TRIPLE POSITIVE GROUP
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I am just a few months shy of being cancer free for six years..until I found a tiny lump in my armpit. I went today for a mammogram on that side, ultrasound and biopsy for a 1 cm mass that looks like metastasis. I was only able to take aromatase inhibitors for three years before the began affecting my liver. Needless to say, I am worried and a bit discouraged
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JamG -- Treatments can cause cancers to mutate some. For example, a metastatic breast cancer patient who has taken anti-hormonals for a long time may find that her cancer becomes ER-, thus rendering anti-hormonals ineffective as treatment options. But, I'm not personally familiar with how HER2+ cancer can mutate or how quickly.
gamzu710 -- Not everyone loses weight during chemo. In fact, because you're typically pumped full of steroids before/during treatment, you may be hungry for the first 2-3 days or so before the steroids wear off. I'd advise you to eat as much as you can manage during the "steroid high" (especially protein). Plus, hydrate, hydrate, hydrate! I got sick of water pretty quickly while on chemo and came to appreciate savory liquids like broth and soup.
Creativevintage -- Don't borrow trouble! Wait until you get your biopsy results and then you can freak out. If the cancer is just in the axillary lymph nodes, it can be treated with curative intent and won't be considered Stage IV. ((Hugs)) Waiting sucks!
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Thanks Elaine—I wrote that a few days ago, and I’ve since had time to learn more. My doctor explained that there’s not always consistent expression of the HER2 across any particular sample. She sent it for the FISH test, and I got it back today. It’s still positive. I really appreciate your responding to me!!
Gamzu—I’m so sorry you are going through this. It IS incredibly shocking. I started this process in February, and I’m still dipping in and out of shock. I have found this forum to be so incredibly helpful and supportive. I hope you will as well. And, I’m sorry that you (well, any of us!) have to be here.
CreativeVintage—I hope your results come back quickly and that the findings bring you peace. I’ll be thinking of you.
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I'm trying to do what I can to prevent neuropathy while on Kadcyla. Should I be icing my hands and feet during infusions? I didn't do it during TCHP, because I REALLY hate feeling. But going through all of this has made me more focused on minimizing symptoms where I can.
Any other things that might work for preventing neuropathy? Thank you!
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JamG,
Special K often recommends taking I-glutamine for neuropathy. As she wrote in another post, "I took 30g daily during my 6 TCH infusions, but it was dissolved in a cold non-acidic drink first. I also took B6 at the same time."
I myself never iced while on Taxol, but never really got serious neuropathy.
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CreativeVintage- We are here for you. Please keep us updated. I'll pray for a positive outcome from your tests.
Gamzu710- This is all new to me. I can relate to the fear and anxiety over chemo. I meet w/ oncologist 8/13 to learn my plan. Pre-op she told me 12 weeks pending results of pathology. I dread chemo and hormone therapies as well. I met with a nutritionist who is part of my medical team. She is available throughout my treatment. If you have not already- check with your care team to see if a RD will be available to you. Mine will monitor my weight, bloods, etc. along with my docs along the way. What others have said is true- I was told protein is critical. Plant or animal are fine, but focus on getting protein 3xs a day. Best of luck to you.
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gamzu, barbojoy - I was also terrified of chemo, but it turned out to be just not that big of a deal. I think the anxiety was waaaay worse than the actual treatment. My appetite didn't suffer, but my tastes did change as I started getting weird tastes in my mouth with the later infusions. On steroids I was starving all the time. I mean, two trips to Taco Bell before noon starving. I worked except for chemo days because chemo took all day, I worked out 5x/week. I was tired sometimes but still could do normal things, even on the days that were supposed to be the worst. I had to stay out of the sun because I'd get weird rashes, but still went running and hiking, I just had to cover up. Good luck, join a chemo thread, YOU WILL GET THROUGH THIS!!!
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Thank you! Ultrasound showed a single suspicious lymph node on the cancer side, about 1 cm in size. The radiologist took four stereotactic biopsies of the area, now I am just waiting for the results. I am a little bummed, I had just been released to the Mayo Survivor’s clinic about six months ago. I hope it is just that node. I have a bilateral breast MRI scheduled for next Saturday.
