Long term survivor examples.
Comments
-
Made2b,
Are you sure some of what appears to be left isn't scar tissue? That is, it can appear that the tumor hasn't shrunk much, but really some of the tumor is dead cells killed by the chemo. They can't tell for sure until surgery/pathology what is still active cancer and what is not, although MRI and ultrasound can give some clues.
0 -
Please, are there any long term Triple Negative BC survivors with lumpectomy??? Really would love to know.
Thanks,
Sally
0 -
I'm not really long term since I'm just over 3 years out from diagnosis. I had an excisional biopsy because no one at all thought my lump was malignant, then when pathology came back that not only was it malignant but very aggressive, I didn't have clear margins. I had a re-excision to get good ones. I had 4 rounds of chemo and had some complications, so I went against medical advice and didn't have radiation. I found out a year later that I have a BRCA1 mutation, so then all of my doctors were saying it's probably good I declined radiation since I need a mastectomy because of the BRCA status. I have that surgery and my BSO coming up. My situation is a little different, but I had only a lumpectomy with chemo and so far I'm doing ok.
0 -
hi jramick, did you exercise during chemo? What exercises did you do? What was your diet during chemo and what chemo meds were you on?
0 -
I wanted to add that I am less than 3 years out from my last chemo and my hair is down to my waist. It's different than before chemo; it's still really curly, the texture is different, the color is not the same, and there's a bit more gray, but it grew back fast.
0 -
Today is the 7th anniversary of my cancer surgery! NED all these years! Very, very thankful!0 -
Alex, What fantastic news!!! Thank you for posting!!Paula
0 -
So many amazing TNBC survivors here!!! SO happy for all of you and wish you many many many more years of good health.
0 -
Placid, so good to hear from you. We missed you at the lunch the other day.
Did you have your SNB before the chemo? I had chemo first. I also had TNBC
I also had 4 sentinel nodes out too. Who is your plastic surgeon? I had chemo first like you and my blood count is so low that i just opted for a unilateral without recon. but am now thinking of removing the left breast and do recon on both breast. Don't know if it is still possible to do it on the breast that had the MX.
Look forward to meeting you at the next lunch. take care
Lyan
0 -
Lettingo,
Thanks! Hope to see you at one of the lunches soon. I had the SNB before chemo. My plastic surgeon is Dr. Nahabedian at georgetown. He will come to fairfax hospital if needed. I had a good experience with him. I have a little rippling on the non-radiated side, but I don't think that was him. I'm not sure about your recon. I don't think you can have an implant on a radiated side unless you did the expansion before radiation, but you could do flap? If no radiation was done, then maybe implant OR flap are options? Dr. Naha does both implant and flap, but is a real guru of DIEP flap.
0 -
Hi Placid thank you for the information. I had SNB after chemo and all 4 were clear. wished i had it done before the chemo. I have heard of your PS - very well know. take care, talk to you soon!
0 -
I can't call myself long term, just alive and well at five and a half years out. I was TNBC, stage IIB, four of 14 lymph nodes bad. Did surgery, 6 rounds of chemo, 7 weeks of daily radiation. Was wiped out for a year or two, though I worked through it all. Today, I walked 14 miles and feel great. It's not what knocks you down that matters. It's seeing to it that you pick yourself up, and then go forward to see a sunset or sunrise and enjoy the beauty of it. Then the next one, and so on.
0 -
"It's not what knocks you down that matters. It's seeing to it that you
pick yourself up, and then go forward to see a sunset or sunrise and
enjoy the beauty of it. Then the next one, and so on."yellowdoglady, I couldn't agree more. Love it!!
0 -
Yellowdoglady, Beautifully said!! Thank you for posting such a positive post and congratulations on reaching those TN important 3 and 5 year milestones! You have the right attitude - just put one foot in front of the other and you can walk those14 miles.
Paula
0 -
Yellowdoglady, thanks for posting! It's great to hear that someone with stage 2b is doing great 5.5 years later. Love it!
0 -
lintrollerd, thanks 3 years is still very encouraging, especially with lumpectomy. Wishing you all the best!!!
Salky
0 -
Thank you and all the best to you!
