2018 - February Surgery Support Group
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Pathology came back today. Good news overall 😊. While my tumor was 0.8 cm larger than measured on US and they found micromets in a second sentinel node — zero Axillary node involvement!
Interesting to find out from my BS that there is a major change in how they stage Breast cancer starting this year. No longer is lymph node involvement an automatic Stage II minimum they are now using the "old" anatomic TNM staging in combination with prognostic staging including hormone receptors, HER2 status and genome test results — here is a link to read up if interested..
http://onlinelibrary.wiley.com/doi/10.3322/caac.21393/full
Turns out I'm Stage I B 😊. Tissue has been sent for a Mammaprint and I am meeting with MO later this week.. really good day!
Pain is moremanageable but still taking Dilaudid every 6 hrs (Percocet gives me severe nausea) and Advil mostly for the underarm pain - shooting nerves? - and swelling on my left side. Never prescribed an MR. If the swelling would go down and I could get these drains out the party can really begin. 😉
❤️🙏🏻
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My surgery is a week from today. I’m gathering all my supplies. Is anyone using any special soap after surgery? Like something antibacterial?
Lizzie hope your surgery went well and you are recovering comfortably.
Teaberry - My PS told me TEs will be partially filled on the table. I wonder why some aren’t? Is it a PS preference
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Nursepatient thanks for giving me a laugh. I'm counting the hours until I can shave my armpits and properly wash my upper body. And my hair. Just two more days to go until the final drain is out. My mom helped me wash my hair in the sink a couple of times. I've been spraying with dry shampoo in between and believe it or not it's actually working OK.
Strengthandjoy, I actually felt a little worse on day 4 as well. I think it was a combo of easing off the stronger medicines and having the emotional reality set in. 11 days out now though and feeling almost like myself again.
HopefulAC thanks so much for the heads up on the TE fill process. Sounds yucky, but I'm looking forward to getting it over with. After the first fill do they give you a partial prosthetic to look "balanced" or do you just stuff your bra or what? Also, maybe this is a dumb question, but where do they do the insertion? Do they go in through the incision you already have from surgery or what?
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My PS didn't do any fills during the actual surgery since the skin on one side was showing stress, "turning blue" as he phrased it. So maybe fills during surgery are dependent on the integrity of the skin that the BS leaves for the PS.
For my post-op fills, there is a port built into the expander. The PS has a magnetic thing, sort of like a very large q tip that he uses to find this port. The nurse then rubs alcohol on the spot and the PS uses a syringe, a lot like any IV saline type injection. With the chest being so numb, I haven't felt him putting the needle into my skin. It is an odd sensation as the saline starts filling the expander, though.
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The port in my expanders is above the incision from the surgery. I can't imagine having to go through the incision.
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ItsStillMe — my PS had me get hibicleans to start using before surgery a few days (along with a nasal ointment) that I’ve kept using since I have it, especially around where my drains were at and along incision.
Drains came out today!!!! Hello legit (well maybe semi legit) shower!! It’s update your status on Facebook worthy -except not everyone there is in my circle of knowing that this even happened
I’m not sure how limited everyone else’s movement is, maybe depends on if/what reconstruction is happening, but I got reminded that I’m to keep my butt on the couch for 3 more weeks. Anybody have any binge worthy shows?? I watched the first season of imposters on Netflix yesterday.
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Maggie2 - that makes sense about skin integrity. I will be having rads approx 4 weeksafter surgery so I don’t have a long time to expand. I hope my ps is able to fill during surgery.
Mountainmama - thank you for the info, I will use Hibiclens as well. Ah... the simple pleasures in life, like being able to shower! I cold capped during chemo and the capping protocol doesn’t allow you to wash your hair in the shower during chemo and for 6 months after. So I totally get how you are feeling.
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32B - my fill yesterday went just like Maggie2 described— they find port of TEs with magnets, mark it, wipe with alcohol and then inject. Bc I wasn’t numb I didn’t need really feel it. Since i had BMX i wasn’t given any prosthesis. My PS says I cannot wear any kind of bra until at least 4-6 weeks. The pain I described yesterday in the chest lasted a long part of the evening and I finally took a Percocet which finally relieved it. Today it’s been more sore than I was right before the fill and I’m hoping i just felt all of this pain bc is the combo of getting drains out, filled and dressings takes off . I was a little bummed bc I do feel like it was a step back recovery wise:(
Itsstillme-my surgeon decided not to fill me at time of surgery bc he made decision to let my nipples have more access to blood flow and wanted to give them good chance to survive. I find out tomorrow if I need radiation - hoping no- but if I do they told me that fills stop during that time and they may even have to reverse/take out some of the saline. Fingers crossed again that it’s not necessary.
Mountainmama- I Too was reminded yesterday that despite me feeling ok before fill and having pretty good range of motion I need to stay pretty sedentary for the next month:) I did just catch up on all episodes of Amaxing race so that was fun:)
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I had my first post op visit today with my plastic surgeon. He thought everything looked good. Drains are no where near ready to come out yet though. Maybe next week.... I did somehow manage to wash my own hair in the sink today. Nobody said I couldn't move my arms any which way and it didn't hurt so I went for it.