I was finally just starting to feel like everything was returning to normal. My neuropathy had improved and my lymphedema hardly bothered me any more
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thank you, Hap
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CreativeVintage- I’m sorry you have to go through all the waiting again. It’s tough enough one time around, I can image worse the subsequent times. Lots of love and light to you.
hapa- Thank you for sharing your chemotherapy experience. I hope to work through chemo if I can.I do have a couple questions for anyone who could help or perhaps know more about it:
1) I was wondering if anyone on here is highly ER/PR positive? I’m 91-100% ER &PR positive as well as HER 2+ @ 3 I believe. I was reading that there is cross talk between ER and HER2 making treatment more difficult. I have a referral to a MO (Im in Canada) so I have to patiently wait to talk to someone there about it. I prob won’t see a medical oncologist until September. I’ll be having surgery first so I won’t have a way to tell if treatment is impacting the tumour. Anyone have experience with highly ER+ tumours and treatment?
2) My biopsy came back as a Nottingham score of 5/9, grade 1 and Mitotic score: 1. Will this make treatment less effective or any info on low grade triple positive I should know? Is there a chance my grade will change?
If anyone out there has similar diagnosis, I’d love to hear the treatment- or do all triple positives basically get the same treatment? I think based on the info I’ll be an earlier stage? I am trying not to assume to much since I haven’t had surgery yet- it’s thurs where they will do a lumpectomy and sentinel node dissection. Any tips on that is also welcome.
Thanks for all the help and support! I appreciate this thread.
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1982M,
1) Yep, I'm highly ER+/PR+ (95%). However, chemo cleared out all the active cancer in my breast and compromised lymph node, so I'd say it didn't make a difference in my case.
2) As JamG learned, one's cancer can be heterogenous. Just because the sample taken for you biopsy was Grade 1, that doesn't mean that your cancer is consistently Grade 1. Some parts may be Grade 2. Yes, chemo works best on quickly dividing cancer (Grade 3), but that doesn't mean that it won't have any impact on any rogue cells circulating through your lymph system or bloodstream.
3) No, all triple positives don't get the same treatment. Increasingly, for small tumors like yours, triple positives do Taxol + Herceptin (and possibly Perjeta). For bigger tumors, the two most common treatments are Taxotere + Carboplatin + Herceptin + Perjeta OR Adriamycin + Cytoxan, then Taxol + Herceptin + Perjeta. You may have less access to Perjeta because you're in Canada.
Good luck with your surgery!
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Hi 1982M,
I'm also highly ER and PR positive >/= 95% for each, but mine on biopsy was grade 2-3, so a bit different from yours. Had my lumpectomy and sentinel lymph removed, and a chemo port put in Tues., and am waiting for pathology from those. My MO's plan for now is 12 weeks taxol, 1 yr herceptin, 6 weeks radiation, and 5 to 10 years hormone blockers, I think based on a 2015 (?) publication that showed this to be 97 or so percent effective in reducing the risk of recurrence in 5 years for early stage, her2 positive breast cancer patients. Chop it out, poison it, burn it, and starve it feels a bit like an overkill, and it scares me, but apparently it works really well most of the time, and the alternative is terrible, so I hope it does work for all of us, and with as few bad side effects as possible. My very best to you.
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Creativevintage - and others awaiting results, sending positive vibes your way. Waiting for test results is hard. I found that keeping busy on other things helps to keep my mind occupied.
gamzu710 - best of luck as you begin you treatment journey. Increasing your protein might help you to maintain weight if you start to drop too much weight. Many centers have nutritionists available to consult on specific dietary needs.
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Thank you everyone again for sharing your knowledge and experience. It makes facing breast cancer a lot easier and helps me feel less anxious about what is coming.
