Positive discussion about TN

Wow , I can't tell you how much I like the idea of a positive thread about our "negativity".  My oncologist told me to stay off the Internet.  I told him I already know where to avoid, any site that is devoted to triple neg.

I finished up my 6 rounds of TC 3 weeks ago.  Actually had a pretty easy time of it.  I would take off 4 days each treatment, then back to work.  Days 4 and 5 seemed to be the only "bad" days... but just achy head to toe.

I am having my lumpectomy/SNB this Thursday.  I'm nervous, but can't wait to get it over with.

JAX65 :  I live in Naples, where in Rochester do you live?  Do you go to the Wilmot Cancer center?

I hosted a party this weekend to celebrate being done with chemo and before my surgery.  Just wanted to thank my closest friends for all their support.  What a great time we had.   I plan on making that a yearly thing every summer for MANY years to come.

Hi Ladies; just a quick note to tell you I was diagnosed back 22 years ago at 39 yrs.old and again a new primary in the other breast 6 years ago. 22 years ago stage 1 and 6 years ago stage 2. You will all be shocked to know I did not do chemo and yes I have the pathology report of 22 years ago to prove I was TN. Back then if no nodes no chemo and 6 years ago I threw the dice and said NO again. Well I am doing wonderful and there are so many of us that are. Remember many of us never come back and go on with our lives. The ladies who are here are either new or are here with issues they are dealing with. Hundreds of thousands of women go on to happy healthy lives after breast cancer and so will you.

FYI, the first diagnosis I just had lumpectomy with 5 weeks radiation. Second time just double masectomy. So just think of how much better you are with all the treatment options you had and i guess you can call me stupid, I like to think stuborn but never the less I am here and doing wonderful, now 63 years old and a Noni. God Bless All of You

t

In reply to newalex. My first was IDC my second was a-typical medulary, both were TN. My daughter had cancer in both her breasts. Pleomorphic lobular carcinoma In-situ with extension into ducts with focal microinvasion in one breast, and IDC in the other breast that was  1.6cm grade 3 TN. Now 5 years out for her. The lobular was hormone receptive. She received chemo only and because the cancer that was hormone receptive was microscopic they declined the hormone treatments. I guess by todays standards we were both undertreated but 22 years total for me and 5 years for her. She is doing fabulous. She is an avid runner and is practicing to do her first marathon. As for me I'm still working and look forward to going home everynight sitting out in the yard with my glass of wine with my darling husband. Love that wine, I know another taboo but my Italian heritage, I just have to do that. Grandmother lived to be 103, worked for her.

newalex

I am not very computer savy. I would be happy to answer any of your questions and have no clue how to pm someone??? My daughter had AC chemo 4 x's. Both my mothers sisters got breast cancer in their 70's and my grandmother on my fathers side who lived to be 103 had no breast cancer on her side with 13 brothers and sisters, from the northern part of Italy. All lived well into their 80's.

When my daughter was having chemo she went snow shoeing for miles. She is a ski instructor at a local mountain and has always been active. She tends to put on the lbs. thats why she runs and it keeps her very fit. When she was growing up I was a runner before my breast cancer, after having the radiation it really put the skids on my indurance. I ran for 13 years and loved it. Now i just like living and growing old has become a good thing. I eat well, keep happy thoughts and everything in moderation. Must say that my faith in God has become the most important thing in my life and that is what has sustained me threw my daughters diagnosis. My daughter does not come on these boards, cancer has no part of her life and thats how she chooses to live. I am here for you to tell you and anyone who reads this that there is hope and to live each day with great hope that you too can survive and be happy again. Maybe a different happy but a much deeper happy and appreciation of everyday and appreciation for the people around you.

jenn3 - i think it's incredibly condescending and patronizing for our docs to tell us to "stay away from the internet" or chat rooms. and i hear that it happens all the time. if a doc said that to me, he/she wouldn't be my doc any longer. do they think we're helpless, gullible, ignorant people? it infuriates me. along that line, i will never forget the first surgeon i consulted--i told her i was adamant about having a bilateral mastectomy (even though my option was lumpectomy), and she actually said, "are you SURE? you never know when the right man might come along and you'll want two bumps." verbatim, that's what she said. well, i immediately informed her (1) that i'm gay and (2) i wouldn't be needing her services and would find another surgeon. it's mind-boggling how idiotic some doctors are.

Jenn 3

If you have stage IIIA, you would not have mets. Did you have mets at dx this time? 4 positive nodes would put you in stage II B. 

I'm exhausted today, but was trying to think of something positive to say - and I've got it!  I had my 3rd rad treatment today, and from the moment I pulled up to the building, to the moment I was driving away was TEN MINUTES!  I'm not kidding, walked in, changed into robe, they were all ready for me, lay down, lined up in record time, zap zap, got dressed - all in TEN MINUTES.  That's a rock and roll cancer treatment in my book.

I don't completely understand what you're asking, as I am new to ALL of this and hope that I am answering what you asked.

The doctor went over the pathology reports and showed me the standard charts used to stage the cancer with me.  It was based on the size of the tumor and because 4 or more lymph nodes tested positive for cancer. The pathology report also showed that it had met in the lymph nodes.   In addition I went online and found the same findings when I used my pathology report to the charts online with two different bc sites. I do think it just barely crossed into IIIA or least that's what I want to believe. 

I was diagnosed 10/08 - 15+ centimeters and lymphnodes.  Had 6 cycles of TAC (worked through chemo except the day of and 2 days after treatment each cycle), then surgery (mastectomy/16 nodes).  The pathology report came back with a PCR - pathologic complete response -- a miracle!...absolutely no evidence of cancer.  I am finishing rads this week (as an extra precaution) and feel great.  I think this positive thread is a great idea! 

Be strong! 

I agree with NYdeb - join a chemo group. I am part of July 2009 and it is a great group of ladies and I haven't even started chemo yet. I got my port yesterday and have one more scan tomorrow (MUGA) and then back to the oncologist on Tuesday. Hopefully we can work out a treatment plan. Can't wait to get started!

Well, I'll add some positive reflections on the triple negative diagnosis.  Yes, it is fast growing and aggressive, but then they think that it is because of those characteristics that it responds so much better to chemo than the positive kinds do. 

Triple negative also responds very well to a low fat mostly vegetable and fruit based diet along with regular vigorous exercise.  It responds well to keeping ones BMI between a 21 and 23.  The response is so good it is equal to the response to chemo.  So, why not do both.

The other great thing about triple negative BC is that if it doesn't show its self again within a 3 year period the chances are extremely high that your cancer is gone for good and you can be proclaimed cured.  To the cure........................Yeah!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Here's another positive - when we finish treatment we don't have to take other drugs for the next five years!!!!!

Rinna 

I believe that in the future, triple negative (especially when a triple negative "herceptin" is developed from some of the new research) or ER/PR neg, HER2+ early stage diseases will be the types with the best prognoses. 

Both types respond the best to chemo, and as stated in the post above, if mets are going to develop they will most likely occur in the first 1 -3 years.  After that recurrence rates drop down to nearly zero by 5 years (after 8 years, you triple neg ladies are in the clear).

Unlike the hormone positive type, we don't have to take AI's with all their attendant side effects nor do we have our recurrence rate slowly creep up the longer we are out from initial treatment. 

Yeah for you Shannon!! That is really positive info for us.