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ER-, PR-, Her2+ Roll call

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  • moderators
    moderators Posts: 8,085
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    @ktmalhotra - Welcome to BC.org, although we are sorry that your recent diagnosis has brought you here.

    We know there are lots of questions and uncertainty right now, but we're all here to help you. Sharing your experiences and learning from others can be really empowering, so we thought you could also join the September chemo group, a safe space to connect with others who understand what you're going through. You're welcome to jump in there and say "Hi"!

    We wish you the best of luck with your first chemotherapy session on Friday. If there is anything we can do to help, let us know.

    Sincerely,

    The Mods

  • bluesky1969
    bluesky1969 Member Posts: 80
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    Hi;

    Not sure where to post about my latest from a PET scan report: "however, the right internal mammary lymphadenopathy is far more concerning, particularly given the patient's history, is highly suggestive of malignancy."

    I live on Vancouver BC. Biopsy on Tues am. Have been taking small doses of lorazepam all week.

    I looked up Internal Mammary Lymph Node on the boards but didn't see much. Maybe I'm too stoned haha

    I had a R Mx 2018, no chemo, no rads, Tamox for 3 yrs (couldn't tolerate), and 2 reconstruction surgeries.

    Pet Scan was Sept 7th.

    If positive, would that be considered mets? Please let me know which threads might be of assistance.

    Thank you ❤️

  • melbo
    melbo Member Posts: 266
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    @ktmalhotra — I was diagnosed at 41 and had the same treatment — chemo before surgery. All of it sucked , especially chemo, but it was never as bad as I thought it would be. I lost all my hair and felt like ass for a few months, but I was functional and after the first few weeks I figured out how to balance everything with the exhaustion.

    I strongly recommend reading through some of the more recent chemo boards and then seeing if you can find someone similar to you going through similar treatment.

    if you read through this thread you will find a few things I posted about stats for this diagnosis — which is actually very good. I’ve read that it’s only 4% of BC diagnosis, but one of the most treatable versions out there because herceptin and its bio similars are lifesavers.

    these boards were lifesavers for me when I was going through treatment. Good luck and check in as you need to.

  • ktmalhotra
    ktmalhotra Member Posts: 4
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    Thank you all for the responses. Very glad to have found this group of friends and this. It's encouraging to hear the treatments are very effective. I am one week in to my chemo and the exhaustion is real. I do have a burst of energy in small cycles but then back to being fatigued. I had also got flu/viral so that hopefully has worsened the symptoms.

  • harrow
    harrow Member Posts: 69
    edited November 2023
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    Hi all,

    Wanted to add myself to the roll call. Diagnosed with Stage IV de novo HR-/HER2+ with suspected mets to bone and liver. I’ve been told that I am what they consider to be a “difficult” case as they’re unsure of what they see on the scans are mets or not (inconsistencies between scans) but are erring on the side of caution and treating me as if they are. My full story is in my signature.

    I am on docetaxel, Herceptin and Perjeta. Once I am done with the docetaxel, I will continue on with H&P indefinitely. I am hoping for a complete response, and to push for surgery and radiation (this is a bit controversial for Stage IV). Hopefully I will see some of the longevity that others have on this first line treatment.

    I wish you all the very best in your journeys!

  • dutchiegirl
    dutchiegirl Member Posts: 76
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    Tomorrow marks my 5th year anniversary, from my date of diagnosis. Like so many, I didn't think that I'd be here to post this. But here I am. My life was immediately split into BC (before cancer) and AD (after diagnosis). My AD life has been amazing, once I got past the side effects of treatment. I'm an avid dragonboater on a breast cancer survivor team. I volunteer with a local cancer centre, providing peer support to those going through a similar journey. I now have two granddaughters and enjoy life with them. I work out several times a week and do my very best to enjoy my life. It isn't perfect, of course, but it's definitely VERY good. Please know that even those of with stage 3 BC (6 positive nodes) should have hope. You will get through this and my hope is that your lives will get much better!

  • moderators
    moderators Posts: 8,085
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    @dutchiegirl Congratulations on reaching your 5th-year anniversary since your diagnosis! You are truly inspirational, and your positive outlook gives others hope. Thanks for sharing your story!

    The Mods

  • minustwo
    minustwo Member Posts: 13,128
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    nevo - it's great that you're checking in. Wonderful news about your Mom. I had one recurrence in 2013 but fortunately everything has remained clear since then. This thread was extremely helpful when I was in treatment & HER2 positive was a scary diagnosis. Now there are good treatment options.

  • tycity
    tycity Member Posts: 1
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    57 from Long Island. Was diagnosed last week and am still in shock with no cancer in my family. Been preparing for heart issues all my life … not this. Life is a journey. ER/PR-, HER2+ that was discovered from a biopsy on lesions on my liver so METS happened and I guess that makes me Stage IV. Would never have discovered it had I not complained about my gallbladder which blood tests found the weirdness of my liver enzyme levels. Hope to start chemo this week, meeting with my oncologist tomorrow. Wishing you all power and hope for recovery. x

  • minustwo
    minustwo Member Posts: 13,128
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    tycity - welcome but sorry you had to join us. The good new is all the treatments available for HER2+ now. Good luck with Chemo.

