December 2019 Surgery Group
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Hello everyone!
I wrote a long reply yesterday and apparently didn’t submit it. Just know I have all of you in my thoughts and prayers. I’ve been so busy getting ready for the holiday that once I sit down I end up falling asleep! Today was even more busy. I’m happy to be feeling better each day and I wish the same for each of you. Honestly, I feel like all of you have been through so much more than I (which doesn’t discount all I’ve been through) that I only have minimal advice. My advice is positivity and listen to your bodies. Do what you can, don’t push it, and rest up!
My surgeon called me yesterday to let me know all of my pathology was negative! Which is some great news. My node was benign I had 5mm clear margin surrounding the tumor. I meet with her tomorrow to find out the next steps. I’m hoping for no radiation, but realize that’s wishful thinking. She said at the beginning that I needed 4 wks of rads, so I’m planning for that. I girl can have hope
My right breast itches so bad like some dried grass is stuck in my bra! I can’t scratch it and it drives me nuts! I also notice that a large portion is numb. I could care less about that.
Teslafied: wishing u a successful surgery tomorrow!
I hope everyone has a restful night and a comfortable day tomorrow!
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Ptamomtx, I'm not understanding something. The cancer was on your left side and they did a node removal on your left side but it is your right armpit that hurts? I take they did not make a second incision to get the lymph node(s)? That is strange but I will say I only had two nodes removed and I don't have any pain in either armpit. I would definitely look at the pathology report to verify they took the correct nodes.
I also have the phantom nipple sensation that reminds me of when I was nursing my babies. My surgeon said that it's nerve pain and gave me gabapentin for it. I'm not sure how long it will last but it can leave anytime as I'm not a fan of it. As far as the BM talk, we were all in this together so in my mind nothing is off limits.
Lulu44, you and I have a very similar diagnosis. Do you know if you are going to be doing H & P next? Because of my pathology report showing some residual cancer I'm doing Kadcyla next with ovary removal in the spring sometime.
My 2nd drain comes out tomorrow...YEAH!
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Thank you ladies for the well wishes. I’ve had such a busy weekend getting everything ready. I’m about ready to collapse into bed right now! Arrival time Monday is 11:15am, then an overnight stay. So I will be home for Christmas Day. I’ll try to post later in the week. This board has been such a great help to me through all of this so far. It’s good to know what to expect going forward. Thanks again, and Merry Christmas to all 🎄🎁
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Teslafied...you got this!! Will keep you in my thoughts tomorrow!!
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Hi ladies, I'm so glad that everyone seems to be doing so well. I had my surgery in November, but was hoping that I could join your group. The November group does not seem to interact as must as this group. I'm still new to this new way of life and could use some help figuring it all out. If it's against the rules for me to post in this group just let me know and I'll delete it. Thanks for your time, and I hope everyone has a Merry Christmas.
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Flnana2- yes, my left side is where all the flags went up that started the ball rolling, then they found something suspicious on my right in the MRI-so I decided on the double mastectomy. Only the left side nodes were supposed to be removed. Lefty is what I affectionally called “Franken-boobie” for the last ten years or so. Lots of biopsies and other stuff on that one left scars. But I find it curious that it is my right armpit that has more pain. I’m going to check with the doctors when I see them.
Mh1019- Welcome! I would love to hear what you have learned thus far. Plus, you have a cute doggie in your pic. How is everyone keeping affection animals from trying to snuggle them?
I’m calling my doctors first thing in the morning to see if I can get a drain or two removed. Otherwise I have to wait until the 31st because both their offices are closed for the holidays. The itching is starting to drive me bananas. I put makeup on today. Even though I didn’t see anyone or really leave the bed, I just wanted to feel a little normal and pretty. Anyone else do something like this for normalcy? I’ve also been lighting scented candles for a more soothing atmosphere. What have you been doing to help the stress?
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Hi PTAmomTX, I have had the double mastectomies done on 11/14, with immediate tissue expander placements. My PS said he had put 5 weeks worth of fills in during surgery. I have now had 4 more fills done in the office. I have been having a hard time getting our Oncology office in the area to see me. My surgeon sent in a referral prior to my surgery and they denied wanting to see me. When final pathology came in my surgeon said that I would have to be followed by an oncologist for at least 5 years, but still they didn't call to set appointment. My surgeon got involved and they called and said we have a doctor that said she would take you on as her patient. The office girl called and said do you have a pen and paper, I said yes but let me go look and see what times my other appointments are, she basically said you have an appointment on Christmas Eve at 11, if you can't make it we won't see you until February. I'm also scheduled to have these painful expanders out 2/3/20 and have my implants put in. So awaiting for this day. I'm really nervous what the next steps in oncology will be. I hope everyone here will be able to have a wonderful Christmas. Thanks for listening.
