HER2 Positive-anyone 10 years out?
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LOL. I've got one...in my basket of cancer stuff.
I'm ridiculously organized usually, but I just couldn't put the effort in. I've been meaning to put stuff in a binder though--maybe after the school year is done. Man, there's always something to do, isn't there?! 0 -
I was diagnosed January 1999.
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13 years out! Glad to hear it ElaineM; thank you for sharing!!0
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ElaineM 13 years!!! you go girl.0
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This scares me.......it's almost like I am just waiting for which appt. I will be told "it's back". I am only NED for 1.5 yrs. I have a bilateral breast MRI scheduled for June. I hate Her2+++.
".....And he simply stated "that is not the kind of cancer you had" the studies show that the high grade 3 Her2 cancers almost always come back in first few years after treatment"
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greenacres I think you misunderstood. Typically IF high grade 3 HER2+, ER/PR- are to come back it will be in the first few years. NOT they will.
I will be celebrating my 2 year NED August 31st. Sounds like you will celebrating around the same time.
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I had 16 weeks of neoadjuvant Taxol/herceptin. Two weeks after, PET/CT showed 'near complete response', so ONC sent me to surgeon to see her opinion about surgery. Scheduled for breast conserving outpatient procedure to remove small spot left in breast and larger lump still in axillary nodes. Mets in spine are no longer hypermetabolic. Now on every third week herceptin infusion and daily femara pill. Keeping my fingers crossed, totally uncertain what to expect. I am thinking of a second opinion on the surgery, any thoughts if second opinion is worth the effort?
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I'm not here to post 10 years out....
For me it's 7 years and 1 month....
Very grateful but the thought will always be there......
Good Luck Sisters ♥
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Yes, I am a 9 year, HER2 Positive (ER/PR neg) SURVIVOR....Stage 4! Breast cancer cells had migrated to lymph nodes in my neck which accounted for the Stage 4 diagnosis, however, after my chemotherapy, there was NED, and it was downgraded to Stage 3B, which sounds a lot better! I just read about a promising new vaccine for HER2 Breast cancer that has been used in a clinical trial! Wouldn't that be amazing?
Hoper that you are doing well...I am fine, except the fact that there is no relief or treatment that is "allowed" for menopause symptoms. Oh, well, at least I'm alive!
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WOW! YOU'RE DOING GREAT!! I REALLY WAS UPSET WHEN MY ONCOLOGIST SAID THAT "IT WILL COME BACK. IT'S JUST A MATTER OF WHEN." ONLY GOD KNOWS THE ANSWER TO THIS, AND WE ALL NEED TO JUST GO ON LIVING AND NOT WORRYING! EVERYDAY THERE IS A CHANCE THAT WE COULD MEET OUR DEMISE IN ONE WAY OR ANOTHER, BUT THINKING ABOUT THAT, IS NO WAY TO LIVE!
CONGRATULATIONS ON THE 13 YEARS OF GOOD HEALTH!
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Hi thinkpositively
Had to respond to the shocking remark made by your onco. a) it is inaccurate if you look at the recent data and b) highly insensitive to you, the patient in his care. All the best to you and I hope you got rid of him/her!
Great posts by all long term survivors on this thread. Thank you one and all.
Liz
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Hello, all,
It's four years today since I was diagnosed. Not ten yet, but working on it!
And grateful to have this forum to share everything--good and bad--that comes with this experience.
Ann
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I'm guessing that we are a part of the first generation of Her2 survivors who will revisit these boards and report long-term survival. I wish others ahead of us knew their status and could report back. I think to my mother's friend, the mother of my childhood best friend, who is 40 years out and has no idea what her receptor status was. She had a unilateral mastectomy followed by chemotherapy in the Sixties. Who knows... perhaps she was Her2 +. I'm sure there are many out there. Someday we'll be able to declare that we're among them.
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Amen to that AnneMarie!
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My herceptin nurse told me this heart warming story of another BC patient here in england. The patient had extensive spread to liver,lungs, spine she had done all the chemo, rads, surgery prior to secondary dx, she has been on herceptin for 12 years (administered once every 3 weeks by IV like myself) and at her last scan this year, no mets anywhere!!!! she is now classed as NED. This story goes to show how effective herceptin really is and as long as your heart scans come out on top you can have it for a very long time. I was particularly encouraged by this story as I have lung mets (dx from the start) and am HER2+ so will be on herceptin indefiantely, I am only 44 (42 at dx) and am looking for as long as possible on this wonder drug. Really hope this gives some hope to you ladies on here.
Love and light to you all
sarahlou1967
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Thanks for sharing that story sarahlou!0
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Sarahlou
I was dx at age 41 (my signature line is wrong!) Your story gives me such hope. Thank you for posting.
