HER2+ Recurrence
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Sarahnh, my MO could have very well said THP. At that point, I stopped taking notes. Thank you so much for your comments. I truly appreciate them. I don't want to give the impression that my MO is incompetent. I trust her implicitly, and she has not led me astray through my prior two bouts with cancer, but I am an information junkie, and she encourages me to research and seek other opinions. There are other complexities with my continuing recurrences as well as my own life situation that color her recommendations to me. Anyway, if you have any research about recurrences after the 5-year mark, I would love to read it. I have been unable to find any studies or articles, yet, that aren't discussing MBC.
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I don’t have a lot to add, just wanted to let you know that I’m thinking about you and will be interested in hearing what you decide or find out if you get a second opinion.
I can also commiserate a little bit with hair issues after TCHP. Mine came back, and at first it looked like it would be fine — but once it got to a certain length (as in 4 inches long) it was clear that the texture was very wrong (and not in a cute way) and there were patches that just didn’t have much hair. So far the only way I can wear it is to keep it trimmed really short on the sides and rock a faux hawk (which is usually dyed purple or teal) in the middle to help cover the bald spots. I generally like the look, but I still get frustrated and sad sometimes that it’s the only option I have found for my real hair.
I also bought a hair topper which I liked. It was expensive because it was real hair, but basically you clip it into your actual hair and it looks fine. It took seconds to clip in and was generally easy to take care of. I wore it for a few months and the only people who knew it wasn’t my hair were people I told or people observant enough to realize there was no way it would grow that quickly or change that much (which was shockingly very few people.) I only stopped wearing it because I didn’t like the style I chose and it didn’t feel like me… maybe I’ll go back to it eventually though, or get another one that feels more like my style. Or get this one dyed again and re-styled.
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Thank you, melbo. I have enough hair to wear a topper, too. It's for advanced stages of hair loss. I find it so much better than a wig. I buy the synthetic topper and have found that if I take really good care of it, even though I'm wearing it everyday, I can make it work for much longer than what they indicate. For me the greatest frustration is having no eyebrows. Drawing them on doesn't look that great, and sometimes I wish I could have a hairstyle that doesn't require bangs to cover up the massive blank space between my eyelids and my hairline. I used to have long, thick and beautiful eyelashes, too. Sigh.
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bluesfan4life From your posts it sounds like your MO is very competent and also tuned in on a personal level, which is great. I'm sorry if I sounded like I didn't get that! It seems she wants you to get a second opinion at an "academic" hospital. Which I hope you will do! From talking with my own MO, treatment for HER2 residual disease (which I understand you didn't have) and recurrences (locoregional and/or metastatic) is changing and advancing really fast. I trusted my doctors, but got second (and third) opinions for everything, and am so glad I did, because it helped tailor my treatment.
I'm so sorry you are going thru the hassles of insurance, and I completely agree and sympathize with everything you've said about that. What you experienced with Siteman versus insurance is unconscionable in my opinion. I have a friend in STL with insurance via the marketplace, which she obtained specifically to get in-network for BJC/Siteman, during her own health scare. I can send you her plan info if you'd like.
I haven't seen papers that specifically address late locoregional recurrence for HER2 BC. Like you said, the focus is always on metastatic recurrence, I guess because that is more common than LRR for us HER2 pts. So that's annoying! But I will keep my eyes open.
I hope being here on the board and talking with us other HER2 people will help you feel less alone in this.
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Hi, I am one of the Her2+ reoccurences. Diagnosed in 2006 with er/pr-, Her2 very positive. I had a lumpectomy, chemo and radiation. I was told I had a 90% chance, unfortunately in 2021 I was diagnosed with a reoccurence identical to the first, same breast, almost the same location. I had a dmx with implants, but the radiated side implant had capsular contracture and I had a lat flap 2 weeks ago. Tuesday I had to have a small surgery to remove an area of necrosis.
I've been having a mentally hard time the last few days. Nothing ever seems to go right, I have so many issues (I feel like a hypochondriac). My husband, family and friends said just take out the implants, why would you go through such a difficult surgery (followed by 2 more). I told them, thankfully they don't have to make this choice.