My general surgeon called me yesterday to tell me my pathology report was all clear and I don't need her anymore. All margins were clear and it was just DCIS like they thought. But then today the PS said the margin was less then 0.1 cm from the skin and asked if I'm seeing an oncologist. So what the heck? Now I don't know if I need to be concerned or not. I may end up making an appt with an oncologist sometime in the future just for peace of mind. I do find it amusing though when they talk bout how little breast tissue there was or how there wasn't much tissue to work with or cover the implants, etc. I'm pretty sure they're all sugar coating the fact that I had the smallest boobs they've ever seen.
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Wow nurse patient washed your hair!!! I got marked at PS this morning and this afternoon I g4 injections in each breast today for the node check tomorrow during surgery. My right breast hurts but not the left. I have to be at hospital at 6am CST. I get Valium and some anti nausea in my mix and then not sure what else in IV. I can’t believe tomorrow is the day and praying no node involvement and God can move this mountain!
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Sorry to hear about your bad news Kaywrite, I was really hoping you would get really good news the second surgery. I wish you well on further treatment . Hugs and prayers for you. I go tomorrow to get the results from my first surgery . I've have been thinking positive and keeping my mind busy. Hoping for good results. Good luck Kaywrite
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JT3- praying for you and God can move mountains!!!
Nurse Patient- way to go on the hair wash:) I think this has been the only time that I’ve been somewhat ok and it’s been a benefit to not have hair bc of my chemo
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I had my first post Op appointment with my PS and all looks good so far. Is anyone else getting skin irritations from the tubing on the drains? It almost feels like it is burning my skin....
Nurse patient: I keep getting the same “small boob” remarks
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Strengthandjoy:. Yes I also am finding the drain tubes to burn and irritate at the insertion site. I've been cleaning the insertion site with hydrogen peroxide and then also taping part of the tube to my side to take some tension off the constant moving and pulling.
Jt3: saying prayers for you tonight that all goes well tomorrow. If you have problems with nausea, ask for a scopalamine patch behind your ear pre op. It works wonders for about 72 hrs. Wishing you great results and an easy recovery.
Wishing everyone else on here peaceful sleep.
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Thank you, Princess. Yes, being told a margin is not clear and there is no tissue left to take threw me off balance. Since then has been a whirlwind of research, a Q&A with Johns Hopkins (who answer the same day!!!!!), looking for who/when/where for a second opinion, refining my questions and re-asking my surgical oncologist, hoping to get answers in a way I understand more clearly, setting up genetics testing and jumping through insurance hoops. Such fun!
All that said, I'm feeling much more at ease. I remind myself that no matter how I feel, I have to take care of this - so take a deep breath. After much orating with friends (bless their hearts) I was finally able to separate the swirl of words on a pathology report from what I really wanted to know: would having a mastectomy , as opposed to radiation and hormone therapy, decrease the chance of recurrence? The answer is no - same results in my case, @ 4% chance at 10 years.
The upcoming BRCA test will sway the decision, as will consultation with the radiologist, and the second opinion.
Making the best informed decision is exhausting. I'll be glad when it is done. I sure am learning a lot.
Highly recommend Johns Hopkins for questions re understanding pathology reports: http://www.hopkinsbreastcenter.org/services/ask_ex...
Hoping for the best of news for you - today now, I suppose. Thinking of you all.
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kaywrite, thanks for the JH question and answer link. Going into surgery thinking I was ER+/PR+, and then getting path report that I'm triple negative has me searching for info while I wait for the mammaprint/blueprint results.
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Yes, yes, 32B..I totally remember how RELIEVED I was to get that drain out!!! They are such a pain. I was lucky I only had one (there are benefits to having small breasts lol)
Glad you're doing well!
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Hi, I read guidelines from the American Ass'n of Plastic Surgeons that recommended using the Dial antibacteriial foaming soap. I still use it, to this day. I like it a lot.
It was great for when I couldn't really lift my right arm too high, and when you can't get your surgery area too wet.
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My PS did a partial fill in my TE to fill up the same amount of CCs that were taken out. However, my right cancer breast has always been naturally smaller than the other one, so he went ahead and did a 2nd fill in the office..now it's actually a little BIGGER than the healthy breast, but I don't mind. I dunno why some PS's fill and some don't, at surgery.
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32B..i think your idea of providing kits is wonderful.
Before my surgery I made my own kit that included dry shampoo, antibacterial cream, all my meds, snack bars, bottled water, reading material..can't remember what else.
You might want to contact some nurse navigators at hospitals in your area..maybe hospitals would be willing to donate for that..
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kaywrite, I just read that your margin near the skin was not totally clear - neither was mine, apparently. The BS told me that the margins on all other sides were 2 mm but on the skin side, there was nothing left to take and that radiation would take care of any stray cells. I do have to have another final mammogram on March 5 (ugh, another???) and then the BS said she'd see me in another 6 months for a follow up. I hope you get the green light for no more surgery as well! Yay for radiation starting soon (not really but looking at the bright side??)
