January 2017 Surgery Group
Comments
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Hi girls - question - has anyone been told that the nodes were clean and then later found out they weren't? My surgeon told me that the report during surgery is preliminary so you could get a clean report that later is not. I don't want to know until they really know - but I understand that if there's anything during surgery - they take them all - so I'll know the preliminary whether I want to or not.
I just feel like my tumor is so aggressive in size that it's bound to be in my nodes. PRAYING that it's not - dear GOD I'm praying - but I'm preparing for the worse.
I also am wondering if the nodes are clean but you have chemo, is it an automatic for radiation? I'm seeing the RO on Wednesday so I know I'll ask him all this too but thought I'd throw this into the pool of experience.
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Annoyingboob, I'm a contractor to. No work no pay is exactly right. I plan to try 3 days off. I will have help from my husband and a good friend. I hope that I only need help maybe a week tops. My husband is self employed so he has a little flexibility. Yay for your class! My favorite zumba class has no instructor so I haven't been in weeks. I must find another one that works for me.
Leftccoastie, I have wondered exactly what to take. I should be out patient and if I need to stay overy night I and to have a bag in the car or with whom ever is waiting for me. I will need a step stool to get in my husband truck. Glad you mentioned that. If we take my van I won't but he never drives the van. (Man thing I guess? ) I am also open for suggestions about what to wear. Yoga pants, slip on shoes, sports bra??? Welcoming all advice here
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annoyingboob - I'm sorry if I sounded harsh. Did not mean that in anyway. I know I am very fortunate to have a job that has health insurance and sick leave. I cannot even imagine having the stress of medical bills and no pay on top of the stress BC gives you. I'm really sorry. I am sending you positive thoughts. Yay for Pilates Your prayer was answered. Wish I could make you a playlist of music to keep listening too. I love music and it always helps me in my troubled times. My best friend turned me on to podcasts for eating healthy. Haven't started yet but I have to start working on this gut 🐷 Too much Tillamook products for sure.
PugsMama- so great to hear from you! I am on tamoxifen for at least 5 years. My breast surgeon believes that should be the only further treatment I need. I'm praying she is right.
Shellybeans - my BS told me right after surgery that my nodes looked good. They had a pathologist on site to run preliminary results. It did take a week for me to get the final thorough results. They were clean and the margins were clear. One test that I'm aware of to determine if further treatment is needed is the OncoDx score of the tumor. Pray for a low score. Less than 18. Mine was 15. According to my BS at this point the only further treatment I need is taking tamoxifen for at least 5 years. I know I am a lucky one. I meet with an oncologist On Wednesday. Hopefully she will have the same results. I hope this helps.
Xo
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Annoyingboob, I'm a contractor to. No work no pay is exactly right. I plan to try 3 days off. I will have help from my husband and a good friend. I hope that I only need help maybe a week tops. My husband is self employed so he has a little flexibility. Yay for your class! My favorite zumba class has no instructor so I haven't been in weeks. I must find another one that works for me.
Leftccoastie, I have wondered exactly what to take. I should be out patient and if I need to stay overy night I and to have a bag in the car or with whom ever is waiting for me. I will need a step stool to get in my husband truck. Glad you mentioned that. If we take my van I won't but he never drives the van. (Man thing I guess? ) I am also open for suggestions about what to wear. Yoga pants, slip on shoes, sports bra??? Welcoming all advice here
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Vargadoll: i wore one of my hubby's button down flannel shirts (since I knew I'd have drains & needed something large) & sweatpants or lounge pants that just pull on & slip on shoes/clogs. You'll wear the same clothes going home. If your boobs need anything special to go home in, they'll give it to you. (Maybe that's different if you have a lumpectomy but I doubt it...). They give you a toothbrush, toothpaste, mouthwash etc. but it doesn't hurt to have a small toiletry bag & an extra pair of undies. Hairbrush, Lozenges, earplugs & Chapstick or some kind of lip balm is all you'll need. I also took what meds I take (just in case) even though they ended up giving them to me anyway. Don't wear contact lenses or any jewelry. Phone & charger, that's it...& pillow for the ride home for under the seatbelt & step stool if necessary...I also brought a little notepad & pen in case I thought of any questions I wanted to ask the doctors..,
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Thinking of everyone, Especially those having surgery today. So many ups and downs in this whole ordeal.
Personally, pain wise I am doing great. My surgery was Thursday morning and I took Percocet on Friday and Friday night and have just been on Tylenol since. Got my mummy ace bandage off today and one of my two drains out. Plastic surgeon is very excited about how it turned out. Unfortunately the mind is not as easily healed. Waiting for the pathology is brutal. My breast surgeon said that the lymph nodes she took out looked fine, but unfortunately I do know people who were told clean lymph nodes and ended up not being clean on final pathology. I asked my breast surgeon to call my husband with the path report, rather than call me at home with me home by myself.
As we all know, if it was just the surgery, I think it would be totally manageable. But, the ramifications of that pathology report is a whole different creature. I'm trying not to get ahead of myself, but my mind doesn't always cooperate. I have a strong faith in God, and that sustains me greatly, but obviously does not protect me from adversity.
I'm fortunate that I do not have to consider when I will feel well enough to go back to work, as I am a stay at home mom. I am in awe of all of you who are having to be on this journey and work around your work as well.
I too am so thankful to have found a group that is walking this journey with me at some level. But I agree that it is so disheartening to see how many Women are afflicted with this, just having surgery the month of January! And I'm sure that is only a small portion.
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vargadoll - wear a button up flannel, yoga pants or sweats, slip on shoes, and a vest of some kind. I have lived in a vest. Pockets are my drain tube holders. Not sure about the sports bra. I didn't even wear a bra to hospital. I had nipple sparing reconstruction and was wrapped up after surgery. My PS does not want me having anything on. I'm braless for the first time since I was probably 11 years old and it feels wonderful. As you can see from everyone's posts we are all different in the recovery process. Every surgeon has a different procedure it seems.
Good luck to you. I'll be waiting in the cabana with a delicious drink. 🍹🏖
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Well I met my out of pocket for the year and deductible all in the same day. On the bright side - and I'm reaching here - at least it's January and not December and not doing both back to back. I know I'm very blessed to have decent and affordable insurance so was saying a prayer as I made that payment.
Got something from my dr for my nerves and sleepless nights. Better living through pharmaceuticals indeed!
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My lil girl waiting on her big brother to come out the kitchen with the morsels.
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left coastie- no harshness felt here at all. We are all good, sister!
Pilates class was super! A lot of the girls were wearing pink and talking about the March. It was a super chill uplifting vibe. My instructor tailored the class to do more legs and abs instead of arms - god I love her. But even so, I feel a little sloshing that winchimed mentioned awhile ago in leftie, so there is prolly a seroma. I'm going to try to get to class all this week though - I want to be strong before xrt. My simulation is feb 1, and I'm nervous I won't have the energy for it.
I echo the thoughts about less is more to bring to hospital. I'll add a hat to the list. I have a droopy hat - not wide brimmed- just something I wear walking the dog when I can't be bothered with a shower. It was great in the hospital bc it covered up bad hair, and I just tugged it over my eyes to sleep.
I really do love all the dog and cat pics. I hope Claire is easy to train - the one of her passed out next to whatever she got into was gold!! We are all lucky to have our love bugs (and pugs!!). I'm sure this is all stressful for them too. My girl loves those bull penis tendons - lol - I'll have to get her an extra one as a thanks!
Lots of girls went in today and lots of fu appts this week - good luck to all!!!
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Shellybeans
I had a pathology report where the margin was in question so the surgeon did not want to do radiation in that area, he did an outpatient surgery to get extra tissue. At 1st it was frustrating because I had to go back in the surgery room a week after my double mastectomy. But I did stuff to distract my mind of the revised path-report.
I know this is easier said than done, but try to relax, do stuff to distract you, stress and worrying breaks down our bodies. And we don't need that.
~giving shuga~
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yes, win-chimed the extra stress is not good for us but definitely easier said than done! I too am loving some more poochie pics to see today!
DCISinAZ, so glad to hear from you and that you're well. Yep, waiting on that path report can be brutal. I nearly lost my mind because they had told me Monday or Tuesday but I didn't get the call until late Wednesday afternoon! Luckily, it was good news and I hope the same for you my friend.
Annoyingboob, I am so glad you enjoyed your class! I saw a post earlier from you that I didn't get to respond to because I was at work. Please don't down play what you are going through because you feel it's less than any other lady here. All of our worlds have been rocked and all are going through many of the same things...not trying to scold you but I hope that if you need us, you will let us be there for you in the same way you always are lifting us up. You are such an amazing inspiration to many of us and if you have a bad day or a moment to vent, I am certain someone would jump and help you through. Xox
I'll have to go back and see what else I missed today but love you girls to the moon and hope your all doing well today!
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Thanks wind-chimed! Sage advice I'm trying to take! Staying busy and working out as much as I can really helps.
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oh and Shellybeans, pharmaceuticals saved my day today too! Picked up my 4 prescriptions for my brachytherapy procedure but also a new script for lorazepam...I do hope the shit fairy will stay away tonight and just let me have one boob thinking free night
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I kinda like the idea of a group music playlist. maybe some tech savvy goddess could start one on spotify or something we could all access and add to? is that even possible? im pretty old school with how I listen to music, but I love the idea of listening to new things and hearing what other people love. or if people want to just list songs that have helped them through and we can look them up, but that's kinda a lot of effort, lol.
im already sore from class - might have been a bit ambitious, for reals. maybe every other day this week....
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hello,
I am having a blue day even though we found a fantastic surgeon who accepts my insurance. This was a huge relief. From the initial bad mammo to finding this surgeon was only 20 calendar days. Double mastectomy. Right is radical mx and left is modified mx w sentinel dissection. I have been telling myself that this is only a small whiplash compare to the legit beating I would have gotten if this was not found. Please pray for me that it has not spread to other parts of my body. I really want to start the road to recovery ASAP.
DX 01/11/17. Stage 0 left stage 2a or 2b right
Anticipated surgery date 02/10/17
Modified MX left w sentinel dissection
Radical MX right. No recon
Followed by chemo and radiation.
ERPR + HER2 -
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- love the song list idea even if we have to name them and look them up!
Rebamacfan123, sorry you are feeling blue today. We have all been there! Definitely praying for no spread but as you will see sometimes it moves fast and sometimes you will spend time waiting and that is always the hardest part for most of us.
Sorry you are having to join us but you really found the most amazing girls to help you through.i don't know what I'd do without any of them. I am so glad you found a good surgeon, they will help you medically but we are happy to help when it's tough mentally! Welcome and as you hear us referring to the bungalows, it's where you go when you have your surgery and we are all at the bar waiting with a drink and a chair you for. If you read back through these pages, you will see many references and pictures to that0 - love the song list idea even if we have to name them and look them up!
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Aboob - so funny that you brought up a playlist. I'm journalling my BCBS journey for my family and close friends and the entry today was about the music I'm listening to! I've been on a bit of a Tom Petty jag today - but also pulled in some Mary J. Blige.
Here's my one week from surgery Playlist:
The Waiting - Petty - How appropriate, right?
Free Fallin' - Petty - How I feel at night.
You Don't Know How it Feels - Petty - What I want to say to everyone!
Don't Come Around Here No More - Petty - What I want to say to Cancer
and....Every Tear - MJ Blige - What I keep telling myself
Yesterday I was listening to Eminem and Green Day - the day before U2. LOL I bought concert tickets to see U2 and Green Day later this year and I'm determined to go.
I even have a Cancer Sucks playlist. I'll try to upload a picture of it.
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I'll add:
Tim McGraw Live like you are dying
Andy grammar. It's good to be alive (this one will make ya bop around no matter where you are!)
Beatles-let it be
I have tons more but will leave Iit there for now.
For a good cry, Martina McBride "I'm gonna love you through it" it's about breast cancer and even made my husband cry. Not that we want sad songs but sometimes a good cry is healthy too.
Shellybeans, my cancer playlist is titled F cancer!!
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Went in for my radioactive dye injection this afternoon in preparation for my surgery tomorrow. A needle that close to my nipple didn't hurt as much as I thought it would! So that's positive.
I've noticed that a lot of you beautiful ladies had or are having mastectomies over lumpectomies. Was that suggested by your doctor? Or personal choice?
I feel like in the face of all of you superheroes, I shouldn't be sweating my little lumpectomy. Lol
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DaniCalifornia - I don't think you should minimize what you are going through. We are all going through a challenging time whether it's a lumpectomy or UMX or BMX - it's still cancer, it's still scary, and it's still a sobering event for sure. My BMX is my choice - in terms of both instead of a uni - but I cannot have a lumpectomy due to the size. It was a very difficult decision to have a BMX but I cannot handle having to go on with another "healthy" breast and the chance of cancer in the future.
My cancer came on in the last year - clean mammo in Nov 2015 - so I think I would drive myself crazy with worry.
We all get her differently and should never minimize what we are going through just because it doesn't seem as complex as another - it's all still very personal and carries the same emotional toil.
Hugs to you on a great recovery. We will be waiting at the cabanas!
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I forgot lady antebellum- one day you will
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Wanted to know everyone's experience with their Sentinal Node biopsy. My pain from my partial mastectomy and my reduction is really a lot less than I thought I would be. My discomfort is from thre 6 lymph nodes I had removed. Not horribly painful but keeps me from getting comfortable at night. How long does this discomfort last?
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Hi DaniCalifornia,
My lumpectomy on Jan 4 ,2017 was what my surgeon suggested. I now need to go back in for a sentinel node biopsy . I was dx with DCIs and then after lumpectomy there was an invasive component and the BS thinks we should check the SN's . I am hoping for good outcome . Good luck tomorrow, we will be here when you get out . I will be going back in on the 26th .
