TRIPLE POSITIVE GROUP
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Hello everyone. Im newly diagnosed with left sided breast cancer. I found out yesterday my tumour is triple positive. The biopsy said it was 5/9 on the noghtingham score - so grade 1 (mitosis was 1). I got no other info on it though.
It’s all so new and a bit overwhelming at the moment. Im 39. Married with three kids (14, 8, and 4). I work full time at a community college as a faculty. I also am a doctoral candidate. I meant to be finishing up my dissertation this summer, but that’s definitely not happening.
My surgeon shared the plan with me yesterday. I was paralyzed between a lumpectomy + radiation, Oncoplastic reduction + radiation, or unilateral mastectomy. The surgeon said we could start with a lumpectomy and then hop into chemo and gather more info to help me decide (genetics & sentinel nodes at least).
So far I don’t have a surgery date. The lumpectomy will be within 3 weeks. Then 5 weeks after that I will start chemo and herceptin. The resident said a year of chemo? I think it’s likely 4-6 months of chemo and a year of herceptin? But I don’t know much about that part until after. They also said 5-10 years of hormone blockers.
One question I am really wondering is what will work be like. My work is very supportive but I don’t know if I’ll be able to work during chemo? Any insights from anyone would be great.
Thanks for sharing your experiences. Reading through some of the post, especially survivors, has made me more hopeful.
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1982M - welcome, sorry you are in this particular club. Yes, the chemo part is a duration of months depending on the regimen you are being offered, with the Herceptin continuing for the balance of the year. Herceptin is not chemo, but rather a targeted therapy. Most find that once the chemo+ Herceptin is done that when you move to the Herceptin only infusions things are much easier, definitely the case for me. Do you have any specific questions those of us who have gone through this can answer? There are definitely folks on this thread who have been able to work through chemo - a lot depends on your job and the requirements you need to fulfill on a daily basis. I was working prior to diagnosis - in healthcare - but did use FMLA and short/long term disability because I had some surgical complications, and additional surgeries, that made chemo more of a slog. I was able to return to work 30 days after last chemo, while on Herceptin only.
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1982M,
I also teach in higher ed, and I worked through chemo. However, my course load was 2-2, not 5-5, which is common in community colleges. Also, my department chair allowed me to ditch my committee responsibilities and let me work at home on the days I didn't teach. Finally, I located colleagues who were willing to pitch in and teach my classes if I couldn't. I never needed a substitute, but I felt I needed to be prepared, just in case.
That worked for me, but it wouldn't have worked for everyone. Some people get all the side effects; I was lucky and didn't get very many. You don't know how you'll react to chemo until you start treatment. Herceptin was not a problem for me at all; I had zero side effects from that.
I did choose lumpectomy because I didn't want to do reconstruction and because I didn't want to go flat. (Reconstruction can take multiple surgeries as Special K knows very well.) Recovery was fine; in fact, I taught classes the day after my lumpectomy. Again, I may be one of the lucky ones, so you never know.
I'm sure your dissertation committee will understand if you don't finish up this summer. I didn't undertake any research projects during my "breast cancer" year, and it was what it was. ((Hugs))
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Thank you both for sharing info on working through chemo. My work place is very supportive so hopefully I’ll be able to teach even part time.
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HI there 1982M!
You are at the scariest stage (the not-knowing). I had lumpectomy, 12 taxols and herceptin to round out the year, radiation and now on tamoxifen, so prob the same as what you'll be getting. I worked thru whole thing! I was fearing the worst, and at least for me, it was not terrible. I even requested a stand-up desk at the hospital and worked DURING chemo. You can do it! ; )
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Umakemehappy, how did you do on just the Herceptin? I start that Monday and am terrified of feeling as bad on that as I did on chemo. I was trying to ask on other sites how people did on Herceptin monotherapy alone? I live alone and am just in a worry about this. Asked the onc. to run the first one over 2 hours and she agreed. What do you all think of Herceptin tolerance?
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Racheldog - I have had 3 herceptin (kanjinti) only treatments and other than being a little tired I’ve had no side effects.
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I had no side effects with Herceptin. AI's were a different story!
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Thank you both on the last two entries. You are making me feel better about Monday not being "D" day or incapacitated. Appreciate the experiences of others. I was sick Kadcyla which really spooked me for Herceptin. Thank you.
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Herceptin just gives me a runny nose, for the most part its easy peasy
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Hi, Everyone, I had my lumpectomy and removal of 6 lymph nodes on Tuesday. My pathology report came back today. The TCHP definitely worked, I now only have residual disease in one of the nodes. It was all gone from the tumor and other nodes. I’m assuming that means Kadcyla with the HP next. I see my oncologist on Monday.
One question: when I was first biopsied, I was strongly HER2 positive. Now pathology is saying my HER2 status is “equivocal.” I believe they are forwarding a specimen for additional testing, but can anyone tell me anything more? Can this status change as a result of treatment? If I’m no longer HER2 positive, how does this change treatment moving forward? I’m trying not to worry about it all weekend! Thank you!
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Hi everyone, sad to be joining this group but happy that it's here as a resource. I had an excision biopsy on a lump that the needle biopsy labeled ADH and it turned out to be triple-positive IDC. I just found out Tuesday. The lump was 6mm and also had DCIS, and there was another DCIS identified nearby but the lumpectomy margins were clean.
Since my diagnosis came about kind of backwards, I'm now awaiting MRI and diagnostic mammo to see if there is anything else in there, then will have sentinel lymph node biopsy, then start chemo. Also being sent for genetic testing because I'm only 33, though there's no family history.
I'm still in the stage of alternating between shock (those 5 seconds after I wake up in the morning and before I remember what's happened are great, then it all comes crashing down), terror of chemo and upgraded staging and metastasis, denial that I'm now in this club, and a calmer sense of "OK, this is the path life has suddenly taken, let's get this show on the road."
I'm really worried about chemo. I've been very skinny my whole life and am currently sitting at a BMI of about 17, before we start anything. I don't have any cushion to lose weight. My appetite has always been picky and finicky even on the best days and it takes very little to put me off. I'm afraid I'm going to basically starve and it's going to make my outcomes worse. But I guess I'll cross that bridge with my team when we come to it.
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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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