TRIPLE POSITIVE GROUP
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Trying to post dome very interesting stats from The Metastatic Breast Cancer Project, a very valuable research project . The only way I could manage was by capturing screenshots from Twitter. You have to register and log in to access it otherwise.Having trouble inserting them.
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Ashla, everything okay?
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Aww how sweet of you to ask Tomboy.
I was trying to post some fascinating data posted on Twitter by the Metastatic Breast Cancer Project but was having lots of trouble. I believe this is a wonderful effort that is starting some serious so far observational research where we need it most....metastatic breast cancer. It is a project that encourages patients, doctors, scientists and other health professionals to share information on metas tic disease. Patients are asked to share their tumor samples as well.
It is relatively new and I believe has less than 1000 patient participants but the data is fascinating. If you are on Twitter you can see the tweets from this afternoon.
I hope you are well Tomboy. Just started tamoxifen every other day . In two weeks I go daily. For me..these hormone treatments have been the worst. If it were men given this stuff with all these symptoms...you would have had a new med developed years ago..
Wish I could share info. Be well:) @MBC_Project #MBCProject
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TTfan,
Congrats!!!!!! I am so grateful for all the help and encouragement you gave me before I started. Can't believe it's all over and that you are done!! I can't wait til mine goes too. Final H on Dec 11 port out 14th I'm not wasting any time either. Hope you and the family have a great holiday season.
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Hi all, I am recently diagnosed triple positive 12 days ago in fact. My surgery is going to be in the next 2-3 weeks (tentatively). I am meeting my mo for the first time on Monday. Still in shock but I have accepted this bump in the road and I am more than ready to get things moving.
Is there anyone just getting ready to start treatment here who is also triple +? Just looking for someone to connect with who is going to be starting this journey at the same time.
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Hi demarie . . . You're in the right place. This board is incredible.
I didn't just start, but I'm a relative newbie. I had surgery (a UMX) in July; my chemo started in August (and ends after this coming Wednesday!). I'll continue with Herceptin for a year, have the prophylactic MX on the other side, and then start on Tamoxifen. I'm happy to answer any questions you might have.
Hang in there. Remember: it's doable. Truly.
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Hi demarie!
Sorry you had to join us. I'm (finally!) finishing my year of Herceptin in three weeks. If you're looking for someone who is going through treatment along with you, you may want to join (start?) a December surgery board. After that, if you're doing chemo and/or radiation, there are typically chemo boards (starting in month X) and seasonal radiation boards.
MO might want to know whether you want to do chemo prior to surgery. Hope your appointment goes well!
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Hi all Sorry I've been MIA. very busy working 2 jobs
Eyesight. Yes mine changed after chemo. I highly recommend you wait at least a month after chemo before changing your prescription. Initially they said I was losing my distance sight. Waited a month and it was back to normal but my close up did change. I needed a stronger lens but my astigmatism went away. Also have dry eye which has now stablized but made worse with some of the meds we take. I just use OTC drops 2X a day.
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Hi demarie. I don't post on this thread much but I read it often. There are many knowledgeable ladies here. I am also a relative newbie (round four of six is in the books). You will definitely want to discuss whether to do chemo before surgery. Some of your treatment and surgery options might change based on your decisions. I also recommend finding the surgery and chemo threads for your month. It helps a lot to connect to others who are on the same timeline.
I am so sorry you had to join us. 😟
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Hey Ladies...
I was recently (on Friday) diagnosed with LCIS that is +++. I know that LCIS is not cancer, and haven't seen my pathology report, had an MRI or scheduled surgery yet... I see my doctor tomorrow. I'm trying to figure out the significance of HER+ in LCIS. I'm wondering if it will make a difference in my treatment plan.
LCIS was found in a core needle biopsy I had for a suspicious mass.
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Thanks everyone, I will be sure and ask the mo when I meet with her tomorrow about my options for doing chemo first vs after surgery.
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Mya, welcome and sorry for the reason that brings you here. It sounds like you have biopsy results, your doctor will point you in the right direction to BS and MO. Remember that the biopsy is just a small sampling of the tumor and a pathology will be done on the whole mass and the characteristics may change or be added. We will be with you as you jaunt down this bumpy road. Keep us posted.
