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Triple Negative..Breast Ca..2 yr Survivor
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Pipperlue posted:
I joined this community for the support and to offer mine as well..I am a 2 yr. Survivor of triple neg breast ca. and hoping to find others who had or have the same type..I don't completely understand it other than it is an aggressive type..? Any advice ,,tips..?
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rachael67 responded:
Welcome, Pipper...We always are glad to have folks who will offer their support! Yours will be most appreciated.

We have quite a few ladies who are dealing with/have dealt with triple negative cancer. I am sure you will hear form them soon.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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HelenC123 responded:
Hi- I am also a 2 year survivor of triple negative BC. there is a lot of information online on www.tnbcfoundation.org
you may find this helpful. i went through neo adjuvant chemo, then surgery, then radiation, then physical therapy etc. I do have a lot of lingering effects from some of the clinical trial drugs i was given. the advice i can give you is to not lose hope, read, read, and read more online as much as possible. i found it helpful to learn as much as i could. You are Number 1. Never lose hope. Maintain a balance in your life for example stress is not healthy for any cancer survivor. eat well, stay away from sugar and meats. Even when you read about how aggressive the cancer is, never lose hope because i believe lots of people survive this.
 
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vajanie replied to HelenC123's response:
Hi,

Welcome and am pleased that you've come here. I too have triple negative bc but cannot offer much as I'm in the middle of treatment now. My oncologist is the head of the survivorship program where I have treatment and I have faith that he really wants me to get well and give no indication that he thinks otherwise. I wish continuing good health for you.

All the best,
Janie
 
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prinlinda responded:
Hello Pipperlue,

I am a three year survivor of TNBC.I was age 61 and diagnosed at Stage 1, grade 2, no lymph involvement. I opted for a double masectomyand reconstruction. I received four rounds of chemo-taxotere and cytoxin. I tolerated it very well.
TNBC can be scary, but the best advice I can offer is do not pay attention to all the negative info on internet. Dr. Google doesn't know everything! I researched and researched at first, then decided it made me depressed and after much thought I came to the conclusion based on reliable facts that TNBC is not a death sentence and Iam going to carry on with my life with the realization that NONE of us know when we will die from one day to the next.
I am blessed. I retired from education after 40 years as a teacher and principal. I lead a very active lifestyle and am trying to lose weight that I gained during chemo.
Insist with your doctors that you want surveillance even after you have reached the point where they release you from returning every 3-6 months for bloodwork and exams.
It is my understanding that after those of us with TNBC pass the 3-5 year of it not returning that we actually have better odds of it not returning than our sisters who have other sub types of breast cancer.
I don't buy into the pink promotions, but I do donate money. Personally, I do not want to be constantly reminded about the ordeal. I know many do not share my feelings about this and I respect that because many women need it, but I would rather lick my woundsprivately and move on and not be reminded of it on a commercial level.
Please don't think I am callous, I just choose to deal with in a different manner.
I wish you happiness and Ipray that you continue to do well and heal.

Sincerely,
Prinlinda
 
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GGrandmaJan replied to prinlinda's response:
Oh I agree with you totally. I was dx with a rare form of cancer directly caused from rad tx's done in '06 for bc.

I agree with you that not any of us have an expiration date stamped on our foot and if anyone tells you different run don't walk to another Dr. I share your comments about the "Pink" commercial aspects of bc. I detest Pink. To me it is also a reminder of all I have been thru and I do not need reminders in any way, shape or form.

Now my question is: How to insist a Dr does more surveilance on us than he is willing to do? Today it seems to always be the "bottom" line of expenses. My great and wonderful Onc Dr did not get his contract re-newed by the local hospitals and moved to another state. The one taking his place is now following the "Party line" of let's see how many pts we can get thru here in an hour.

I was highly disappointed in my appt on Monday. Basically he told me they were only going to do scans every year as my ca was so tiny and after all my breast was removed therefore I am cured. Then he stated they did not know that much about my cancer and each Dr had their own protocol in monitoring it. Boy oh Boy---he is wrong!!! The protocol is after dx they are to do PET/CT scans every 6 months for the next 3 years .IF any concerns pop up then CT scans of that area every 3 months once they isolate the problem. He basically told me they didn't know that much about angiosarcoma and HE was not going to research it. UGH. A real confidence builder, Right? I was totally miffed and wondered why I had wasted MY time.

Thank Heaven's, my old Onc Dr had sent me up to a very smart lung Dr. When I see him again in Dec I am definitely going to run all this by him and ask for his opinion. So I do have other options available to me and I am going to take full advantage of them. After all, It is my Life.

If you want to read more of my history please click on my profile pic and it will take you to my story.

Thanks for letting me vent. We have to be our own best advocate in this journey.
Hugs
Jan
He who laughs at himself--never runs out of things to laugh at!! by Me.


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