Looking for Her2 Positive survivor stories
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Rosamond, thanks for stopping by and sharing your success story!
*edited to correct Rosamond's name....I called you Rosalind!
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Rosamond- thanks so much for sharing. Happy to hear you're doing well.
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Find your strengths inside you first!
I hope this story I am sharing will find you in great health. I was diagnosed with her2 positive lobular carcinoma in 2009 about February. It never really hit me until I went to the surgeon who said that my left breast must be removed. Then it was my choice to have a double mastectomy. I was 38 years old with four children and married. It didn't quite hit me that I actually had cancer or that this was something very serious until I came out of surgery after the double mastectomy and so nothing left but an in cave chest. In addition about a week later I was informed that my left axillary lymph nodes all tested positive for cancer as well which led to additional surgeries. I went on from the surgeries and was told I would have to receive the chemotherapy with taxotere, radiation therapy and follow with tamoxifen for five years. I'm probably unlike anyone on this site. I didn't like people talking staring looking questioning. I believe I approach this in a totally different way. I wore prosthetic bra to cover up my double mastectomy. I went to several chemotherapy appointments, did go to the radiation oncologist at one point But ultimately decided I was not going to do that right off the bat. This would have had interfered with the way I was going to have reconstruction which was where I was focused. Now by any means I do not suggest this as I do not believe any treatment hurts or causes any type of cancer to remain or to come back . I ended up against medical advice going and having reconstruction without knowledge of both my oncologist and without my plastic surgeon being aware that I was not finished with my treatment. There's a few reasons for this I didn't have any support. I went to my chemotherapy appointments by myself. My husband lacked the ability to be a support to me in any way. In fact as I drew more interested in what I can do to help live a lot longer he grew interested in making sure I stayed just right where I was. He was making travels to my hometown of Philadelphia to research my medical issues with other doctors and researchers very difficult. And Incredibly long story short, he would go so far as to have me incarcerated from month to month on various bogus charges that became unfounded and just cost me a little bit of money. They never would go to court but at the same time this was exposing me to A Whole New World of germs. I had to do what I thought I had to do it the time to make sure I was saving my life. So I decided I'm going to go ahead and have my plastic surgery to repair what cancer has taken from me for starters to make me feel better about myself. This did not go over very well obviously with my oncologist and rightfully so. As chemotherapy days after surgery is not by any means a good idea.. Surgery went well I was fine. This is where I stopped my treatment all together. It wasn't because I was unhappy with my oncologist or in denial of any sort but simply because I needed to ensure my well-being and at this point in time it was not going to be a good idea that I underwent more treatments. I could not stop the police from arresting me or from believing him or even caring about my medical issues. Okay now we can fast forward we are 9 years later now. I have not resumed chemotherapy, I did not receive any radiation, nor did take the tamoxifen for five years. In the past 9 years I have finished up all the reconstruction surgery that I needed to have. I have divorced the man that had made this decision in my life critical. I am still in a rut trying to get out of the same county as this man. But my reason for sharing my story in short of course is although I didn't do anything the way it should have been I am still here almost 10 years later. I am not saying the medical community does not know what they're doing. But I strongly do believe that you have to believe you have to believe in yourself and you have to believe that you are strong enough to fight this no matter and a reminder that everybody needs somebody to support them. Had I had somebody just one person who showed care and concern besides the Dr of course I probably would have finished. I was faced with additional challenges that should have never been in front of me. Nobody should have to face what I faced. And even now I still face challenges still hope to get out of this County and back home where I need to be. Just be as strong as you possibly can be, look for your support because sometimes they don't know you need it. Don't let anybody step in your way of treating yourself the best way you can. My Hope Is that breast cancer it's a thing in the past and the treatment is ever so easy. Even though I didn't go very far mine it was not an easy fight. I am nervous every time I enter a doctor's office knowing that I did not do all that I could do, all that the medical community has offered me. I thank God everyday I am still here. May God bless you. Jacqueline D Robbins Baldwin
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Jacqueline, what a story and what a struggle. As I read your words I was imagining your strength. I cannot imagine how difficult it must have been for you to have to fight for your life because of BC while fighting against things that were out of your control. Thank you for sharing how almost 10 years later you are still here. Still surviving. Still standing strong against those things that are trying to break you.
Here's to many more years!
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Jacqueline - I am so glad that you took the time to share your story. I could feel the strength that got you through that difficult time. I hope that you will continue to be healthy and be happy. I hope that if anyone feels like they have no one to help them the way that you felt they will reach out and get help from somewhere. I am so sorry that you did this on your own.
Peace and happiness to you.
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Hello,
My mom has just been diagnosed with stage 3 breast cancer er/pr -, her 2 + with 15 LN involved. She’s currently undergoing neoadjuvant chemotherapy (she just had her first one) followed by surgery, radiotherapy and then Herceptin.
I’ve read so many horrible stories about survival rates and recurrence and am so terrified to lose my mother. I love her ever so much.
Would really love to hear some her 2 + stage 3 BC survivors.
