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Mary58 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary58 Quote  Post ReplyReply Direct Link To This Post Posted: 21 Nov 2012 at 8:18pm
Gee, I had a lumpectomy with a general surgeon and my margins were what they call borderline. I got a second opinion at a University hospital that would have recommended re-section, but they said not, because I had finished radiation.  I am almost three years out, have had MRI's and mammograms every six months. Wouldn't something have showed up by now, if there was cancer left behind?

Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: 21 Nov 2012 at 8:51pm
Mary,

I think you'd have seen something show up by now.  TNBC recurs more in the first 3 years.   I didn't mean to worry you.  When I was talking about my friend, it was more aggravation by her first surgeon who didn't perform the procedure correctly.  I think the words "mucked it up" were used to describe it.   By the way, my friend didn't have chemo or radiation and it hasn't returned.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED8/12,CT NED 11/13

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Mary58 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary58 Quote  Post ReplyReply Direct Link To This Post Posted: 21 Nov 2012 at 9:05pm
Thanks Donna.
Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof2 Quote  Post ReplyReply Direct Link To This Post Posted: 22 Nov 2012 at 11:31am
Dear WattaMatta,

Welcome to this site that hopefully can be helpful for you.  I am sure you are very overwhelmed as I was.  I was diagnosed on September 19, 2012 and am undergoing chemo now.  I just had #5 yesterday.  You asked about having it in the lobular area; I do.  Yes, it is more uncommon that it is there.  That is the milk producing gland (ball at end that leads to ducts); most breast cancers do occur in the ductal area(breast ducts).  I am receiving my treatment at the Moore's Cancer Center in La Jolla, CA.
Mayo Clinic: At its earliest stages, invasive lobular carcinoma may cause no signs and symptoms. As it grows larger, invasive lobular carcinoma may cause:
  • An area of thickening in part of the breast
  • A new area of fullness or swelling in the breast
  • A change in the texture or appearance of the skin over the breast, such as dimpling or thickening
  • An inverted nipple

Invasive lobular carcinoma is less likely than other forms of breast cancer to cause a firm breast lump.

Cancer that spreads to other areas of the body. Invasive lobular carcinoma is slow to spread (metastasize) beyond the breast, but it can spread to other areas of the body.

My cancer is so far contained to my right breast area.  Tumor is in 5o'clock area of my lower inner breast; it was a 2.7cm in sonogram/mammogram/mri was measured at 3.5cm/grew and manual measurement at 4x4cm before my 1st chemo treatment/shrank and manual measurement at 1x2cm before my 3rd chemo treatment/3rd biopsy/sonogram measured it shrinking at 1x2/same day on 2nd mri done before my 4th chemo treatment it shrank to 1x2 so basically chemo is working for my tumor and my lymphnodes look good too because it had spread to some of them as well.  I did have it in my internal mammary lymph nodes area(behind breast/rib cage area) and that has slightly decreased in size and shape as well.  I'm in the "I Spy" Clinical trial so I'm receiving neoadjuvant chemotherapy (clincial drug AM386 and Taxol for 12 weeks then A/C chemo for 4 weeks), lumpectomy to follow, then 7 weeks of radiation (5x a week).  I don't know if any of this information is more helpful, but I feel good about my chemo results thus far and am optimistic; yes, even though I am triple negative.  I have two wonderful children (23 year old son and my youngest child just turned 6 yesterday   Big smile).   With my continued faith in the Lord and trust in my doctors I am optimistic I will fight this!  May God bless you and good luck with your treatment plan. 

Monica Smile



Edited by momof2 - 14 Dec 2012 at 2:33am
DX ILC W/Medullary Features TN 9/19/12 age 39,Stage 2b,Grade 3,4x4cm,InternalMammary 1.3x0.6cm,16 NodesRemoved/rb lumpectomy/ClearMargins 3/15/13,BRCA1/2 Neg,8x AM386/Taxol;4x A/C;34Rads;NED 12/23/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote slburns21 Quote  Post ReplyReply Direct Link To This Post Posted: 13 Dec 2012 at 8:35pm
Hello to all, I am new to this website and despite feeling that I am computer literate I can't find what is referred to as the "relevant button" to start a post. I found a lump on 11/12/12, mammogram and ultrasound 2 days later, then core biopsy which didn't have enough of a sample to give complete diagnosis of type of cancer, ER/PR both negative but not enough to test for HER/2, Had lumpectomy and SLNB on 12/6/12. Fortunately my nodes were negative and margins clean. Found out 12/11 that it is TNBC. Meet with my oncologist on 12/20 so will find out the plan. I have already met with radiation oncologist and she said probably 4 tx of chemo followed by 30 radiation treatments. No history of cancer in my family so came as a huge suprise. I am grateful that it has been caught early, I do know that it is stage I and small 1.1 cm. Major unknowns but answers will come soon when I meet with doctor next week.
I am a RN for 30 years but didn't work oncology so have very little knowledge except the really ill cases I have seen in the hospital. At this point I have more questions than answers regarding chemo, hair loss??, my reaction to treatment and so on.  Very glad to have found this forum and appreciate everyone sharing their stories.
 
