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Another one of you...

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T-Waz View Drop Down
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    Posted: May 14 2016 at 8:26pm
Hi all.  Another TNBC warrior here.  I found a lump in late February, but it was one of those things I wasn't sure of, so I decided to wait through my cycle and see what happened.  Ended up waiting about 6 weeks before finally going in.  With no family history and few risk factors, I didn't think it would happen to me.  Well, it did.  Diagnosed with TNBC on April 4, 2016.  I had two pathology reports from two hospitals and the tumor is about 1 cm.  One lymph node was biopsied as positive.  I'm a clinical stage 2.
I started AC on April 19.  I've had 2 infusions out of four.  I then switch to taxol.  I don't do well with the chemo side effects. 
I had an MRI last week and that suspected 2 lymph nodes likely positive.  There was also something in my left breast.  I had that biopsied and it was negative for cancer. 
I had genetic testing last week-- I'm 43.  It'll be a month before I find out what is up there.
I'm scared, but hopeful. 

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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2016 at 9:22pm
Hi T-Waz,
Sorry you had to find yourself here because of TNBC, but you've found a wonderfully, supportive group of people who will allow yourself to be completely honest, and we all understand. Please feel free to ask your questions here, to vent or to just share whatever happened in your day, good or bad. 

I can completely understand your shock and sense of fear, I think we all felt that initially. It is very important that you keep that hope and that you know that you will throw everything possible at the BC now. I don't there's anyone here who will tell you that they did well with the chemo side effects, we all had something. 

I am glad for you that the imaging was able to see/find something. In my case, no method of imaging was able to see my tumour, despite it being the size of a baseball. Chemo shrunk the main tumour to 2.2cm at surgery.  Like you, my TNBC is in my left breast as well and next week I'll be seeing the radiation oncologist to get ready for radiation. I had the genetic testing as there's no family history of BC and I'm negative for both BRCA1 and BRCA2.  This time of waiting is very difficult, be gentle with yourself while waiting. Be careful when you use Dr. Google, there is a lot of misinformation out there and it can be frightening. We are here to help support you every step of the way, ok? 

Just take things one step at a time, don't forget to breathe, deeply too. Good deep refreshing breaths can be very helpful to get through any particularly difficult moment. 

Keep us posted how you're doing, ok? 
Jacklin
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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T-Waz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote T-Waz Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2016 at 9:38pm
Thank you.  I've been good about Dr. Google & sticking to the good BC sites!  I have been really positive too- very open about my diagnosis.  The support I've gotten is overwhelming and I know I have encouraged at least three women, including my sister, to get their first mammogram.

I am married with an 11 year old son and 8 year old daughter.  I fight for them.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2016 at 11:54pm
Welcome T-WAZ,

As Jacklin said, we're a crazy group of ladies all climbing the same TNBC mountain. I''m praying for a PCR (pathological complete recovery) for you after chemo prior to surgery. Ask lots of questions and always take someone with you to appointments so that you don't forget anything. I feel like I had every listed side effect from AC...I'm currently between taxol #2 and 3 and seem a little better. It is survivable...just take it one day at a time!

We're here for ya!

Amy
Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2016 at 11:12am
Thanks Amy for including me in the crazies!! Love it, it certainly explains a lot about me Wink

Let me add that we found it useful to take a small tape recorder to every appointment. This way we could listen afterwards to what was said. We were surprised how much we 'missed' so having the recording was truly helpful.

Like you T-Waz, we also have children. They're grown, 33, 30, 35, 34 and we also have 3 grandchildren, 3, and 2 @ 18 months. Like you, they're reasons to fight this illness with everything we have. It's also ok to fight for yourself too, you are special and needed by so many. 

It's snowing here this morning. Yes, snow!! Poor tulips, they look so sad being full of snow. Even the robins are all confused. This is all part of Canadian spring!!

Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2016 at 4:52pm
T-Waz: just wanted to give you some positive feedback. It's great you had 2 opinions, and 1 centimeter (about 3/8 inch) is small and you should have a good prognosis, even with one lymph node. My wife had 5cm tumor/4 nodes cancer...

Fwi, I didn't think my wife would get TNBC in her other breast 7 yrs later, after having IDC/ILC Stage 2B in 2008. There's no explanation for it, since her genetic testing (this year) and androgen testing all came back negative...

The Taxol can be tough. My wife had toenail problems, she's been using Vicks Vaborub, and it's worked.(recommended by chemo nurse) She has had intestinal problems, like IBS, she got this "Culturelle", it's a probiotic, containing Lactobacillis GG, this seems to have a good affect to replace any bad bacteria in the GI system, she takes acidophilis also, they both have had a good result, over weeks, not days. These might be issues for you when you finish Taxol chemo...she is 66y/o

My wife's oncologist told her to do this, and if her digestion didn't get better in 3 months, or got worse, he would refer to a gastroenterologist. He said he/she would "give you something" but he thought this would work itself out. So far so good.

My wife's genetic tests came in late too, it didn't seem urgent, actually over 60y/o they don't place as much urgency  in it, they went full-speed ahead with treatment, I'm glad they did...

hope this helps...




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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Sydney123 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sydney123 Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2016 at 11:14pm
I have some questions regarding diagnosis of TNBC. I do not have it but know someone who does. When you have first been diagnosed with TNBC after finding a lump, were you given a lung, bone , brain and liver scan to see if it had already spread? We're you offered a mastectomy? We're you given information about diet, how spreading and recurrence were a high risk etc. I just dont think my friend has had the proper info.
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Ssam View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ssam Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2016 at 9:50am
Hi all, and Steve, please can I ask if anyone else has a small tumour diagnosed?  My tumour was 6mm, with WLE and no lymph node involvement. I had 20 rads, but no chemo as tumour considered so small. Mostly happy with this decision but would love to hear from anyone else with very small tumours.  NCCN guidelines have been helpful, but a human would be better!! Thanks.
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.
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Pink Sue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Sue Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2016 at 9:58am
Hi, Sydney 123! I had a pet scan when i was diagnosed to see if my cancer had metastasized past my breast and lymph nodes. I know this would puck up concerns in the organs. Not sure about the bones.
Dx: 11/13/15 TNBC, rt breast (9.5 cm) & 3 lymph nodes; BRCA -; Chemo: 12/3/25 - 3/4/16- 4 DD A/C, 12 DD Taxol; Surgery: BMX with PcR on 5/4/16; Staging: Stage 3B, Grade 3; Radiation: TBD
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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2016 at 11:21am
Hi Sydney123, once I had a confirmed diagnosis of TNBC I had a bone density scan and a CT scan to check for metastases. Prior to starting chemo I also had an echocardiogram to ensure my heart was able to handle the chemo. Due to the size of my tumour, I was told the only option was a mastectomy. Yes, there was some discussion about nutrition not as much info at that time about spreading and recurrence because I was going to start chemo immediately (therefore hopefully stopping any spreading). 

Please note that when one is first diagnosed, your world seemingly spins out of control and you can't retain a lot of what is being said at meetings. I would strongly suggest your friend record each meetings to that she/he can listen to what was said afterwards. To date, all of my doctors have agreed to let us tape record the meetings. This will help as she/he processes all the information after appointments.

Wishing you all the best and your friend is blessed to have you as their friend. It's obvious you care a lot.

Ssam, I had a large tumour, over 7cm, so I can't make any helpful comment to you, sorry.

Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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