Newbie with TNBC ~ question about recurrence?

MaxEmily

Hi all, I have been "lurking" for a while now, but would like to join in!! Just would like to thank you first for all the advice and support you give countless women!!  I am coming up to my 1 year cancerversary and finding myself very, very anxious.  I was diagnosed in Jan 2013 with Stage 1A, 8mm, no nodes, clear margins TNBC.  I am 45 years old, had a double mastectomy within 2 weeks of biopsy, 4 AC DD and 12 Taxol.  The threat of recurrence is ALWAYS ALWAYS on my mind.  My PCP said to go out and enjoy my life and not worry.  My question is this:  Does anybody know of anyone who has had a recurrence after being diagnosed Stage 1A??

Again, my heartfelt thanks to all of you.  I hope that one day I will be strong enough to give back to other women too

JaneB1

Hi MaxEmily,

Welcome and thanks for posting. I too was Stage 1A with extensive DCIS, a 3mm tumor and numerous microinvasions at age 53.  The tumor was TNBC. No nodes involved. I was told I did not need to have chemo but I could do 8 CMF treatments if I wanted to.  I chose not to since no doctor I consulted said I needed it and some said flat out that I should not do it.  I have lost 50 pounds and I exercise regularly which I never did before. So I am hopeful that will help. 

But the fear of recurrence is very real.  I am coming up on two years since surgery. I find I am a little bit less obsessed as time goes by.  I will be thrilled when I reach the 5 year mark at which point I was told our recurrence risk returns to the BC risk in the general population. This is a very different risk profile from that of ER positive BC, which carries a lifetime risk of recurrence. 

I appreciate your asking the question about recurrence. I do recall reading on these boards about one TN Stage 1A who relapsed with mets but she was BRCA positive and in her early 30s. 

So, it does happen.  One if my MOs explained it this way:  I have a 3 percent chance of recurrence. That means of 100 women with my exact diagnosis, 97 will never have to deal with the beast again. But, 3 will relapse with mets. So, just based on the statistics I was given, it's clear some Stage 1As will relapse. But not many.   I will be interested to hear from others. 

MaxEmily

Hi Jane B1, thanks so much for replying.  Congrats on being two years out, isn't two years a "milestone" of sorts for TN??  YAY!!   My oncologist put my stats into a computer program and it can back with 10% chance of recurrence.  I know it is SO much better than a lot of people have and I am SO grateful for that, but I am obsessed with being one of the 10/100 that it comes back in.  My PCP said he has never seen anybody with a 8mm have a recurrence, but he is not an oncologist, so..... I have good days, where I feel strong and like I have conquered it, and then other days, like today, where I feel weak and feel like my body will fail me.  arrrgg!!  I am curious as to what other posters will say too  Take care, and thank you again for your response, it feels so good to know I am not alone!

elindy

I'm only a few weeks post treatment, chemo and rads, for TNBC and the thought of recurrence is always on my mind also.  It doesn't help that my MO does not do routine scans.  She also put my stats into a computer program, including my grade 2 and it came back with a 13% chance of recurrence. I do have many follow up appointments scheduled with the various docs, RO, MO, PCP and BS, so that helps a little with the anxiety, knowing they are following me pretty closely. Best of luck to all of us.

MaxEmily

No, I do not get scans either, which is a hard pill to swallow I know.   I have an appt on Tuesday with my recon dr, and late Feb with oncologist.  Going to see the dr does help, just gives you peace of mind for whatever reason.  

Thank you for responding, sorry we are all in the boat :-(

slv58

hi Ladies, I completed tx end of Aug. and just had my second follow up apt with MO. It went well and have graduated to 6 month check ups. I almost cried and felt like a fledgling being pushed out of a nest! I do not get any scans and will have my first mammogram since surgery in June. I try and live my life on a daily basis, but sometimes it's hard to do. I totally understand how hard this is, but I think it's important not to let it take over our lives. I never asked for % of recurrence and to be honest, for me, I'd rather not know. I refuse to be defined by percentages-I am unique, just like each of us! Positive thoughts for upcoming apts!

Kruise

hi MaxEmily

I am 45 and like you also coming up to my one year cancerversary. I found my lump on 1st Jan 2013 and was told on 7th Jan it was cancer.

During December I went back to my specialist and had a checkup and a new baseline mammogram after my year of treatments. Everything is/was fine.

However, also in the past month I have been worried about mets - mainly because my neck has been sore and I've had headaches - but now that Christmas has been and gone I am starting to feel a lot better. So perhaps it was stress related.

I have decided that stressing and worrying are futile activities. Who knows what tomorrow may bring - but today I have my loved ones around me! I can choose to eat well, be well, find joy and happiness each day and appreciate the now. The now is what is truly important. I now also know that if in the future I have to face more cancer recurrence or treatment - that I will be strong enough to do so. I have learnt how strong I really am - and also how loved in this world by my family and friends I really am. I will cope with whatever comes my way as so many of our awe inspiring bc sisters do every day. I am making a conscious decision not to entertain negative thoughts and to instead concentrate on all the positive things I can do to help myself. 

I know it is easier said than done sometimes - but every time you find yourself worrying or drifting into the negative - say to yourself 'cancel that thought' and focus on your dreams and your current blessings. Train your brain to let the worrying go. So important - let it go! As you said in your own post - you know you have been lucky - be grateful for that and get on with doing something amazing with the rest of your life. Follow your dreams! Don't live in fear. It's just a waste of energy. Only you can pull yourself out of the gloom.

As for stats - don't put too much emphasis on those. You are unique and believe that. We could spend our lives worrying about stats - 'if I drive my car today, what are the odds I will be involved in an accident?', 'if I fly in a plane, what are the odds it will crash?'....we don't or shouldn't let it consume us. Nothing is guaranteed. 

Live each day to the absolute best of your ability, be kind to others, follow your dreams and have faith, hope and love in your heart. 

lmcclure4477

Hi All!

I am also coming up on my one year cancerversary.  I was 35 when i was diagnosed on New Year's Eve of last year and had my surgery January 14th. I am also stage 1A triple negative. My tumor was 1 cm and I had clear nodes. I had chemo and a double masectomy. I also am fearful of recurrence. I have good days and bad. Some days I stress about it and other days I feel strong. Since my diagnosis I eat a lot healthier and exercise everyday. My goal is to run a half marathon this year. My running makes me feel strong and helps me deal with my stress. I have a 3 year old and 7 year old and I will do everything to prevent this beast from returning. I also try to cut out alcohol as much as possible which sucks at times. 

Can I ask what others are doing to help lower your risk of recurrence?

wrsmith2x

Ladies, 

I totally understand your fear.  I was diagnosed with Stage 1 in 2007 and recurred as Stage 2 in 2011.  It can happen.  It doesn't mean that it will automatically be Stage IV.   I worry every day.....try not to but it is always there.  Mine was just far enough apart to make me feel like I was done.  And then it happened again.  Now I am 2 years past that and with every passing day it gets better.  

Please know that one day you will feel normal and BC won't be on your mind 24/7/365.  You just have to patient until then.  And get things checked out if they last more than 2 weeks.  Make your doctors listen!  I pray the Beast leaves your body and you mind very soon.  Namaste'.

fightinhrd123

Not triple neg but my friend is and was diagnosed with me w 4 positive  nodes in 2008.  She in fine today