Thanks to all,
Sheryl
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: 13 Dec 2012 at 8:44pm
Hi Sheryl,

You'll find lots of helpful information here and tremendous support too.  Many of us here have no history of breast cancer either.  Glad they found your's early.  Let us know what type of chemo you'll be getting.  Everyone reacts differently and you may not have the same side effects as others.  Hair loss, depending on the chemo, will usually occur about 14 - 17 days following treatment.  

Have you had your Vitamin D levels tested?  Most of us diagnosed have extremely low levels.  We have a thread talking about the importance of it and knowing your level.  It's a simple blood test you can ask your onc about.  I wish I knew about the link between low levels and breast cancer long before I was diagnosed.


Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED8/12,CT NED 11/13

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Post Options Post Options   Thanks (0) Thanks(0)   Quote slburns21 Quote  Post ReplyReply Direct Link To This Post Posted: 13 Dec 2012 at 8:48pm
Donna,
Interesting that my D3 was checked in May for the first time ever and it was low. As a result I have been on D3 5000 IU since then. I will be interested to see how it has responded when I get blood work next week. I will have more answers next week after meeting with oncologist. Thanks for responding. Sheryl
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: 13 Dec 2012 at 8:54pm

Welcome Sheryl.  This is not a place you would ever plan to visit, but in your situation it is the right place to be. 

It does sound as though things were caught early and that is good.  But even early doesn't mean you will not face the hair loss and other side effects.  We are all here to help you along the way, we've been there and done that.  WE UNDERSTAND. 
 
Keep us posted as to your course of treatment.  Believe US; it is doeable.
 
God Bless,
Lillie


Edited by Lillie - 13 Dec 2012 at 8:56pm
Dx 6/06 age 65,IDC-TNBC
ST-IIb,GR3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2014 - 8 yrs. NED
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Charlene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: 13 Dec 2012 at 9:23pm
Hi, Sheryl,
Just want to chime in and say hi.  You are in probably the most stressful part of the journey right now.  Chemo is not a picnic and people do respond differently, but it's very manageable.  And, your case does has some very positive characteristics--small tumor and no lymph node involvement.  Please don't hesitate to post anything you think we might be able to help you with.  Wishing you the best.
Charlene
 
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wattamatta Quote  Post ReplyReply Direct Link To This Post Posted: 16 Dec 2012 at 6:27pm
Thanks, Carol, Donna and Monica. I am 10 days out from my bilateral mast. It has been rough, I am so thankful for my husband and children who have been with me. I have my drains removed tomorrow. My pathology report showed that the BC was not in the lymph nodes, but had attached to the chest muscle. My surgeon was unable to get clean margins. The tumor was also almost twice as large as shown on the images. My husband and I are meeting with the med oncologist on Thursday to discuss treatment. I had been so relieved after surgery to have the tumor gone, but am now disheartened to know that pieces are likely still there. I was glad to read, Monica, that ILC is slow to metastasize, and that you are having good results with chemotherapy. I am seeing oncologists at Dana Farber who know about triple neg and are taking the diagnosis quite seriously, but I am still depressed and anxious about all I have before me. I'm just venting because I know this just has to play out.
60 yo, DX 10/26/12. BMX 12/6/12. TNBC ILC, 2.1 cm, Stage 2, Grade 2, margins not clean, 0/1 nodes.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMC_2012 Quote  Post ReplyReply Direct Link To This Post Posted: 24 Dec 2012 at 2:24pm
I found out my close friend, Sharon had to go into the hospital last Tuesday for surgery on a collapsed lung; they had to drain it twice in the last month due to collecting excessive fluids.  She is still in ICU because she is having breathing problems.  Her sister tells me she is seeing things that are not really there but the doctors said this is to be expected.  They will not release her from ICU until she can breath on her own.  Sharon has a tough road ahead of her but she will beat it.  Her sister is considering putting her on a Ketone diet (???) and I suggested looking into a Macrobiotic Diet having been on it for 5 years...healthiest I ever been in my life.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote steve Quote  Post ReplyReply Direct Link To This Post Posted: 24 Dec 2012 at 2:56pm
Dear wattamatta,

sorry I did not see your post until now...

