HER2 Positive-anyone 10 years out?
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So many inspiring stories! And it's only going to get better!!!!
Thanks for the inspiration and support, ladies, and too, your willingness to share your personal journeys with the rest of us!
Also, to Fluffqueen, you're very welcome. Losing three very dear people all in one year from random, spontaneous illnesses/events definitely put my BC in perspective.
Many hugs and much love to everyone!
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I have my own thread under HER2 + and I find this thread very useful. For those who have not read my thread, my wife had a BMX on 10/14. Her final pathology report in the right breast had HER2 + ER + node negative IDC with 3 foci - 3.5 mm, 1 mm and 1 mm. The first oncologist recommends chemo (TCH with Cytoxan instead of Carboplatin), Herceptin and Arimidex. The second oncologist recommends no chemo, no herceptin and focus on Arimidex. My wife is a 52 year old Asian woman. These are two of the best oncologists in Central New Jersey. We are now going to go to a major city nationally-known cancer hospital to get a third opinion. Our first stop will be the University of Pennsylvania. My wife is leaning toward the no chemo/no herceptin focus on Arimidex. The NCCN guidelines also recommend this. For me, reoccurrence risk is a key factor in analyzing the pros and cons of this very difficult decision. What would be very useful for me for anyone who is has not been on my thread would be to describe how you are monitored for the possibility of reoccurrence - just doctor visits or full body scans, blood tests, etc. I am going to read this thread carefully all 451posts because at least there are quite a few women who have lived for a long time with HER2 positive hanging over them. Thank you all in advance and I wish you good health.
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BlairK - my oncologist does not do any scans at all. After surgery and chemo, she does nothing more to check for recurrences, unless necessary. She says that studies show that it is best not to subject patients to more radiation than necessary, and also many times these scans give false positivies, which of course freak people out. She is one of the top oncologists in the Detroit area, and her colleagues practice the same philosophy. Also, she claims that once there is a recurrence, early detection is not as important as it is the first time around. I'd be interested in anyone else has a doctor with a similar practice as this. It has always spooked me!
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Beth - I am scheduled for mammos only as far as I know.0
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I'm treated at Dana-Farber in Boston. My follow-up (post-lumpectomy, chemo, and radiation) consists of regular physical exams (every six months) and mammograms--the mammos were every six months until year three; now they're once a year. I've never had a diagnostic scan. I think this is standard practice, according to the ASCO guidelines. At least for Stage 1, node-negative HER-2 positive BC.
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Yes, physical exams for sure too.
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Beth my onc is the same. She was one of the oncs in the intial trials for Herceptin (found out when I read the book on the Making of Herceptin). There is no increased survival or prolonged time for finding mets early (before there are symptoms).
I did get scans just before chemo (order by my BS) because there was time. I had another liver scan after chemo because they did see something that the believe are cysts. I know I'm supposed to have another liver scan a year after that last one in Feb. I'm sure if things look the same they will stop scanning. As you can tell I'm not concerned. Until I hear there is a problem I assume there isn't.
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Sounds like we're all in a similar boat when it comes to after care. I also get the breast exams and yearly mams. Thanks ladies!
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Hell all:
Just chiming in. I had a scan before chemo and one after. It was very helpful. I have excellent care. They know that there is nothing hidden. I have mams every three months alternating just effected breast to both. I had a bone density done and am due for another. My philosophy is scan away. The radiation is minimal,The knowledge is optimal.
I have had my third year anniversary. I pray to get to the 5. Then stats change dramatically in my favor.
Peace and Beauty.
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peace and beauty, back to you, and a nice philosophy Bold thanks, just now maybe jumping back on to the mary-go-round of scanning after the, what next, after treatment ! being on the mono-therapy "neratinib clinical drug trial'' for EGFR kinase, I feel I am doing the most I can do to delay relapse, but just recently observing a lump skin lesion at the point where previous radiotherapy damage sights where most visible, suspicious looking, hoping just a minor setback !!!0
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It's really encouraging to read these posts this evening. I'm 3 years out from TCH/Herceptin/Rads/Arimidex and have a mammogram and bone density scan tomorrow.
Sometimes drama and superstitions don't let me relax and then, when I do, I feel I'm not braced or soldiering off the enemy. Crazy me. So reading these helps me to put my good fortune into perspective and realize that it's highly unlikely that the other shoe will drop. Peace and grace to you all.....