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kellyoc519 - exact same thing - nothing left to take! I missed that your anterior margin was still positive. I know you'd rather it not be - like me - but I admit it eases my mind a bit to know someone else in a similar situation. It really scared me, but I have a super surgical oncologist who reminds me constantly (and gently) to keep things in perspective, that this is not what is going to kill me, probably.
I keep circling back to even though his recurrence computer program spits out a 5% chance of recurrence in 10 years with LX, rads, and hormone therapy, with a small positive margin (2/10ths of a millimeter), what would a mastectomy do? A snippet of his answer:"A valid question. Overall, the risk of recurrence with mastectomy is lower, but similar, to that of lumpectomy. The survival is the same for both - more surgery does not guarantee longer life. The recurrence rates are similar (but lower), but you are able to avoid radiation in the majority of, but not all, cases when you have a mastectomy..... Unfortunately, there is no surgery that can guarantee a cancer will not return. One thought is that the biology of some tumors is such that even a few cells can survive and grow into another tumor. Another possibility is that some (1-2%) of breast tissue may be left behind during mastectomy (impossible to determine what is fat and what is breast on the outskirts of the breast anatomy) and that tissue may develop a cancer."
So looks like no more surgery in the foreseeable future. Yeah. But I'm telling you, and in support of everyone has chosen mastectomy over lumpectomy, I fully support those decisions, too, and would do it in an instant if it is recommended, say with a positive BRCA outcome - or for any reason I chose.
So, I feel better than I did yesterday. Still getting genetic testing and second opinion, which he knows, but predicts will not be any different from his own.
And, yes, ugh for another mammogram. Will not miss that. God help me if I ever need another stereotactic biopsy - worse than a lumpectomy.
maggie2 - you're most welcome. I hope it helps!
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Had a laugh with my PS today. : D
Was there for post op. As soon as she walked into the room I whipped my shirt off and flashed my breasts. She laughed and said it usually takes a couple visits before people do that.
It's been 3 weeks, healing up nicely. I do have ripples showing from the 'gummy' implant, and she said they'll get worse. I though I'd escape rippling by using highly-cohesive silicone gel - nope.
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swg thanks for the input. I'll definitely reach out to some nurses.
Thanks for the info on what to expect from TE fills. Sounds...charming.
I'm so sorry to hear that some of you have had bad or conflicting news. Sometimes it seems like the finish line of this ordeal keeps getting farther and farther away.
Nursepatient, congrats on washing your hair! We are truly a pathetic crew that that milestone is so exciting.
As for shows to binge, I recently discovered Parks and Recreation about 10 years too late, but still found it really good. Also highly recommend Master of None. Not sure whether West World counts as binge worthy cuz it's better if you watch an episode or two at a time and let it breath, but it's very good.
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hi everyone,
I have a question and I’m curious if any of you have had this happen... I saw my plastic surgeon yesterday for my first post op. I have expanders and drains without any fill currently. When he checked my progress he noticed that my prolific side was a bit larger then the other side. He checked it and said it was nothing to worry about. However, I’m a professional worrier and now it is all I think about. It seems to be getting bigger (maybe in my mind). Did any of you have that?
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just sat up in bed and burped a lot!!!
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strengthandjoy - did your PS say it was swelling more? My can we side is bigger but they tell me that’s al swelling and totally expected.
I had my drains out yesterday thinking that would ease this constant pulling feeling I have across my chest but nope! Is this another new normal? Getting the compression bra off helped a little bit I still feel like my skin is pulled taut yet when I look at it there is plenty of wrinkles and pouches available. My TEs were filled to 300cc during surgery and the plan is 50cc fill a week until they reach 500cc. — first fill in 2 weeks.
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rough morning here with really high bp and burning left side where drain is. So sore
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Jt3, hope tomorrow is a better day for you. Praying everything is fine and no set backs for you.
I know earlier I said the drains weren't as bad as I had imagined. Well, I take that back. They've become a huge pain in the ass and are so sore at the insertion site. I'm paranoid all the time that they're going to get infected, they pull and rub, and I hate them. As a nurse, I feel like I should be doing a sterile dressing change on these things everytime I clean them but the PS said just put a little hydrogen peroxide on them a couple times a day. I know they're a necessary evil and this is a long shot but any idea how to make the output less? I'm still putting out 50-70 cc/ per side in a 24 hr period 1 week post op. Is there a patron saint of drainage tubes I can pray to? Anyone, anyone? Ok, I'll quit my whining now.
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Strengthandjoy, I haven't heard anything like that, but if your PS says it's ok it probably is. I'm a little paranoid right now about tingling in my arm, but my doc felt my fingers and said it was probably fine. It's a little tough to be convinced.
Just got my second and final drain out! Hooray hooray! Teaberry, I'll keep you posted on how skin tightness feels. Right now it's a little better, but all my sensations seem to go back and forth.
Jt3, hope you feel better soon. There really is a huge difference every day for the first few days. Get some rest and don't be afraid to ask medical professionals and your friends and family for what you need.0
