2018 - February Surgery Support Group
Comments
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Thank you strengthandjoy. Regardless of surgery I will take oral hormone therapy for 5-10 years. I will also have sentinel node biopsy and oncodx to determine need for chemo. I'll keep you posted, I have lots to think about.
I appreciate your thoughts and perspective.
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monicabestrong- I agree with the others. My BS told me all the options: lumpectomy with rads and tamoxifen, single mastectomy, or most extreme was bmx. I opted for that since I'm only 35. There is nothing scarier than the word cancer to make you go extreme. I too do not regret my decision at all. Granted I'm not over all this but it still gives me the best chance at never going through this again. You pick the decision that makes you sleep at night. It is different for everyone.
Also, happy the drains are out of course but now lying in bed, my one site is literally dripping. I changed the dressing and have a towel nearby. I figured I would ooze out of these holes.
I never had to do the Trex thing. The only restriction my PS gave me was to use my common sense and if it hurts don't do it. I honestly never knew what that meant because it hurts when I'm doing nothing. However, that being said, I never had any nodes removed. Don't know if that makes a difference. I also was never given any exercises to do so I'm making up my own from what I look up on the internet.
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MountainMamma and Nursepatient, congratulations on getting your drains out. I remember the first couple of days I went around telling everyone I had my drains out every hour, and they were like, "yeah. I know." No one gets it. We get it. Feel free to tell us all about it all over again. It's so exciting!
I'm still T-rexing it in the shower. Just wash as much as you're comfortable with. (Or maybe have some fun asking your husband for help!) My opinion is that getting doused in warm water, even if I don't thoroughly soap up, is probably better than the sponge bath/baby wipe treatment I'd been getting before. And it feels so good!
MountainMamma, love the T Rex with grabbers cartoon. Did anyone literally get a grabber just for this occasion? Cuz I did.
As for arm movement, I still haven't been cleared by my PS to start PT, but I've been doing some light arm exercises with a YouTube video and it seems to be helping.
StengthandJoy, yes my shirt feels like sandpaper. My incision site and the skin around it just feel really raw and chapped all the time. This is actually a new development after dressings were removed. Wearing as loose and soft a shirt as I can find seems to help, also just not moving too much. Please let me know if your doctor says anything more helpful.
Anybody else feel tingling in their arm? Mine had gone away for a few days, but now it's back and I'm a little worried because it seemed to coincide with me accidentally lifting something too heavy the other day. Someone please tell me I'm just being paranoid.
Monica, welcome to the group! Your cat is adorable! I want to pet it! UMX was recommended to me because they weren't sure they could get clean margins with LX, and my DCIS was so close to the nipple they were worried they wouldn't be able to save it even with LX. I'm worried about recurrence on the other side, but keeping my healthy boob seemed like the right choice for me, especially since I haven't had kids yet and am hoping to be able to breast feed.
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monicabestrong- I found alot of good reasons to take both beyond symmetry. Taking both breasts offers 95% chance of no recurrence I was told. I am 40 and done having children. I thought about lumpectomy until my MRI showed some other changes in my dense tissues. I couldn’t see doing MRI every year on cancer watch nor can I afford it. Those are very expensive. Right now I have excellent insurance but have had worse in the past and also wanted to take advantage of that as well. I have seen some post waiting years without insurance. I am young and strong and the surgery wasn’t as bad as I thought and alot of people helped me out too.
We support whatever you want to do
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Monica - I, too, felt confused about what to do. I looked at what other women with my specific diagnosis were doing and was surprised to see mastectomies where my SO was recommending lumpectomy/radiation/hormone therapy. After relentlessly drilling my SO, I finally understood well enough to satisfy, at least, myself.
Many of the brave ladies above have opted for mastectomies after calculating the risks and rewards specific to their circumstances. As of today, after two lumpectomies, I have opted to continue down the radiation/therapy route - this was not an easy choice. One of the factors for this decision was my age - I am 59, I will not be starting a family, I realize I have 20 years or so left to live (if I'm lucky), and that I will end, eventually. I am of an age where cancer is not necessarily a surprise (which was, you know - surprise!). Another factor: a small amount of the least aggressive form of DCIS, with a 95% chance of NO recurrence (in the same breast) with LX/rads/therapy. And another: in my case, given all of the above, no difference in mortality rate between MX vs LX.
All of that said: I've decided if I ever get a recurrence or diagnosed in the other breast, I'm done - off with the boobs.
And finally: I am awaiting my own genetics testing for BRCA1, BRCA2 and seven other genes. If that comes back, I'm done - off with the boobs. And the ovaries.
I believe everyone who has had to make that decision feels for the next person who has to make it - it's hard, and confusing, and scary.
I won't know which way I'm going for sure until the test results come in. I am not looking forward to either of the choices I have, but I am READY to move forward.
Hope this helps. You're with the right group!
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I am glad to see some follow are getting drains out. I am praying about mine coming out tomorrow and scared about the tape and sensitivity and sandpaper feelings.
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The skin pain some are talking about may be what’s called Allodynia or cutaneous/tactile Allodynia. I have this most of the time with Fibromyalgia, so when i got that sandpaper-against-sunburnt-skin feeling on my boob, I figured surgery had triggered a flare-up. But if others are getting it too, perhaps it can be temporarily triggered by surgical trauma in people without chronic pain.
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Thanks for the link, Fembot. That's interesting. I find the pain especially weird because when I got to touch the skin in the place where it hurts, it doesn't always correspond to the area I think it does, or the skin will be much less sensitive to the touch than I would have thought. MX sisters, how much sensation do you guys have in the affected boob? I actually just found an area today that's much number than I thought, and I'm not sure whether it's a new development or whether I just didn't notice before.
UPDATE: Just realized it's National Women's Day! Happy happy to everyone here! I'm "celebrating" by getting my first fill, haha!
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Hello everyone,
Well I'm 2 days after my first fill and without drains. Yesterday I woke up very sore. It felt like week 1 all over again with the muscle aches. I'm assuming that's what it will feel like since my TE's were placed under the pecs? Today seems a bit better. Does anyone know what it feels like to have a seroma? I feel some "sloshing" at the bottom of my breasts but don't know if it's fluid build up or just the water balloons implanted in my chest. Either way, strange feeling. My PS told me I could have my implant exchange surgery 2 weeks after my last fill and would only need 1 week off work.
I did find out I must be allergic to Bactrim. I completed 1 week of antibiotics Tuesday and then noticed a head to toe rash yesterday morning. I've loaded up on Benadryl but the rash is still there. On the bright side though, the Benadryl makes me super drowsy so I slept like a rock last night. If anyone is having any problems with sleep, take Benadryl.
32b: I feel completely numb when I touch either breast, yet I constantly have the burning sandpaper feeling. I was told it's nerve pain and is very common after MX. No Tylenol, ibuprofen, or hydrocodone will help this. If it gets really bad, you'd have to ask for something like gabapentin or Lyrica which are for nerve pain. Good luck with your first fill. Is your TE over or under your pec muscle?
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NP35 ... I have a sloshing spot at the bottom of one breasttoo that showed up after my drains came out. It varies how much fluid seems to be there, figure it’s just waiting to get absorbed? As far as your rash, maybe coconut oil with some lavender? My son had a reaction to penicillin and was covered in spots. Benadryl didn’t seem to touch it but the coconut oil helped clear it up. It also may look worse before it gets better since it takes a few days for whatever to get out of your system.
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Hi NP,
I was much more sore after my first fill then my second. I realized that I was slouching and not keeping good posture to relieve my chest muscles, but this made everything else more sore. The second time I was very careful with my posture and it helped a lot. