Starting Chemo September 2015; join us!
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Liz, I still want to have a 2nd child if it's in the cards (even stashed a few eggs in the freezer to improve the chances). The plan right now is Chemo, Radiation, maybe 2 years of Tamoxifen before the Oncologist will let me try. Assuming all goes well with baby #2, maybe get the oopherectomy while on maternity leave. After I'm done breastfeeding, then it'll be time to talk about the bilateral mastecomy & reconstruction (probably get right back on the Tamoxifen too).
My dad is BRCA 1+ (We've known since I was a teenager) and had his prostate removed a couple years ago when his PSAs started rising. Every woman in my dad's matrilineage (Ashkenazi Jewish descent) has died of Ovarian cancer (one as early as her 40s). Breast cancer in my early 30s is NOT the conversation I was expecting to have with my doctor. 2 kids by 35 and out with the ovaries was the conversation I was expecting to have. *sigh* Cancer sucks.
I hope your procedure went well, even if the scars are kinda awful right now. I still have that to look forward to someday.
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Lisa, I can understand that. We were done having kids, so I'm going ahead. My paternal grandmother died of ovarian cancer. I didn't even know that was a BRCA marker until I was diagnosed. I'm going to be praying for that second child for you with no recurrence. Xoxo!
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Got any pictures of your grandmother? My parents always said I looked like Della (Dad's Mom). When they showed me pictures, it was an incredible likeness. She died when I was 1 year old. Genetics is scary.
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good question. I'm not close with my paternal side, but am going to dig around. Okay, this is odd. My pgm died when my brother was 1. My mgm died of glioblastoma (also a BRCA marker, who knew?) when I was almost 1.
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I posted that one. I ordered it too!
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Genetics are scary. But I figure every family has something, diabetes or mental illness... We drew the cancer card. And at least my kids will have the option of being tested early. A prophylactic mast and ooph beats the crap out of cancer, imo.
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What is it like to have the full mastectomy? With a 1-year-old running around and all the other procedures that needed to happen before Chemo, I figured I'd be on my back WAY longer than the lumpectomy day surgery (I was able to nurse a few days later after the isotope and anesthesia/oxy had left my body). I'm hoping I'll be able to do the reconstruction in the same surgery as the bilateral mastectomy when the time comes. I'm getting really tired of people cutting into me.
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Annie
How lovely you look. You look like a young teeny bopper.
Rosieo
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Lisa, the bilateral was not too bad but the hard part has been the inability to pick up my children, especially my 1 year old. I wanted immediate reconstruction too but was not a candidate due to the 2 positive nodes. You will definitely need help for a while at home. I'm hoping to be completely finished next summer. As far as how it looks.. The implant looks pretty good, but the scarring from the procedure and three drains is awful. And no nipples.
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I should also mention that I already had larger implants that were subpectoral. If you don't have implants already, it will be a longer recovery due to all the muscle stretching that has to occur.
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Done by Summer 2016? That sounds way better than "Done by Summer 2020." Not counting all the Tamoxifen anyway...
I was thinking of doing the non-implant reconstruction. Free tummy tuck after 2 kids? Why not.
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Roseio, ha ha ha,teeny bopper!I needed that today!
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What is the non-implant reconstruction?
I was thinking about having them reduce my other side and reconstruct the mastectomy side smaller to match..... I'm pretty sure I won't be able to have the reconstruction done at the same time as the mastectomy like I had wanted.
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I also have to have reconstruction done later. My surgeon is sending me to the good plastic surgeon 3 hours away for the reconstruction when we get to it. I was thinking about going to see the plastic surgeon for an initial consultation prior to surgery.
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I think this is the right article....
http://www.breastcancer.org/treatment/surgery/reco...
