Triple Negative Beyond Treatment

Angelsabove - I don't know what to say to make you feel better but I'm in the same boat.  No family history, had children, breastfed, etc. etc. Mine was caught by a screening mammogram my family doctor ordered just as a baseline "for the file:" Mammograms don't start until age 50 here in Ontario, Canada and I'm 45.  One thing I can say is I have a friend who had a 3cm triple negative tumor with a few nodes involved nearly nine years ago.  She was 29 at the time.  She has since married and had two children.  Her annual MRI was a few weeks ago and she's still NED!!! Hang in there.

Hi Angelsabove,

I was diagnosed later in life than you (at age 45), but also have three kids, breastfed, had no family history, exercised and ate fairly healthy.  Then last year...BAM...I found the lump that changed my life. 

I made it through my lumpectomy, chemo and radiation, then just like that I was done.  The docs said, "See you in three months!" and I kind of went...WHAT?  When I was in active treatment I felt like I was doing something to kick cancer's butt, but once that was done I was left with a "new normal" to navigate.  It does get better the further I get out, and I try not to worry that each ache or pain is the return of this horrid disease.  Some days that's easier than others...

One thing I had heard that would help was to have a ritual to mark the end, whether that was planting a tree, treating yourself to something special, smashing all your anti-nausea pill bottles, whatever.  I went out and bought a silver ring that I put on my middle finger each morning while telling myself "F*** Cancer!"  It's my mantra to try and not let the experiences of the past year taint the experiences of this year and the many years to come.

Good luck to you on your recovery!  We are all in this together!

Just wanted to chime in here to let you know that someone way older than any of you that have posted has the same fears, for all the same reasons, and did everything right as well.  I was diagnosed last 2/23/09 - after going for yearly mammo's since I was 40.  No birth control pills ever, always healthy, no family history of ANY cancer on either side of family (I'm the first) - two kids, breast fed for a while, refused all hormone therapy during my disgusting menopause - and wham!  Here I am, as you can see by my stats below.  I live in fear daily of recurrence.  Every little pain, headache, cough, etc. freezes me in my track no matter how hard I try to brush it aside.  Had my last rad on December 5 - and since then, literally hanging in limbo.  I am a young 62, a widow, work full time as a legal asst., and raise my 14 year old grand-daughter - who I must be around for and get through college.  So, there you have it - I am fortunate in that I have raised my girls, have my grandkids, and have at least lived to this point - which I wish for each of you - plus at least another 20 years on top of where I am now.  I just wish they would hurry up and find something else for us - like yesterday!  I don't think a night goes by that I don't lay there for a while just wondering  - why?  So many of us - every hour of every day we have new girls on all the boards out there - why?  Why is this happening at this constant pace - God, I wish they'd find out already - and what the hell is this damn triple negative crap we had to be doubly inflicted with.  May God bless us all.

Linda

Now what?  I know that feeling.  I'm finally admitting to my doctors that even though I was diagnosed in 2008 and had the majority of my treatments and surgeries during that year, I basically cried at least once every day in 2009.  (2010 isn't proving to be too terribly different, except now I'm seeing a therapist who specializes in oncology.)   Anyway, I saw my BS at the beginning of this month.  She understood completely.  She said we, meaning my doctors, have all moved on, and I'm stuck right in the land of breast cancer.  I said yes, all of you have gone on to other patients, more serious cases, and I'm just stuck.  She mentioned it was like having post-traumatic stress syndrome.

In terms of having the "good" cancer, I had a close relative actually say to me, I was lucky because at least I didn't have CLL (chronic lymphocytic leukemia).  Her sister-in-law was battling it.  She said that to me at least three times before I realized what an offensive comment that was.  And then I got angry.

It's hard to let go for some reason.  We wear it like a medal of honor.  And I think that's okay.

On Feb. 18, 2009 I walked out of the infusion room with my Purple Heart Cert. of Completion and a big smile on my face.  I had that smile for the next 3 weeks, that's when I would have had my next round.  Then it hit me... there was nothing more they could do for me and I was really scared. All I did was worry about recurrence.  Had scans in March, all clear.  That didn't help much because what if the cancer was too small to detect. You get the picture.

