TRIPLE POSITIVE GROUP
Comments
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Hi Ladies-- I just got home from seeing my MO for my 6 month check up. I have had some tenderness above my lumpectomy scar for about a month. My MO said I have lymphedema in my breast- she measured my arms and examined my range of movement which are both good. She said there is some fluid build up above the scar line.. Has anyone else had this? There is nothing that can be done for this. I asked if it would get worse but she didn't know. If it gets worse she will order physical therapy. The side effects of BC never end !!... I can live with this but just wondering if anyone else experienced this..
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Eileen - I would ask for the PT consult anyway - people with breast and/or truncal lymphedema often use compression - usually a tank or camisole - to help with swelling, and I am not sure why manual lymphatic drainage would not be beneficial for you. You need to find a lymphedema certified PT so you can discuss this with them and get an opinion, they can also show you how to do the massage and tell you about garments. In all honesty, oncologists are not the best source of info on this subject.
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fluffqueen -- There was a story in the New York Times in the past few days about the inaccuracy of biopsies regarding DCIS and atypia. However, the article also noted that biopsies are generally accurate at finding cancer and distinguishing it from healthy breast tissue. It's the "in between" conditions that produce inaccurate diagnoses, and yes, if you have one of them, a second opinion certainly seems to be in order.
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Thanks SpecialK. I am going to call my breast surgeon to see if draining the fluid is an option. If not I will get a PT consult. I want to prevent this from getting any worse.. Funny thing is that last week I was doing some research online for scar tissue ( I thought it was scar tissue) I found an article that says to message the scar tissue-I did massage it for a few days and found that it did feel better..I am going to start to message the area everyday to see if that helps..
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Eileen - you can drain a seroma, but not lymphedema. A seroma is a collection of fluid in one area, but lymphedema is fluid within each cell in an area - not possible to drain.
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SpecialK Oh darn!!! My MO said it could not be drained but I was hoping.. Thanks0 -
Eileen - that is why the compression works fairly well for this - keeps the individual cells from filling with the fluid.
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Thanks SpecialK I have a compression bra that I saved from my surgery. Don't know why I hung on onto it ,now I am going to wear it a few days to see how it goes. Thanks you,thank you thank you.. You are the BEST !!!0 -
HI all, I've been following this site for a while now. It's nice to have somewhere to go and read about others with some of the same stuff going on. I haven't taken the time to add my history yet, but in short, I was diagnosed just about a year ago, triple positive , lobular , stage 2, found on a annual mam! No lymph node involvement!! 4 treatments of A/C, 12 weeks of Taxol and Herceptin, finishing in Nov. Herceptin until Aug. No rad! And on Arimidex. My question, concern is I did not have Perjeta. I really wasn't aware of it until I started reading this forum. Should I ask my MO about it or is it to late to start??
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buz - for early stage breast cancer, 2cm and larger, Perjeta is approved for neoadjuvent use with Taxotere, Carboplatin and Herceptin per the FDA. Some oncologists have been successful giving it adjuvantly, but it is given with chemo. It may be difficult to get it added in now that you are on H only
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I have fluid near my scars my surgeon told me to wait till too painful to drain because of infection, mine are new from January or go to the radiologist and she can drain also. I am waiting cause they have been manually drained once already. Not too painful yet
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I have tried the compression camisole/bra and it eventually got to tight later in day, I may try again, but it does get painful from the swelling then it has to come off..thinking on this one
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Eileenohio It's best to treat lymphedema early. I have it in my arm and so glad I caught it early. Check out these threads: https://community.breastcancer.org/forum/64
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I actually do have some truncal and breast lymphedema besides my arm. And yes compression does help. I did have a seroma in the beginning, and it was my lymphedema therapist who actually knew that it was a seroma(a collection of fluid in a space) it got drained once with a syringe, not painful. If you can't find a lymhedema therapist right away, a gentle self massage does not hurt, and actually can feel quite good. There are some women on youtube, from the university of michigan, I think her name is heather, where, she does it closest to how my LE therapist did, and it feels plain good.
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It could be fat necrosis under the scar, I have that too.
