How much does Herceptin improve HER2/neu + prognosis?
Comments
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Thanks Ladies. It will be what its meant to be:)
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IHi Everyone,
I have a question, I noticed that many of the women have had mastectomies with stage1 grade 3 small tumors that were HER2 positive with no nodes involved. This is what my diagnosis was and noone suggested mastectomy to me. Both surgeons I saw said "lumpectomy" and never even mentioned mastectomy. I was thinking maybe it is a matter of age, are most of these women very young?
Nancy
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Hi Nancy
I had a double mast and as you can see by my sig line I had a small grade 3, stage 1 no node, no LVI tumor. I went to highly respected panel and they could not answer either way but I asked 2 of the female docs there (surgeon, radiologist, once) what they would do if they were me and they all stated mastectomy. We have a pretty good prognosis with this aggressive cancer due to Herceptin and I don't have ANY scientific research to back up my next statement but I will tell you I have been reading these boards for 3 years and every time I see a local recurrence it is from a lumpectomy and they always say they wished they would have done a mast. I was 42 at dx and never looked back on the surgery, I missed my hair more than my breasts. Of course there are reasons to keep breast tissue but with a grade 3 her2 tumor those cells move fast and you just can't always see everything. I wanted to do everything I could to keep cancer free.
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To myesan22:
So sorry to hear you've had another occurance, so soon, but it probably was there and not visible yet. When I had my surgery they found a second very small in-situ tumor adjacent to the one that was seen on my ultrasound and it did not show up in any of the mammos/numerous ultrasounds and the MRI I took before surgery. That is why I had wanted to have a special mammogram called: Breast Sensitive Gamma Imaging. (You could also do a PEM Scan-like a PET Scan of whole body, but just to the breast.) These are very sensitive cameras used with radioative contrast dyes that can see thru dense breast tissue and can see very small abnormalities--in the case of the Gamma Imaging, as small as 1 millimeter!! Ask your Dr. about these tests. My doctor was on vacatopn and didn't okay the test for me in time before surgery, but I will have it after chemo is over.
I wish you all the best, and keep positive and keep fighting!!!
Nancy
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Nancy - I have wondered about that as well. I had no previous understanding of bc, and was in total shock when dx. So the surgeon said "You will be having a lumpectomy" and I said "Ok" and that was that. She also said "You will be having chemotherapy, radiation and a year of Herceptin" so maybe the lumpectomy just blended into that big long list. And I never questioned it at the time at all.
But then I went to a bc support group down in Baltimore, and of the 7 ladies at the table, I was the ONLY one with my own breasts. And I did start to wonder.
I have a friend on this site who is from CA, and her surgeon was part of the "breast preservation project" at UCLA (I thikn that was the name of it) where they try to do less mastectomies. She was her2+ and had a lumpectomy as well. Supposedly the life expectancy for lump vs mast is the same. But I tend to drown in statistics, so I can't back that up.
I know that I am glad I have my breasts (although in the beginning, I did have strong impulses to tell them to 'just take them both OFF' and I was sure I would never feel comfortable with them again. But I do. I guess time does heal all wounds. Now if I can just stay cancer-free and enjoy life, all will be perfect.
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To AmyIsStrong: Thanks for your answer. It is always a dilemma. But I have heard that prognosis is same for lumpectomy as for mastectomy, but others say differently. Who knows--lets just be positive that we will beat the disease with chemo/ Herceptin and radiation. If we can get thru 5 years without a reoccurance, they will probably have new drugs and new treatments to combat even further!!! I hear they may be working on a vaccine.
Keep positive!!
Nancy
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I went with my BS recommendation of a lumpectomy for my multifocal BC.My path showed stage 2 Her2 with positive nodes and at no stage have any of my medical team suggested a mastectomy, I was 39 at Dx. After completing Chemo and Herceptin I am very glad not to be facing further recon surgery.
I'm coming up to 2 yrs since dx in Feb, my Onc is really positive about Her2 BC treatment and gives me the impression that I will never have to worry about BC again (here's hoping).