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mh1019- I hope the meeting with the oncologist goes well on the 24th. Or at least they can address some concerns and create a treatment plan as needed. Fingers crossed! I’m glad your surgeon has your back in getting the appointments.
I’ve been wondering if they will do the first expander fill in office when I see them on the 31st? Or do they wait a bit more before filling? I have a genetic condition that makes me super stretchy and flexible, so he was able to fill the expanders at surgery a good amount. I may only need one or two fills before they switch to implants. I wish I could get a timeline from the surgeon for when everything happens.
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PTAmomTX, my PS also said that he was able to fill quite a bit during the surgery. He told my husband that he saved me 5 weeks of fills. When I went in for my first appointment after surgery, week 1 they took out my drains. They did my first fill, and took out the stitches week 2. I have had 4 done for far. Do yourself a favor and take a muscle relaxer before the appointment, because you will be sore after. I know what you mean about wanting a timeline, the not knowing is the hardest.
My puppy, guess she's not a puppy, she's 10. Gracie was being trained to be a therapy dog when she was a puppy, so she is really good about being gentle.
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First post op appointment went well. Doc took off the ace bandage and it still feels right and numb. Drains have to stay for another week. All in all it does not look bad a bit puffy and swollen but he assures me that will subside in time. Now time for a nap!!
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mh1019, welcome, of course you can join our group. I can’t believe how much you were able to be filled at surgery and since then. How many cc are you getting at each fill, if you don’t mind me asking. My PS didn’t fill any at surgery as I was very tight just getting the expanders in. I am small boned, and was small chested. I’m not looking to go large so when I spoke to her today she said I’d probably have three fills but everyone is different in how much they can tolerate. I have my first fill Jan. 7.
TeriJ, congratulations on the good pathology report!🎉🍾
I’ve been pushing for a schedule also. I have a trip planned March 24th and I need to be through radiation by then and I can’t start radiation until my fills are done. I think I’ll be ok...I have an appointment with my RO on January 8.
PTAmom, are you having radiation? I ask only because if so, I was told I’d have to wait at least 6 months after radiation before implants could be put in. And, my RO only wants my cancerous side filled for radiation in order to aim the beam in such a way that It is as far away from my heart as possible. I guess that means going over my right side. If my right side is flat then the skin won’t be affected if it gets some of the radiation beam I’m not sure I understand this entirely. Aren’t there shields to cover the areas that shouldn’t be radiated? More questions for my appointment January 8th
I am drain free and it feels wonderful!!
I hope everyone gets some quality time with family and friends this week and can spend some time not dwelling on surgeries, cancer and recovery.
I’m looking forward to 2020!
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Flnana2, thanks for the welcome! I always thought I was small busted, but my surgeon said I was large busted. When I woke up from surgery I already had a little bit of a cleavage, I was shocked. My PS said I had plenty of skin to be able to go to a full B, small C, if I chose. I might only go to a full B, because the more fills I'm having the longer the recovery is between fills. My PS places 50 CC every fill. PS also said that when I get to the size I want to be that they will do 2 more fillings before my surgery on 2/3/20 for my implants.
I'm so happy for you getting the drains out!! Milestone!!
Merry Christmas to all!
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I got myself squeezed in with the PS’s assistant yesterday and had two drains removed. Yay! One I didn’t feel at all, but removing drain three was very painful-I saw stars. I was not expecting that. Drain three has always been a problem child, so I’m glad that puppy is gone. Also, we have been having an issue with the post surgery bras including the one they gave me. I’m small around the rib cage, but have larger breasts (or did), and since he was able to fill a good amount from the start, bras have been too tight on the boobs and not tight enough on the underband. She was worried about tissue death so I was switched to ace bandages only. I am really liking that.
I am not going to need radiation. Assuming that they took the correct sentinel node and we don’t biopsy the other one and find something worrisome. I am a planner. I love lists. Not being able to plan everything out makes me a little crazy, so my current mantra is “This too, shall pass.”
I’ve been cleared to take a brief shower today. I can’t tell you how excited I am to have my hair washed. I might have to ask a neighbor to come style it for me so I can look halfway decent in Christmas pictures.
