I am so scared and feel as though I'm locked in a nightmare. My mom was diagnosed with TNBC in April 2009 at age 62. She had had a negative mammogram only 8 months prior. On diagnosis the tumor was 5 cm, the radiologist told her they never see them that big anymore. One week later it had doubled to almost 10 cm. The surgeon said she'd never considered breast cancer surgery an emergency until she met my mom. I'm an RN and before that worked 10 years in a pathology lab. I'd never heard of TNBC and was absolutely floored at the aggressiveness of this tumor. She underwent a mastectomy, then months of chemo and radiation. It reoccurred to 5 places (no organs) exactly one year later and she went back on chemo. Now her tumor markers have jumped exponentially and it looks as though there is extensive tumor in her other breast (which scanned clear 2 months ago). They are doing a PET next week to see exactly what they're dealing with throughout the body and then they will develop a plan.

 

I turned to denial often over the last 18 months and repeatedly told myself everything would be ok. Last night I was slapped in the face with a reality I feel I can barely take. The chemo obviously didn't work. I know there are more treatments they can try but so far this tumor seems to have just laughed in the face of everything they've thrown at it. Her markers are now double what they were just prior to her original surgery.

 

I'm so scared at what we're facing with my mom and wonder how we're all going to cope. I hate the idea of her having to go through more treatments. I hate the idea of what will happen if she doesn't. I hate TNBC. I hate it all today. I lost my dad to a rare aggressive cancer, Mesothelioma, nine years ago at the age of 61. The entire experience broke my heart. But my mom. Oh my gosh, I just can't lose my mom.

 

Your mom does have options and in the Metastatic Forum you will find lots of information about trials, etc.  Where are you located? Has your mom been tested for BRCA 1 & 2?  At 62, it is likely that she will be a good candidate for a trial but we need to know where you are first.  Also, the treating team, are they knowledgeable with triple negative?  Is there cancer in your mom's family? That really is a priority with this type of cancer because it is so tricky to treat.  Chemo is the only best thing that we have to kill off the cells so the type that we take will determine the trial that will be compatible. 

 

Check out our new brochure explaining TNBC located under resource on the top of this page.  It tells you just about everything you need to know. 

 

Life is so difficult at times, because this cancer has no barriers.  It is horrible enough to have to deal with cancer let alone this type.  I finished my treatment Dec 31st 2009 and Thursday I will have another biopsy in the same breast for another lump I found.  Mind you, mammogram did not pick it up, only ultrasound.. so the biopsy will be under ultrasound. 

 

Stay strong and know that you are part of a bigger family now who offer so much of their own journey of triple negative.  I am sure the gals and guys will be here to answer your note soon.

 

Take care and know that you or your mom are never alone any more.  We are here for you!

Helen in NS

Lee in Denver

I am the mother and I can relate to what you are going through as my daughter was in your shoes.

She is one of my biggest, strongest rocks along with hubby and son. But most importantly, God.

As you said, there's nothing to do but wait for the results of the Pet scan. You will then have a more definite plan.

Are you planning on getting a second opinion on the new results? Is your present onc on top of the Triple Negative aspect of the breast cancer.

We have a member here (Steve) who is our guru as far as professionals, and facilities that specialize in TNBC. I am sure he will be along shortly to help in finding these places as soon as we know where you are located.

Take time to breathe.....this is so overwhelming....but you can and will be the rock that helps your mom get through this.

Do you have other siblings that will help you?

I am so surprised that your radiologist would make that statement. If you have a chance to read other posts you will see that 5cm is a common number.

Please tell us what regimen she had on 2009...chemo, rads etc. It will help those that do a lot research on this site to know what advice to give. Not so much advice but direction for you to look at with your mom.

Since my experience with TNBC I have asked many health care professionals if they knew what it was. I have not found one...not one...who knew. The docs knew but not the nurses, mammo techs, ultra sound techs had a clue.

You are wonderful daughter and your mom is blessed to have you. There are so many that are fighting this monster alone.

We have a Spiritual Support thread here that you might find useful with that part of this journey. We will pray for your mom, you and the other family members, as well as the doctors that will be caring for her.

If I can be of any assistance, please don't hesitate to ask, either here or by Private Message.

Love and Prayers,

Carol

This must be very hard for you. There are several family members here who are going thru' or have gone thru' some similar times. Please do take a second opinion. www.nccn.org is a good website to find an NCCN certified cancer center.

 

I want to weep I'm so thankful for your help and encouraging words. You have lifted me up this weekend and I am so grateful.