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Greetings and happy holidays to everyone! I just skipped past 30 pages of posts, so I hope everyone is doing well.
I've been away for a couple months and since then, there has been a lot happening in my life. Real estate has been busy, so there is that. My son got married on October 10, and that was a ton of work, but lot of fun! A week before the wedding, the owner of my husband's company decided to sell it to another similar family and they don't need two VP of Finance, so he is out of a job. We are about five years away from retirement readiness, so he is starting to look around, Althugh I think he likes the hand out and do home project life, lol.
I crammed in all my doctor's appointments before our insurance changed, had a colonoscopy, etc. Colo was ok. Had two small polyps removed for the first time, so that was a little disconcerting but they were benign thank goodness. Saw my onc, mentioned that I have two trigger fingers and wondered if I should change AI brands. He said no that it could be due to anything. That was highly annoying, so I just sent him all the studies and docs that relate to Arimidex and trigger finger. Told him that while I agree that it could be caused by a number of things, it seemed a little suspicious that all the arthritic things, the thumb and wrist tendonitis and trigger finger all happened in the 18 months I have been on Arimidex and started about seven months in. I am monitoring it for the moment as it isn't terrible, but will call if it gets a lot worse.
One of my daughter's friends, 26 years old, was just diagnosed as triple positive. Just unbelievable. It certainly freaked out my daughter!.
I will be back on here more often now that things have slowed down some. I hope those of you going through treatment are tolerating things well, and those of you done are happily enjoying life!
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myajames it's not unusual for LCIS and DCIS to be HER2+. I think about 50% of the time but only about 1/2 of those who go invasive are HER2+. Dicsuss with your MD but if after surgery LCIS is your diagnosis I don't believe they will be recommending chemo.
fluffqueen01 I had 2-3 trigger fingers in the morning with Anastrozole. Now after 1.5 years on Exemestane I have it back. Goes away faster than the morning duckwalk though. Nice to see you back.
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A belated but but heartfelt Thankyou to all those congratulating me on finishing the year of Herceptin!
I couldn't quite imagine getting here when I started, but here I am. Like so many much anticipated life transitions, there is no dramatic change that happens. It is the little things, like scheduling a vacation without factoring in medical appts or driving by the lab knowing my veins are not going to be stabbed in the near future. I also like being asked how I am doing just like someone would ask anybody else, without that very worried and pained look in their eyes. And I can wear my seatbelt without a port that always hurt!
I wish all of you in/starting treatment the patience with yourself and others that gets you through! I'm here cheering you on
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Thanks Lago
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Hi Ladies,
Forgive the cross-post; I'm trying to gather as much information and as many opinions as I can, and you've been absolutely fantastic since I've been participating in this discussion. Here goes:
I scheduled my surgery (a prophylactic MX and revision to the original MX site) for 12/30, but I think it'd be best to wait until May, when the spring semester comes to an end. That'll give me time to get strong again after four months of hard chemo, get back to the gym, get started on Tamoxifen, and resume my life. It would also give me a lot more recovery time than I'd have if I had the surgery this year. This is logic speaking.
I'm still doing some pretty deep soul-searching about this: on one hand, I want the "healthy" breast GONE, especially because my breasts have always been dense and lumpy, and chemo has knocked the lumps out of the one that remains, which freaks me out. I also want to be realistic about recovery time. If I have the surgery on 12/30, I might have a hard time getting back into the classroom for the start of the semester on 1/10, and that's not something I want to mess with. Oh, and the whole health thing. That's important, too. Again: logic.
But here's the rub: I'm terrified that if I wait until May, the pathology will come back bad and I'll have to hear "we found a little bit of cancer" again, do hard chemo again, etc. I'm strong, yes, but I'm just not sure I could handle it if that were to happen.
Anyone have any (more, since I've already posed this question, albeit with a slightly different rhetorical tone) wise words for me? I know I'm beating this to death, here and elsewhere (not to mention in my head), but I'm having a hard time making this decision and could use an objective perspective or six. Does five extra months have the potential to mean more cancer, or is that just my abject fear talking?