I’m hoping everyone else is feeling good and spending time doing things that make them happy. X
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I was able to left my right arm enough to wash my hair today!! It’s a small thing, but it’s good to feel a little more independent. I found some exercises on YouTube that I have found very helpful.
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Hi All! I'm not sure where to post. I just had my surgery on 12/10. I thought I was crazy tough, but have had some really high and really low days. I had a double mastectomy with expanders. I think part of my problem is four children, Christmas time and I won't sit still. What a wild time of year to be dealing with all of this. I sat in my closet and cried today for no reason other than I couldn't reach something high up in my closet. I have lurked on this site since October and hoping to get some much needed information from you all. Merry Christmas
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We were FaceTiming cousins in England this morning and they were delicately asking how I was feeling. My 6yo daughter pipes up, “Mommy cut off her boobies! Can I see the baby twins now?”
Tea spews everywhere, I fall over laughing, and the cousins struggle to find something to say.
The twins are adorable.
Happy Holidays y’all
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Badluckbdaygirl how is your recovery coming along? It’s normal to having crying moments. I’m scheduled for my skin sparring double mastectomy on New Year’s Eve first thing in the morning. I’m ready to get this part of my journey started.
PTAmomtx that is hilarious, got to love what comes out of kids mouths lol.
Merry Christmas everyone0 -
I figured locking yourself in a room to cry was normal. Or it should be. I choose the master toilet because it has a lock. I couldn’t get a glass out of the cupboard in the middle of the night for milk. I had to wake my husband who has been sleeping on the couch to get me a glass. It is beyond frustrating. I got caught the other day trying to use my teeth to get a shirt off a high hanger in our closet. Asking for help has never been my strong suit.
And with a kid it’s hard. My daughter is a very tactile/huggy person, and it has been rough on both of us. Her anger comes out in different ways on silly things. We have devised a hand code that means I am giving her the biggest hugs in the world-even if right now I can’t. And sometimes, just sitting next to her and holding her hand helps. Little jobs to make her feel helpful works too. Bringing me pillows, refilling my water bottle, brushing the cat (to keep the cat off me). Everyone in the house is part of this surgery and diagnosis. Everyone is affected. I have to keep reminding myself of that.
Hugs to you, Badluckbirthdaygirl
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Dealin with drains, some pics:
Restaurant aprons (note-do not forget about the chocolate you hid in there before nap time..)
Secret inner pockets (inexpensive bed coat from Walmart with some fabric scraps sewn inside)
Tied onto the tails of a shirt
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Your ideas for dealing with drains are very clever! I sewed a couple of pockets out of fabric from an old t-shirt. I pin the pockets inside my shirt.
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Hi Everyone! Merry Christmas & Happy Hanukkah! I hope everyone is recovering well.
PTAMomTX- you look so great! Love the pics!Flnana- We even got diagnosed around the same time. I got one infusion of just Herceptin & Perjeta on 12/11 (1st time without Carboplatin & Taxotere Thank God) but I got my surgical pathology the other day & I have residual invasive disease. It was in 3 small spots (tumor broke apart) and one lymph node so I’ll be getting Kadcyla. I’m not sure if I will continue to get perjeta.
I hope everyone got to enjoy their holiday(s) despite all we’ve got going on. Hugs to all
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Forgot this one. It’s a mesh sewing accessory bag I found at Hobby Lobby on a lanyard. WOrks great in the shower and out once dried.
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PTAMomTX - you look great. Thanks for sharing. Some great ideas for me in January!
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Has anyone gone flat, no reconstruction in December? I am wondering about pain? I have one area right in the middle of my chest that hurts like the dickens. It is swollen a bit but it's like the only place I would rate about an 8 if I touch it. My pecs ache like I have overdone a workout. Drains are still in and cumbersome but not too bad.
Thankfully I got the all clear to shower so that is making me feel somewhat human.
PTAmomTX...love your drain fashion!! What part of Texas? We were 14 years in Frisco and miss it so much!!
