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ScorpioMom View Drop Down
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    Posted: Feb 05 2014 at 8:47pm
Hello All... 
 I am new to TNBC... but not new to Breast Cancer....  In July of last year I found a very small lump... I did not go into panic mode over it possibly being cancer... in fact, with Cancer of any kind never being mentioned anywhere in my family, it was the farthest thing from my mind... I was 45 at the time and knowing that woman go into menopause differently... and can start then back out of it... I was leaning towards this being a pre-menopause cyst....  so I watched it closely... it started to get bigger... so researched more and more... when I read that some cysts would get so big that they would not go away on their own... I made the doctor appointment to have it drained...
The doctor drained out blood... he said he didn't think it was a cyst... he thought it was a hematoma... I'm thiking to myself at that point... how the hell does one rupture a blood vessel in their boob.... 2 days later it filled with blood again... at that point he ordered a biopsy... They took 4 core samples and low and behold all 4 samples came back positive for cancer.... I was in complete disbelief....  then he explains to me that it's a triple negative cancer and very aggressive... which of course scared me even more....  I kept telling myself... I am too young to die  and I have too much left to do to die.... 
I then went to a cancer center with all my records, pathology, mammogram images etc...  Same diagnosis... so we came up with a game plan.... 
I went through 5 rounds of harsh chemo from Sept to Dec.... 4.5 hrs each consisting of Cytoxan, Doxorubicin, Taxotere followed up the next day with a Neulasta shot in the arm...
I had heard nothing but horror stories about having chemo and the side affects that come along with it.. I was given a fist full of different medicines for the nausea... of which I have never taken the caps off of any of them... 
I am a small business owner... I was able to continue to go to work everyday... In fact, up until I had to close my business to have surgery, there were still people in my small town that had no idea I had cancer....  keeping such a secret in this small town from August to January is quite an accomplishment itself....  
I had a double mastectomy on January 27th.....   by 7pm that night I was at home in my own recliner...  I felt much better than I expected... and I had much more movement in my arms than I expected... but then again... I wasn't sure what to expect.....  at the follow up appointment, the surgeon said that the right side came back negative for cancer... he took 10 lymph nodes and they all came back negative for cancer.. and the tumor (that had created it's own blood vessel to feed from) started out at about 3.5 inches was less than an inch at the time of surgery and that he had gotten everything....  I asked if this meant I was "Cancer Free" and I was told yes....
I will however begin radiation soon as a safety measure just in case there is a little pissed off cell lingering somewhere... which I am ok with just to be safe..
I am a week past surgery now... and doing fabulous.. feeling great... anxious to get out of the house and back to work.. but in the last couple of days I have found this hidden fear and panic... that this is not over... that this has all gone too smoothly...  
Is this just normal emotional stress?  Should I just take the "Cancer Free" results and be thankful that I was able to handle it all so much better than the horror stories that I had read?  What are the chances of it coming back somewhere else? ( I know that's a risk)
I'm not real sure how I should be feeling right now... I am a pretty private person around this small town as people like the coffee house talk..  I was glad to find this site dedicated to the Triple Negative Breast Cancer... I thought I could get some advice and read other stories on the emotions you go through after surgery.... 

If anything... it has helped to just get it all off my chest... 

Thanks
ScorpioMom


 





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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: Feb 05 2014 at 9:12pm
Hello Scorpiomom,

So glad you found us and hope we can provide some support while you're going through treatment and afterwards.  Did they tell you what stage you were?  It sounds like you had a good response to chemo, but not quite a complete pathological response (pCR) since there was some residual tumor left.  Has your oncologist talked about doing adjuvant chemo after the radiation?  There have been some members who didn't achieve a pCR after neoadjuvant chemo that participated in a clinical trial. 



It sounds like you've been able to work full time up to surgery, which is great news!  I hope you find lots of good information and helpful support from everyone here.  The fear and worry are sometimes the worst side effects of this disease.  Please feel comfortable to ask questions.  Wishing you the best as you recover from surgery and move onto radiation.

