Calling all TNs

Thinking about all that snow, Tif!!!  We're getting blasted on Saturday night and Sunday...again!

Hope you can get a snowblower or a kid who can shovel!

I started my own topic in TN with only one response suggesting i post my questions here. I was dx a yr ago and feel like I should know the answer and understand this but do not. I would appreciate any clarification and knowledge so that I can put these 2 questions and some worry behind me.



(1) TN means high grade, correct? So, does this mean that TN is automatically grade 3? I don't think so but am not sure.



(2) Does TN have the same possible recurrence rate (higher within 5 years of treatment) or is it interpreted differently with DCIS?p>

My surgery (BMX with expanders) was last Tuesday, the 12th. I went to BS today and got pathology report. After neoadjuvant chemo (ACT), at surgery path report shows a residual IDC tumor of 7 mm. The original tumor (before chemo) was 3.1 cm. The BS called it a very good report as the response to chemo was more than 75 percent. Another thing in my favor is that before chemo I had only one positive lymph node, the sentinel node. Two adjacent lymph nodes were negative, so BS thinks the cancer was contained.



Nevertheless, I am quite disappointed as I was hoping for a pathologic complete response ( ie invasive disease completely gone.). That would be much better since I am triple negative. Any cancer that may have escaped into my body you want to have killed with chemo, and a dead//gone primary tumor is kind of a proxy for that.



I see my MO next week. She had said earlier that if there were residual invasive disease at surgery there are "a couple of things we can try" after surgery. We'll see what those are. The hormone treatments (eg tamoxifen, femara) won't work on triple negative.



Anyway, I guess I'm looking for encouragement/positive experiences from others as to prognosis with this particular path, especially related to the chance of metastatic disease. I am doing the most aggressive local treatment, as I did BMX and will do radiation in a few weeks.



I posted this same post to the surgery thread, so I go into some explanation about TNBC...more than this group needs. (I didn't want to retype.). Thanks.

It was one year ago today, that I was told I got bc. I decided to get treatment asap then I got breast surgery next 4 days. My life started changing...in a good way! I learned more about how to get a silent mind to improve inner and outer quality of life. My mind gets stronger.

I found tn sisters here who gave me a comfort zone, words of encouragement , and source of inspiration during tough time.

Truely appreciated!. 

Nuan, Congratulations and good to hear from you!  I'm glad for your inner peace.  I find that I do not take things for granted as much as I did before breast cancer.  I am glad to be here.

Placid, I had residual disease at surgery.  I was diagnosed triple negative at biopsy, then did six cycles of TAC. After my mastectomy they found the tumor had 5-10% ER receptors.  I also had two positive nodes in addition to the 2 cm tumor that remained (mine was either 2.5 or 2 cm at diagnosis depending on whether the mammogram or MRI was more accurate.)  My tumor got much softer during chemo and the doctor thought I had had a complete response.  My nodes also became unable to palpate; before chemo, you could feel one node. I was terrified after the surgery and extremely disappointed.  I went to get second and third opinions and ended up participating in a clinical trial of 4 more months of chemo. The trial is designed for those who have an incomplete response to neoadjuvant chemo.  The trial I participated in included treatment with eribulin (Halaven).  It was much easier chemo for me than TAC and I worked throughout, only taking a few days off. There are other trials out there also, including one with cisplatin specifically designed for triple negatives.  I will never know whether or not the trial helped me, but I am NED two years out from diagnosis at this point.  I just had a clean routine chest Xray and mammogram of the remaining breast. I wish you the very best, and if you have any questions please feel free to message me.  I don't check in here as often as I used to, but usually still come by a few times a month.

Christina1961 - Thanks so much. I really appreciate it. That is encouraging. I will ask my MO about clinical trials and get additional opinions if necessary. Thanks again.

OT, but I am looking to see if anyone on this thread who remembers Suze35 knows how to get in touch with her friend Kim Shapiro or if not, her family.