(Do not confuse with TRAM flap - old school where they take muscle too)Basically - transfer stomach fat and tissue to the breast area after removing all the breast tissue. Reconnect blood vessels with microsurgery. The reconstructed breasts will grow and shrink as I gain or lose weight as they would be made of my own fat & tissue. I was worried about having to "rotate the tires" every 10 years or so if I got implants. My aunt has had her implants for over 30 years or so, but none of the current manufacturers will ever advertise those numbers. My grandmothers either die early from cancer or live to be 97+ and 60 years of replacing implants seemed like too much hassle. Even the plastic surgeon thought I was a bad candidate for implants and a great candidate for DIEP flap. He thought I'd be around a C-cup after the surgery (assuming I don't lose a ton of weight between now and then). My lumpectomy surgeon strongly recommended I talk to the plastic surgeon before my Lumpectomy in order to get some good advice on which procedure to go with and get some "before" pictures. The plastic surgeon actually talked me out of going the Mastectomy with "placeholder" implant surgery because of where the implants go (under the muscle) and how I might end up lopsided post-DIEP Flap surgery.
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Non-implant reconstruction is when they take fat and muscle from another part of your body to build the new breasts. The recovery time is a good deal more because you have multiple surgery sites. Implant reconstruction is often a multi-step process because the expanders are implanted under the pectoral muscles and filled over weeks or months to reach the right size for the implants.
I had a single mastectomy without reconstruction (positive nodes bought me a ticket to radiation and delayed reconstruction). Recovery wasn't bad at all. Reconstruction of any kind seems to increase the recovery time. I'm also hoping to do reconstruction next summer, and am currently planning to remove and reconstruct the other breast at that time as well. Apparently my ILC had been growing quietly for years undetected due to its nature and my dense tissue. I don't want to do this again, and I don't want to lose any more lymph nodes. I developed cording and mild lymphadema after the ALND. My BRCA came back negative, but had a variant. The variant is unstudied, so no one knows if it increases my chances of occurrence/recurrence or not. So if everything goes as planned, I'll do a single mastectomy and double reconstruction next year. Done in 2016!
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SouthernCharm..yes, that's the same halo that I purchased online from wigs.com. It has detachable bangs too. It looks good with my assortment of hats. I'm toasted brown.
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l am too thin for anything but implants, but I had my prior set for over 10 years with no issues. I'm sure the results are much nicer with the other procedures, but just beware that the recovery time can be really, really extensive per my plastic surgeon. It's big, big surgery. I asked if he could cut off the "twin skin" from my stomach and make a boob out of it. Lol.
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cajunqueen..lol..I could donate and make boobs for everyone!
southerncharm..the toasted brown is nice and simple with some highlights. The length is longer than my normal hair but it can be cut. Don't think I will cut it as I'm liking how it looks substantial coming out from under the hat. I'm happy with it.
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Wow. It's been hard to keep up with this fast-moving discussion! I kept trying to muster the energy to respond but seem to be a bit energy-challenged these days. Had my second dose of AC on Monday, Sept. 14, and ended up wiped out that Friday through Sunday. I had only one really bad day after the first round, so it was a surprise. And I didn't bounce back as quickly during the second week either.
So now I've just had round 3 on Monday and am waiting to crash & burn. Will it be tomorrow? Friday? How many days will it last this time? My doc said it might be worse since this stuff is cumulative. Swell.
We're having one sunny day in the middle of this week so managed to take advantage of it and take the dogs for a short walk. It's been raining for several days and we all needed the exercise. I have a very steep driveway but made it back up. More rain on the way for the next few days so I'm glad we got to do this today.
To all of you hesitating to buzz off your hair, I recommend you just do it. I got fed up picking hair off of everything and just went to the local barber shop (lady barber!) and she buzzed it off. It's weird, but much easier. The hospital gave me a wig, but I haven't even tried it on again yet. I seem to be content with hats and scarves for now. I might have to check out one of those halo things, however. I love all you brave women posting photos of your bald heads! I don't think I could do that.
I'm so surprised to see so many young women here trying to deal with this as well as small children.
I decided against reconstruction once they told me how involved it would be (2 or 3 more surgeries?). I'm 65 years old and I don't need that boob anymore! I'm still healing from the mastectomy and the thought of more surgery is just too daunting.
Speaking of surgery, I'm very glad I have the port. My veins have always been a challenge to people trying to draw blood, so the port is much better for me. It went in successfully and while it may be a bit creepy, I think it will make all these treatments much easier. I'll be glad when I can get it removed, however, because it is kinda creepy!
I know there was more I wanted to say and I wish I could respond to specific people, but not today. Almost time to take my second dose of the dex steroid and I think I need to rest a bit after my "big" outing! I'll try to be a bit more active here if I can.
