3+ Year Survivor Stories PLEASE!
I read about Twink today and I can't stop crying. All you wonderful survivors please tell us about yourselves. I want to sort through all the threads to find you but I feel like I can't risk reading anything else sad. I need to get it together and stop crying. Please you wonderful survivors...tell us about all your positive nodes, etc and yet you are here.
-Meg
Comments
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I am currently goig through chemo, but I have many friends who are 3 years and beyond and are doing fantastic w/ NED. These women were dx before age 40 at various stages and many were TN. They inspire me every day, and have been a great support system. There are many women out there I just don't think many of them participate in these boards.
Looking at your date of dx you can celebrate being a year past dx...that's fantastic!
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Thank you Melissa, do you know when they talk about we triple negs having most recurrances within 3 years are they talking about 3 years from diagnosis or 3 years from end of treatment?
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Hi Meggy, now thats an interesting question isn't it. I have heard both. I was diagnosised on 11/28/2007 but I had surgery 12/11/2007....but I finished all treatment in 11/2008. I count from surgery, from when I know they took it out. I think its really a personal preference, for the doctors too. My doc counts from diagnoses but I know others that dont.
Teresa
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My onc said to count from date of dx.
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An ex boyfriend of mine..his mom was diagnosed Dec 31 2004. So she is on her 5th year!!!
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Hi Meggy... this 9/5/09 it w/ be six years for me!
I was diagnosed at age 36, my daughter had just turned 8!
(((((((((((((((((((Hugs))))))))))))))))))))
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Stage IIA triple neg, diagnosed at age 38. Will be 6 years out on 5/12/09!
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Hi Everyone,
I am very pleased to share that my 4 year mammogram came back clear - whoo-hoo! I was so nervous and now I feel great!!!!
Take care everybody!!
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Well, I've had two triple-neg tumors. Left breast had medullary in 2005 and right breast had IDC in 2007. So half of me celebrated three years of survival in the fall of 2008 and the other half of me will celebrate three years of survival in the spring of 2010.
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Chumfry
We match I also have had 2 tripleneg tumors. Left Breast had Medullary in Jan 1997 and IDC in right breast in July 2006. So half of me is just over 12 years and the other nearly 3 years.
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Hi Girls,I was dx Dec '03 and am plain sailing it.You'll probably see my details below so I've no need to go into them,but there was so much vascular invasion it was expected back before the end of chemo!! My good luck to you all,xx
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Hi All,
I am Patty dignosed Dec 03. Triple Negative, atypical medullery but my onc treated it as an IDC. See my profile for more info. I am over five years out doing great. hang in there.
Hugs
Patty
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I am nearing my three-year mark--one month away. I had a lumpectomy, four rounds of AC, and 33 rads. I work hard to keep my weight down, as research shows that helps with hormone-negative. I also exercise; limit my alcohol; have a daily hand-pressed juice of kale, carrots, parsley, cabbage, and apples (lots of antioxidants and cancer-fighting cruciferous veggies); and pray. My original prognosis was good--a small tumor (1.1 cm), negative nodes, and clear margins in surgery. Still, I worry. It is natural. That's where prayer helps--and yoga. I also blog about this at hormonenegative.blogspot.com. Good luck to you, and enjoy the marvelous survivor stories.
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Positiveaboutnegative
If you are PR +, then you are not Triple Negative, is it correct? Or was your PR only very little +?
Did you have any family history?
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AHEM: 10 years later and counting! I am so old when they told me I was TriNeg, I said, "Oh really, how nice!"
They didn't know a thing about it.
Don't worry too much.
Gentle hugs, Shirlann
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Newalex: I am sort of a mixed bird. I am weakly positive for PR. Various oncologists have interpreted this differently. One said it meant I was negative, another said it meant I was positive. Ugh. A researcher said that cases like mine are often classified in studies as positive. This is one of the many confusing aspects of this disease and how doctors deal with it. My pathology report was not as complete as it should have been--a fact I learned after I started questioning and doing research on my own. I suggest that those who are newly diagnosed get as much information about their tumors as they can as soon as possible. Pat [www.hormonenegative.blogspot.com]
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Pat- I was curious about that too because I am also weakly PR positive. My BS must consider me triple neg because we have discussed the fact that I was. I am curious to see what my oncologist says when I meet him next week. Very confusing. I have been gathering all my reports so I can see exactly what is going on, but I forgot to ask for a copy of my surgery pathology. Duh! Groggy I guess. LOL I will have to back track and get that one for my own knowledge.
