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ER-, PR-, Her2+ Roll call

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  • minustwo
    minustwo Member Posts: 13,128
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    I think part of it depends on our age. But I agree - after "x" years, I think we're pretty much in the clear. Today is the anniversary of my ALND surgery after chemo in 2013. EIGHT years. Yup I had more chemo after that AND rads, but... Of course the latent worry doesn't ever go away (oops, headache/brain cancer) - but I feel relatively safe after 8 years.

  • mcbaker
    mcbaker Member Posts: 1,805
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    Wow! Minus two you have been through it!! I hope we all die gently, and not from BC.

  • sarah_78
    sarah_78 Member Posts: 119
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    Interesting topic, I was right about to come here and ask for it. I had a check up on Monday and my doctor also said my type (hormon negative, HER2+) usually comes back during the first 3 years and if it doesn't, chances are very good that it won't. I wonder from when it starts, from diagnosis? From surgery? The end of targeted therapy?

  • melbo
    melbo Member Posts: 266
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    my SO said the counting date starts after surgery. So that’s what I will be going with, which means 2 years for me around Christmas.

  • sarah_78
    sarah_78 Member Posts: 119
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    Congrats melbo, you almost made it to 2 and 3rd isn't far away. I had my surgery February this year so marking that on my calendar then.

    There was a discussion here about having period or not during targeted therapy. Well I just woke up to that surprise, right when I was about to be declared in menopause since last one was about 11 months ago, right after the first chemotherapy (TCHP) and then I got shots to suppress it. Since surgery I didn't get any shots but didn't get my period either until now. I am glad I don't have the hormone dependance or else this wouldn't be good I guess. Like this it is fine I suppose.

  • melbo
    melbo Member Posts: 266
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    my period came back about a year after I finished treatment. I had periods for about 6 months, but my last one was MIA. I’ve always been pretty irregular so it’s still not clear if it’s just normal irregularity, if it’s the start of menopause, or if it’s just randomly gone again. The super fun thing of course is that there is no real way to tell — I either wake up one day and have a period again… or I don’t.

    At least my husband went ahead and got a mastectomy just in case once we realized birth control wasn’t an option anymore.

  • mcbaker
    mcbaker Member Posts: 1,805
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    vasectomy? Winking

  • minustwo
    minustwo Member Posts: 13,128
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    Melbo - I got a good chuckle about that also. Hope McBaker is correct.

  • melbo
    melbo Member Posts: 266
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    stupid spell check. Although at least it was funny. :

  • mcbaker
    mcbaker Member Posts: 1,805
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    It was funny because it was almost believable.

  • sarahnh
    sarahnh Member Posts: 105
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    Greetings to my fellow ER- PR- HER2+ cohort! I am just posting here to join the "forum" - I've read so many informative stories and posts here.

    My story for the record: My tumor grew around a known benign fibroadenoma, which I'd had for nearly 20 years. It was insidious - as the cancer grew, the fibroadenoma was simultaneously shrinking with menopause, so the palpable lump grew very slowly. I thought fibroadenomas never turn into cancer, so I didn't worry. It took about a year to become alarmed and get it checked out. It turned out the fibroadenoma had not really turned into cancer after all - it was found intact, right in the middle of the excised tumor after surgery. I hope this story somehow helps others avoid making the same mistake I did!

    I've had chemo (TCHP), surgery (LX then MX/AFC), and am now trying to decide whether to have post mastectomy radiation or not. All these decisions are hard!

    Sarah




  • bsandra
    bsandra Member Posts: 1,010
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    Dear Sarah, this is a horrible disease, and if you have enough health and stamina, you should have radiation. In my opinion we have to do everything possible to avoid recurrence. Sincerely, Saulius

  • sarahnh
    sarahnh Member Posts: 105
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    Thanks Saulius! It's a difficult decision, because it involves balancing the risks of recurrence versus the risks of adverse effects. Even the official guidelines have gone back and forth on this...

    From your profile, it looks like your Sandra had post mastectomy radiation. Do you feel it was helpful? Did she experience any big adverse effects?