Such a nice and helpful group here...
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I had BMX with immediate reconstruction. I don't have small children. My recovery was pretty easy. The biggest problem is getting your mobility back. You really have to work at it. Be consistent with your stretching and listen to your body. If it hurts, stop immediately. The more you push the longer it will take to recover. I was back in the gym lifting weights 9 weeks post op, back in the gym doing cardio 3 weeks post, driving 2 weeks post.
Those of you struggling to shave your head....you are giving yourselves more anxiety by prolonging it. I was totally freaking out with my hair coming out in clumps. I could only stand it for 1 day. You get used to being bald. It is what it is....temporary....I still have not lost my eyelashes and eyebrows. We may not. I am having 4 treatments. My girlfriend didn't loose hers until her 6th. So I am hoping I can hang on to mine. I do get up everyday, shower my scarred body and bald head. They are battle scars and remind me that I will live. My body is different but inside I am still me. Cancer will not define me....I am still me. I do put on makeup everyday. My motto is Look good Feel good. If I look at a sad sorry face in the mirror that's how i am going to feel. Try to look at the positives....not need to wear a bra as I have breasts of a 17 year old(so perky and firm...the envy of my friends) and I can get ready super fast to go out.
Everyday is a battle. Your attitude can make or break you. I am choosing to be positive and try to not negativity get to me. It can take you to a dark place that is hard to climb out of. Allow yourself bad days. I sure do, but pick yourself up and move on. That has sure helped me during this whole process. Velcro head and rocket boobs can't keep me from finding something to smile about every day!
Hugs to all who are struggling. You got this! You can do this!
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Aga-I have a similar profile as you. TC (taxotere and cytoxan) is standard for folks like us: 4 times every 3 weeks. I got three opinions in two different states and that was all agreed upon
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Jabe that's what I had but I'm alergic to taxotere so now I'm switching to AC for the last 3 rounds
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just want to say hi to everyone. I just make it into your group, had my first round of FEC yesterday (30th here in Australia). I have been reading your posts for a while and getting lots of good information.
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I saw that Annie. That sounded so scary. My 2nd infusion is a week from today. Cross your fingers no reactions. Hair, however, Is jumping ship. Buzz on Saturday if it will cooperate until then...crap
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Welcome ozigran! Sorry you have to be here, but you sure are welcome!
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welcome, ozigran! I was tempted to say g'day, mate (sorry, couldn't help it)
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A long day of chemo but no reactions so it was ok. I got a script for ambien to help me sleep when I'm on steroids. I have been up since 3:30 and didn't sleep when I got the benadryl because my friend came by to keep me company. I had a steady stream of friends for my whole treatment and another friend brought us homemade Indian food for dinner. I feel so loved!I need to remember my claritin and tylenol tonight for the neulasta shot when it goes off at 7 tomorrow night. The best thing about today was that my tumor had shrunk from 7cm to 3 cm in just 1 treatment! He's hoping for pcr by the time I have surgery. He said it's entirely possible with such a huge response this early on. Doing the happy dance! It makes all the shit I'm going through worth it when I hear that!
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Excellent tumor shrinkage mom2! It boosts us all hearing news like that!
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welcome to our new friends! This is tough for all of us but knowing we are here together helps SOOO much!
Love the Velcro head comment, all that is going to fall out is gone thank goodness some think I will shave off the remaining few.
Southerncharmer you look adorable, love the halo look too.
I am day 7 after 2nd AC and feel like poo. 5 and 6 were not great either because of Neulasta SE but now I have really bad indigestion added to the head Ned neck pain. Have taken Mallox, Pepcid, tums chews and nothing seems to help. Took my anti-nausea too so maybe it will calm down. Yes, and that fig fat furrytongue thing too! I did so well the first round I guess I expected the same. Hoping for a better tomorrow! OK, whining over! Back to the ever positive me!
Regarding recon during MX, I am pleased I took this route. I am small so have todo implant. the tissue expander is at times uncomfortable and weird but manageable. I also recommend as others have that you meet with your plastic surgeon PRIOR to surgery so you will know and actually see your options.
My heart foes out to all of you younger ladies with this awful diagnosis, be strong for your little one, for your upcoming wedding and for those that love and want the best for you
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