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Hi Sammi3,
I'm sure I've posted somewhere on this thread, but just to let you know, I'm now 11 years from diagnosis (was diagnosed in my 30s) and was HER2+, grade three, large lump in breast and armpit. Doing fine now. Hope that helps you and others.
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RebzAmy - thank you so much for sharing! You've actually made my eyes teary with hope
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Rebz, thank you for stopping by and sharing your story with us. 11 years is awesome!
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Sammi3,
I was stage 3 with a 10 tumors spanning a 10cm area. I had a complete response to neoadjuvant chemo and had lymph node involvement beforehand. Nothing at all afterwards.
I was 37 years old at diagnosis and now I’m 40 and pregnant again! I feel like cancer is now in my rearview mirror.
There is hope!! Best of luck with your mom!
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Dear Rebzamy and raleighgirl,
Thank you so much for sharing your stories. Your stories have actually helped me get through the day and given me so much hope that everything will be okay. ❤️ Congratulations on your pregnancy raleighgirl!
May I ask what did you find helpful during your chemotherapy- what helped with the fatigue and tiredness
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Celebrating over 13 years of a stage IIIC , her2 pos BC. grateful and livin large every day!
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Sammi3,
What worked best for me for fatigue was sleep! I listened to my body. But I also participated in a walking study(and exercised a lot before he diagnosis) which forced me to get at least a little exercise on those days I didn’t want to get out of bed. I had a seven month old and 19 month old at the time but had a wonderful nanny to pick up the slack for me. Tell her not to be afraid to ask for help
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When we see so many bad stories it is so great to hear the good stories.
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Thank you so much for your words of encouragement. I am on the hormone blocker and the side effects are minimal so far and manageable. I just started a new treatment Kadcyla that is adding to my fatigue problem. Havent cleaned my house in over a year...husband and son just dont look at it as a priority.
Angelsgal57
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Angels I thought kadcyla was only for stage 4? Did you do herceptin/perjeta
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I’m four years out now since diagnosis and doing well. Clear scans every six months. I’m taking tamoxifen daily for at least another year.
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Just had my 4th clear mamo. Also on Tamoxifen. Love, Jean
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Cassie, wonderful news! Thanks for sharing.
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zj, 4clear mammo's....awesome!
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Congratualtions! Thanks for inspiring us!
Anyone here heard of this new drug created for early stage HER2+ called NERLYN? I have been reading this article that is reduces reccurance up to 34%.
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Yes, this page has an article and a forum thread abour Nerlynx. The link below goes to the thread where the article is given in the opening post by the moderators.
https://community.breastcancer.org/forum/80/topics/857091?page=1
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Yay! Ray of light! Thanks for the link
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Hi, sorry I havent been on in a while. Yes I did Herceptin Perjeda, was off it for 1 month and they found specks in my lungs. I wasnt taking a hormone blocker so we think it is Estrogen receptor positive, so I was put on Kadcyla to knock it into remission.
I have had 3 treatments so far and for bein more toxic than Herceptin I have had fewer side effects and they arent as harsh as the Herceptin was.
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Angelsgal57- What made your doctor scan your lungs? What do you mean when you state specks were found on your lungs? I've been on herceptin and perjeta since February 2018. I haven't had any. noticeable side effects from herceptin and perjeta. I do have concern regarding long-term side effects with cardiac function. I feel great. I ran a 5k last night and I ran a 5k this morning. I had a echocardiogram done after completing chemo in June of 2018. There always seems to be something lurking in the shadows. Im glad Kadcyla is working for you with fewer side effects.
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Hi Jo6359,Angelsgal 57 responding to your reply. I finished my 1 year of Herceptin in May 2018 and was off treatment for 1 month and in June they did a baseline PET CT scan and there were miniscule (less than 1 cm) cancer cells in my lungs. I have lung nodules due to being a premie and having lung issues my entire life, and these nodules weren affected by chemo or the infusion medications so they are thought to be unrelated to the cancer. BUT these tiny cells that showed up were of concern due to the fact that I didnt jump on the Hormone blocking meds. Dr believes they are Estrogen positive cells and put me on Tamoxifen and Kadcyla immediately. I am now heading into treatment #4 of 6 and will have another PET CT scan on Oct 4th to see where I am now at the half way point.I feel fine, energy is up, but I have developed severe leg cramps that go from my upper thighs to my feet and toes. Mostly happen at night. Sometimes both legs at the same time which is agonizing. Husband is massage therapist trained so that helps come. Drinking tons of water and eating right.0
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Angelsgal-Incredible. Thank you so much for sharing your information. I'm so glad you're starting to feel better but those leg cramps sound nasty. You have been through a lot.
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I was diagnosed Stage 3, Her 2 + in November 2010. Did ACT and Herceptin, double mx, and radiation. On Tamoxifen since July 2011 (was also ER/PR +) Still cancer-free - almost eight years from diagnosis.
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sweetbean- thanks so much for sharing. I always appreciate positive news.
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Sweetbeen - thank you so much for coming here to share! What an inspiration! I hope and lose all hope thousand times a day, but your post may add more hopefull moments for me. Thank you so much and wish you healthfull decades to come
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