Looking for Her2 Positive survivor stories
Comments
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I had herceptin. I have no success registering it in my profile.
According to the table, after 5 years the recurrence is only 2 percent for early stagers
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I'm not HER2+ but I saw this discussion in the Active List and thought that I'd pop in and add this graph. It's important to note that this wasn't a large study but it does address the recent questions in terms of risk of recurrence after 5 years for HER2+ patients.
Source: https://wjso.biomedcentral.com/articles/10.1186/s1...
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Yes, small sample, and no breakdown of what stage de novo.
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Just wanted to add that the general consensus is that Her2+ driven recurrence usually happens in the first 2-3 years post treatment, if those with recurrence are years out it is possibly more likely to be driven by the hormonal aspect. I think this study has good generalized info, but there are several things to note. This study was looking at patients from 2005-2013. It appears that in the text between Table 4 and Fig 1, 92% of the Her2+ patients did not receive adjuvent Herceptin. Since this study was looking at a timeframe earlier than 2013, Perjeta would not have been prescribed yet and neoadjuvent systemic treatment was unlikely. Kadcyla for residual disease in larger tumors, node positives, or high risk patients would certainly not have been given. The unfortunate thing about studies is that they are often looking at data collected earlier than the use of current treatment regimens that have now become standard of care, so there is some degree of lag. As is pointed out at the end of the discussion in the study, if you are having any treatment that is different from what was studied it makes it a bit harder to apply these stats to those being treated now or in the recent past. In a subtype like Her2+ disease, that has a rapidly changing treatment environment, it can be a challenge to interpret and apply info!
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Thank-you Raliegh girl for your post. it is up-lifting and encouraging to hear your story since I, too had IDC, 2 large tumors - 6 cm. combined, many, many lymph nodes involved, ER- HER2+, same chemo and targeted therapy with pCR. I did have inflammatory BC also. I am 18 months out of initial diagnosis and 7 months out from end of all treatment.
I thought I had read something about highest risk for our scenario was first 5 years, first 2 being the highest incidents of recurrence. I try not to dwell on risks .
wishing all the best of luck and happiest life has to offer!
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HER2 3C on diagnosis Aug 2015, (12/36 nodes positive and removed) Double Mastectomy in Oct 2015. This was followed with Chemo + Herceptin. Didn't go through with radiotherapy. Implants in at the mastectomy. Had them out 6 months later. I hated them. It's been 6 1/2 years now. I honestly don't even really think about it until a mate gets Breast cancer and wants to talk about their options.
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"HER2-positive breast cancer progressively turned from the most feared to the most curable subtype.
Currently, more than 9 out of 10 patients with HER2-positive breast cancer who are treated with chemotherapy and HER2-blockade are free from recurrence 6 years after surgery.3 The treatment and outcomes of HER2-positive breast cancer have improved so much that the research focus has gradually shifted from treatment escalation toward a search for safe de-escalation opportunities."
More Tolerable Cures for Patients With Early-Stage HER2-Positive Breast Cancer: Halfway to Precision March 2022
https://dailynews.ascopubs.org/do/10.1200/ADN.22.2...
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thanks for sharing Moth! That is very heartening news, especially for hormone negative folks. Now I just wish they could make such great progress for triple negatove
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I am her2+and hormone negative. I went through tchp plus double mastectomy and 27 radiation treatments in 2018. I am four and a half years out from my initial diagnosis. I am doing great. I have a little neuropathy that I developed between chemo treatment four and five. These discussion forums kept me sane during that first year. There are a lot of ups and downs with treatment. Chemo knocks you on your ass. I work in home health and I had flexibility with my schedule which allowed me to continue to work throughout treatment. There were days it took everything I had just to put one foot in front of the other not just from the physiological changes occurring with my body but also that thing called chemo fog. My mental status was definitely out of kilter.Moth is always on top of things when it comes to breast cancer research. Moth thanks for always being so generous with your time. Hang in there girl. To the rest of you there is a light at the end of the tunnel. But damn it there are a lot of detours to reach the end of the road. Even though I'm doing great I can still remember how scary and difficult the whole process is.
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I'm still here after being diagnosed in 2015! Happy and healthy and loving life!
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Congrats on being cancer free & on the new baby!
I was just diagnosed Stage 3 in April. I cry everyday as I fear I won’t get to see my 6 & 2 year old grow. I don’t have my breast surgery til end of October. I hear HER2+ Hormone Negative (which I am is a very scary cancer to have especially because of the potential of brain mets. I am only 39 years old.1 -
Take heart! Herceptin is extremely effective against hormone negative HER2 breast cancer.
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I am back to post that. I just had my 11 year cancer-free checkup. Diagnosed in Oct 2011. Triple positive, nine positive nodes, 6 cm tumor, had a heart attack during AC chemo. Then had to quit Herceptin after 3 months because of heart failure. My ejection fraction dropped from a normal 65 to 29.
Quitting Herceptin was terrifying. My oncologist held my hand in a doctorly fashion and said he believed I had enough Herceptin and God would take care of me.
That went through my head as a mantra All these years. Here I am at age 66 and thriving.
There have been a lot of tough patches (like needing a defibrillator ) but I'm still enjoying life and appreciating everyday.
Don't give up, go to the best cancer hospital preferably an NCI designated Cancer center for a second opinion.
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Loveofmyboys — hormone negative. HER2 positive is an aggressive cancer, but it's also considered very treatable. There was a study within the last few years that found that it is the *most* treatable version of breast cancer at this point because they know what is driving the growth of the cancer (over expression of the HER2 gene) and there are very effective ways of treating it (herceptin and Perjeta).
