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Would like to say hello

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bubby56 View Drop Down
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    Posted: Jul 21 2017 at 5:12pm
Hello everybody,

I would like to introduce myself to the forum quickly before I return to lurking. :)
I was diagnosed May 24, 2017 with BC and found out 2 days ago that it was TNBC. The shock is starting to fade ever so slightly....
There is a very sharp learning curve being diagnosed with BC but TNBC takes it to another level in my mind.

That being said, I am very grateful to have this forum as a resource and support!!

What I know so far:
Stage 2 (2.4 cm)
No lymph nodes
Lumpectomy July 5, 2017 and 2 SN removed.
Grade 3

Regards!

-D
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Sarahlou View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sarahlou Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2017 at 5:48pm
Hi D
I too was diagnosed the end of May with TNBC. I tested positive to BRCA 2 and opted to have a double mastectomy with reconstructive surgery being done on the 5th of July. I am recovering well. Even though they are saying I am cancer free they are wanting me to do chemotherapy.  This has been a whirlwind of emotion and information to absorb. I am not a fan of doing the chemo. I am very fearful of it. I have never joined a forum but have found a lot of good information in here from women and families going through this.

What I know so far
Stage 1, 9 millimeters
Grade 2, no lymph nodes
positive BRCA 2 
double mastectomy/ reconstructive surgery July 5th,2017
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2017 at 7:32pm
Bubby:    Almost all TNBC is Grade 3, from what I know regarding my wife. If no lymph nodes are involved, the prognosis is better, but my wife had 3-4 involved and she is fine now after chemo.
Your doctors just need to monitor the lumpectomy margins, it sounds like you have a great doctors/future


Edited by gordon15 - Jul 22 2017 at 7:34pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2017 at 7:44pm
Sara:  you said: "I'm "

Stage 1, 9 millimeters
Grade 2, no lymph nodes
positive BRCA 2

...and they want you to do chemo...

Even though you are Triple Negative , Stage 1 with less than a Centimeter (a centimeter is 10 millimeters) is not aggressive, most TNBC is Grade 3, so that , to me, although I'm not a doctor, is not the usual aggressive Grade 3,  no lymph nodes involved is also extremely good, taking all into consideration, it seems, if you were my wife, I would want to seek a second opinion before doing chemo, I don't think there is a rush, , I mean, it takes 4 weeks to recover from surgery,

 but I'm not a doctor, G.


Edited by gordon15 - Jul 22 2017 at 7:57pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Sarahlou View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sarahlou Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 12:19pm
Thank you for the response. It seems they thought it was grade 3 but from the latest pathology if I am reading it correctly,it is actually grade 2. I am 41 years old and healthy other than this, lol. I am so conflicted about this. My husband wants me to do the chemo and my mom and sister are aganist it. 
Yes, I do feel I need to recover before I take this on it that is what I decided to do. 

Thank you 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nomad_Exec Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2017 at 5:20pm
What did you decide to do?  A very difficult and personal decision.  What ever you decide, be ok with it and don't look back.   All I can say is that I know what you are going through and I wish not wish it on anyone - 
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2017 at 11:07am
Chiming in here... I was a grade 2 with .6mm tumor with no lymph node involvement.  Super healthy, athletic and eat organic.  Weight is normal range.  All that being said, my oncologist said "Triple Negative, Chemo".  I completed lumpectomy, chemo, Radiation, CT Scan and new 3D mammogram baseline.  I am cancer free with a strong prognosis.  I took immediate action and put a strong care plan together.  I hesitated for one second about chemo, then went for it.  I choose my life and wanted the very best shot at being around for another 30 years.  I was 55 when diagnosed.  You are at the hardest part.  Once you pass this piece, it will all fall into place.  I let God lead me in my path.  I hope this helps in some way.  Hugs from Penny 