I finally feel really fit and healthy again and don't have any long term SE's from treatment, it took a good while after finishing Chemo for the neuropathy pain to go and my joints to recover.
In some ways BC gave me the kick up the ass to get on and live life to the full, I was very good at making excuses to put things off. I'm having so much fun trying new things and travelling to new places, the bank balance is hurting but life is good!
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Good for you LouLou40!!!
We all often forget to LIVE life and we hardly enjoy ourselves, just plug away at the mundane. Well, I always say tomorrow is another day and another chance!!! We have many, many, many more tomorrows and we will enjoy them all!!!!
Keep positive.
Nancy
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Hi ladies,
The overall survival prognosis is the same for lumpectomy with rads as a mast, however the risk of a local recurrance goes up slightly.
My surgeon left the decision to me, but I knew little at that time and chose a lumpectomy and I'm still doing fine five and a half years later and thank herceptin for that:)
Tricia xx
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Ditto what Tricia says. In my case my 5.5cm tumor in my large A small B cup wasn't going to give me an option of lumpectomy. Now knowing what I do about dense breast tissue (which is what I had) I'm glad I didn't have the option.
Remember many women are given the choice but decide they want the mastectomy.
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TriciaK is correct, statistically, lump+rads = mast BUT those stats are for single tumors not multifocal. For multifocal, multicentric the equation is tipped in favor of mast. No matter what, it's really what you're comfortable with doing.
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My profile sort of explains it all. I found out I had breast cancer and because of family history I want them off no matter what the size the tumor was. I was also told that a lumpectomy is what I needed. It was me who said, "What about a double mastectomy?" My BS said, "If you are mentally ready for that, you would be a good candidate" He also didn't think there would be lymph node involvement. I never did ask if I would've ended up at least a single mastectomy anyway after they found out one lymph node was involved.
The one thing my Mom remembered in talking with my BS. He never did talk about a mastectomy with no reconstruction. (my mom wears a prosthesis) she was surprised that he didn't offer that as an option. I dont know if it's because I'm younger than most BC patients or he didn't feel from me that it's what I wanted. He was right however, reconstruction was a must for me.
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keeppositive,
My mom's BS recommended a lumpectomy. After the biopsy results came back with no clear margins she went in for a re-excision. The second biopsy also came back with no clear margins. The BS said that he could go in a 3rd time but being that Her2 is so agressive, my mom choose to have a mastectomy.
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Diane1960 - That's almost exactly my story, too. My second biopsy showed not only dirty margins, but also another 7mm IDC tumor that had never been seen on mamo, US, or MRI. My BS also said she'd do another lumpectomy, but I chose a unilateral mastectomy at that point - who knew WHAT was in there??!! The final biopsy showed nothing but a few residual cells in the lumpectomy cavity, and I know my BS felt bad that we hadn't "tried again," but I was just relieved and have never regretted my decision.
3 year cancerversary in about a week, and doing great!
Sue
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keepposit....i too went for the lumpectomy.My surgeon was from MSK.and she gave me 2 choices,I was going for the mastectomy,and I read between the lines as she was talking to me,she felt I didn't have to go that drastic.I thought I would give it one chance for clear margins,and they were.I also did have a full axillary dissection.I couldn't belive how aggressive this cancer was.I go yearly for mammos.
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Nancy: Thanks. I got my results back from my biopsy and they showed atypical hyperplasia. Although not cancerous, this can be a precancerous diagnosis and I have decided to get a mastectomy. The report also said the atypical hyperplasia was from radiation-induced therapy and I haven't had radiation yet! I will feel better not waiting for the next shoe to drop especially as two radiologists who looked at my mammogram stated it was cancer. For me I'd rather lose this breast than have a full-blown recurrence!
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Hey, Keeppositive, in another thread a woman has posted links to two studies showing a 0% recurrence rate for stage 1 HER2+ node negative BCs *treated with Herceptin (maybe TCH too?).