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I'm having a diagnostic mammogram on Tuesday, less than 2 weeks out from my lumpectomy. How bad is this going to hurt? It wasn't a huge amount of tissue removal but there's a tender area of hardness around the incision site and a collection of blood that gravity has sent to the bottom of that breast that's making interesting colors. I've never had a mammogram before (which I realize sounds odd on this forum; my diagnosis process has been a bit backwards) and I can't imagine that squeezing my breast hard in this state isn't going to hurt a LOT. And that whatever hematomas or blood are collected in there are going to mess with the imaging. Am I wrong?
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So sorry to hear this. I can't imagine how they could do this or why.
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I cannot imagine why two weeks out you are having a diagnostic ? Why not an ultrasound? Perhaps a seroma that could be evacuated by your surgeon?
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Racheldog makes a good suggestion. It only takes a few minutes for your surgeon to drain your seroma. I would ask for that if a mammogram is really necessary.
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Thanks, all. Glad to know my musings weren't stupid! My surgeon is out of the country this week but I am going to go into the mammogram on Tuesday with pointed questions for the technician and radiologist before we proceed. The surgeon is highly experienced and well-regarded so I'm going on the assumption right now that she knows what she's recommended and it will be OK, but I would like answers to satisfy myself that this is all being taken into account.
My diagnosis path was: palpable but small lump to focused ultrasound of lump to needle biopsy to excision, so mammogram has not been part of the process yet. I also have an MRI referral for next week and it does make sense to me that they need both these image studies, as it feels like there is a big hole there; who has BC treatment with zero mammograms ever? We need to know if this cancer is multifocal or if the other breast is involved or worse.
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Preliminary biopsy results are in. There are a few fragments of infiltrating carcinoma with no evidence of p63 or calponon (whatever that means). I will talk to my doctor via video chat on Wednesday and am scheduled for an MRI on Saturday to see if it is anywhere else.
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Creativevintage- I'm so sorry. I was hopeful for you to get a benign result.
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creative - P63 and calponin are biomarkers in the myoepithelial cells that help differentiate diagnoses of radial scar, papillary lesions, sclerosing adenosis, ADH, DCIS, and IDC. Think of it like info that helps determine hormonal receptors, Her2 status, or Ki67. Absence or presence helps the pathologist figure out what they are looking at in the tumor sample.
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I'm sorry creativevintage.
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Special K, thank you so much! There were papillary characteristics to the cells that they did find. I was hoping it was just a scarred node, but I have to be realistic. The thought of more chemo does not thrill me, as I had neutropenia a few times, but it’s doable. I will find out in a few days whether or not it is HER2 positive or negative this time. It is 70% ER positive, 70% PR positive, the same as before. I am encouraged I made it almost six years after only having 4 lymph nodes removed, so I hope it’s localized, I get rid of those extra nodes, get through chemo okay and I will be done with this! The good thing is that I work from home now, so it might be easier to continue to work through this. I worked as much as I could last time, but it was rough
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creative - if it is helpful, I have seen some folks with exactly the scenario you have described. I will keep my fingers crossed for a localized recurrence that can be handled as you just laid out. Did you have Neulasta the first time around? Agree, working from home should be helpful, but I also hope your employer is flexible if you are not feeling 100% at times - it is to be expected. So sorry you are facing this again.
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Thank you Special K. I work at Mayo Clinic and they were fantastic last time. They gave me extra paid leave beyond short term disability and my coworkers supported and helped me through every day. Even though we all work remotely, we all live close to each other and I know if I need anything,they will be there, as will my closest friends. Funny thing, I just moved in September to a smaller house and finally got rid of my wigs. I guess I will have to order some new ones! I am holding on hard to the hope that this is a local recurrence.
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I'm sorry you're back in this place after 6 years. Keeping fingers crossed that it's local and small. The good news is there's a lot more treatment now and more coming down the line. We know have Kadcyla and Nerlynx available as treatments.
Please let us know what the MRI says and what your plan is going forward.
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I just had an excellent conversation with my doctor. She advised that she is still waiting for the HER2 results, but the tumor is strongly ER\PR positive. If I am HER2 negative this time and this is limited to the axila, they will do a mastectomy and ALND and no chemo. Please pray
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prayers for you creativevintage
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Creativevintage - prayers and healing vibes coming your way.
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