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 NED11/13,MRI NED3/15

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ScorpioMom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ScorpioMom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2014 at 9:34pm
Thank You Donna.....

I was told in the beginning that it was a stage 3 because of it's size... it was about 3.5 inches...
Oncologist said he would do chemo (up to 6) before surgery as long as the tumor responded... there was continuous decrease in size after each treatment... but no change between chemo #5 going into #6.. and in the beginning, it was explained to me that they wanted Chemo first to reduce the tumor as much as possible prior to surgery... and get kill any cells that might have gotten into the lymph nodes... 
He explained that he could control cancer with surgery by just removing it from that area... but Chemo was the only thing that kills cancer throughout the whole body.... 
so on Dec 17th when I should have had Chemo #6, he cancelled it and referred me to the surgeon... 
now to throw a wrench in things.. the Oncologist that has been with me through all this has left the center... his last day was the 31st of Jan.... I'm not a bit happy about this.... but don't have a choice..

I met with the surgeon again for my post surgery follow up on the 31st...  he specifically said that I would not have anymore chemo...  I know he is the surgeon and not the oncologist...
I guess I won't know anymore until I meet my new oncologist on the 24th of Feb... 

I meet with the radiation Doctor on Monday the 10th... 

Thanks again for the reply...
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MandyM16 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MandyM16 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2014 at 9:40pm
Hello Scorpiomom-
Like you I was able to work and honestly lead a fairly normal life while going through 20 weeks of aggressive chemo. Also like you and I'm sure many others I often wake up with overwhelming fear that my cancer will return. I was 39 when I was diagnosed last year and a new mom to a precious 10 month old little girl. As hard as it is each time I start focusing on the fear of reoccurrence I'm reminded that I need to focus on living and not the fear. It is hard and like a lot of people there are hard days of constant fear but each day it does seem to get better. Talking with others who have the same experiences has helped me. Good luck to you!
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ScorpioMom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ScorpioMom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2014 at 9:50pm
Thank You MandyM16

I know talking to others that have gone through or are going through this helps.... 
and I'm hoping that once I'm able to go back to work it will help keep my mind from wondering...  There were weeks during chemo that I could work all week and not once think about having cancer.... maybe part of this hitting me now when I have been so strong through it all....  is because right now I'm locked up in this house with nothing to do but think... 

Hoping it all gets better for me... 

Hoping all continues to go well for you.... 

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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2014 at 10:16pm
Dear ScorpioMom,
The fear that you are experiencing now is totally normal.  You are at the end of surgery and chemo and beginning to feel as though the 'safety net' is being taken away.
 
Once you are able to resume your work it will help a lot.  Keeping the mind occupied helps. 
 
Good luck and let us know how it goes with the new oncologist.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage 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 - 11/2015-9 yrs NED
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2014 at 11:19pm
Dear ScorpioMom,

This is a very tough post for me to write but I think you should seek a second opinion from a Breast Medical Oncologist at a NCCN or NCI facility regarding your treatment plan.

If you tell us what city you live in maybe we can suggest someone.

Having said that, I sincerely wish you the best of luck and a smooth recovery.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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ScorpioMom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ScorpioMom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2014 at 12:13am
I live in a small town in Illinois...  I have been traveling to Columbia MIssouri for all of my treatments. 
Ellis Fischel Cancer Center..... 

Steve, your post was sort of mysterious to me....... I am a straight up kind of person...  I would rather know what I am facing than for someone to beat around the bush so to speak... 

Can I ask why you fee the way you do??? 

Thanks...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2014 at 12:25am
Dear ScorpioMom,

I am a "straight up kind of person" too and I can understand why my words might be unclear. 

I would rather talk to you privately and I will send you my contact information and we can give this topic the time and care it deserves.

And please understand I am not a medical professional...just a volunteer patient advocate. let's talk if you are willing.

warmly,

Steve 
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 06 2014 at 8:09am
Scorpiomom,

I live in St. Louis.  Siteman Cancer Center is a NCCN facility and I'd highly recommend them if you want a second opinion.  http://www.siteman.wustl.edu/breastcancer.aspx

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 NED11/13,MRI NED3/15

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