PS - hair is coming back and it is fabulous!  Keep your spirits up.   
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Meadow View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2017 at 2:37am
Your doctor should be able to tell you the statistic for your particular profiled (age, stage, grade, tumor size, etc) what your chance of metastasis would be if you had chemo vs. if you did not have chemo. For me, it was about a 12% difference, and based on that I decided to go ahead with chemo. I just wanted to maximize my chances of being cured.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Sarahlou Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2017 at 9:41pm
I did decide to go ahead with my dr recommendation and do the Chemo. I felt like I didn't want to have any regrets if I didn't do it and it were to come back.
I had my second infusion this week.
First week was tough, my anti nausea medication was not stong enough. This week I only had the one drug Taxol and I am fairing well thus far.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2017 at 6:10pm
It's great to hear from you, and you made the best decision for youself, with all the information available, sorry you have nausea, my wife's nausea was relieved using Zofram fyi, keep us posted, ok?
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cheekbones Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2017 at 11:37am
Hi, I am new to this much needed forum having being diagnosed from a biopsy on August 2. Mammograms do save lives as it is what picked up the abnormal sight. I'm still in the acceptance mode, it's sad and scary but I know I will be fine after the smoke clears. I have surgery today and UN wanted chemo in a few weeks. I don't wish this for anyone but lots of people abuse their bodies and remain perfectly fine. I was finally in a happy comfortable place in my life and then this ...quite sureal
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cheekbones Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2017 at 11:38am
Hi, I am new to this much needed forum having being diagnosed from a biopsy on August 2. Mammograms do save lives as it is what picked up the abnormal sight. I'm still in the acceptance mode, it's sad and scary but I know I will be fine after the smoke clears. I have surgery today and UN wanted chemo in a few weeks. I don't wish this for anyone but lots of people abuse their bodies and remain perfectly fine.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Sarahlou Quote  Post ReplyReply Direct Link To This Post Posted: Aug 31 2017 at 12:05pm
Best of luck on surgery. I will have my 4th treatment tomorrow. I am fairing well so far.
I don't know if your are on Facebook but there is a group on there called
Triple Negative Breast cancer survivors. 4k woman that have gone through this or currently are. There is a tremendous amount of participation from the group answer questions, what has worked for them etc. Staying positive is a big part of the journey. I am sorry you have to go through this. Stay in touch. I did find alot of helpful information in the forum under chemotherapy from this group.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 28 2017 at 3:05am
The problem with chemo isn't short term other than the SEs.  If you can be diligent about a supervised alternative approach under the care of  true experts, at least you're on the proactive side of life again. It may require dramatic lifestyle changes, but I like at least trying to improve the chances of many long term effects like secondary cancers, heart & pulmonary diseases, and a compromised immune system. I can at least give it my best shot.  It doesn't mean it will happen, but well worth the effort.  And, if you can't dedicate yourself 100% to these changes, as for some they could be pretty dramatic, it's perfectly fine.  There's no right way to survive. You're the one that may very well live to be a centenarian.

I do think most know practicing conventional oncologists who became fed up with the system and decided to go into a different aspect of helping cancer patients.  Like holistic or alternative methods after their hands being tied for so long,  They can get in big trouble for recommending any unconventional help that isn't chemo or FDA approved drugs to manage SEs, etc.

I have first hand experience. Even suggesting strong supplements which may have more efficient capabilities of baying cancers without the SEs can get their license yanked- brilliant doctors who choose human life over profits and are too ethical to continue that course.  My regular doctor passes on the info so his oncology buddy won't get slapped on the hand, or worse. Just as there are millions of survivors who've turned down the caustic effects of chemo for various treatments which aren't nearly as profitable for the the industry controlled by Big Pharma.

I'm one that chose stout doses of FEC in a neoadjuvant setting after the 3rd round of Taxol- 1/4 of planned chemo standard of care with 12 weekly infusions.  Since my mass was so close to the surface I KNEW Taxol was growing it at an alarming rate.  MDACC substantiated that by 41% even though if felt at least double the size. During my tx I couldn't throw enough chemo at this beast and felt lost when I wasn't a candidate for adjuvant rads. While I don't have a crystal ball, I can't tell you how very thankful I am things turned out the way they did.  We may look back and see how we were grossly over-treating, like in he 60's & 70's.  While we've come a long way with rads, and not so much with chemo, the low survival increases of cancers across the board- something like 2.1% are likely in childhood leukemia, testicular and prostate cancers, plus Hodgkin's.  Sadly solid tumors still have a long way to go before we can claim significant progress in survival rates. I dread all the pink October hoopla.  We have plenty of breast cancer awareness.  Let's appropriate those funds where they'll actually do some good.

I've been so anti alternative medicine through this illness, and resented those who tried to shove their pompous poison, cut and burn scare tactics down my throat.  Let's face it, in some cases there isn't what seems like a feasible choice.  It's much too daunting. I don't wish this on anyone.  But until you're faced with a super aggressive cancer it's also extremely insulting to those of us fighting to survive.

Today I feel it's never too late to at least somewhat help counter immune weakening toxins with lifestyle changes; like plenty of organic plant based foods & clean eating, filtered water, various herbs & teas along with well documented supplements...lots of activity for oxygen levels and bone health.. etc.  My favorite by far is laughter.  Once you can trade bad habits for good ones, before long it naturally becomes a way of life. Over 6 years past dx & over 5 for tx, I want to keeping living the healthiest way possible, fully realizing there are no guarantees.  Life in general comes with few guarantees- (death and taxes- oh boy! Ouch)  We do the best we can continually educating ourselves and others.  Whatever you do, I feel you must take the bull by the horns and be truly passionate.  That goes for a strong conviction for conventional treatment believing this will kick cancer to the curb. I embraced that as thoroughly as possible for 3 years.  & so far I'm still standing.

We are all so unique. There are so many varying nuisances which make everyone their own warrior with unquestionably winning spirits... all of us rallying for victory.  When I see so many survivors, I have to believe we ARE indeed winning-my greatest hope for my daughter and granddaughters.



Edited by mindy555 - Sep 28 2017 at 5:14am
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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