; TAC, lumpectomy, rads
5/07 Mets to lungs, chest, supe clav and axillary nodes
7/07 Skin mets, neck nodes
9/07 Liver mets, more nodes
1/08 Brain Mets, more nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PineHouse Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2007 at 1:42pm
Lisa B,
 
The fact that you didn't do chemo the first time around is now not under your control, because it's in the past.  But what's within your control is vigilant screening.  
 
Some doctors don't believe in screening for metastatic disease (CT scans or PET/CT scans and bone scans) unless you have symptoms.  I disagree with that.  I believe there IS a survival difference between catching a 5mm solitary tumor in your lung (which not likely to produce symptoms) and catching 5cm multiple tumors in your lung (which likely to produce symptoms like breathing difficulty, persistent cough, etc.).
 
If I get to do it over again, I would:
- After completing treatment for my FIRST bc, I would get breast MRI's periodically.
- After completing treatment for my THIRD bc (by then I did a bilateral mastectomy), I would insist on routine screening for metastatic disease (CT scans or PET/CT scans, and bone scans).
 
So my suggestion for you and other early stage survivors is screening, don't forget BSE and/or breast MRI.  And in between those tests, try to live your lives.
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2007 at 2:15pm
I don't think recurrence is far from any of our minds but think about it - we may be the lucky ones.  We know that it may hit again whereas a year ago, I never thought it would hit at all and it did.  I am living my life a little differently - not so worried about the things that used to seem like such a big deal - how many tatoos #2 daughter had, how many sorority offers #1 had, would I have an office with a window etc. - you get it.
 
Chemo wasn't a picnic but I'm bouncing back.  Yes, I did get tired of people telling me how brave I was and how much courage I had - as I replied then, I didn't do anything different than anyone else would have done under the same circumstances.  You play the hand you are dealt. 
 
I went to the genetic appointment today to find out that I am BRCA 1/2 negative so a recurrence is likely within the next 5 years.  The good news - it is negative so perhaps my girls won't have to deal with this at least from my side of the family.  Exercise is my only defense so I'll be at the health club every day from here on out.  The medical arsenal has been drained - for now.
 
I met a lovely woman several months ago at the infusion center that had an unbelieveable outlook - she has multiple myeloma and was on her second round of chemo - she had already had two stem cell replacements.  As my father always said, you don't have to look too far to find someone in worse shape than you.  Your local infusion center is a great place to find many people who would gladly change places with us.  Who knows - by the time a recurrence occurs, a total cure may be available.
 
I know you will get through this with the prayers of all of us - god bless you!  Hugs.
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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lisab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2007 at 2:29pm
Thank you so much for surrounding me with such love.  After I posted this, I thought and thought about what I had written.  I thought about my cancer and whether or not I would be alive next year at this time.  But then I also thought about how lucky I am that I have good doctors and a good treatment going and even if it doesn't work - there are more things to try.  And then I realized that there was nothing I could have done differently to change my outcome.  Except for one thing - I should have insisted on more tests.  Blood tests are just not enough.  We need to be vigilant as you say, constantly vigilant.  And I must question everything.  The last week (since my last chemo treatment) the cough I was told I would have after radiation and which had subsided came back again.  I called my oncologist and he said it was probably the chemo that kind of aggravated it.  Well, today I talked to my radiation onc nurse and she told me to continue taking a cough medicine the doctor gave me.  So I've decided to give it 5 more days and if it isn't gone by Friday, I'm calling the doctor back so they can do an X-ray or something to make sure this isn't an additional problem.  I don't care what they say, I am going to demand something to make sure. 
 
Thank you thank you thank you so much for your support and for letting me vent here.  I think this is a wonderful group of people and I just wish we could get more information about TNBC.  I am getting ready to write my weekly letter to Oprah to see if she will do a show about TNBC - we really need more celebrity exposure to help with our cause. 
 
Love and hugs,
 
Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liliana Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2007 at 4:51pm
Hey Lisa B
 
I'll back you up...and I am sure the rest of us will, too(!) in signing that letterBig%20smile...we need more publicity and exposure to bring TNBC to everyone's attention!!!!
 
Blessings,
Liliana
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2007 at 4:09am

I've tried posting a reply here a couple of times this morning, but something is going on with my computer, so I am going to quickly post the link to oprah.com where you can send in show ideas.  I think it might be helpful if more of us did that.  I always mention tnbcfoundation.org in the submission.  Maybe Maalak Rock knows someone who could help with this request.  I don't know if she reads any of these posts or not.  I've even mentioned her name in my first story submission. 

 
Love and hugs - Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote English Jan Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2007 at 4:42am
Hi Lisab,
 
I have clicked your link to Oprah and also posted a message.
 
I have 3 cousins in England, all sisters. 1 died ages ago. But the last 2 were dx in Dec 2005, Hazel just died Oct 2007 with mets to her brain. Rita just found a lump under her arm, but they said it's nothing.
 
I am unsure if they are TNBC, I'm trying to find out because of the speed of mets I bet it is, but our family is upset and difficult to get info right now.
 
I am post op (lumpectomy nearly 9 weeks but am still having reddness around my breast. I saw my ONC 9th Oct (2nd Chemo, had allergic reaction to it) who said take the antibiotic for 5 days.
 
I thought 5 days was too few and went to see my BS, who said take it for 14 days. The redness subsided but last 2 days it's coming back. Perhaps it's because my ANC are low and the infection is opportunistic, will find out today as I have a blood count coming.
 
English Jan
FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008.
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lisab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2007 at 4:52am
Dear English Jan, I've taken antibiotics for 4 or 5 days but that was usually for a bladder infection.  I am glad you talked to your BS about this.  Did you have sentinel node biopsy, too?  I hope this is something minor - gosh - we just don't need any added trouble going through all this. 
 
I've been to England once and absolutely fell in love with it.  My husband had to go to Winchester I think it was and while he was at work, I would roam around town and meet people and it was such fun.  The countryside there is gorgeous. 
 
Please let us know the results of your blood tests...keep posting.
 
Love and hugs,
 
Lisa B.
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