TRIPLE POSITIVE GROUP
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Lago.....
You go girl! I'm so happy for and proud of you! You are a wonderful and deserving public advocate for all of us .
I am just a little jealous that you get to meet your Chicago girls in person. I would love to have a person to person relationship with others who have gone before and perhaps help those who unfortunately will follow.0 -
lago - ACS needs to give you a paid gig. Listened and watched all the links - awesome job!
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camillegal, cracking up at that latest photo!
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Lago, just watched two of the links, will listen soon to the other. You did an outstanding job. Thank you, it helps to know you are getting the knowledge out there that funds must go to research! Ps, you looked fantastic!
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Lago - just watched your tv interview - you did a fantastic job, just as I would have expected! You talking about the ACS and the Strides Walk on this thread has made me more interested in doing that than the Race for the Cure. I did a bit of reading, and one source I looked at showed a greater % of the money ACS raises goes towards research vs. that raised by the Cure. Would you say that is true from what you know?
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hi ladies thanks for all the well wishes, starting to feel better for sure
any advice on sleeping? i can't get in/out of bed and the sofa with lots of cushions works for about 2 hrs and then my back is aching. My DH is picking up a recliner at my parents today, hope that helps
pbrain hope you are healing well
lago havent had a chance to listen but im sure it was great! thanks for advocating for all of us
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Lago, Wow- just watched and listened to all the links. Awesome job...Thank you for all you do. You look gorgeous.
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Camillegal, you crack me up!!!
Ok, I have good news. The pathologist called today. I am Stage 1, no lymph node involvement, clean margins. Now onto chemo! ugh....
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Pbrain-yayyyyyyyy!!!!!!!!!!!! Celebration!
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Pbrain--not in nodes that's a good, good thing. I'm sorry u have any stage tho---but we're all here for u, unless I'm watvhing something good on TV.
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I just got back my clinical results from my lumpectomy and see that I am triple positive. The oncologist is recommending chemo then radition plus hormone. I am HER2:2+ and there was presence of DCIS LCIS and infiltrating carcinoma but my tumor was only 1.5 cm and no ductal involvement. I just found out that the margins of the sample were not clear so I have to go back in for additional extraction. I feel I am being over treated and have resquested testing of the tumor to determine if the chemo is necessary. With the additional surgery and the testing ongoing I have time for some input. Does anyone have any recommendations?
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Your diagnosis and treatment seems similar to my own. Are you comfortable with all that follow up treatment?
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Hi major mom- welcome. I will only add 2 cents, as I am still on baby food and moving to toddler if I can get through some of these articles theses ladies post. Lol! You came to the right place. Give it a bit, and others will chime in. First off, I can say now, breathe! You have time. I suppose I would find out what test you had to determine HER 2+. FISH, or IHC test? Sounds like FISH though. Okay, as I said, baby food, others will chime in. I'm sorry you have to be here. But here is the best place to be if you have to.
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pbrain - Good News!!!
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Major mom-
Mine was also small and no nodes, I didn't want chemo but my MO ordered an Oncotype DX test that gives you a grade on recurrence. It helps us on the fence see the light. My came back very high at 68. So chemo it is.
But there are others here who know way more than me.....0 -
majormom - sorry you find yourself here. It may be worth your while to have another round of testing done to validate your Her2 status, if there is any question of equivocation. Having an Oncotype DX done is up to you (or your doc) but they are generally not done (also check if your insurance will cover this) with Her2+ because they typically come back high - and the assumption is that you will have chemo anyway. I am curious about the tumor size you provided. Does this encompass the LCIS and DCIS plus the invasive component, or is this the invasive component itself? If this is the total size, you need to determine how large the invasive component is. There is a gray area for chemo and Herceptin for those who have very small invasive portions - I believe less than 5mm. Some do have chemo and Herceptin, some elect not to. If the invasive component is larger than that chemo and Herceptin are pretty much a given due to the aggressive nature of Her2+ tumors - even small ones, nodal status aside. Chemo and Herceptin are typicaly given together because the Herceptin is thought to work synergictically when accompanied by chemo. There are some oncologists who will give Herceptin alone but it is usually done for patients who are very resistant to the idea of chemo, or who have comorbidities that preclude tolerance of chemo - and finding an oncologist who will agree to this may be problematic. Because you had a lumpectomy, radiation is also a given. It is done to eradicate any stray cells left over from the surgery and wound tract. If you are ER+ hormonal therapy is one of the best weapons available to stave off a recurrence. For most who post on this thread I don't think we feel overtreated - I definitely do not. I never wanted to look back with regret that I did not treat my cancer with all that was available when first diagnosed. This thread is full of women who have traveled this road - there is lots of great advice here, but we are not physicians - an oncologist you trust should be your best source of information.