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I would say take care of cancer first
It could happen they find cancer (not saying it will). Also why are they doing a revision on your mastectomy
Hopefully Special K will post. She really knows a lot about these things and her posts are very clear.
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I asked for a revision because I had a skin-sparing mastectomy but have decided against recon.
I know that bilateral breast cancer is rare. But it's possible. And having BC at 36 is rare, too, but I'm walking proof of that possibility. . . .
This is a true dilemma.
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Kate, why are they doing a revision?
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Kate,
I had my lumpectomy on 1/11 and was back in the classroom on 1/12, even though I had a drain hanging out of my armpit. But, I only had a lumpy and ALND. I had my husband come with me on 1/12 to write on the board and distribute syllabi and other materials (he's a college professor, too). The first weeks back, it was tough to reach very high on the white board, but otherwise teaching was OK. If worse comes to worse, I sit on a table while I teach. (That's how I taught through the end of my twin pregnancy.) Well, enough about me. It's not a contest to see who is more masochistic....
Bilateral cancer is more rare than people think. I believe you can wait until May and there's a teeny tiny chance that your pathology report will come back bad. If you're afraid to take that teeny tiny chance, I don't blame you. Chemo's no picnic. But, only you know what you can take. How did recovery go with your first mastectomy? Did it flatten you, or were you able to carry on some basic tasks? Maybe it's me, but teaching doesn't require much energy until the grading becomes onerous. Right now my life is consumed with my grading, and it can be pretty stressful. But, the beginning of the semester is pretty tame, and grading only picks up after the fourth week.
Good luck!
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It's a tough decision. I decided on a UMX instead of a BMX. The primary reason was because I didn't want to lose feeling in my left breast. The breast reduction I had done did affect some of the feeling in the nipple. That made me sad. I've had moments where I've thought about removing the other breast. Especially when I need an US after the mammo due to my dense breast. I don't really worry about a new occurrence. I just don't want to come back in every time for an ultrasound or an MRI. You have to do whatever helps you sleep at night. That's all any of us can do
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Kate, there shouldn't be any cancer. You had an MX first which would have removed all the cancer. The chemo after that would have gotten any stray cells. Up until recently, the majority of people had an MX/LX first, then chemo. I wouldn't think six months would make a big difference. As longas you can deal with the recon you've already had done.
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cowgirl - thank you for that generous compliment!
Kate - my two cents goes like this - you have removed the cancer with the first MX. You have had chemo to treat systemically, along with two targeted therapies. You will be beginning anti-hormonal a fairly soon, correct? So, should you decide to wait to do the other MX and revision, you will still be receiving Herceptin and taking the anti-hormonal which should provide protection against a new primary. It is hard to predict the what-ifs, but the likelihood of a problem occuringwhile still being treated is pretty slim I would think.
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Hello!
Demarie- I will be a Dec start chemo lady! I already had lumpectomy on Oct 6. I will be starting chemo Dec 7. I put it off because my daughter got married last weekend, Nov 21. I will be using cold caps to try and save my hair. I also will be taking off work for awhile. Good luck with your surgery!!
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jodes001
Have you heard of the ATEMPT trial? Ask your onc about it. 75% of participants get tdm1 with no hair loss and few SEs.
Worth checking into
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Hi, all Wow trying to do Thanksgiving dinner and being dx'd this month and working full time. What crazy whirlwind of appointments, tests, and just life in general. I don't even know where the week has gone. You all that have been on this roller coaster ride for months/years are just amazing. I did have my first appt. with my mo on Monday and after that we decided that going with chemo before surgery is our best option. So I have been kept pretty busy, still have to get my baseline echo next week then the port goes in on the 9th. I do not have my start date for chemo, but I am sure it is going to be very soon after. Take Care All
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Jodes001 - we start chemo the same day. Looks like we will have a similar treatment plan!!
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My mother had 2 cycle neoadjuvant chemo. We just had ultrasonography. When compared before chemotherapy there is no shrink. Axiller lymph nodes shrink little but tumour size is same. Do you have any like that? Is it early or our chemo is not working ?
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That is so cool! Someone to compare notes with!!
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