Metastatic Triple Negative Breast Cancer Discussion Group: FEAR of Disease Progression

[dandrews]

Hi Everyone,

Our first Metastatic Triple Negative Breast Cancer Video/Phone Discussion Group will be Thursday, September 6th at 1:30 pm EST. The topic is Fear of Disease Progression.

Connect with different women with metastatic triple negative breast cancer as they discuss topics associated with this challenging diagnosis. The topics range from the fear of disease progression to the lack of viable treatment options. Join for the opportunity to share your experiences with women who have a similar understanding.

Topic: Fear of Disease Progression

If you are interested please register at:

bit.ly/TNBCMETS

[BeautyThroughBeast]

Well the metastatic TNBC cells roaming in my body decided to spread to my brain - a new .5mm tutor. I'll be having gamma knife at Columbia in a little over a week. At first I thought "it's just a zap." I'm going through the stages of grief now, processing. Not fun. Grateful that gamma knife exists. I feel like eI'km living on borrowed time.

[PrestonParker in reply to BeautyThroughBeast]

I am newly diagnosed with metastatic TNBC. I find it a very scary place to be. Doesn’t seem like there are many in this boat. I am currently on a PARP inhibitor as I am BRCA1+. I’m sorry to hear you have progressed. Sending only positive thoughts to you.

[Bailey3266]

I’m not triple beg; but I also have that same feeling. I do try to put that feeling to good use in trying to eliminate baggage from my life and focus on positives and doing all those things on my bucket list over past 13 months since my stage 4 DX. I’ve been traveling and enjoying my kids; but not a day goes by where I don’t think about what I’ll miss out on—I just push the thoughts away and get on with living as best I can and doing the most I can with my life! I’ll admit I definitely grieved (I think there are 5 stages); everyone gets through this in their own way. I cashed out a retirement (with hefty penalties) & off we went on 12/26 to Hawaii! It was good medicine for all 4 of us! Also invited formerly estranged brother to my house for Xmas—along with his children & 2 other brothers & their children spouses etc! We had so much fun we are doing it again this year! So, sometimes a lot of good comes outta bad! This board and BreastVa.org forums (there is specific one for Mets, triple neg, drugs, laughter, etc. good luck and I also thank goodness for my “borrowed time” and for your surgery—sounds like that’s the best place for that option. You’ll be in my thoughts and prayers!

[BeautyThroughBeast in reply to Bailey3266]

Bailey so nice of you to reply, thank you. Your trip to Hawaii with family sounds amazing, so does the holiday dinner. I'm glad you are turning it around.

I'm jut not feeling it recently. Every time I have a progression I feel slapped in the face, I felt scared and become depressed for a while. It's a reminder the dance I'm dong with death, some inside beast that is trying to eat me from the inside out, and it's like Russian roulette.

[Hidden in reply to Bailey3266]

Bailey, thanks for the reminder of the importance of getting as much good life as possible out of our lives!

What also caught my eye was you mentioning that you paid a hefty penalty on your retirement fund withdrawal....Since we have metastatic disease we are able to withdraw from 401k or IRA without paying the 10% penalty (still have to pay normal income taxes...).

Depending on how much that was, i.e. is it worth the trouble, you might want to revisit this....maybe you can get another great vacation out of the refund!

[Survivornow]

I've had 2 Oncologist tell me triple negative breast cancer is now easier to treat and possibly cure than my HER 2 - cancer! But that controlling, stopping further progression and possible cures are just around the corner!

[Hidden in reply to Survivornow]

That would be wonderful for you! Just think of Judy Perkins. She was cured of metastatic breast cancer. I think hers was triple negative. Are you being treated with immunotherapy?

Sophie x

[Survivornow in reply to Hidden]

My Oncologist says with HER2- IV chemotherapy does not work. Of course the meds I take are considered a type of chemotherapy. Tried Verzenio, but it literally almost killed me with GI complications. Ibrance is my new drug and has much less side effects.