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Stage 1, Grade 3 Neg Margins. High Risk Mammaprin

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sasee1 View Drop Down
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    Posted: Apr 02 2016 at 9:14am
Looking for others of same diagnosis, Stage 1, Grade 3, neg margins, neg lymphs. Did you do chemotherapy?? My Onco is suggesting chemotherapy. Fiance is not on board. Confused & overwhelmed.
Also if you did or didn't do chemo did you have metastases or recurrence?
DX: February 4,2016 TNBC 41 yrs. Old
Stage 1, Grade 3 1cm
Lumpectomy. Nodes negative. High Risk Mammaprint.
Chemo begins 4/6/16
AC × 4
Taxol × 12
+ Radiation to follow
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AmyL View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2016 at 10:14am
Hi,
I was dx Dec '15 with stage 1A, grade 2, TNBC. Surgery Jan 16 with neg nodes x 2, clear margins. Final pathology, tumor was only 11 mm. I am BRCA NEG. I was advised to do the same course of chemo they have recommended for you. A/C x 4, Taxol x 12, and radiation. My oncologist explained that with TNBC, the incidence of recurrence/metastasis is very high so they take an aggressive approach. The NCCN guidelines 1.2016 recommend adjuvant chemo for any tumor > 1 cm, and to consider it for any tumor > 6 mm.

I am currently between #3 and #4 A/C and am looking forward to having it behind me. It's been rough but I've learned to take one day at a time, to listen to my body, gets lots of rest, drink lots of water. I took a 10 week leave of absence from work to get through A/C and the first few Taxol doses. It was a good decision. I've also learned to lean on the members of this forum for strength, advice, support and just a place to "vent".

TNBC is really scary and overwhelming. I had a hard time with the idea of pumping poison into my body after they told me that the cancer had been successfully removed. I try to focus on my desire for a long life, to see my daughter (15 yo) graduate from high school and then college, and to someday hold grand babies. It sounds like you have a lot to live for as well. If you still have doubts, seek a second opinion, and take your fiancé with you.

Best wishes, and please check back with all of us and let us know how you are doing

Amy
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sasee1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sasee1 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2016 at 11:23am
Thank you for the feedback Amy!

Unfortunately I cannot take any time off. I will be working as much as possible. I also lost my only child in November, she was 19. A holistic doc told me he believed that the trama brought on the onset of cancer. I believe he is right to some degree. I feel really alone in this decision. People don't understand the difference of TNBC. I have some friends that are convinced if I change my diet etc everything will be OK. Mind you I'm pretty healthy. I'm a pescetarian, I only eat fish & shell fish along with alot of vegetables. This whole thing is causing strive with my fiance. We are to be married April 26. He asked me again last night if this is what I had decided to do, after I had already told him this 2 weeks ago. I really hate this & I'm feeling really alone. This forum is helping but I just can't get him to do any research on this. I know he is scared & hopes it will all just go away. His thinking is that because I have negative margins after surgery the cancer is gone & I don't need to do chemotherapy.

Thank you again for replying.
Angela
DX: February 4,2016 TNBC 41 yrs. Old
Stage 1, Grade 3 1cm
Lumpectomy. Nodes negative. High Risk Mammaprint.
Chemo begins 4/6/16
AC × 4
Taxol × 12
+ Radiation to follow
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AmyL View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2016 at 12:27pm
Oh Angela, I am so sorry for the loss of your daughter.. I can't even imagine the pain you must be in. I have three daughters, 25, 22, and 15 and they are my strength! Have you been BRCA tested? It would be important for you to have that information. There are many women on this forum who have worked throughout chemo. Everyone is different. I couldn't have, but that's just me. I'm also a pediatric nurse practitioner... So on my feet most of the day, and my oncologist didn't want me around contagious children...go figure. If you end up opting to skip chemo, I would see about radiation anyway. I'm assuming you had breast sparing surgery? Would they give you the option to wait until after the wedding for chemo?

Thoughts and prayers with you as you move forward.

Amy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sasee1 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2016 at 1:13pm
Thank you Amy, it has been tough. I am receiving grief counseling. It has helped.

I have not had the BRCA test. I did have the Mammaprint. High risk. I also work in healthcare. I teach ultrasound at a local university. I found my own mass. Because of my background I jumped on it quickly which I believe helped tremendously. I believe in western medicine & have made my first treatment week after my wedding. My oncologist is working around the wedding. I'm like you, I just want to live a long life & I don't want it coming back in some other form. I will also have 30 treatments of radiation after chemotherapy. It's very difficult doing this as a newlywed. It's not how I envisioned starting out our life. Like I said it's putting strife between us because you feel out of control & there are no guarantees. I guess it has to be my decision. I favor the chemo & radiation. I have a Western medicine mind like you. I have to believe in my doctor & know what she is recommending is the right choice.