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Well, I'm not a 3 year survivor but, I'm planning on it. I was just diagnosised in November. Thank God the mammogram caught it early. Yay, for routine mammograms. I had one sentinel lymph node removed and it was negative. Yay! My margins were clean. Yay!. I am triple negative. Boo.
I've just completed my six rounds of TIC chemo. Not pleasant but not as bad as I feared. I'll start radiation in May. My first Mammogram post surgery is Monday. I'm feeling pretty good about things. I'm sure I'll be nervous with each of my checks for the next three years. But, hey, cure rate is high if we make it past that ear mark. You're a bit ahead of me so do keep in touch.
I like hear survivor stories too. I read one writer who said she wanted to hear stories about survivors who lived to be 90 and died sky diving. I'll control what I can and turn the rest over to God. He has a plan and I'll live the best that I can for as long as I can.
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Hi I was just wondering something...in the middle of the night because I dont sleep lol. But is anyone ever just PR+ only? and if they are what kind of treatment do they get? Do they take tomoxifin too? Just curious
Teresa
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Teresa:
About five percent of BC cases are ER- and PR+. (I am trying to find the source of that stat, but it was a research study I uncovered when I was diagnosed in 2006.) Researchers are mixed on whether tamoxifen helps in those cases or not. Some say that tamoxifen should be used if there is even a tiny percentage of ER or PR present. Given that I had early stage, negative lymph nodes, and was weakly positive for PR, I did not do tamoxifen. I do eat a lot of cruciferous vegetables which, in some studies, were should to have effects similar to tamoxifen. I have a couple of posts on this.
The one on tamoxifen is http://hormonenegative.blogspot.com/2008/01/can-tamoxifen-help-hormone-receptor.html. As you will see if you read it, there is no clear consensus.
The one on cruciferous veggies and BC is at http://hormonenegative.blogspot.com/2008/01/rah-raw-broccoli.html.
And I am sorry you are not sleeping. Do you take melatonin? It helps me and it also has been shown to prevent BC, although it is more effective for positive, but what the heck, I am up for avoiding that too.
Pat
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I am a trip neg survivor of almost 5 yrs. I was diagnosed in Nov of 04 had a mas with tram recon and four rounds AC chem and have been cancer free since.
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Hi Cathy Labgal
So encouraging to know your story. How big was your tumor and did they take any node out? Did you have family history and rads?
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positiveaboutnegative,
I am like you -- weakly positive for PR. I agree we are the unusual ones, and like you, I was quite confused/annoyed by the varying interpretations by the doctors. Sometimes Tri Neg, sometimes not.
Congrats to all the 3+ year survivors. My mother is 13 years NED.
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Hi, I am still here. I have had two primary tumors. One each breast. Last one 2003, May.
When I had bc the first time in 1992, the only women I wanted to see were longtime survivors. I craved to hear them and see them. Talking about their lives that they lived past bc. It was wonderful to me to be around them. I joined groups that would present women who had bc and were still alive. I thought I would never live. But seeing them was medicine to my soul. Cry your eyes out and then rebuild. Fill yourself with all the positive women who are still here. To this day, I still look for women who are thirty years, twenty-five years, etc. beyond their discovery date. They give me hope. MG
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My mom's best friend died of old age at 94, 49 years post double mast, & TriNeg. She kept me going.
Gentle hugs, Shirlann
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Shirlann
How did she know she was Tri Neg 49 yrs ago? Did she get any chemo?