The thread is located here: http://community.breastcancer.org/forum/80/topic/763528?page=1#idx_3
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Hi, I was a stage 1 also, with no nodes, and had a matecomy. I was er , pr , negative, her2 positiive. My tumor was very tiny so no treatmetn other then surgery. Did you do H?
hugs,
cookie
You can email me bmmargie@yahoo.com
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My mammogram found microcalcifications that were surgically removed. Lesion was fine, but LCIS showed up. They told me to take tamoxifen for 5 years. I settled in on a breast specialist who wasn't happy with that answer. Said LCIS just screams danger, danger. She ordered MRI which showed another spot right near the other one. Did an ultrasound biopsy. All clear. Next day she called and said that she and the pathologist weren't happy with that as they thought it was too clear, so off to another surgical biopsy. Turned out to be very small IDC. I chose bilateral mastectomy as my breast were very dense and hard to see.
BS said that survival rate is the same for either choice of lumpectomy or mastectomy (7%) but recurrence rate is higher with lumpectomy (up to 15%).
After the pathology report from mastectomy came back, all was clear except it noted that in my uninvolved breast there was a non-cancerous fibroadenoma. This did not show up on mammo or mri, so it reinforced the feeling that my decision for me was the right one.
Now, since I am her2 positive, it is on to taxol, 12 weeks, once a week and herceptin.
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Forgot to add that two of the oncologists I met with threw around the words "cure rate" for me after doing all the treatment. I will really not ever consider myself "cured" but it is nice to know the odds are reduced. Third oncologist said only 5% return.
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Wow, none of my doctors have said the words 'cure rate' to me. Best of luck to you, fluffqueen.
After a lumpectomy, TCH x6, rads, and H for 18 tx, my onc has given me a recurrance rate of 7 - 10%. That's not bad, but what does that translate to over a period of 10 years, for example. I've decided to have a BLM to further reduce the odds of local recurrance. While I've been told it's not necessary, I thought it was something as my Onc. looked quite relieved when I told her of my decision. As well, a nurse told me it was her opinion that I made a good decision. All I know is, it's the best decision for me.
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Wow, none of my doctors have said the words 'cure rate' to me. Best of luck to you, fluffqueen.
After a lumpectomy, TCH x6, rads, and H for 18 tx, my onc has given me a recurrance rate of 7 - 10%. That's not bad, but what does that translate to over a period of 10 years, for example. I've decided to have a BLM to further reduce the odds of local recurrance. While I've been told it's not necessary, I thought it was something as my Onc. looked quite relieved when I told her of my decision. As well, a nurse told me it was her opinion that I made a good decision. All I know is, it's the best decision for me.
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How are you doing? I also was diagnosed with the same type of cancer. I had two breast sparing surgeries that were unsuccessful, After being told I needed a mastectomy, after careful consideration, thinking about my history and dense breast tissue and scar tissue from 4 previous surgeries many years ago for benign tumors in my other breast, I opted to have a bilateral mastectomy and reconstruction, chemo with 12 weeks of Taxol and Herceptin for 1 year. In March I will be 2 years cancer free! I was wondering how things went for you?
I pray this doesn't return. I exercise, try to eat right, and take care of myself. I hope it NEVER comes back. I was 49 when I was diagnosed with IDC stage IA ER- PR- Her2neu+ 3+ AMPLIFIED. Scary!! I never imagined this would happen to me. I thought I was taking good care of myself , but this type of cancer doesn't seem to care. I've never smoked, I don't drink, I always exercised and maintained a healthy weight. What happened? What are my chances of getting a reocurrance? Only 5%? Is there anything else I can do? What have you or anyone else done? I wish I could just moved forward, but it's like a black cloud hanging over my head. Most days I'm ok, but I have my days where I'm unsure.
Thanks for your support
bcsurvivor
IDC Stage 1A node neg ER- PR- Her2neu high grade 3+
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Isthis for real-i forbid any doctor to use cure around me. I feel it is tempting fate and just asking for a recurrence. Thats how superstitious I am.