Thank you for sharing with me. Means so much. God bless!!
Angela
DX: February 4,2016 TNBC 41 yrs. Old
Stage 1, Grade 3 1cm
Lumpectomy. Nodes negative. High Risk Mammaprint.
Chemo begins 4/6/16
AC × 4
Taxol × 12
+ Radiation to follow
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Minigerkin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Minigerkin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2016 at 2:34pm
Hi!
I also have Stage 1, Grade 3 TNBC.  I had a lumpectomy in July 15, a 10mm tumor with clear margins, neg 7 nodes with clear margins. I agree with AmyL, my course of tx was A/C x 4 and Taxol x 12. BRAC neg. The A/C was the worst, but the Taxol makes chemo a little easier to handle.  I finished chemo 1/28/16 and began radiation 3/1/16. Rad tx x 33.  I'll be finished April 14. I decided to resign from my position because my husband was diagnosed with colon cancer (stage 2). It was the best decision I made. Although I miss my job, I believe the pressure of balancing the job as well as our battles would have hindered my recovery.  

Please take the time to reflect on your situation. This is a new chapter in your life, granted not one you would have preferred, but it is what it is.  Have those pity parties (i have plenty) and lean on all your sistas here on this forum.  We are there for you.  We are all in this together, warriors fighting TNBC!

Cyber hugs to you!
Minigerkin
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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: Apr 03 2016 at 2:44pm
I believe the NCCN Guidelines for TNBC is anything bigger than 0.5 cm should consider chemotherapy.  


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 NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2016 at 12:21pm
Chemo was tough for me but I don't regret it for a second. Triple negative is a killer and you should through everything you can at it to stop it in its tracks. I'm now 10 years!!! out this June and my stats are similar to yours. You can beat this.
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mdnyc Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2016 at 4:24pm
Hi ladies.   My journey is similar to yours, I was diagnosed in January of 2015 with stage 1, 1 cm, no nodes. I had a double mastectomy in February and am now progressing through the course of chemo that your doctor has recommended. Just finished my 3rd AC, one more to go. Will embark on Taxol and Carbo in late April. I am BRCA+ , 43 years old, a mom, a runner, a wife, and many other things. Trying not to let this define me.    One thing that I have found particularly helpful is the social worker at the cancer center where I am getting treated. She has helped me talk through everything from going back to work, losing my hair, taking to my kids and being true to myself in this process. Perhaps your center has a similar service? Might be helpful for both you and your fiancé to talk through the issues. Whatever you decide, it will be the right decision for you. Please keep us in the loop as you progress. Hugs.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessy Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2016 at 8:07pm
Dear Newbie, my diagnosis was similar to yours as well. TNBC diagnosed July 2015, stage 1, .8 cm tumor, grade 3, BRCA 1 +, 3 nodes tested all clear. I did the double masectomy first Aug 2015, started AC/T chemo in September and finished on December 31. When my doctors discussed the chemo it was never an "option" for me. They acted like it was a "must" so I never second guessed it. I worked full time through my entire chemo 9 HR days with a 1 HR commute both ways -11 hour days total. I did take the chemo day (Thursday) off and honestly the following day (Friday) I didn't feel that horrible because of all the medications they gave me before chemo which included steroids which kept my appetite up and gave me some energy. By Monday evening it was like clockwork and I walked thru the door in tears after work just emotionally and physically drained. By Thursday I was feeling significantly better. If I could have taken off work for the entire time I would have but it just wasn't an option because I had just taken off 3 weeks for the masectomy. It was hard and I needed lots of support. Basically all I did for the 4 months of chemo was work and lay on the couch when I wasn't at work. Family members had to step in and take care of the kids, friends brought dinner, and my husband had to really step up and take over my household responsibilities. I really wondered if I would ever get off that couch or want to get back to my regular activities. But I did, it's been 3 months since my last chemo and I feel better than I ever have. I strongly suggest you do the chemo. Like others have said TNBC is not like the other cancers there is no pill to keep it from coming back. You need to do ALL you can to keep it from returning. You wouldn't want to skip the chemo, have it return, then have a big case of the "what-if's".