I am sorry you had a larger tumor than originally expected and that 'clean' margins were not achieved.
On the bright side I believe Dana Farber is one of the best cancer centers in the country. Dr. Eric Winer is Chief, Breast Clinic and also sits on the TNBC Foundation Scientific Advisory Board so yes, as an institution, they are very familiar with TNBC. I have found Dr. Winer to be a brilliant researcher/oncologist and also deeply cares about his patients.


wishing you as good a holiday season and 2013 as possible. We are here for you.

warmly,

Steve


Edited by steve - 24 Dec 2012 at 2:59pm
I am a BRCA1(187delAG)+ grandson, son and father of women affected by breast/oc-my daughter, inherited the mutation from me, and at age 36, was dx 2004 TNBC
75%invasive quandrantectomy,PBM,LAVH/BSO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMC_2012 Quote  Post ReplyReply Direct Link To This Post Posted: 28 Dec 2012 at 10:28pm
Okay, I am confused.  My friend, Sharon, had lung surgery last Thursday on her left lung because it constantly filled with fluids, and is still in ICU.  I read on one of the many forums either on this site or another one that this type of surgery is the most painful recovery anyone can experience, due to the length of time recovery takes.  Sharon's TNBC is now widespread including her lungs and prognosis is very grim; they have ceased all treatments because they feel if she continues the treatments will kill her; the same treatments that are suppose to prolong life.  The lung surgery, in their eyes, was successful then why is the same lung filling-up with fluids again?  Her sister said they are hoping to move her to the Telemetry Floor by morning...the cardiac unit?  Does this mean they are expecting Sharon may have a heart attack and they are more equipped on this floor to handle it rather than ICU?  Sharon is exhausted from trying to breathe (never know if there is an 'e' at the end; taking a breath or trying to breathe) and from the constant pain...she is on a morphine drip and twelve other meds.  Then, she is trying to cope with the pain caused by the cancer in her lungs...this is just too much.
Her son and brother are now with her for the next ten days; best medicine any patient can have is being surrounded by family.  Sharon's sister (and roommate) has been by Sharon's side since being diagnosed the second time with BC (this time around, TN(I)BC) August 2011.  I am relieved that her sister now has emotional and intellectual support from the family because it has been a burden on her shoulders especially the last 3 months.
Sharon's sister is hoping to be able to speak to the Lead Oncologist of Sharon's oncology team tomorrow to get more definitive answers and more information about the surgery and recovery.  I find it very odd that the Oncologist has not spoken to the family especially Sharon's sister who is POA with medical directives.
I am just venting...Sharon endures lung surgery/recovery and the same lung fills up with fluids again?!!  The surgery team knows the cancer is in the same lung and she will have to tolerate not only the pain from surgery AND the cancer?  I cannot wrap my head around this at all...and now, they want to move her to the Telemetry Floor??
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: 29 Dec 2012 at 8:43am
Hello CMC,   I am so sorry to hear about all the pain and suffering that your friend Sharon is going through. I am praying that the Oncologist will meet with Sharon's Sister TODAY and answer all of the questions and those you pose as well.   You seem like a very caring friend and please know You as well as Sharon will be in my prayers.    Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote briestarr Quote  Post ReplyReply Direct Link To This Post Posted: 29 Dec 2012 at 4:18pm
DX TNBC Feb 2010
age 48
Lumpectomy 2cm
6 nodes removed, all clear
Chemo A/C and Taxol 8 sessions
Radiation 33x
BRCA 1 and 2 negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMC_2012 Quote  Post ReplyReply Direct Link To This Post Posted: 31 Dec 2012 at 10:07am
My dear friend, Sharon Mclean, lost her 16-month battle with Triple Negative Inflammatory Breast Cancer this morning. She has been a trooper throughout the many surgeries, treatments and excruciating pain she has had to endure to prolong her life.  I will truly miss her. She is now at peace and pain-free. 
Another beautiful human being lost to the ravageness of this brutal disease.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: 31 Dec 2012 at 10:28am
Dear CMC,    I am truly sorry to hear about Sharon. Thank You for letting us know. May She Rest in Eternal Peace and Light. I pray for Consolation for you, her dear friend. It must be very difficult to have watched all of what she has been through but you stayed with her and I can see you were a great comfort to her. Bless You...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: 31 Dec 2012 at 11:45am
Dear CMC_2012,

Sincere sympathy on your loss.   May Sharon rest in Eternal Peace.

Grateful for today............Judy


With CMC_2012's permission, a thread on the TNBC tributes for Sharon Mclean has been started.
   http://forum.tnbcfoundation.org/topic10646_post108671.html#108671
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: 31 Dec 2012 at 2:53pm
Hi CMC,

So very sorry for your loss. It sounds like Sharon suffered greatly, which is breaks my heart to hear. Her passing, though sad, is a blessing, as she is no longer in pain. May she rest in peace.

Warmest Regards,
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChristyTNIBC Quote  Post ReplyReply Direct Link To This Post Posted: 05 Jan 2013 at 4:38am
New to this forum and any forum for that matter. I was diagnosed with Triple negative inflammatory breast cancer November 27, 2012 and currently in chemo at Moffitt Cancer Center in Tampa. Staying positive and looking for support form other TNIBC women. I am stage 3b right now & I start my 3rd cycle of chemo (AC) on Friday. Still waiting on BRCA testing to see where I stand there. Hard to know where to look for support since I have triple negative and inflammatory breast cancer. Both suck! Dead

Hope to meet some inspiring people to keep me smiling through this journey.

Thanks!

Christy
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