  • bsandra
    bsandra Member Posts: 1,010
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    Dear Sarah, ah, I perfectly know how difficult the decision is and I am sorry you are in this situation. It would be great that doctors could make these decisions for us but... My Sandra's situation was really dire (stage IV de novo, with extensive liver mets, many LNs at level 1-3 affected), so I strongly believe we had no choice. That is why my wish is that "early-stagers" would do everything to avoid what we had to go through (and our story is not over yet - as for every stage IV patient it continues indefinitely). I have a journal where I document every day, and today is a 400th (yes, 400th, what a coincidence!) visit to the NCI in 5.5 years where my Sandra will get 92nd Herceptin+Perjeta injection. She also had 18 cycles of Taxotere, mastectomy, 25 cycles of whole chest radiation, separate lymph node surgery, lymph node Cyber-Knife, 38 ultrasounds, 32 CT/MRIs, 6 biopsies... and yet she is considered to be "the lucky one" in stage IV space. Do we feel that radiation helped? Absolutely. So far my Sandra has no long term side effects from radiation but such things as lymphedema can come years later, and that may be connected to her young age, although that is not the rule...

    You are right that that guidelines and science have no 100% answer, as data and results from multiple studies balances "on edge" but I strongly believe that every case is individual. From your signature I see that pathology shows grade 3 HER2, and if ki67 is high too (not in the signature), I would go for radiation. I hope you can have a good discussion with your MO and wish you all the best with this difficult decision.

    Saulius

  • mcbaker
    mcbaker Member Posts: 1,805
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    Bsandra, your (wife's) signature says triple negative, while she was her2+. I will be praying for both of you that the reports continue to be good.

  • bsandra
    bsandra Member Posts: 1,010
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    Dear mcbaker, wow, thanks a lot for your remark - my Sandra is strongly HER2+, so something has changed after site was updated and I did not notice it, as in user settings it shows HER2+. We'll see how to correct it... Saulius

  • mochipie
    mochipie Member Posts: 45
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    I just found out I have osteoporosis. Curious if any of you do as well. I tried searching the forum, but the triple positive people way outnumber us and have what seems to be a higher incidence of this because of their hormone suppressants.

    I'm not really scared per se, but I'm very frustrated with feeling like my body is so vulnerable. At the moment I'm grieving for the body and future I thought I had, which I had already come to terms with after much more profound grief at diagnosis.

    I'm curious to hear what meds you're on and any other treatment anecdotes. Thanks!

  • minustwo
    minustwo Member Posts: 13,128
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    Moochie - Thank you cancer!!! Agree - there are fewer of us who are hormone negative but HER2 positive. My last treatments after a recurrence ended 2014. But residual stuff never ends.

    Yes, I have osteoporosis. I go to an endocrinologist for a Prolia shot every 6 months.

    I have chemotheraphy induced peripheral neuropathy (CIPN). There are only drugs available to treat pain. I have totally dead feet & mostly dead finger tips, but no really serious pain. So no drugs. Good news/bad news.

    And I also have mild breast & truncal lymphadema - moving into my right (dominant) arm. The latter was caused by both surgery & radiation. Again, I'm fortunate that I don't have to wear sleeves & garments 24/7 - but I do wear a compression bra 24/7 and sleeves & gauntlets when I do repetitive motion or fly.

    I also agree that it's frustrating that all the things I used to do and many that I'd still like to do are now impossible. I'm quite a ways further along than you are. Most of the vulnerable moments have faded, but I'm still pissed about things i can no longer do. And of course the continuing medical appointments are really annoying, but.....

    Hang in there girl!!

  • mochipie
    mochipie Member Posts: 45
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    Thank you, minustwo. As it's finally the work week again, I'm assuming someone will reach out to me this week for the treatment plan. I have two petite friends, one with triple positive BC and one with no BC, who both get Prolia and have no complaints about it. I'm small framed as well, which put me at a higher risk category.

  • minustwo
    minustwo Member Posts: 13,128
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    My doc requires that I have blood work for Calcium and Vit D every 6 months before each Prolia shot - but I've never had any problems in 6 years. But you should get any dental work done before you start. There is a risk of osteonecrosis of the jaw with extractions unless you wait 3-5 months for the drug to leave your system before pulling the tooth. Not a problem for routine teeth cleaning & cavities.

  • bchrtquestion
    bchrtquestion Member Posts: 1
    edited March 2023
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    Hi! Does anyone know anything about the risks of Hormone Replacement Therapy (for menopause symptoms) for breast cancer survivors (double mastectomy) who were Her2+ and ER/PR-? Google is failing me. One oncologist told me it's fine, but that was a couple of years ago. And my breast surgeon recently told me no, because it increases risk across the board.

  • mcbaker
    mcbaker Member Posts: 1,805
    edited March 2023
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    I don't know, but when I decided to cut cow's milk out of my diet, my physician recommended soymilk, which contains some hormone-like substances. I personally saw no need for hormones for menopause symptoms. Menopause is generally a normal condition, let it happen normally.