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Thanks to each of you. I do feel better seeing others with my same diagnosis and recommended treatment.
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Yay pbrain!!!
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Thanks guys! I'm so excited to hear the news, even though I know the stuff coming up is no fun. I'm a seriously unhappy person if I can't poop. ;-) But I found this myself, and was even negative on a diagnostic mammogram, so I know my Dad is looking out for me. We lost him last summer and he is still watching over us.
Welcome Major Mom! You will be fine, just post here when you have worries, questions, concerns. And Carmillegal, as usual, you just crack me up!!!!
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Lago, you go girl! You are gorgeous!
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Major Mom welcome and please feel totally comfortable here, these ladies aren't just smart (not me) they are truly caring. Whatever advice they give is all good and make sure u think about everything and what u truly feel is best for u.
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Hi Friends, Hope you have a great Friday!" width="320" height="320" /> FOR U PBRAIN0 -
Thanks everyone. You are all so kind. I just photograph/TV well.
Dancetrancer Yes I am impressed with how much money goes to not only research but also helping cancer patients regardless of income… The ACS does it's best to keep costs down. They get lots of things donated as well. This even we managed to get 400 cupcakes donated and a photobooth just for the survivors tent for this event. The "gifts" they give to the survivors are small remembrance of the event (key chain with 3 different breast cancer charms). I remember Komen was ready to give me a hat, backpack, tee shirt etc. The 2 women who spoke about ACS on the links really do a great job explaining how the funds are used. Not wasted on branding.
SpecialK I did have a phone interview with ACS not too long ago. Lets just say every company has someone you would like to aviod. This one happens to be in recruiting. I don't believe my application was taken seriously. Too bad because the rest of the organization is wonderful.
Pbrain Glad you can join the no node club. Not as common with us HER2+ gals. Stage I is awesome.
MajorMom If you don't feel right then get a 2nd opinion but if you have IDC and are triple positive with lumpectomy the course of treatment sounds correct assuming the IDC is 1.5cm. Your tumor was probably bigger but they typically don't measure the non invasive parts (DCIS and LCIS) if you have invasive. My tumor was about 6 or 6.5 cm but the invasive part was 5.5cm. That's what they base your treatment on. Get the FISH test to clarify the HER2+ status.
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Lago, way to go! You look fantastic :-)!
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Thanks Lago for the extra information, I get more and more impressed with ACS the more I see and hear. I have started going to a Young Breast Cancer Survivor Group that is hosted at ACS. Last visit they said they like the members of the support group to take charge of running their own group in as many ways as possible - and one way was asking each of us to sign up to bring lunch for our monthly meetings throughout the year. They said we are not to purchase it personally ourselves, but find a restaurant that would be willing to donate lunch for our small group and then pick it up and bring it. That goes right along with what you were saying with keeping costs down by getting things donated.
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Welcome majormom. Sorry too. Specialk, Lago, and so many others who have responded to your questions are so knowledgeable, I can't tell you much else! But as they said, always check with your MO. You have found a good place to get information. Much love.
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lago - You did good!!
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Sisters, i'm asking for special prayers/good vibes/whatever tonight as I find myself in the hospital with serious bleeding from the rectum/colon, which started last night. My PCP ruled out my hemi's as the cause so I have a colonoscopy scheduled for 8am. My grandfather died from colon cancer (also had bilateral BC, by the way) so my parents are worried sick. I would have thought the whole body scan i had at first diagnosis would have caught any colon cancer, but maybe not. Just got my first cup of the lovely drink. Yuck!
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Nicky hoping for B9 polyps
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Nicky, prayers are headed your way. May you have the strength to handle whatever it is, and may whatever it is be b9 and easy to heal. Much love.
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