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I was diagnosed as HER2 neu 3+ back in 2003 and was one of the participants in the clinical trial for herceptin for early breast cancer patients. (I had 3 months of andriamycin, then weekly herceptin with taxol for 3 months, and then 9 more months of weekly herceptin. And 7 weeks of radiation. 5 years of arimidex.) So not quite 10 years but about 8.5 years from diagnosis.
I'm doing well.
Good luck to you!Sally (3.7 cm IDC, 1 of 15 nodes positive, grade 3, Stage 2B, ER/PR+)
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sallyw - great, great, great!!!0
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Wow sally that's fantastic. Nice to see a triple positive doing well so far out. Keep it going.
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Reading posts like sallyw's is what makes me happy!!!
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Makes me happy too. Keep them comking please. And I REALLY look forward to saying "yes me" when i reach my 10 years annoversary.
Love and healing to all xo
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Clocking in... Bx was in 2001 but dating from surgery, as of this week I am 10 years out...
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Awesome AlaskaAngel!!
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Congrats AA!!!0
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Alaska thanks for posting. 10 years! Congratulations!
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Congrats Alaska Angel!!! That is fantastic news!!!!!
I am 3 years and 5 months. I don't exercise daily, but I try to walk 3x a week...in the summer or better weather (I live in Canada) I dragon boat, bike and do organic gardening. It is interesting, AA, that you are fine and you didn't have herceptin. There is so much doctors don't understand about her2+ and herceptin!! I have a friend on another site who is also her2+ pos and she has not rec'd herceptin either...her doc believes it makes women sick. He gives her mistletoe. Are you taking any supplements that you think might be contributing to your good health?
Thanks,
tuckertwo
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Tuckertwo it sounds like your friend is going alternative. Most women have no problems with Herceptin regardless of what her doc thinks.0
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What lago said!
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Thanks, all of you! Trastuzumab has been applied to early stage bc in such a blanket way once the trials were done that we can't "see" all those like me who never needed it -- which includes some of the "you" who are out there. So, take heart -- I think there will be many, many more 10, 15 and 20-year stories told among you as time goes by.... I think if researchers were to go to a country where almost all patients are not getting trastuzumab because they can't afford it, and test for early stage HER2 positive patients, they could get a more accurate perception of how many others like me are probably out there.
I qualified for the trial using lapatinib that was offered to those of us who had "missed out" on trastuzumab as a way of seeing whether it would protect us from a different HER2 avenue, but ended up declining to participate for a number of reasons.
In my case I tend to believe that ovarian suppression by surgical means and perhaps 1 year of tamoxifen would have been a better choice for me all around, but I hadn't learned as much back then.
Here's to many years together!
AlaskaAngel
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10 years out....... yaaaaaahooooo!
I am praying for and visualise that (and more) for me. My children are 6 and 13.
I see myself dancing and doing dolphin dives at their 21st birthdays, university graduations, weddings and the birth of their children.
I pray the same for all of you xox
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Just got the information that mine is ER-/PR- and Her+. I was very very depressed and came to this thread. But reading your posts has given me a lot of hope. I too can see myself being around to see my kids (3, and 9) grow up.
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7 years, 6 months out.
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DFW - you just made my day ....:)
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Tonight while watching TV, I scanned all 16 pages. Good information. Awesome encouraging stories especially with those who are advance stage cancer. Encouraging thread for the newly dx with the her2+ cancers.
I had my first infusion a few days ago. My oncologist said that 75% of stage 1 cancers her2+ tumors after surgery won't have a recurrence. After my mastectomy, I'm NED. The herceptin preventive for the 24% recurrence of possible escaptive cancer her2+ cells. So 75% bc stage 1 women in the her2+ catergory wouldn't have a recurrence anyway. Grade II, 54% with surgery NED. We don't know which catergory we fall into and for that reason we do treatment. Since my luck hasn't been that great I'm doing herceptin. So far side effects were mild.
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evebarry I was told with stage IIB (with my stats) only 40% are alive & NED (10 years) with surgery alone. With chemo/hormone treatment 84% are NED & alive (2% die of other causes). I'm not sure how the Herceptin plays into this though. I don't think they have the data since this has only been standard care for early breast cancer since 2006. Meaning the stats could be even better than that.0