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22 year survivor here....first time 1987 TN,left breast,idc, grade 3,no nodes, just lumpectomy and radiation for 5 weeks, no chemo. Second time to the right breast in 2003, went for bi-lateral, stage 2 and did not have chemo, because I am a stuburn Italian, and said no nodes and 16 years ago with no nodes they did not do chemo. Again I was TN, grade 3, stage 2 becauce tumor was 2c, this time I was a-typical medulary, clear margins no nodes. Just 6 years ago there was no mention of Triple Negative. It was not till my 34 year old daughter was diagnosed 7 months after me, that a red flag was raised. I came to these boards and read all that I could. By the way I'm 62 years old and just got a computer today,so that is why I was never able to respond to tell you my wonderful story of survival and thriving. My dear daughter had breast cancer in both her breasts, 5 years ago in May. she was stage one, tn in one breast and lobular in the other breast that had microscopic invasion. The TN tumor was 1.6c.with clear margins and no nodes, grade 111, and you bet I told her she needs chemo. She had 4 ac but did not have the taxol. She is doing wonderful...We are both doing wonderful. When I was diagnosed I was told by my surgeon, i did not need to see and oncologist because I know longer had cancer. So off I went and never turned back. I did get involved with a support group and met alot of wonderful women that I still stay in contact with. Still all alive and well. So many wonderful stories to tell. I wish I could of responded to you sooner, but i tell you not many of us long time survivors come to these boards. We go on to live our lives.
When my daughter was diagnosed I must tell you, I was devestated. It was then that I realized that this is really serious stuff...It was awful but with my deep faith in God and learning to put all my pain in His hands and to learn to Trust in Him I was able to go on.
For you stage 4 girls, back 22 years ago I became very friendly with one of the girls in our support group who was diagnosed with state 4 from the beginning, cancer threw-out. She lived the most amazing 15 years. She was my rock. and that was 22 yars ago. She was treated with, at that time the new miracle drug, tamoxifin and remained cancer free for 15years and healthy active 15 years.
Two women stage 3, one a neighbor, think she was Tn as she only had chemo but for one year, well that was 34 years ago. Another stage 3, who worked with reach for recovery, was a young women when she was diagnoses and is now 83. I met her 22 years ago and she at that time had quite a story to tell and was then out many years, well she is alive today and looks 70.
Hope this helps and believe me I can go on and on with many more survival stories. Remember the ones who post here are looking for answers and support. I am so sorry that it took me 5 years before I posted. I was a lurker for all those years since my daughter was diagnosed but did it from my work computer and could not respond. I hope I am here for you now. I have learned to love all of you and you have all been in my prayers.
Remember "THIS IS THE DAY THE LORD HAS MADE LET US REJOICE AND BE GLAD IN IT" May God Bless all of you.... -
nonijones333
thanks so much for the stories and they give us hope. Pls come to post more and we need you here.
Was you the first one in your family get BC? Did you and your daugter ever did genetic testing?
Hope to hear from you. alex
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Oh my God...I needed to find this forum soo badly. I was diagnosed as Stage II, triple negative on April 22 and I have been freaking out about it ever since. I have so many questions about being triple negative that I don't know where to begin. I'll toss some out there and if anyone knows an answer, I'd love to hear from you.
First of all, what's this I read that in some reports you can be trip. neg. and not on others...should we run the test twice to confirm?
If you are a triple neg, and have a mastectomy, will future tumors (anywhere in the body) automatically be trip neg. (once a triple neg. = always a triple negative? )
Does being triple negative decrease our survival rate by Stage? (For example, I'm Stage and the 5-year survival rate is 92% - does that go down due to being a triple neg? ) And by the way, why is it alway given as a 5 year survival rate...what happens after 5 years?
Well, that's enough to get started. I'd love to hear from anyone who can shed some light on this condition as well as those positive stories of survival.
Janet
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Hi Janet,
Yes, cancer is alot more complicated than us lay people realize until we are faced with it ourselves. I was stage I. If I had been ER+ my cure rate with lumpectomy, radiation and Taxoxifen would have been in excess of 96%. As a triple negative the pills do not work. Lumpectomy and radiation alone would have dropped my cure rate to 70 - 75%. With chemo my cure rate goes back up to 80 - 85%. The fear is that little cells of the Triple negative will be floating around waiting to start growing in soft tissues somewhere. That gives me chills to write or think about. The chemo is supposed to kill off those little suckers. Post chemo we can reduce our chances of recurrance by 50% by eating a healthy mostly vegetable and fruit based diet, maintaining a lean body weight and getting regular vigorous exercise. The scarry thing is that Triple negative if it is going to come back usually comes back within the first two to three years. That is why you see people on theTN site celebrating their 3 year anniversary. You see if it doesn't show it's ugly head within the 3 year time period chances of it ever showing up again are very slim. Other cancers are slower growing and thus the 5 years they discuss. It's sobbering news but you found a great site to get support.
God Bless
Deb
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