💪🏻
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cowboy up, same. I only had lumpectomy but haven't had that bother me one bit. My lymph are causes my pain and I'm over two weeks from surgery. I have a seroma in my armpit which has gotten better but I get a pulling feeling down the inside of my arm almost to my elbow. I found folding up a smaller throw blanket and tucking it under my arm helpful to sleep. I am sitting here now with a heating pad in my armpit for the seroma...although it's better, I can still feel a lump there. I only had 2 removed too. I hope those suggestions might give you some relief. They also said I could take anti inflammatory meds but those don't go well with my blood pressure medicine so I try to avoid. Best of luck
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Received at least partial pathology report tonight after Lumpectomy and SNB on 1/17. 0/6 nodes - thank God. Everything else similar to original biopsy pathology- 1.3 cm tumor; grade 3; triple negative; Ki-67 70 percent. The original biopsy showed IDC but the new pathology talks about DCIS and IDC. Margins aren't' shown as positive, negative or clear. It just gives measurements so I guess the surgeon will tell me that?
Recovery from lumpectomy surgery has been fine. My breast incision area has been numb for a couple days and I am wondering if that will change?
Positive thoughts to all of the ladies going through surgery this week. I found that the SNB was not pleasant, but not as bad as I expected. Prayers to all - pleasant cabana visits, and speedy recoveries!
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yay gt!!!! I bet you will sleep well tonight with that info. hooray for NEGATIVE NODES!! my path report also just had measurements for margins - they use those numbers to plug into nomograms. your surgeon will do that for you. in the meantime - get a good rest knowing you got the path!! glad to hear you are healing well!! enjoy your bungalow!!!
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GT1965 that's awesome news for you! I had my lumpectomy and SNB on 1/11 and my nodes were clear too although my margins were not so looks like I'll be going back for surgery either this Wed or next.
In regards to the numb breast, that's what I had too. Looks like I'm just about a week ahead of you in recovery time and now I mainly just feel the numbness near the axilla incision though it seems to be getting better. I know each person heals differently but as for me, it seems like the first 3-4 days post-op were the easiest. Now it seems like the nerves are coming alive so even my vibrations from walking cause weird sensations in my breast with some mild pain. My steri-strips on the axilla just came off today. I feel less pain in my breast when it's compressed so definitely be a good girl in regards to that. Here's hoping the rest of your recovery goes smoothly and that you continue having an optomistic attitude through treatment. 
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Thank you annoyingboob and ShareTheLight - This thread is sooooo much more helpful to me than anything else I have read.
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My short term memory is gone too so I don't think I can handle responding by name right now or I'll never get anything posted....chemo brain, sigh.
How I decided on MX vs. lumpectomy. I originally was going to get a lumpectomy but then they found a second tumor and the BS said they were too far apart for a lumpectomy. Didn't matter anyway because the night before my surgery I found out I was BRCA2, it was too late to change from a uniMX to BMX plus I just wanted the breast with the tumor off ASAP, sort of like when someone says you've got a spider on you and your screaming get it off get it off, that's how I felt about the tumors. Plus it was Garde 3 with an OncotypeDX of 40 so very aggresssive and i was imaging it metastisizing any minute...definitely PTSD.
After my UMX I had cord like things under my skin and found out after the swelling went down it was the drain tubes. I had no idea they were so long and looped around the surgery site, like 8 or more inches each tube--I thought it just went under the skin a couple of inches. They probably bothered me more than anything with the surgery .I had all sorts of weird pains after my MX, after about 5 weeks it really got better. After the tubes came out, I had to get them drained 3 times but it was no big deal, they numbed me up and I didn't feel a thing and it feels better afterwards. All those nerves getting cut really takes a bit for your body to adjust to. Wish I had known about the mirror trick. I'm going to try that next time my boob that isn't there itches again.
My MO said I didn't need radiation. I didn't question her because I was so relieved after chemo but it's always bothered me a bit since the PA had told me that everyone gets radiation--she's never had a patient that doesn't get radiation.. Maybe I should have talked to an RO for a second opinion. Is there anyone who isn't getting radiation?
Cheers to everyone doing so well with your surgeries! So inspired by you all. I still don't know when I'll get my surgery for my other MX and bi-recon, with this ongoing c.diff... really hard to keep my spirits up.
Did I read someone say you have to sleep on your back after surgery? Ugh I can't do that at all, and believe me I've tried with all sorts of sleep meds too. Does anyone know how long before you can sleep on your side?
Thanks everyone for sharing and being so strong. When I'm feeling alone this is the place to come to feel better and not alone! Love you all so much!
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