There is another thread on the site for this version of cancer — it's not super active because it's a fairly rare sub-type and so many of us get cured and move on; however, there are a few of us there who check in fairly often and you can find some of the previous links and articles if you go through some of the past discussions.
https://community.breastcancer.org/forum/80/topics/767013?page=229#idx_2284
Treatment will suck, but probably not as much as you think it will. The fear will be overwhelming some days. Every pinch and pain and headache will make you wonder if it wasn't caught before it spread. But just keep reminding yourself that this version is very treatable and the odds are in your favor. (95% chance of a cure if you have complete pathological response (PCR) after chemo and initial rounds of herceptin/Perjeta.) if the fear gets to be too much, ask your doctor for something to help — the physical side of treatment is hard enough that you shouldn't also tough out the mental and emotional side if it's too much.
Feel free to PM me if you like. I was diagnosed at 41 in July 2020
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Thank you all for the responses! I am so happy to hear that HER2+ is so treatable & you all are doing so well!
I haven't had my surgery yet, but my breast mri showed no signs of tumor left and it is a lobular 8.5cm at its’largest section. I just finished TCHP chemo. I had 1 positive node that I know of so far presurgery.
I hope/pray it didn't spread & that's my fear is I heard this subtype is known for brain mets.Melbo thanks for letting me PM you. I may do so in the future.
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The year of treatment is so long. How long did it take you to feel well and more like yourself after Chemo? I just finished TCHP chemo about 2 weeks ago
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I didn't feel like it was done with until Herceptin was finished. The last few infusions were at the local hospital which had just opened. I then waited several months, and got the port removed. I then got a nipple tattooed on my faux boob. It was then that I felt finished with it. The freedom was more of a psychological thing than a physical thing.
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Ladies please do not be discouraged. I am 11 years survivor...Unfortunately my son died by suicide this April and I forgot about cancer...Pain is too big...Please pray for me...And ask Lord to be with you every day...You will make it... one day at the time
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Olgah34 - So very sorry for your loss. I did say a prayer for you.
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Prayers to you. So sorry to hear about your son
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Hello Ladies!!! Thought I'd stop in and say hi.
November 6, 2022 will make another milestone for me. 20 years ago, on November 6, 2002 the journey began in the OR with a total left mastectomy. I then had 4AC and 5 years tamoxifen. The oncology community was not using Herceptin in stage 1 patients at the time. I was 33 years old at the time with two children ages 5 and 8. Now they are 25 and 28 and I'm 39 and holding!
It seems like an eternity ago but at times like yesterday.
Take each day as it comes. In the beginning it's one day at a time, then a week or two at a time. Before you know it, 20 years will have passed!
I'm thankful and grateful to be able to share my story 20 years later.1 -
Lisah - thanks for sharing. 20 years is a fantastic milestone. I'm at 9 years after my recurrence. I was fortunate enough to get Herceptin.
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Hi, pals! I'm at 11 years and counting!! I had a bmx, did AC, and a clinical trial of Taxol and Lapatinib, Herceptin, and then 5 years of Tamoxifen. No worries here. It's funny how things have popped up over the years--like vertigo for example. That sent me for a brain MRI...but it was just the usual ear crystals that people get moved about. How lovely to have a normal, boring thing! I don't do any scheduled scans or anything--Dana Farber only does them when necessary due to symptoms. That was a bit hard to hear at first, but it's so nice to move on too. Not that I could ever forget my loving, supportive community here! Love you, sisters!
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passed 17 years now and living life with profound joy and grati
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Hi! My tumor was small but very aggressive. I had mastectomy (clean nodes), six rounds of chemo, Herceptin, and since then only aromatase inhibotors.
I had my 7-year check-up a month ago, and all is well. I'm on my 7th year of AI (currently letrozole). I am considering stopping at the end of this year, because I'm now 66 and apparently after seven years, the risks of that drug causing cardiovascular problems is higher than its further protection against recurrance. Also, the AI weakened my bones and I had to have biphosphonates for three years to keep from progressing into osteoporosis.
When I first started with breast cancer, I checked this thread often to give me hope. I hope my check-in can likewise give others hope that yes, you can survive with HER2+ cancers.
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Just had left breast mastectomy , sentinel node was clear but awaiting pathology results of tumor and 2 other lymph nodes. I'm 75 and am terrified of maybe having to have chemotherapy (as have osteoarthritis and atrial fibrillation) and would rather just have Herceptin only. Has anyone just had Herceptin without chemo please?? (I'm in the UK). Thankyou!
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Herceptin can cause heart damage. My MO sent me for testing (I forget the name of the test) on a regular basis. Just let them make the recommendations and ease your fears about chemo. I don't think chemo exacerbates arthritis. Although pain from nerve damage could complicate things.
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I am so glad to hear these Her2 success stories. How many of your HER2+ ladies, though, went without or discontinued the AI drugs?
I am still in such a quandry of being Her2+ and taking these drugs which I tried and could not tolerate.
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AI's will do no good for us hormone negative ladies. And remember, we are not all ladies. Some people with BC are men. Talk to your MO about the necessity of hormone suppression for hormone +, HER2+ breast cancer. That is a good question that was irrelevant to me. However, I was once told that chemo for hormone negative BC was more effective than chemo for hormone positive BC. Don't know if that is true.
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I refused to do radiation, but did a full mastectomy by choice, but then they discovered that it was full of DCIS. I did chemo and herceptin. Hormone inhibitors were not a choice. I think it is best to pray for those who have reoccurrences, and not worry about me.
If watching others struggle depresses you, then stay away.
Doctors never worried about lefty. My first kid preferred lefty, but my second thought that lefty gave her too much milk.
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