I just wonder if it will ever end! I don't tell anyone about my pain, how I feel or what I'm going through. To the world I'm.doing well, I'm laughing, but it's all a facade.
I'm sure I'm not alone in how I'm feeling! I wish there was a chat room, I would sometimes love to speak someone who understands what I am going through!
Thanks for letting me rant
Prayers and love to all of you
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I was just diagnosed with local recurrence HER2+. I'll start TCHP January 31st. My questions are trivial compared to many of the other posts on this discussion board. I'm scheduled to go on a Caribbean cruise February 11 - 19. My second round of TCHP will be after I return. When should I predict hair loss (wondering if I should pack scarves and be prepared to come home bald)? How sick should I expect to be after the first treatment? I REALLY don't want to cancel this cruise, but I don't want to be sick during it. TIA for any info. you can provide.
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I agree that it sounds like your oncologist may not be that well versed on HER2. Reason I say this is because your oncologist thought that chemo works on HER2. It does not, it is herceptin and other new drugs that are in this family. Please get a second opinion.
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????
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Standard of care is to give Herceptin with a taxane, either Taxol or Taxotere. It is just not effective without the chemo component.
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I seem to get breast cancer every 8 years and am always diagnosed around the same time. First BC December 2007. Recurrence number 1: MRI December 2015 biopsy January 2016. Possible second recurrence: MRI December 2023 biopsy January 2024 (awaiting results). HER2 positive each time. Retired now so have plenty of time to go for second and third opinions. I’m also older and treatment will be harder on me. Didn’t get a chance to enjoy retirement as I retired just a few months ago. I’m here as a sounding board if you need to vent as I understand what you are going through.
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@bluesfan4life i have to agree with @sarahnh amout the timing thing. Also I want to say I am so sorry that you are living the nightmare of recurrence. When I was diagnosed HER2 + I knew that fear would be the foremost factor driving everything I do, say and decide. I share your level of cynicism surrounding the sheer crappiness of it all.
Anyway, I was diagnosed in 2022 and was told I would be watched/treated for 10 years before I was called cured. So I think the recurrence rates at 6-10 years for HER2 + affect the standard 5 years they usually say. Hang in there-be a couch barnacle sometimes, despair a bit then get back up and go again.
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@creativezoo @jonib Thank you for sharing. Wondering how you detected the recurrence? Did you have symptoms?
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@snm I haven’t had recurrence (yet) but I worry about it especially because I am not tolerating tamoxifen well at all. I was taken off of it for DEIP flap surgery last Feb and it’s the first time I’ve felt like myself since treatment began in 2022. I’m supposed to start it again now and I am really hesitant to do so. Therefore, I’m in that existential crisis mode of living miserably on the medication because I’m afraid of recurrence or gambling and living my life feeling like myself and just knowing that at least I’ve spent my time on earth the best I could. Which I realize sounds (and is) disrespectful to those battling recurrence….#thatHER2+Life
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@creativezoo that's a tough choice for sure. Quality of life should play a role in decision making but striking that balance is easier said than done. I hope your doc can offer some choices to help you tolerate the therapy better.
I had BMX as my tumor was micro 1.3 mm though DCIS area was large in the left. There was talk of additional radiation on the left but no real evidence to support it though it may help local recurrence, which was low risk already. I didn't want radiation based on that and the potential side effects (heart/lung/skin issues). Plus I had implants placed. That being said I still worry about local recurrence whenever I feel a muscle ache/strain in my left chest and wonder should I have gotten radiation. Not sure if I'll get over that with time but I can only hope.
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@snm I think that’s a fair approach to your situation though. But I know that doesn’t change that fear. I hope that maybe over time it doesn’t have to sit in the forefront of daily thought. Regarding the Tamoxifen, the only real solution that could be offered is trying a lower dose. Unfortunately, it’s not the medication specifically that I’m not tolerating but the change in hormonal levels. And since that’s the whole point, there is no way to avoid that. Sooooo, I’m sort of putting off restarting the meds - trying to enjoy this little window of remembering how it feels to be me. When I go back to work in April, I will go back to work on dealing with the Tamoxifen again.
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