I joined local support group and it's helped me put things in the proper perspective. Time has passed and that's also helped.  I've decided cancer has taken enough away from me.  I had aggressive chemo, I eat a well balanced diet, and exercise.  I can take solace in the fact I'm giving it my all.  If it comes back I'll deal with it then.  That's not to say I don't think about it from time to time, but I don't dwell on it anymore.  Best wishes.

Carolina...love the silver ring story,,,your mantra is right on.

Anna

I'm reading your post and boy it really strikes a nerve. It's nice to know that this triple neg. status and the feeling that you can't do anything after surgery, chemo. and rads leaves you feeling so empty and helpless.

I actually had someone tell me, "well at least you got the popular cancer."  WTF!!!!  

Wow I have read all of the posts and am inspired.

Angel.  My take is a little different.  When I was first dx with bc I would sit and watch people and say wow arent they lucky they dont have cancer.  I would see women in the grocery store wishing I was healthy and carefree as they appeared to be.  Me with my wig, no eyebrows or eyelashes.  But here is the thing.  Who knows who is going to get cancer and what type.  No one knows.  So why should we be any different.  Everyone is in the same place.  Will we get cancer again...I dont know.  We are just more aware of it than most people. 

I decided that my Lord and Saviour Jesus Christ is in control.  He decides whether to allow BC to come back or not.  I trust Him.  I am not going to worry about recurrence.  I refuse to worry.  I will deal with whatever comes my way, if it comes my way.  The Lord will help me no matter what happens.

I have decided to move forward with my life.  I still have a ways to go.  I have 7 weeks of rad and I am on a trial for  3 years.  So for me I have a much longer journey than most TNs. 

Thank goodness we have this board to come to for support.  It has been a wonderful place for me to come to  for additional support.

Anita

Lorrie thanks so much for that info regarding trial results.  How is taking Ibandronate?  Any SEs?  Wow we have really similar stats.

Anita

Well today was my first day taking it.  I heard that acid reflux and esphogeal issues might happen.  So not really sure we shall see.  For chlodronate I was told to wait 30 min...should I wait 1 hour?    Are you worried about osteocrosis?  I am not that worried but it does cross mymind. 

Angelsabove - I want to tell  you that things do get easier....  gradually. I am coming up on my 5 year cancerversary in April (knock wood). I was dx'd at 37, right after the birth of my first child. I had my chemo up front - taxol x 12 weekly, dose dense ac x 4, surgery, then 30 rads (25 +5 boosts). The first year is the hardest. It is hard to go from fight mode... to basically wait and see mode. And the fatigue lingers. They say as long as you were in treatment is about as long as it takes for the fatigue to subside... so for me it was a good 9 months! Which was funny, because I was pregnant for 9 months, then 3 months later was diagnosed - treated for 9 months, then recuperated from that for 9 months! It was the never-ending pregnancy!!! I am still here, though and cancer free. It has not been without worries every now and then - especially in the beginning. Every new pain you start to wonder if it is back. But it helps to remember if you have changed your activity - or lessened it as sitting in front of a computer is not good for your body either! (I say this as I sit in front of my computer... LOL). I did go on to have another child and I definitely do not take my children for granted. I think cancer has had its hand in that - it makes you a bit more grateful for the things you have and the time you have been given. Having said that - it still sucks being given the dx - and I agree w/scooby - in the beginning I would be shopping and see women with their children with what seemed as if they did not have a care in the world. I was so angry. But the truth is, we don't know what others might be going through - it did take me a while to admit to that! Hang in there, yes TN leaves you with fewer options for treatment than those that have other types of cancer - but the things that you CAN do are try to exercise and eat right. Numerous studies have proven these two things to help ward off a recurrance! One day at a time... and plow through... to... whatever it is that you want to do!!! (vacation, cruise, triathlon, the next doc appt)...