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Thanks everyone. I am waiting for my MO to call with a referral to a lymphedema therapist. I do not want to risk this getting any worse..I do have one more question-- could the breast lymphedema progress to my arm? Gosh I hope not!!Tomboy- I did ask my MO if it was fat necrosis or scar tissue --she said no..
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wore my compression cami today while having 2nd chemo and all that fluid today, feels pretty good, removing it while sleeping and will wear again for a few days, maybe won't have to have it refrained. Another question, I learned today there are 2 hercepton diagnosis, did not get an explanation, but does it refer to. Hercepton negative and the other Her 2 positive ? Or is there a hercepton 1 and a hercepton 2 positive.? I think that is what I heard,but I was told to talk to oncologist for explanation. Ok nite all
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SpecialK, thanks for your response. I met with my MO today (Herceptin infusion) and asked her about Perjeta. She said it's still "new" a lot of studies still being done. At the time I started this journey, with my results (2.2 cm + .8 cm , grade 1 Stage 2) the path I decided to take (double mastectomy, immediate reconstruction, my daughter was getting married in a little more than a month) it was not something that she considered. With that said, as the results come in, she says , who's to say they don't suggest giving it at a later date? There are new drugs being tested everyday, we are so very lucky the have come as far as they have!! Thanks again , hugs Buz xoxo
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Weird my doctor does not do Perjeta she said it's to new and under trial yet. Hmm and a lot of you are doing it already.I don't get it. Is this a east cost / west cost thing?
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ang, it looks like you've been done with chemo for awhile. Perjeta is part of a chemo regimen (I did it with Taxol and Herceptin); in my case, I did it prior to surgery to shrink a big (5 cm.+) aggressive (Grade 3) tumor. I don't think I would have gotten it if my tumor were smaller or were Grade 1.
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ang, I think ElaineTherese is right. When you had chemo, Perjeta wasn't approved for neoadjuvant use the way it is now, if I understand the timeline correctly.
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I had Perjeta in my regiment and it worked wonders. I would definitely recommend neoadj to anyone who is choosing between pre and post surgery chemo. To hear PCR once surgery was complete made the entire journeys worth it.
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I love to hear so many talk about pcr with Herceptin and Perjeta. Even though I didn't do neoadjuvant treatment, I feel pretty good about getting both those treatments. What I want to see in the next five to ten years is a high percentage of women who don't have recurrences after getting pcr. There is another poster who talked about getting pcr but it still came back. That made me a little nervous. Of course she did not receive Perjeta.
Edited to add that there are many women who haven't had recurrences and just received Herceptin. Some didn't even receive that. I didnt want to make anyone feel bad about notgetting Perjeta.
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so what does the perjeta do exactly, my tumors were small under 2 cm. I am still trying to understand it all? One more thing, I have her2+. But is there a hercepton 1 positive? I am getting that notion, and that her2+ is the more aggressive? Or am I just confusing hercepton negative? My chemo nurse said I had to talk to the dr to clear this up.,
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Her2 stands for human epidermal growth factor receptor 2. If you are positive for her2 it is considered a more agressive form of cancer and its what earned you a seat in the chemo chair. Herceptin and Perjeta are targeted chemo treatments for her2+cancers. The small size of your tumor may be the reason you weren't offered these, your doctor can explain.
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There is nothing called Herceptin positive or negative. You are either Her2 positive or negative. There are three numbers to show how Her2+ you are. 1, 2, or 3. 1 is considered negative, 2 equivocal, and 3 positive. Herceptin is a targeted therapy drug that is used to treat Her2+ BC. I believe your tumor needed to be 2cm to receive Perjeta.
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At a BC conference I went to at Penn, the main MO that spoke said that Her2 did have two evil step sisters. Her1 and Her3. They just don't know the significance of them yet.
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Thanks for the info Bren, I googled to understand this better and found there is a family of HER receptors, 1,2,3 and 4. That's why I love this forum, always something new to learn!
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I'm triple positive as well and only 6 days into tx. Getting Herceptin, Perjeta, Taxotere and Carboplatin. Having some bad GI issues but managing after starting on larger doses of Imodium. Would like to join your thread. Had DCIS in the same place in 2011, opted for unimx and then had a recurrence this Feb! Hard to comprehend how a 100% ER positive tumor and morph into a mostly HER 2. Kind of scary.
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