  • moderators
    moderators Posts: 8,085
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    Welcome, @tycity. We're so sorry you find yourself here, but we welcome you warmly to our wonderful, supportive community. You are not alone.

    The Mods

  • mcbaker
    mcbaker Member Posts: 1,805
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    Praying for you, tycity. Also concerned about the heart issues. I had an echocardiogram every few months. I am sure they will monitor you closely, and there are some options other than Herceptin.

  • julieho
    julieho Member Posts: 164
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    Hi,

    I haven’t been on this board for probably 8 plus years.

    I thought I would just let everyone know that I was diagnosed with ER/PR- HER2+ stage 1, grade 3 breast cancer in May 2012.

    I had TCH with four months of TC and a year of Herceptin.

    I had weird pathology results because my results at my local hospital in Vt showed only HER2+ and when I sent my biopsy to Boston it showed I was HER2 negative. Meaning I was triple negative.

    The pathologist and oncologist spoke and decided to have it sent to Mayo and their test showed ambiguous results. It wasn’t clearly positive or negative.

    I had treatment with Herceptin as they didn’t want to risk my not having it if there was a test showing I was positive.

    I ended up with awful side effects from the Herceptin that I was told were not side effects at the time. I developed awful bone and joint pain which is expected during chemo but once I finished with chemo and continued on Herceptin for another 8 months my pain got worse and not better.

    I kept having bone scans for MEts but there was none. I was sure it was caused by the Herceptin but I was told that wasn’t a side effect.

    To my oncologist credit about a year after I stopped Herceptin when I was in for my 3 month check up she walked in with tears in her eyes and apologized for not believing me. She said in the 15 years she had practiced she had never had anyone on Herceptin have that side effect so was sure it wasn’t the cause but now had another patient with that and upon extensive research it is a side effect in less than 3% of patients getting Herceptin.

    I asked if she had believed me would that have changed her treatment and she said that when I was having even more pain two months after finishing the chemo drugs and it was clear it was Herceptin she would have discontinued Herceptin.

    she explained that it likely wouldn’t have effected how effective The Herceptin was because women often after 4 to 6 months have to stop Herceptin due to heart toxicity and they haven’t seen those women have worse outcomes.

    Sadly my bone and joint pain has remained and caused deterioration which has resulted so far in a knee and hip replacement and two shoulder surgeries.

    But, 11 years after being diagnosed ER/PR- and HER2+ I am still no evidence of disease.

    A girlfriend of mine was diagnosed with the same stage and pathology as mine and was treated with the same chemo and Herceptin and at 10 years she had metastasis to her brain and died six months later.

    That freaked me out because I thought once you were past five years with this treatment there is little chance of metastasizing.

    And that is the case. But like any statistic someone falls into the 1 or the 5%.

    I was in the less than 3% who had bone and joint pain and damage from Herceptin and she was in the 5% (I think it is around 5%, but it is really hard to find any info on anything past 10 yrs from treatment) of people who have their cancer spread after 10 years.

    We are so fortunate there are targeted therapies now for HER2+ because before that the life expectancy was 1 to if lucky five years life expectancy.

    I don’t think Perjeta was available in 2012 when I was diagnosed so I only had Herceptin but it is great that there are now two more drugs that target HER2+ and have had really good results even with someone who has their cancer come back and metastasize.

    Take care,

    Julie

  • mcbaker
    mcbaker Member Posts: 1,805
    edited December 2023
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    Thank you for your information. Better to play it safe. Yes, my Mayo oncologist told me that if I were to have to discontinue the Herceptin early, results would probably still be good.

    I have been celibate for years and years. Suddenly, marriage is a distinct possibility. I should have been using estrogen cream for another reason for a year or so, but haven't. Just started and hopefully my vagina will be functional by the time it is "needed." I am thankful that this is a possibility. And soy milk is ecologically responsible, and has fewer artificial ingredients.

  • kellylwolf
    kellylwolf Member Posts: 1
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    Anyone still active in this thread? ER-, PR-, HER2-positive (4.55mm) with 110mm DCIS removed with unilateral mastectomy, clear margins, no lymph node involvement. It seems that the clear guidance for herceptin is 5mm invasive tumors. Any similar cases?

  • moderators
    moderators Posts: 8,085
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    Welcome, @kellylwolf! This thread is definitely active, we're glad you found it and our community and we're sure others will chime in with their guidance and advice soon. We hope this place can be a source of support for you!

    The Mods

  • mcbaker
    mcbaker Member Posts: 1,805
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    Kelly, mine was like yours, and I had chemo as well as herceptin. Nice and early, we are the lucky ones, since it grows so fast. The DCIS that grows so fast because of HER+ is the red flag.

