TRIPLE POSITIVE GROUP
Comments
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Thanks for all the good information and support about leaving town (or staying home) and doing what you feel your intuition is telling you is the best answer.
Bren, I'm glad you got good results by following your instincts. I think we all have intuition and we just need to pay attention to it.
Ashla, I have an appt at Moffitt on Wed with a surgeon there and if there's a question of whether they can spare the nipple, I'll PM you and come to NY! I have no problem getting on a plane if it means changing the course of my future.
GinGIn, congrats on your first infusion! Am sure others here can help you with that.
Question: Did most here that were triple positive have Herceptin first and then surgery or vice versa? Is Herceptin usually used with other chemo prior to surgery or it is different from person to person?
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oceansky - the rationale behind the most recent neoadjuvent treatment for triple positives is the FDA approval of Perjeta as an additional targeted treatment, but for early stage it is given usually prior to surgery. So you would receive chemo, Herceptin & Perjeta, if it is approved, and necessary, for you. Herceptin is given with chemo, whether before or after surgery. Since Perjeta is so recently approved the majority of us who have been on this thread for some time had surgery first.
I also had skin and nipple sparing BMX, but you have to be a candidate for it - the location of your tumor(s) must be well away from the nipple, you generally need to be smaller breasted, little to no ptosis (droop), and it is physician dependent, some docs won't do it at all. Generally if you are a lumpectomy candidate and the nipple would have been left in place, you can elect a nipple sparing mastectomy, if your surgeon performs them.
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oceansky, I am having chemo first, as I have lymph nodes positive, adriamycin/ cytoxan 4 cycles then taxotere/ herceptin/ perjeta 4 cycles then surgery/ radiation and then completing the herceptin for one year total, my MO said he wants to kick out any potential cells floating around and not waste precious time doing surgery first.
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OceanSky
Like SpecialK says... Not everyone qualifies for nipple sparing in lumpectomy or mastectomy... There is some room for disagreement on which ones among mds.
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I'm doing 6 rounds of chemo (including Herceptin and Perjeta), then surgery, and then likely some radiation. My surgeon was not 100% confident of getting clean margins on the two lesions, and I have one lymph node affected, so the decision was much like Rose's above. Find any lingering cancer cells that may have slipped by, shrink the tumors and then go in and do surgery. Everyone's path is different, though.
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CassieCat, Rose and others
You are the new breed of Her2 pos girls. I was kind of an outlier among the many breast cancer patients because I had neo adjuvant therapy. Many people hadn't even heard if it.
Now you are getting a new ,exciting and hopefully even more successful therapy.... Perjeta!
I ... And the world...am anxious to learn more as you progress.
I tell everyone to keep a diary... I didn't and regret it. It is even more important for you.
Best wishes .
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ashla, I am thankful for all the treatments that are available and all of the research being done to bring more and more options to market. Prevention would be the ultimate discovery of course, but more targeted treatments are a good second.
I have been keeping a nearly-daily blog for friend and family to follow this saga, and to help me remember it all down the road as it becomes a distant memory. I want to be able to help mentor someone else through it, too, if someone needs me. Or even just to keep coming back to these boards, like you're doing. It's all very helpful to newbies like me.
Some people I talk to seem very surprised that I'm doing chemo first and then surgery. But after the "tumor board" reviewed my case twice at the cancer center, the consensus was this route makes the most sense for my case. I feel confident about it.
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CassieCat
Wow! I am really surprised that you are still getting the same reaction about neo adjuvant chemo that I got!!'
My breast surgeon... Who immediately suggested neo adjuvant ... Is a pioneer in so many ways. His dad was also a surgical oncologist head of breast service at MSK in NYC....so they go way back .to the stone ages in treatments.
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Finished my Herceptin last Thursday!!! Finally
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goutlaw - yay!
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Yay for goutlaw!!!!
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awesome goutlaw!
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Thanks couldnt wait to get done, Now cant wait to get other surgeries& boobs!!
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woo hoo goutlaw.
I have my exchange surgery tomorrow at 1030. One one thing to put behind me!!
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Yippee Goutlaw! Personally found that a bittersweet moment:)
Linda505
Best wishes!
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Hope all goes well linda!
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linda - good luck!
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Congrats, goutlaw!
Good luck tomorrow, Linda!
ashla, it's only been from lay people who wonder why I don't want to go in and just try to cut it all out as soon as possible. My surgeon, too, felt from the getgo that chemo first made the most sense. And when my team explained to me the benefits of this approach for my situation, it made great sense to me.
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Gooutlaw-congrats! Linda-you can't believe the difference you will feel immediately.
I have been experiencing some tenderness in the lymph node vicinity of my non cancerous side. It also feels funny when I have my arm at my side sometimes. i have to shift it. This has gone on for a couple weeks. I finally started squishing my fingers around the area. It is very tender and I can feel some kind of largeish sort of lump that I dont feel on the opposite side. Sent a note to my PS to ask if he wanted to check it out or my BS. He said BS as she has all the equipment. I called today and have an appointment on the 30th. Ultrasound first and then see the BS. Of course it is the day before I leave for Winston Salem for the last vaccine treatment and then NYC for several days. I am not feeling at all confident. I know supposedly there is a rare chance that it could be related to the Arimidex, but....it is going to be a long ten days.