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Hi ladies,
Wanted to respond to a couple of the comments from ladies with insensitive oncs, my oncologist has not given me any timeline and I don't believe giving someone such a forecast is either relevant or positive infact I believe it too be highly dangerous and would recommend Bernie Seigel's book Love, Medicine and Miracles which further illustrates the importance of not giving someone prognosis in terms of months or years unless like my onc said whilst discussing some side effects "you don't want to suffer with hot flushes for the next 20 years of your life ", these words meant so much too me and give me something to hang on to, I hope this helps those that have had such insensitive comments from professionals who are supposed to be proloning our lives.
Love and light to all
sarahlouxx
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Sarahlou,
That is so true that a chance remark (although it probably wasn't a chance remark on your oncoclogist's part) can simply lift your spirits and redirect your thinking. So important when you're dealing day to day, month to month with a cancer diagnosis and treatment. You're absolutely right that the focus should be on living well and enjoying life.
Ann
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My alternative M.D. this past week said that NJ is cancer avenue and I should move to Montana - well I didn't need to pay $250 a visit to hear that...I am HER2+ - had BMX in Feb. of this year and doing everything I can to keep this at bay but I agree...live your lives not in fear but in joy every day. No one knows or can predict what we are going to die from - at some point, we all will be gone - it is how you live your life that matters - some of these doctors have no bed side manner at all...enjoy life every day!!!!!
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Hi ladies, well after time has past, in my opinion, it doesn't matter what you eat, drink, breath, absorb, worry, gene-pool-inherit, nor-where you live at any one point, "unless you live near a nuclear reactor", that it makes a-sceric of difference why this mutation occurs, its the Zillion $$$ question, It maybe simply that all or some of the above needs to cross paths at the same time, in order for the mutant-dual-receptor-mutation to take place, and maybe add the stress-factor scenario, immune-suppressor to miss one of our own cells running over-time....Im guessing one day researcher will find a simple explanation for this and it may-well of been sitting right under our noises all the time !!!... happy to hear any other opinions as to the big question how and why open discussion...bc, does your M.D have an alternative practice in Montana ? !!! some-times a wake-up call by paying exorbitant amounts for us to realise, what was just said makes no sense, but then again Im definitely no expert, and not the best with a bed-side manner either, take-care, live and enjoy life, thats for sure...regards catherine
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Hi again ladies ( I posted in Feb 2010 !)
I am now 7 years and 3 mos " out" from a miserable Stage IIIC her pos dx and still doing the happy dance with NED. I fully expect I'll be dancing with him until
I am old and gray.
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Woot, woot, Ikc!!! Thank you for stopping by to share the wonderful news. That is FANTASTIC! Big grin.
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Will hit 11 yrs. cancer free from HER 2 on 9-11. No thanks to Obama 'care' who fired 45 oncologists in my state and quietly brought in 13 to replace them who are off shore types. So I lost my oncologist of 10 yrs. who went to Yale and Columbia. Now it's all up to God and chance!
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Miro - so sorry to hear of your loss of Oncologist! Congratulations on 11 years! You give me hope! Any special things you did, diet, drugs, anything???
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Hi Ladies!
I wanted to speak up and say hello! I always peek in but I haven't left a post here. I am 4.5 years out and counting!!! I do feel hope when I read the posts from the ladies that are several years out! I wanna be just like you when I grow up! :-) You ALL inspire me to stay positive and keep pushing!!0 -
Hi All
I am now 10 years from diagnosis and enjoying life:) I drop by the boards every now and again just to see how it's going for all...great to see so many celebrating milestones each year.
I was on the Hera trial and so very very grateful to receive the arm with Herceptin...every 3 weeks for 1 year.
I was 40 when diagnosed so this year I've celebrated my 50th birthday, 10 years since diagnosed with BC, 30 years married...no grandies yet but maybe one day!
Stay happy and well everyone...remember to stop and smell the roses each and every day and enjoy what you do:)
Cheers Sharon
PS I deleted one post as it seems to have put two up:) x
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Hi All
I am now 10 years from diagnosis and enjoying life:) I drop by the boards every now and again just to see how it's going for all...great to see so many celebrating milestones each year.
I was on the Hera trial and so very very grateful to receive the arm with Herceptin...every 3 weeks for 1 year.
I was 40 when diagnosed so this year I've celebrated my 50th birthday, 10 years since diagnosed with BC, 30 years married...no grandies yet but maybe one day!
Stay happy and well everyone...remember to stop and smell the roses each and every day and enjoy what you do:)
Cheers Sharon
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Hi Aussie -Sharon
Your story is inspiring and resonates particularly with me as I was 41 when I was diagnosed and also had one positive node. Thank you for posting.
Best wishes for many more happy years.
Liz
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Great to see more women more years out and doing well :-) Sharon you certainly "sound" great!
Jenn0