I am so so sorry you lost your child before diagnosis, I can't even imagine what you are going through on top of the cancer diagnosis. You will be in my thoughts and prayers. If you want to talk outside of this forum please feel free to email me at jandjsnellings@aim.com when I was diagnosed I leaned heavily on my TNBC family. It's so encouraging to know there are lots of people who beat this!!! ❤️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2016 at 10:42pm
Hi Angela,

I'm so sorry your fiance is not being supportive.  You really need the support in a time like this and especially as you start treatment.  I can't imagine the pain you are going through with the loss of your daughter too.  Are you going to a major cancer center?  The one where I go offers free counseling to any cancer patient or their family.  Licensed phd therapists will meet with you as often as needed.  I did not have access to this service when I was diagnosed the first time, but found out about it when going through radiation treatment for my recurrence.  It helped so much to talk to someone who understands what a cancer patient is going through.

If you are on the fence about doing chemo or not, maybe get a second opinion?  My only comment is TNBC is aggressive and doesn't play by the rules.  It's more likely to travel through the lymph nodes and blood stream than other types.  We only get one shot at treating it the first time and hope it doesn't return. 

This is probably the hardest part of the journey - trying to decide on a treatment plan and making the best decision for you.  Unfortunately there are no guarantees, so we make the best decisions we can at the time with the information available to us. Wishing you the best.  

Donna


Edited by 123Donna - Apr 04 2016 at 10:43pm
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 NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sasee1 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2016 at 9:47am
Thank you all for sharing. My fiance is a little more on board with the thought of chemo & radiation. I'm now getting closer to my first round & getting scared. After my lumpectomy & with negative margins, negative lymphs, I'm now starting to heal & I feel fine. My oncologist is great & letting me wait till after my wedding to start but now that I have put it off this long it's hard to think about starting. I've has no recurrence that I know of & I hate the thought of putting poison in my body now & feeling terrible for the next 5 months. Losing my hair, feeling ugly & sick. I understand I'm at high risk. Just hate this. I just want to know if I'm making the right decision doing this. What if I can't handle the chemo? What if it's done for nothing & it comes back anyway? Then I'm bald & sick. Chemo affects all organs as well. What if I make my body worse? No choice is a good one in my mind.
DX: February 4,2016 TNBC 41 yrs. Old
Stage 1, Grade 3 1cm
Lumpectomy. Nodes negative. High Risk Mammaprint.
Chemo begins 4/6/16
AC × 4
Taxol × 12
+ Radiation to follow
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2016 at 10:25am
Hi Sasee,

All of your thoughts and fears are justified and realistic...we all share them. I think it's so important to place your trust in your medical team and to use the power of positive thinking every single day. Read Gisela's posts...she is 2 cycles into A/C and has had NO side effects, so it is possible! I try to think of chemo and radiation as insurance against recurrence....you know what they say about insurance...you have to have it, but hate paying for it...until you need it and then you're glad you have it!

Hope your wedding is fabulous!

Amy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2016 at 12:25pm
sasee1, I had the same profile as you - 1 cm tumor, stage 1, negative  lymph nodes - and I decided to do chemotherapy.  My doctor told me what the odds of the cancer coming back would be with and without chemotherapy.  The odds were about 22% of the cancer coming back if I did not have chemo and 12% with chemo.  I knew the situation would be very serious if I had a recurrence, so I wanted to do as much as I could to reduce those chances.  Has your doctor told you the odds of recurrence based on your profile?  if not, you should ask, if you feel it will help you make a decision.

Please don't assume you will be miserable with chemo.  Everyone reacts differently, and some people do have a tough time.  But for me, chemo was much easier than I thought and really did not interfere with my regular life that much.  AC did make me feel really sick on "day two" after each infusion, but I got through those four infusions.  With Taxol, I had mild (temporary) neuropathy in fingers and toes and slept a lot more than usual, but I didn't feel ill.  Throughout chemo I worked full time (except for infusion days) and kept up my regular exercise routine and social life.  I just had to push myself sometimes.  
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ssam Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2016 at 12:43pm
Hi AmyL, my diagnosis was the same as yours, Stage 1, Grade 2, no lymph nodes involved, clear margins. But my Onc gave me the choice re chemo cos it was 6mm and I read the NCCN Guidelines report. Praying it never comes back. Have found a couple of ladies on a UK forum in the same position, but there are days when I'm tired and wonder if this is the correct advice. Also now take, D3, turmeric, Vit C and twice a week omega 3 as it gives me a headache if I take it daily. Best wishes to all on here.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gretta58 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2018 at 4:37pm
Hi Kid! Newly diagnosed in May. TNBC Stage 1A, Grade 3 Invasive. Next Thursday I start my chemo. Taxotere/Cytoxan. My mama print came back that without treatment, I have a 94% chance of reoccurrence. I waited out my decision for 2 weeks, after much research, I believe it is my best shot. This is your life, do what you feel is best. YOUR LIFE.

Gretta
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