Dja-since your treatment was exactly mine, I hope we have done everything! I drink in moderation, usually wine, have lost weight and while I wasnt bad before, I am much better now. I do exercise a lot more now. Still hate it.
I keep reading all about percentages and honestly, I feel like it is the lottery. Either you win or you dont. Doesnt matter what the odds are. I am trying to get my head around moving forward without paranoia, but it is tough. -
dja625 I have read that HER2+ most likely recurs if it's going to in the first 3 years. If you are ER-/PR- your probability of it recurring goes way down after 3 years. You are doing great and it seems like you have an excellent chance of beating this. Being node negative is a huge break for you as well.
From what I have read the most important things we can do is maintain a healthy weight, limit alcohol ( or just don't drink), of course don't smoke ingest 2nd hand smoke, exercise and don't sit for long periods of time. This is even more important than all the other environmental factors people worry about.
Congratulations on 2 years. I just pasted my 1 year this August. Am I worried about recurrence. No as long as I do what I'm supposed to. My feeling is I won't worry about it till I get some symptom that lasts for 4 weeks. I mean I don't spend my life worrying about dying yet some day I know I am going to die. No need to worry about breast cancer coming back because I don't know if that is going to happen. (Hope that makes sense). I just want to enjoy my life now that I've been treated and feel fine.
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Lago since I have been sitting with a cold for three days doing nothing, i hope I have some leeway!
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Fluff I've also had a glass of wine a week ago Friday night and 2 the following night. That's more than I drink typically in 2-3 months. I hope I have some leeway too
I think we're going to be fine. No one is perfect.
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LOL..Totally agree. I am hoping that if I go three weeks with drinking nothing, then I can have 6 drinks the next! We have a wedding and New Year's Eve coming up, and while I am not much of a drinker, I do plan to have some fun! I try to stick with red wine, hoping it will provide a few health benefits for other places.
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Thank you lago for the inspirational pep tal! I am doing everything I can to stay cancer free. I feel like l won the lottery, or dodged a bullet!! For the most part, I don't think about getting a reoccurance, and if I do, I reason with myself. I know someday we're all going to die, and while I'm alive, I want to live life to the fullest.
Sometimes when I'm alone or I wake up at night, I think about all that I went through, and I think about if I got a reoccurance. I beat this cancer and I am so fortunate to have been pro-active about my health. It made all the difference for me. I also feel grateful to have an amazing team of doctors, nurses and other professionals in my corner that have helped me through the entire process.
I am going to go to bed feeling comforted by what you wrote. That's what support is all about.
Thanks again!
dja
IDC stage 1a, Er- Pr- Her2neu 3+ High Grade 3 Diagnosed Nov. 30, 2009. Have been cancer free since March 10, 2010!
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Hi fluffqueen,
You're right about the lottery. I can't believe this happened to me and I beat this aggressive cancer! It can be haunting, thinking about it at times.
I wouldn't worry about an occasional glass of wine. If I go to a dinner party, or on a special date wtih my husband and soulmate, I might have a small glass of wine. These days, I am even more diligent about staying healthy, because if it did rear it's ugly head again, I would want to know that I did everything possible to keep it for reoccuring. That at times is a steep order to fill. No body can stay off sugar completely, never have a drink, or miss a day of working out. I try to balance my life by making more healthy choices, managing my stress level (stress happens), and exercise at least 4 times per week. I do a variety of fun classes at my gym. I like to mix it up so I don't get bored and it keeps it challenging. My favorite exercise class is in the pool. If feels great on my joints, and I feel so calm after I swim. My body is tightening up too.
I am concerned about my bones, because I had my first bone density test and it wasn't good news. I have Osteopenia. What next! We need to keep our bones healthy and strong. If I'm going to live a long life, I want it to be a healthy life.
Stay healthy and live a full happy life with your family and friends. That's all we can do. We are not in control of everything. All we can do is be pro-active and hope for the best.
Take care,
dja
IDC stage 1a Er- Pr- Her2neu 3+ High Grade 3 Diagnosed Nov. 30, 2009. Cancer free since March 10, 2010!
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