Posted on: Dec 17, 2013 01:46AM - edited Dec 17, 2013 01:53AM by banr
Posted on: Dec 17, 2013 01:46AM - edited Dec 17, 2013 01:53AM by banr
banr wrote:
Just an idea came across my mind.
Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.
But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.
I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.
One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.
One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.
I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.
If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.
Love u all!!
Dec 18, 2013 12:35PM NadJan wrote:
Not only would I like to hear from long-term survivors, but I can't seem to find any triple negative info on after-care. I am almost two years out and my doctor doesn't want me to have a mammogram every six months. Once a year is common? I am very curious about that. Thanks
Dec 19, 2013 01:29AM banr wrote:
NadJan: for me the doc says, the first 2 years follow up every 3 months, then from 3rd to 5th year follow up every 6 months. after 5 years i guess its once in 6 months or 1 year. why dont you ask an ulltrasound every 6 months..its safer than mammogram.
Dec 19, 2013 04:31AM bak94 wrote:
Well, I was first diagnosed with stage 2b triple negative in December of 2002, so I am an 11 year survivor of that one:) Unfortunately I had a new cancer pop up in my opposite breast in April 2011, stage 3C and I am out over 2 years for that one. I was 36 with my first diagnoses. My advice is to make sure you have the brca testing done, and if you are positive, think long and hard about having a bmx. If I had done that the first time, I may have not gone through what I did the second time. Oh, and I was being watched closely, but insurance had decided to not pay for my breast mri's after five years of them.
If you are young or even if you are not young, and have dense breast, make sure you are doing more than a mammogram for follow up. My lump was almost missed this last time and I was at stage 3 already! The doc said it was fine, but then for some reason he decided to look again and called me back in as I was leaving the parking lot. Well, there was something there.
There are many survivors out there! They are out and about enjoying life. Some of them will stop by here and leave a note, and we so appreciate those notes!
Dec 19, 2013 09:37AM banr wrote:
Wonderful to hear from you bak94! Inspite of being hormone negative and brca positive, your cancer didnot recur for 11 long years!!! wow!
and thanks for your advice on getting the brca test done. My Brca results are out and its negative for brca 1 and for brca2, they saw 4 mutations which they say is no no clinical relevance ( not too sure what it means, but my oncologist considers it negative for now)
all the best for your follow ups and be in touch..
love
Dec 19, 2013 12:24PM TifJ wrote:
BanR- my BRCA 2 also came back with "a variant of unknown significance". My doctor also considers it negative. Your variance will remain in a database and should that variance ever start showing up with regularity in others diagnosed, your doctor will be contacted. Kind of stinks that you know "something" is different, but may never know if it has played a role in your diagnosis!
Dec 19, 2013 06:15PM HHCats wrote:
I just found this thread. It is so good to hear about people who are long term survivors. I'm 14 months out and despite a plethora of good news (my doctor's words!) - I am still freaking out about a recurrence. I am trying to live my life and get on with it - I have three young kids 9, 6, and 6. I have to be here for them! Thank you again for posting your stories. It gives me hope.
Robin
Dec 19, 2013 08:17PM TifJ wrote:
NAdjan- I stopped getting mammo every 6 months at 2 years as well and now just have it once a year. I saw my new MO today (last one retired) and he now wants to see me every 6 months instead of every 4 months.
Dec 20, 2013 06:23PM blessings2011 wrote:
Not sure if this qualifies as a long-term survivor story or not, but here goes.
In October, we were out of town, and went to a grocery store late one night. The first thing I saw was a HUGE stack of Frito-Lay chips, in six-packs, all swathed in pink, saying they "support breast cancer research"...
DH and I looked everywhere for details on where the money went, and found nothing. So I called for the store manager.
When the woman came over to see me, I explained that while I knew she wasn't personally responsible for the display, there were hundreds of thousands of women who were fed up with the whole "pinkwashing" aspect of marketing products in October.
She absolutely stunned me when she said she understood and agreed. In fact, she told me she was an 11 year survivor, with a triple-negative dx.
She said that she tried to be the voice of reason when it came to such horrendous pink campaigns, and that she was generally ignored by big management. (It was a chain of stores.) We had the most incredible chat right there... DH wandered off to give us privacy... and she told me what she had been through in the beginning, and how she is coping now.
She has a stressful job, but it's a good one. She has good family support. Her only limitations are occasionally heavy lifting, and she can always find a stock person to assist. She is no longer receiving any treatment, and just checks in with her MO on an as-needed basis. Can't remember the details of her surgery, but she did have chemo, and now feels fine.
I told her about this board, and she said to please tell women that triple-negative patients do go on to have very normal lives.
Dec 21, 2013 02:31AM banr wrote:
Thanks Blessings20 for sharing this story ! It so nice to get inspired from women residing in different corners of the world, whom we have never seen or met. Your prognosis looks so nice too..hormone positive and her2 negative and stage 1..i guess you never needed any chemo at all..lucky!
TifJ: even you have those kind of mutations like me! i was reading that there can be upto 800 mutations in the brca2 gene and not all have been found to be clinically relevant as of now. I have a daughter..5 year old though. A little worried about her, specially with me getting breast cancer at 35 and these "unknown mutations". 2014 is round the corner, and i guess you will complete 4 years, isnt it!
HHcats: My chemo is on now and when all this is over, the fear of recurrence will come in. You are 14 months out...10 more months and you cross the first 2 year hurdle and very soon even you will join the long term survivor list!! My onco decided to postpone my 4th AC chemo by 6 days and at a 10 percent reduced dose!! i just wonder if it will trigger a recurrence for me.
wish you all and bak94 and nadjan, a merry christmas and a very happy and healthy 2014! This festive season i will mostly be in and out of hospital... sigh!!!
Dec 21, 2013 04:11PM TifJ wrote:
BanR- I have an 8 year old daughter (she was 5 at my diagnosis), so I sure understand the fear for your daughter. The new MO I saw Thursday wants to check with the genetic Dr. that did my original BRCA test. He says there have been improvements to the test and he wants to know if I should be tested again. I doubt my insurance would pay for it, but it would certainly be interesting to see if the results change- for the better or worse.