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Congrats goutlaw! Linda good luck today!
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Linda thinking of you!! Good luck.0 -
OceanSky My BS doesn't believe in nipple sparing for anyone but he's rather old school on a lot of things. I was OK with that. I asked why I wasn't doing chemo first when I was diagnosed and I got some ridiculous answer about it's only for large tumors (my total was 6.5cm in a barely 34B breast… plenty big). Even back 4 years ago I had read that it seemed to be a more successful approach.
Yay goutlaw
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fluffqueen, that is a long ten days. I'll be hoping that maybe some how they can see you sooner.
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Cassie-I did chemo first, surgery second. It does shrink things before surgery. My only thing that bugs me is that I did not get a completely clear pathology response. Meaning-there was still cancer in me when they did my surgery. So-now I have hanging over my head that my reoccurence rate is higher. The ones who do surgery first never know if they got a complete response or not from chemo. Not sure if it is better to know or not.
Linda-congrats and best wishes on your exchange today.
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Quick update - home from surgery feeling pretty good - little achy. Doc and nurses said everything went great and that I look good!! Have a tight ace bandage over the surgical bra - that can come off tomorrow and I can shower tomorrow - no drains!! More later.
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Linda - yay!!!
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Great news, Linda!
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Linda, I'm new and not familiar with your experiences thus far but congrats on your journey!
Wanted to share that with encouragement from a member of breastcancer.org I'm going to see a surgeon at Moffitt by GoPhoto.it V9.0" style="border: none !important; display: inline-block !important; text-indent: 0px !important; float: none !important; font-weight: bold !important; height: auto !important; margin: 0px !important; min-height: 0px !important; min-width: 0px !important; padding: 0px !important; text-transform: uppercase !important; text-decoration: underline !important; vertical-align: baseline !important; width: auto !important; background: transparent !important;">cancer center
on Wed...The only NCI cancer center in FL. I shared that already.Based on comments that they would want me to do everything there, (including by GoPhoto.it V9.0" style="border: none !important; display: inline-block !important; text-indent: 0px !important; float: none !important; font-weight: bold !important; height: auto !important; margin: 0px !important; min-height: 0px !important; min-width: 0px !important; padding: 0px !important; text-transform: uppercase !important; text-decoration: underline !important; vertical-align: baseline !important; width: auto !important; background: transparent !important;">chemo
) I got concerned...It's 2 hours away.I got a call today from the by GoPhoto.it V9.0" style="border: none !important; display: inline-block !important; text-indent: 0px !important; float: none !important; font-weight: bold !important; height: auto !important; margin: 0px !important; min-height: 0px !important; min-width: 0px !important; padding: 0px !important; text-transform: uppercase !important; text-decoration: underline !important; vertical-align: baseline !important; width: auto !important; background: transparent !important;">doctor's assistant
with more questions. I had questions too. I asked her if the surgeon there could coordinate with chemotherapists in Orlando, and that since I was Her2 positive, I'd perhaps need chemo first....ABSOLUTELY was her response. I was so relieved.So thank you all who encouraged me to find the surgeon I felt best about...Be it in town or out of town.
Hope every woman follows her best instincts and good advice and goes wherever they feel best about.
Now I hope I feel good about her when we meet.
Best to all for a good weekend...
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Ocean, I'm no help. I have the first MD Anderson-sanctioned satellite cancer center about 4 miles from my home, and within walking distance of my job. I did all my treatments there and it was super convenient. Don't underestimate just how many visits there are. You become a good buddy with these people. Like I said, I witnessed the ever-changing decor of the cancer center fish tank for over a year.
I asked this on the Arimidex board, but does anyone have info on aromatase inhibitors and ovarian cysts? I have a mild pain in my right pelvis (nope, no rebound pain, so not appendicitis). It isn't horrible, waxes and wanes, no biggie. At first I thought it might be muscular--a gardening injury...but it persists. It doesn't hurt when I am lying down, just when I wake up and start walking around. Also, it doesn't hurt that much, just a pang here and there. Think that's a cyst? I've never had one before, but I hear they are awful. This isn't awful and I've had it for about 2 months.
I so don't want to go near doctors for awhile. Tee hee....I'm a bum....I just want to believe I'm healthy as a horse now.
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Hi Oceansky and welcome. I had my 2nd opinion on chemo from Moffit and then had my MO in Venice at Florida Cancer Specialists use that recommend regime - he was happy to do that. I understand you are doing your surgery there - that is great. I was very comfortable with my BS here in Venice - that is all she does and people actually travel from Naples and Ft Myers to see her because she has such a good reputation. I think one of the most important things going through all this is being comfortable and confident in your docs. I have been lucky in that area and it looks like you are going to make sure that you are too!!
Happy to report that I am feeling good tonight after surgery - I was having a bit of pain and decided to go ahead and take a pain pill for the evening. I get to take the ace bandage off tomorrow and take a shower. I am allowed to leave it off but the nurse said that she recommends that I put it back on after the surgery just to help with compression and I think I will do that. I see my PS on Tuesday for follow up. It feels so great to be one step further along in this journey and I can't express enough how grateful I am to have found all of you. I don't know how I would have gotten through all this without the advice, encouragement and understanding you all offered. I hope I can be that for someone in the future!!
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