  • mssoda101
    mssoda101 Member Posts: 26
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    Hi Kelly… sorry you’re here… :( So are you saying they’re not giving you herceptin??? Are you currently in any treatment or was it just the surgery? I had a 9mm invasive tumor, no nodes, but had chemo and am on herceptin and perjeta for the reminder of my year. Technically I wasn’t at the tumor size or node positive for Perjeta, but my oncologist made a strong case to my insurance company…

  • jonib
    jonib Member Posts: 94
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    Hi - I am still here - on and off since 2007. My first cancer was Er-, pr- and Her2+. I was not given Herceptin. Went to two doctors at leading NY hospitals and they said no although I could have pursued and I am sure I would have been given chem and Herceptin. Fast forward 2016 and triple positive. Oncologists recommends Herceptin without chemo which I gladly accepted. 2024 cancer again er+ and my first Her2 negative! Guess the Herceptin worked but maybe I wouldn’t have cancer number three had I been given chemo.

  • snm
    snm Member Posts: 93
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    Thank you for sharing jonib! So interesting to hear everyone's stories.

    I'm hormone neg, HER 2+, large DCIS with 1.3mm microinvasion, lymph node neg. My oncologist recommended surgery with no chemo or radiation. So I had bilateral mastectomy w implants.

    Past few days, I have noticed pain only to touch of my rib near lower edge of implant on the side of prior cancer. Not sure what to make of it. I've been exercising more and hoping it's just from exercise.

    Does anyone have any insights on what a recurrence feels like?

    Many thanks!

  • mcbaker
    mcbaker Member Posts: 1,805
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    Some interesting stories. I had a followup appointment scheduled with my doctors office. Mammo followed by a visit with her PA. But my driver called in sick, and the agency didn't have anyone available. Rescheduled. A pink spot around the incision, but it has nearly disappeared.

  • minustwo
    minustwo Member Posts: 13,128
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    snm - I too have had some pain in my rib cage below the implant on the (right) recurrent cancer side. However I have a breast ULS every other year and it just showed clear, no problems & the implant is not leaking. It's been 12 years since the original implants so I'm making an appointment to see the plastic surgeon. My PCP suggested just a plain old X-ray of the rib area. My LE physical therapist suggested regular gentle massage of the sore rib area.

  • mcbaker
    mcbaker Member Posts: 1,805
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    Maybe a stitch is the source of the irritation, just like the pink spot probably is for me.

  • mssoda101
    mssoda101 Member Posts: 26
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    Jonib- Holy Moly have you been through it… I’m so sorry! But glad you’re still doing well!! Hopefully this will be an easy one to clear up and you’ll be back in no time! Are you going to have Mastectomy this time??

    snm- they aren’t doing any infusion meds for you?? No chemo, herceptin?? I also did have very sore ribs for a while after my surgery, I think it was the drain sites. I’m afraid of my own shadow so I’d just have them scan it just in case if it doesn’t go away soon! That way you can just ease your mind. You just can’t put a price on that. :)

  • snm
    snm Member Posts: 93
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    Thanks all for the advice! Though DCIS area was large with 1 microfocus of invasive breast cancer 1.3 mm, it was discussed that I only needed surgery. I was told if I had had multiple microfoci or if the focus was larger 5mm then they would recommend radiation/chemo. My lymph nodes were negative. Unfortunately I do worry that it will come back. My surgeon said that I had unusually vascular breasts, unfortunately.

    Re rib pain - under lower edge of implant (triggered by touch or by stretching my torso laterally)- I found a you tube video by "the breast cancer physio" Jen I believe is her name who actually talked about the common problem of rib pain secondary to limited rib cage mobility/posture/intercostal muscle tightness after breast surgery. Very insightful. I will be trying her stretches with foam roller and pectoralis stretches and see if that helps..I'm hopeful. If it doesn't go away, I will ask for a scan.

  • snm
    snm Member Posts: 93
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    Update- so my rib pain is due to mondors cord (superficial thrombophlebitis). I had this once right after my implants surgery. I treated it w hot packs and aspirin. Looks like the cord under my implant finally manifested itself, subcutaneous..and that explains the pain that I was having. Frustrating but I'm glad not a recurrence. I've read that usually this goes away on its own but may take couple of months. Warm packs, topical NSAID cream, and no bra for awhile..will see how that goes!

  • minustwo
    minustwo Member Posts: 13,128
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    snm -great news. Maybe I'll try heating pads on my rib pain.

  • snm
    snm Member Posts: 93
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    Good advice minustwo! Thank you!

  • djschmidt1
    djschmidt1 Member Posts: 43
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    Adding my name to this one ER/PR- Her2 +. DX on Dec 7 had my first TCHF last Monday Jan 15. I’m stage IIA with my cancer just over 2cm which won me adjuvant treatment. This week has been a tough one with side effects but my doc is working to make it better. I can say that just one treatment in, my lump has already shrunk (I can’t feel it anymore). This is tough but all your posts make me feel more at ease.