  • minustwo
    minustwo Member Posts: 13,128
    edited March 2023
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    bch - over the years since I started this BC journey, I have always been told that hormone replacement was not a good fit. Just too risky for stimulating new BC. Edited to say - I agree - to err on the side of caution.

  • melbo
    melbo Member Posts: 266
    edited March 2023
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    my OB-GYN didn’t even want me taking BC anymore after my diagnosis even though my cancer wasn’t driven by hormones, so I assume hormone replacement would likely be right off the table.


    - Meliss

  • lavina
    lavina Member Posts: 3
    edited March 2023
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    Hi your reply seemed so helpful but I do have a few questions. I start chemo on the 5th of April and though I had BC 10 years ago thanks to my Oncotype I got to skip chemo and did radiation instead. This time though it's on my other breast and due to Her2 positive I have to do one round of chemo once a week with Paclitaxel for 12 weeks and the Herceptin once in 3 weeks for a year. Im super scared especially to loose my hair did my Microblading yesterday but my oncologist advises me against the cold capping. im also super worried about the neuropathy part. I feel so alone as if the people around me don’t understand me at all. It’s ok it’s just hair it’s going to grow back and I hate the pitying part from people. Like if you can’t give me strength atleast don’t pity me! I had my daughters wedding to plan on Jan of 2024 but I’ve had to put everything on pause for now as I don’t know how I’ll be by then…. Would appreciate some advice especially on the chemo part please 🙏🏻

    Lavina

  • melbo
    melbo Member Posts: 266
    edited March 2023
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    chemo sucks, but it probably isn’t going to suck quite as much as you think it will. Most people function okay and can still go out and do things as long as they consider how they feel, recognize their limitations, and don’t go too crazy. Most women work through the chemos we get for BC, although they admit it could be tough some times. There are a lot of supportive meds to help get you through it as well.

    I was under the impression that chemo would build and get worse and that by the end it would be awful — but my experience was the opposite. The first round was rough and I slept a lot while I figured out my support meds and how to avoid mouth sores, but by the end I was barely napping and had energy to do some things like normal.


    i always recommend reading through somw of the chemo forums on this site to see how various people reacted to the type of chemo you’re getting. Every person reacts differently, but it could help give you some idea of what to expect

  • minustwo
    minustwo Member Posts: 13,128
    edited March 2023
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    Yes, do go to "Active Topics" and look for the current chemo threads. As Melbo said, I worked, drove myself to chemo every time, and radiation, and took Herceptin for a year. It's not pleasant but it's 'doable'. Here's one of the sites I always used.

    https://community.breastcancer.org/forum/69/topics...


  • henrietta405
    henrietta405 Member Posts: 44
    edited March 2023
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    So sorry you are stressed, Lavina. I did lose my hair during chemo, but it grew back fine once chemo was over. I was also able to work through chemo. I just needed a few weeks to figure out when I would feel bad. IME, most people have side effects 2-3 days after the actual chemo so once you figure that out you can schedule things accordingly. I still worked, went out with friends, and did a lot of normal things on chemo.

    I’m a big supporter of advocating for yourself with medical professionals. Maybe ask your doctor why they don’t want you to have the cold cap. See if they give you an explanation that satisfies you and keep asking questions until you understand.

    I did have neuropathy on my very first chemo. I told the nurses and I immediately began icing my hand and feet. That did suck at the time, but I got through it and came out with no chemo neuropathy.

    I remember it was such a scary time and so unexpected and once the treatment plan was made so much was thrown at me. I had a great oncologist and I just asked questions about everything I needed to even if the were embarrassing or seemed dumb. My biggest question after we got through the medical stuff was “how do I pee when hooked up to the iv?” I felt dumb asking it, but the answer was easy - unplug the stand and roll it with you!

    Lots of empathy for you

  • aram
    aram Member Posts: 320
    edited April 2023
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    bchrtquestion, I have osteoporosis. I am on a baby dose of hormones. There are no specific guidelines. In my case, it was either accepting the higher risk for bone fracture and heart disease or slightly higher chance of recurrence (I had double mastectomy). I chose the latter and started on the baby dose.

  • minustwo
    minustwo Member Posts: 13,128
    edited April 2023
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    aram - a difficult decision for sure. Did you have a chance to discuss this with an endocrinologist? Both my Ob-Gyn & my MO said definitely no hormones and recommended Prolia for bone problems. I go to an endocrinologist every six month for one shot after blood tests for calcium & Vit D levels. I've been on it for 7 years and never had any side effects.