5 Steps Forward, 3 Steps Back

I did it the other way around, but then we didn't know I had much of a problem until the surgery.

Good luck, my friend.  If you trust the doctor, believe that they have hunted up the best plan for you.

I did chemo before surgery. Many doctors will want to do chemo first because they can see how well your cancer reacts to the chemo. Don't go read too much stuff about TN on the web. Somethings that are said are just outdated or plain too scary. I ask both my onc (who specialises in breast cancer and gives conferences on that matter) and my RO if TN was such a bad thing and both told me no. Yes it's aggressive but chemo works very well on TNBC. They are both very positive so I don't see why I shouldn't believe them. But I understand that it is scary. It will get better with time. Hang in there. Good luck.  

I also did chemo first and the tumor responded very quickly to it. Within two treatments it was half the original size and we couldnt even feel it at all after 3-4. My breast surgeon said from the beginning that being TN is good news/bad news. The bad news is that is very aggressive but the good news is it usually responds excellent to chemo. There were no cancer cells found in either breast after my BMX! That news was the best call I have ever received! I'm sorry you're having to begin this journey, but I pray you will have a great response like I did. I'm on the other end. I had the chemo, BMX, radiation and just had my exchange surgery almost 6 weeks ago. Feel free to ask any questions you want. Sending positive thoughts your way ...

Kathy

vshowe: bmx means bilateral mastectomy. I chose that route because I wanted to make sure I did everything possible to prevent reoccurrence. Since I was diagnosed at 44, I just chose to throw everything plus the kitchen sink at the cancer. I have no regrets. I think the scariest part for me was all of the testing at the beginning. It's so hard to not have all of the answers. For me, once I started chemo I felt better because I was doing something about it! The port is a great way to go. It makes the chemo process so much easier. I hope the rest of your tests go well. You're about ready to begin your battle. Be good to yourself! This is doable. Just take one day at a time.

And thanks for sharing about the survivors you have met. It's so great to hear that!

Kathy

Luah: you are absolutely correct that there are different options and there are definitely no guarantees. It is truly a personal choice and one that we each have to make. I was mainly sharing my chemo before surgery results with vsshowe. Because of the surgery I had I was able to know that there were no cancer cells left in my breast tissue which was a direct result of the chemo first approach. Sorry if I offended you in any way. I certainly didn't intend to.

KSteve: Thanks for your post. Perhaps I was being a little too sensitive today... it's just that I see so many posts on these boards referring to Mx as a way to "throw everything at this..." as if those who choose Lx somehow don't.

I think the chemo before surgery is a really good option for many, and for TNs in particular who only have one shot at a systemic treatment (chemo) and can assess whether or not it's working. It's great that you had a complete response. 

Good point, Karen. And those of us who did chemo after surgery have no idea if it worked or not. I am sure that in many cases, the surgery removes the cancer, end of story. But the worry remains.  

Nice to hear you're doing well... I remember your posts, as we were diagnosed around the same time.

Hi Luah - good to hear from you too. I think that the day I was diagnosed with BC will be etched on my mind forever. Scary days and sleepless nights! I am doing fine and in fact just preparing to go to Turkey for a couple of weeks with my son. He is 18 years old now and will be going to university in September. So I figured that a good long holiday would do us both good . I will be coming back to another scan though - I postponed it until after my holidays and the Oncologist was fine about it. I just have a bit of pain in my ribs and shoulder so he ordered a bone scan. I also had some bloating and feeling sick etc but that turned out to be wind!! . I am optimistic for the bone scan too. Sometimes I feel like a complete hypocondriac but then I remind myself of what I have been through and that serves to ease my conscience.

Suze35 thanks for your post. For us triple negs who do not respond too well to chemo the world is an uncertain place. You leave the breast surgeon and oncs office and think what now? No pills to take after treatment AND you know the chemo did not work. But Luah you are right - there are women out there who had chemo after surgery and have no idea whether it worked or not. So I personally would not have done things differently.

Dear vshowe - I hope this helps in your decision making. I think for us triple neg gals - whether the chemo works or not - neoadjuvant is the way to go!! I am hoping that the chemo melts your tumour away.

Karen X

Hi, this is my first post.  I've been reading quite a bit and did not want to be discouraging.  I was first diagnosed 6/09, having a golf-ball sized tumor, triple negative.  Yes, I had chemo first and the tumor shrunk 80%!!  (Chem:  TAC)  Then had a lumpectomy, all lump nodes under my arm also taken even though they were negative, and then finished my chemo and then had 6 weeks of radiation.  I finished up last summer about this time.  December 2010, a clear mammo!  Yay!  February 2001 - "Hmmm... what's that hard area I am feeling?"  Yes, triple negative came back.  (    It is infamous for that, though not always.  NOT ALWAYS, OK???  Don't be afraid.  I opted for double mast, done June 29th.  Petscan was clear everywhere else.    We are blessed to live in the highest technology age ladies, they really do all they can for us and remember EVERY PERSON IS DIFFERENT, is that not tatooed on our foreheads by now?  Ha....  Praying for peace and wisdom for us ~  HE holds us in His hand. 

vshowe,

No triple negative woman can be in remission for 13 years, so that must be a new thing altogether.