0 -
Thanks to all of you who have taken the time to share your stories and the stories of others - they are like a lifeline to me and my family. I am writing because I am desperately looking for stories that can bring my sister hope. She was diagnosed with Stage III b TNBC in January 2014 - her tumor was very large and aggressive and grew to almost 10 cm in a matter of a few months (she had a clean mammogram just a few months before her diagnosis in November 2013), and she had 2 out of 2 positive nodes at the time of diagnosis. She then had about 6 months of neoadjuvant chemotherapy (taxol + carboplatin/AC, switched to abraxane due to alergic rx to taxol, and then switched to erebulin (halavan) after her response to abraxane tapered off), and her double mastectomy was just a few weeks ago on July 15, 2014. She is recovering well, but is feeling very hopeless because the path report said that all 15 of the lymph nodes removed had evidence of disease. The good news is that the erebulin seemed to be very effective because her former 10 cm tumor shrank to 1.6 cm at its largest diameter. She has looked for survivors who have similar circumstances to hers and can't find any and is starting to feel like it is because no one with cancer as aggressive as hers is still alive. If any of you have stories to share about survivors who did not have a PCR at the time of surgery and who also had all or many positive nodes removed at the time of the mx, I would be so very grateful. Thanks in advance for your time...love and strength to all of you. Sincerely, Cara (Melinda's sister).
0 -
Hello,
My initial test showed I had HER2+ but after 4 rounds of AC and 4 of Taxotere with herceptin following a bi-lateral mastectomy, a retest showed I was actually triple negative. I am going to be starting radiation soon and will have my ovaries removed as well. I am also BRCA1+. It's good to read about all the survivors because as any one who has just "googled" tnbc it can be pretty scary out there. The chemo I had shrunk my tumor from almost 3cm to .4cm which the Dr said was a great response. Thanks for all the positive stories!
0 -
Yes! 10 years out - had stage 1C. I am married to a sweetheart of a guy for 4 years now and we are thinking of moving to somewhere warm. I have seen my kids graduate and move on happily with their lives. My husband said "now it is our turn to dance". I love that!
0 -
As the husband of a TNBC survivor who is NED just 16 months post diagnosis...I wish this form were like Facebook and had a "Like" button for all of these posts from long term survivors. In fact...there should be a "LOVE" button! Thank you all! I wish you all many many decades of continued good health!
0 -
Congratulations to all the long term TN survivors. I am also 6 years out from a 2b diagnosis. My details are on my profile. I am happy to still be here.(alive) However, the psychological effects have been hard for me. I know how hard it is for everyone, and no one will understand unless they have been through this battle themselves. So chin up all my BC sisters, Stay strong, fight hard, pray hard. Enjoy every beautiful day, for it is a gift.
Love to you all, xoxoxoxo
Shelly~
0 -
Yes! this Long Term Survivor of Triple Negative BC is music to my newly diagnosed frightened self! I see the surgeon tomorrow and although they say I would fare all right with a lumpectomy, I have dense breasts and really think I want a bilateral mastectomy. I don't know why I don't get to see an oncologist BEFORE making this decision.
0 -
Neeciek - My first appt after diagnosis was the surgeon too. But I went to the oncologist a couple days later and talked to both before making my surgery decision. Make sure you get your questions answered and you make the best decision for you. I understand what you're saying about dense breasts. That's what made me decide to do the bilateral mastectomy as well. Often with triple negative, the oncologist will want to do chemo before surgery. You definitely need to meet with both doctors (surgeon and oncologist) to get all the necessary information to help you with your important decisions. Good luck to you, and join us on the Calling all TNS thread for lots of great support from awesome ladies who have the same diagnosis as you.
Hugs,
Kathy
0 -
neeciek: at stage 1, lumpectomy is as good as mastectomy. in fact mastectomy doesnt offer survival advantage over lumpectomy but yes, if u opt for the former, you wouldnt need rads post chemo.Thats what I was told.
0 -
Neeciek, def see the oncologist before surgery. I didnt and she would prob have recommended neoadjuvant chemo (chemo before surgery). the nice thing about that is that when you have your surgery, you may find out that your cancer has totally disappeared (NED- no evidence of disease) which must be wonderful. Since I had surgery first, I'll never really know if it's gone or not.
0 -
I also saw BS after diagnosis and he said chemo before surgery, then saw MO. I did my chemo then had left mastectomy with a temporary implant, radiation and now just 1week ago had right mastectomy and bilateral reconstruction. It's been 1 year since my diagnosis and so far so good!!
0 -
Hi Shelly! Very happy for you and wishing you continued good health for many years to come. I'm just curious, did you have a lumpectomy?
0 -
4 years out, bone scan/chest x-ray/mri/mamo all clear. Feel so blessed.
0 -
Hi, Gorilla12.
That is GREAT news...Wow, 10 years!!! Good for you :-)
May I ask what chemo meds you had?
I have had 3 Taxol treatments with 1 more to go, then I will have 4 A/C.
The A/C scares me. I asked my MO about possibly using something else and he said it is the standard,
so basically no.
I was hoping for a better or more detailed response then that :-(
I am very worried about the A/C causing damage to my heart.
So, here I am going through these threads seeing what chemo everyone else triple negative has had or are having.
I hope and pray for your continued health and that in 10 years the rest of us can say that :-)
Many thanks for posting! It means a lot to us.
0
