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HER2+ Recurrence



  • bluesfan4life
    bluesfan4life Member Posts: 22

    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.

  • melbo
    melbo Member Posts: 266

    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.

  • bluesfan4life
    bluesfan4life Member Posts: 22

    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.

  • sarahnh
    sarahnh Member Posts: 103

    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.

  • dontwantthis
    dontwantthis Member Posts: 17

    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