For us triple-negs, if we are clear for five years, we will live happily ever after unless we grow ourself a new problem.

Our e+ and p+ and her2+ sisters have to wait 15 years to see if they will be okay.

The worst thing anyone ever said to me was from an extended family member.  She said, "Don't worry.  Breast cancer will not kill you for a very long time.  It didn't kill my mother for 15 years."

She didn't get that what I had was different, and never would understand that, even though I told her I would not have 15 years to die if I was going to die, but 5 years.  Some people know it all and can't hear anyone speaking except themselves.  In her mind, I  was wrong.  She was right.  We don't speak anymore, and that is best.  There is nothing worse than an ignorant person thinking you are a drama queen when you tell them the truth.         

Hi yellowdoglady - i'm sorry you had that response too. I have a similar thing at work - everyone thinks I am 'cured'. I spend quite a bit of time 'educating' my colleagues who show any interest that breast cancer is actually a whole 'family' of diseases etc. There seems to be a perception out there that breast cancer is a 'good' cancer to have and that once treated you are 'cured'. Mad!! Anyway, I could get really annoyed with their ignorance too but then I realise that prior to my diagnosis I was ignorant of all the complexities of a breast cancer diagnosis myself.

TruthNLove - thanks for your post. I think it's important for all us triple neg gals to realise that there is an increased chance of early recurrence so we need to be ultra vigilant - even when we are having regular mammograms. My oncologist told me that the greatest chance is between years 1 and 3. So, your experience would confirm that. We have annual mammograms in the UK and I wish it was every six months!

Karen X

vshowe - wishing you good results for that bone scan. I remember my first bone scan - I had awful aches and pains when I was first diagnosed. I was convinced the cancer had spread - but it turned out to be 'muscular sceletal' thank goodness. We all understand how scared you must feel. Just go with the flow - no doubt you will have lots of scans and tests during treatment - especially if you are having neoadjuvant chemo. You will feel much better when your treatment is underway. You mentioned that you will be part of a trial and I will be interested to know what chemo regime you will be having when you have the details.

Karen X

yellowdoglady: Wow, what a lovely story about your produce guy! Thanks for sharing.

Karen - Thank you for your kind words.  Yes, I am NOT happy about reoccurance and I am still mentally adjusting to having a flat chest these past 2 weeks...sigh.  I am also concerned why my Dec. 2010 mammogram was clear and two months later I could FEEL the tumor!  Fast growing that TN is, sheesh!!!   Can we trust mammograms? Really?  Scary, but getting an MRI is sure not fun and perhaps overkill every year.  Hard to really say. 

YellowDogGladly - I love how you write, like you are right here talking to us!  Vent away!  We all do that and empathy here is very calming.  Working at a bookstore, I talked to volumes of women about my situation, and also theirs.  People not understanding that cancer is not just magically cured after a treatment, a surgery etc., just do not get it.  Perhaps they are a scant few not yet touched by the "C" word.  My mom passed away in 1976 of pancreatic cancer at age 49 and back then we were not at all encouraged to say the word, talk about it, even tell her she had it - there was no hospice, limited technology and it was rough!  I educate everyone I can about what I know, especially those who think, "Oh, a mastectomy, you're cured!"   But I still have to have chemo, again, different than in 2009 evidently - and like you guys all have said, it just hangs over our heads.   I try to think of it all as an adventure rather than a disease, there are hills and valleys and yes, produce guys, mail people, strangers all over who give us extra care, and I am touched my their kindess and care, they make me smile!  

Yellowdoglady,

You should start that thread, I'll certainly chime on, I've got a few people I'm in the process of letting go. 

How inconsiderate of your friends, sometimes its hard to believe some people can be so self involved.  We rarely have guests and like you I would have gone crazy cooking, cleaning, just excited to have have friends over for a nice time.  I have to admit your dinner sounds amazing!  I think even if I had eaten I would have tried a little. 

I have a friend I'm in the process of dropping.  She called the other day to see how I was feeling, after a few short sentences from me she started to complain about her boyfriend, his ex, his kids and his child support payments then ended with "at least I have my health"!  I was pretty much rendered speechless.  Oh, and I just told her that my grandmother was put on hospice.  I'm really trying to find a way to gently tell her she's a crazy, self absorbed, socially inept human.