Topic: Long term survivor examples.

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM by banr

Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM 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!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Mar 28, 2014 12:22PM Nettie1964 wrote:

I was just wondering if any of you long term survivors could tell me if you had odd aches and pains in the months to a year following treatment!  I am having a really hard time convincing myself that I'm cancer free due to on going aches in my back and now my lower arm!  Just wondering when I might expect these to go away and let me live my life!

Just want to clarify here that I did NOT have two dx! Just once I was done with chemo, the MO said I was 2% ER+! No longer taking Aromasin Surgery 12/11/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 12/12/2012, IDC, Stage IIB, Grade 3, 0/1 nodes, ER-/PR-, HER2- Chemotherapy 3/13/2013 AC + T (Taxol) Dx 8/12/2013, IDC, 4cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR-, HER2- Radiation Therapy 8/24/2013 Breast, Lymph nodes
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Mar 28, 2014 01:17PM Lettinggo wrote:

Thank you, Lintrollerd!

I choose to empower myself with Divine Love and Protection and let go of fear, helplessness and hopelessness Dx 1/7/2014, IDC, 2cm, Stage II, Grade 3, ER-/PR-, HER2-
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Mar 29, 2014 04:24PM maywin wrote:

Yes, I have had some aches and pains in the years following treatment. My neck bothers me and I have stiffness in my legs and back. But it may be getting older.. I haven't changed my lifestyle that much since diagnosed. I always ate low fat,exercised, was thin, etc. If anything, I ate more junk after being diagnosed! But I continue to exercise at least 30 min. a day.

Dx 2/25/2003, IDC, Right, 2cm, Stage IIB, Grade 3, 0/14 nodes, ER-/PR-, HER2-
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Mar 30, 2014 03:28AM banr wrote:

Tomorrow i will be going to meet my onc. I have this funny pain on my finger knuckles since past 1 week....not too much but a lingering discomfort. My rads are on too.. Radiation therapist says it has nothing to do with rads. Will have to investigate this now.

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Apr 2, 2014 06:38AM Luah wrote:

I had a number of aches and pains in the 12 to 18 months following treatment. Some were just muscle aches that I probably wouldn't have thought twice about before BC. During that time I ended up having 2 scans (bone and neck CT), both came back negative. The rule of thumb with my doc is that I should see her for any pain that is unexplained and doesn't clear after 2 weeks.  

We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10 Dx 9/14/2009, IDC, 2cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Apr 2, 2014 09:52AM lintrollerderby wrote:

You're very welcome, Lettinggo!

I definitely have residual pain from treatment. I'm still in pain management for treatment of symptoms that began during my first round of chemo. I'm now 37 and have the stiffness and joints of someone 30 years older. I struggle daily with the effects of chemotherapy and pain is only one of the problems. I also have some neuropathy in my hands and feet, skin/nerve sensitivities, mild hearing loss, debilitating fatigue, decreased visual acuity, and difficulty concentrating. Chemo was the gift that kept giving for me. I'm afraid that because I have daily pain, I wouldn't immediately recognize something if it were wrong. When I moved the year after treatment and met my new MO, on the first visit, I explained my ongoing issues to her. Without looking at my chart, she asked if I'd had a taxane and I said yes. She answered, "it's important stuff, but it's known to cause long term or permanent damage to people." She even told me that when a patient's cancer doesn't look to absolutely require its usage, she tries to find an alternate chemo for them to take. She said that for many of us, the risk/benefit ratio means we should have it anyway, but she stated that more and more MOs are cognizant that it has some serious implications. Sigh...

Diagnosed at age 34 on 11 May 2011 • IDC • Right • 1.3 cm • Stage I • Grade 3 • 0/3 nodes • ER-/PR-/HER2- • Triple Negative and Basal-Like • Ki-67: 76% • P53: 64% • BRCA1+ (no family history) • BRCA1 mutation: IVS5-11T>G (known deleterious mutation) Surgery 4/27/2011 Lumpectomy: Right Surgery 5/30/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/22/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 2, 2014 06:03PM joannnc wrote:

I very rarely come to this site anymore but in 2003 this website was my lifeline.  I am now 11 years out.  I was stage 11B, two tumors: 1.7 and 1.8 centimeters, one positive lymph node.  I had four rounds of Adriamycin/Cytoxan every other week and then four rounds of Taxol every other week. After a lumpectomy and node dissection I had 31 radiation treatments.  I was 54 when diagnosed.  There are many long-term survivors of triple negative breast cancer.  I am pleased to say that I was glad not to have to take medication afterwards as so many ladies complain of the side effects.


Love to All. 

JoAnn Dx 3/17/2003, IDC, 3cm, Stage IIB, Grade 3, 1/22 nodes, ER-/PR-, HER2-
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Apr 3, 2014 07:42AM pattypoo53 wrote:

I was diagnosed on Dec.15, 2003, 10 years out! Mammogram and ultrasound, needle biopsy. Pathology Stage IIA, 2.5 cm. tumor, no lymphnodes involved, triple negative, atypical medullary, lumpectomy. 6 months of chemotherapy 4AC every 3 weeks and 4 taxol every 3 weeks then 6 weeks of radiation. I used to come here a lot for support and looking for long term survivors of triple negative breast cancer, this is a wonderful website. It has been a long journey for me but I am doing great! I think for myself the emotional part is the hardest, even though my doc says I am cured, I am still guarded. But I have gone on with my life, I am working and taking one day at a time, that's all we can do. There is hope! Hugs to all of you!

Dx 12/15/2003, IDC, Left, 2cm, Stage IIA, Grade 3, 0/28 nodes, ER-/PR-, HER2-
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Apr 8, 2014 03:30PM banr wrote:

hi !!

so good to hear from you patty and joan! congratulations and a big hug..i hope we all reach there, where you both are...far away from the fight and moved on so wonderfully ahead! pls be in touch!

lint, luah, nettie and may: my MO told the same. In all likelihood it is because of taxol. i finished my last taxol in feb, so till may or june, all these side effects could be because of that. 

I really hope that taxol is the culprit. however, its strange that i never had joint pain or bone pain during taxol, it was mostly burning and itching. Then how is it that this fresh new side effect comes up 3 weeks after my taxols are over. I will definitely insist for a bone scan if this doesnt go away in another month. 

and as always..every new post of a long term TNBC survivor is such an inspiration!! 

lots of love to everybody..together we will make it!!

Theory of randomness...so unfair! Dx 9/12/2013, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2- Surgery 9/30/2013 Lumpectomy; Lumpectomy (Right) Chemotherapy 11/5/2013 AC + T (Taxol) Radiation Therapy 3/10/2014
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Apr 17, 2014 05:21PM jramick wrote:

Hi Ladies!

I am so glad that we have this site to share our experiences!  This July I will be a 5 year survivor of TN.  I chose lumpectomy and had the 4 cytoxan/taxotere and 33 rad treatments. When my lumpectomy was performed I was lucky to have total pathological response from our nasty friend chemo. It killed all the cancer cells. Yay!

While I have had some health issues after treatment,  I now understand how life goes on and the fears and anxiety lessen significantly. That is not to say that I do not fear recurrence and a change in stage status - I do.  It's just important to insist on getting checked and tested  for any new issues that come up.

I have learned that I have to live for today and making it through the craziness bc throws our way only gives us strength for tomorrow.  Keep your chins up everyone! Triple negative/ bc in general no matter what stage is not a death sentence.  We are not numbers, percentages, stages, we are human beings.  With love and support we accomplish much!

Dx 7/2009, IDC, Left, 2cm, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2-

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