Badluckbdaygirl...sister, don't fret about crying. I am crying at the drop of a hat and have my hubby and 2 sons perplexed. Thankfully, I warned them not to try to fix it when I cry, to just sit with me and let it pass. They are good students and have learned quickly to just hold my hand and wait with me till it passes. 😊
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PTAmomTX, I love all your drain ideas. I still have one in and it’s draining a lot. I keep coming up with questions. I feel blessed as I seem to have caught mine early from an annual screening. I have extremely dense breasts and have been getting call backs and biopsies since I was 31. Three biopsies (last two were on my bday this year) hence the name. I decided on a double mastectomy as my boobs are ticking time bombs in my opinion. The expanders have been rough, but I just turned 46 so I still wanted breasts. I got my initial path back and was surprised because after an MRI, 4 mammos, ultrasound, instead of the IDC I knew about I also have DCIS and LCIS. Just surprised it wasn’t picked up. Does anyone know who I ask about the Onco test? I am highly ER+ and haven’t even hit perimenopause. So many questions
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I had ticking time bombs too. The phyllodies tumor is a blessing in disguise. The only treatment is surgery, so getting rid of both was the way to go with me. It’s a weird tumor. Cancer, but not cancer. They usually don’t need radiation or chemo, but the grow fast and will rupture out through skin/muscles/whatever is in it’s way. (I picture the lunch scene in the movie Alien). They found more tumors on my MRI that they couldn’t see in the other imaging. They all came back benign, but I will still have to keep getting checked if any of the phyllodies cells got missed and grow back.
My family history on my maternal side is everyone. Every. Woman. Has had breast or ovarian cancer. But we only carry a gene variant of “unknown significance.” Safe to say there is some significance there docs. THe science will catch up eventually. My second cousin had her mastectomy on 12/13 for stage II-ductal. Nothing like cancer to keep the family from drifting apart.
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Thank you, PTAmomTX, I had never heard of a Phyllodies tumor, but then again I have never heard of much of the breast cancer types. I’m glad you got them off. That’s exactly how I feel. You do have a lot of family history. My mom and grandmother both had it, but postmenopausal. I am negative for the BRCA genes, but have a 30% lifetime risk so with the density of my breasts, my BS agreed with my decision. I need to ask about radiation and treatment as they haven’t told me much. I still don’t have an oncologist. I will probably be on Tamoxifen for awhile. I have even thought about ovary removal as I am 98% estrogen positive and looks as though I’m a long way from menopause. So many questions
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Birthdaygirl, my ovaries are coming out in a month or two. My GYN is coordinating with my other doctors for the best time to do it. It was suggested to do it while the implants go in. But it’s an outpatient procedure these days and my GYN will do it vaginally so there is little down time. As long as they come out. I have a 6yo I need to be around for and anything I can do to drop the risk is worth it
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Good morning everyone
I just found this page this morning and was so glad to read other people’s experiences, and know I wasn’t on my own in this journey. I had a right breast mastectomy on Dec 13, my question/concern is the drain. I’m still producing 55-88cc/day and it’s still really red. How long can this go on for? I spoke to my surgeon last week and all he could really say was they don’t know why a person produces more fluid than another, but now I’m at the end of week two. I’m not sure what to do, keep waiting, contact the surgeon again? Has anyone else experienced this? Thank yo
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I hope everyone had a nice holiday. My surgery went well, I haven’t been in any pain since, except for a horrible headache that started Christmas afternoon and all day yesterday. It’s finally gone now, wondering if it was just the after effects of the anesthesia wearing off. My Dr said it was ok for me to take a shower, so on Christmas morning, I finally got to see what I look like now. I got the crying fit out of the way before taking the binder off. Once I saw myself, I wasn’t too traumatized. It just looks weird, they are both caved in with stitches going across both. I was not able to keep the nipples like I thought, but Dr. did do the skin sparing, so I’m not completely flat. First time milking the drains was hard, but now I have it figured out. Fluid has been going down steadily each day. I have more fluid coming out on the left side than the right. Also, the right side color is a darker red, like tomato juice, while the left side color is lighter, like kool-aid.
Badluckbdaygirl, about the oncotype test, find out if this is covered by your insurance. It costs a few thousand dollars. At first, they told my BS’s office that they wouldn’t cover it, so then I got my MO’s office involved too, so insurance finally did cover it. It makes no sense to me why this test should ever be denied. But I’m glad I had it done because my score came back as a very low 9. Also, I understand about the crying. I have been the ‘tough girl” this whole time around everyone, but when I’m alone I just need to let it out. It does help, trust me.
PTAmomTX, I have that exact same purple sweater. My BFF got it for me. I wore it to the hospital this week. Great idea about sewing pockets inside for the drains. Mine don’t bother me all that much right now, so I’m just letting them hang.
I hope everyone continues to heal well.
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