Hi girls,

I haven't been on for a while, but I have a question for everyone. I had a lumpectomy back in June of 2012. There is a red bump on the scar. It hasn't been there very long. i just noticed it today. Should I be worried? Thanks for the input.



Lisa

Lauren15,

So very glad you feel well enough to come back online. You have been heavy on my mind because we started this journey pretty much together. Please stay well and come back often.

Hugs, Sheryl

Hi Sheryl and NavyMom - I've been thinking about you a lot too and hoping to get back in touch!!!

Thanks Bak94 for letting me know about the Abraxane.  I too am praying for a complete pathological response.  The MO said I can probably just have a lumpectomy; however, I want to do whatever lowers the recurrence chances and am thinking about a BMX.  What did you do?

5thSib, my RO said we will wait 2 weeks after chemo and then start radiation 5 days a week for 5 weeks. I'm just in the first week of round 1 chemo and back in the land of the living today.  Wow-day 3 & 4 were really hard.  Today is a good day though.  The sun is shining. I got to go watch our Tigers win the regular season championship today.  I enjoyed being outside walking to the FedEx Forum for the game.  The sun felt great!

I had some delays between chemo and rads because I participated in a clinical trial. I had to be randomly selected by a computer, after i met the criteria. Early stage, lumpectomy, no node involvement etc. Did accelerated rads which lasts 15 days rather than 33 days. Love it! I finish on Tuesday with no ill effects!! No fatigue and no breast changes.

Teresa008....

First of all welcome to these wonderful boards with such great ladies who are all here for support, guidance and will offer advice whenever we can. So sorry you have to be here but it is a great place to come with concerns and questions and comfort. It is a tough road but all these women help everyone get thru one day at a time!

It has been a year this week since I was diagnosed triple negative and though a really tough and long year I got thru now getting ready for my exchange surgery next month. It is a bump in the road that you will see the light at the end of the tunnel soon enough but in the meantime you have to do what is best and going to beat this thing. If you are in fact triple negative which it sounds as if you are then I am afraid there is really no other choice but to have chemo. Because triple negative has no other defense such as hormone therapy to help us we have chemo as our only treatment. Even though you had a mastectomy with clear margins and no positive nodes the triple negative alone warrants chemo to kill any tiny minute little cells floating around that could one day take up somewhere else and grow as cancer cells. I had a double mastectomy with tissue expanders placed with clear margins and no nodes. Completed 4 1/2 months chemo and had expansions during chemo. Now I have my implant surgery scheduled for march 19.

You need to ask questions of your BS and PS and make sure you are correct in the triple negative diagnosis. If so and chemo is in fact in your future it is doable and you will get thru it. Come here with any other questions you have or rants even. We are all here to listen and give any comfort you need. I am sure there will be others here to also respond to your concerns. Good luck and try to breathe. It will get better once you know your definite path.

Melissa

Thank you Melissa. I know that I need to have chemo and I'm slowly but surely wrapping my head around it. I just feel like they kind of dumped everything on me at once. My 'definite path' seems to change every couple of weeks right now and it's very unsettling. A lot has happened in the last couple of months. I had cervical dysplasia years ago and my pap smears were coming back as abnormal for years, but at my last gynecological exam last November my doc told me that she wasn't even going to do a pap this year because my tests had finally come back as normal the last couple of years. I was feeling so good about that! Then she sent me for my yearly mammagram, which had never come back as abnormal, and all this fell on my head! These things happen so fast that you don't feel like you have a chance to breathe at all. Thank you so much for the words of encouragement. I would  say that I am glad to have others to talk to about all this but I would rather be the only person to ever have to go through it all.

Thanks again so much.

The test is useless for TN, it is for early-stage, node-negative, estrogen receptor-positive IDC. So the fact that it said 67% for me really means nothing.  At first I was pissed that we wasted time and money but then I realized if we didn't figure out that I was TN I could have been moving forward with the wrong treatment.  To clarify - I didn't not have the onco test done two times.  Once it came back TN, the doctor sent the tumor off for another pathology report....which confirmed TN.  I hope that made sense.  Here for you