Long term survivor examples.
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Hi
Just checking in….I'm now 8 years out from dx/surgery/tx with Adria+Cytoxin and external beam radiation.
I live my life best I can but honestly I'm aware that things could change regardless of how many years out I am. I think once you're dx'd you have a tendency to look over your shoulder. Also I say be your own best advocate, read up and stay informed. Best to all!
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BanR, sorry I missed your post to me until just now! You know what, I don't know how my aunt knows it was TN. I'll have to ask her. I didn't even realize they didn't do the testing back then. Maybe it was her recurrence that was TN? Like I said, she doesn't remember all the specifics, but she was adamant about the TN fact. I'm curious now myself!
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I know of a lady who is a 10+ year TNBC survivor, diagnosis was 1.5 cm and within 3 weeks it went to 6 cm while they were reviewing treatment options. She was stage 3 with 11/13 nodes positive. She does yoga, low fat and healthy eating.
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Hi- I'm eleven years out!! You don't hear from us long term survivors because after five years or so, we don't check back in very much! I make a special point to come by once in a while to say hello. Otherwise, I'm out living my Life
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Thank you Maywin, you are an inspiration! I plan on the same for myself, live my life.
My cousin, who is a cancer survivor tells me I'm in the PTSD stage. . .last chemo was 2/10.
Carol
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This year will be 10th year surviving triple negative BC. This is my first post here. It was too hard to frequent these forums when I was first diagnosed. Life is good! Hang in there.
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Jan and May, thanks for stopping in and giving many such hope and inspiration! I am hoping to do the same for others throughout the years.
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Thanks ladies for sharing your stories!!
I wonder what lifestyle changes you made post your treatments. Do share..
I for one, have been always high in Soya, Vegetables, Fruits and Exercise ( alcohol, cigarettes etc a complete No, very low in meat, hardly consume junk or pre processed food and never had any hormonal supplements) and I really am confused what else should I do post treatment. Will be cutting down on milk products and eliminating the 1 cup coffee I used to have. Nothing else I can think of..and yes, take life easy and eliminate stress etc
Ally: Along with BRCA you have also inherited the fighting spirit from her. I am sure you are going to do very well..
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Thank you all ladies again for the inspirational posts. BanR, Has anyone tried raw food and juicing? I have always been high on veggies, fruits and exercises too. also can someone please tell me what 0/3 lymph nodes mean? Thank you all!
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Lettinggo: that would mean 3 lymph nodes were biopsied and zero were found to have cancer.
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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!
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Thank you, Lintrollerd!
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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.
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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.
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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.
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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...
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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.
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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!
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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!!
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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!
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I am checking in after several years. BCO was my lifeline when I was first diagnosed. I was dx in 2002. 6 months later my daughter was dx. It was a very trying time. I was dx with uterine cancer in late 2012. It was very early stage so no chemo or rads. Just 3 month checks for a few years. My daughter had a baby in 2012. We call him our miracle baby since she is also a childhood survivor or leukemia. I am triple neg. Found my tumor 3 months after a clear mammo. Ultrasound confirmed the 2.1 cm lump I found. Surgery (Lumpectomy), lymph node dissection (0 /14), chemo (4a/c) and rads. I was tested for BRCA 1 & 2 and found to be neg. I still see my oncologist every year at Stanford. I am very blessed to be 12 years out. I turned my treatment over to the experts and concentrated on getting well. I had my first grandchild right after I was dx and she kept me going. I now have 6 grand kids and they are my joys. I wish you all the very best and hope my story in encouraging to you.
Kathy
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hey kathy and jramick
thank you for sharing your stories!
jramick: did they give you neo adjuvant chemo?
kathy: so happy that you are 12 years out and now a proud grandmom of 6 children. I wish you, your daughter and your grandchildren good health.
love to all!!
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Hi Ban!
Yes! I had neo adjuvant chemo! Lumpectomy came after and that was when no cancer cells left was discovered. It makes those of us who fear chem realize that in the end it is worth it. By the way, my hair has grown all the way past my shoulder blades in'less than 5 years! I remember the days during chemo that I would look into the mirror and cry. Not because I had no hair but because I was trying to find MYSELF somewhere, anywhere. I did not FEEL like myself or look like myself (even in the face which was from chemo). As with most things in life, it is temporary. You WILL feel it and see it again! I just kept reminding myself of that and it also helped to find that support from my cousin, a bc survivor and inspiration to me.
I also qualified for the zometa clinical trial but was having jaw bone issues which disqualified me for it at tail end. Ladies, ask your onc about this drug which is a biophosonate (sp?) which strengthens bones similar to arthritis drug boniva. It is a drug administered once a month by IV for a year I believe. Researchers think that breast cancer starts from nasty bone cells which spread to the "girls". Therefore zometa is thought to attack the cells before cancer can start.
Be good to yourselves, there is hope for all of us!
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thanks jramick for the information...will talk to my oncologist about it.
hugs to everybody!!
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thank you all for the updates, your stories are so inspirational! I'm so scared of the cancer returning, I'm 2 1/2 months from last treatment. I feel aches still, back & legs, especially if I sit too long. I've got vertigo too, so yoga is out for now. I'm having some trouble concentrating too.
But, I do feel good, I feel stronger & way more energetic!
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Loved reading this thread. My wife was diagnosed last year with TNBC, and while we have a great prognosis, it's still terrifying. The tumor was 2.1 centimeters (so close to stage 1 grrrrrr), no nodes, it took only six weeks from the day she first felt the lump to the day she had her surgery and she kept most of her breast, then radiation and chemo to make sure no leftovers were left alive because she's young (31), the thing was triple negative and grade 3, and she was most likely a BRCA1 carrier to get such an aggressive tumor at such an early age (which was confirmed). So we have a lot to be thankful for (other than, you know, cancer and a gene that will make her face hard choices in a few years) and I try to focus on that as much as possible, but it's hard not to freak out sometimes. Hearing actual survivors stories always helps me calm down.
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I'm a 3+year survivor of this TNBC. Too old to be BRCA tested. Happy to be alive.
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Just wanted to add another story here.
I was diagnosed in 2002 at 32 and I'ma still kickin!! TNBC tumor and very aggressive can you say 0 to 2.5 cms in less than 3 weeks.(I was always the over achiever) I also tested positive for BRCA1 in 2004 so have been doing a higher boob surveillance but not much else since then.
A note to those just finishing treatment. It is hard when for a long time you are being watched like a hawk and then its like "okay you are all done" and you are then booted out into the world again. It DOES get better.
It will take you a little while to get to your new normal and not be scared that the new aches and pains are not a sign of new troubles. The chemo regime is tough on our bodies and it takes a loooooong time for it to be completely out of your system. I still get aches an pains now and then but I think I just have to get used to the fact that I am getting older. (eeek)
Yes, I have had scares I am not going to lie to you, but don't let it rule your life.
Someone told me the following and I have tried to live it out and it does help.
You can spend the rest of your life waiting for the cancer shoe to drop and waste all that time worrying when you could have been living your life OR you can live your life and IF the shoe drops then you can deal with it.
If something pops up and it doesn't go away for a few weeks don't be afraid to get it checked out but don't let cancer rule your life.
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Thank you for starting this thread and for all who have posted. I was DX with TN in early January and am now going through chemo. I'm very happy to say that my chemo SEs have been very manageable for which I am so grateful. This is encouraging to all of us triple neg women as the information you get, especially when you are first diagnosed, is overwhelmingly negative. As someone else said, I'm sure there would be more long term triple negative posters, but they are happily leading their lives now and too busy to check in here. Love your advice Ozzygirl!
Take care all..
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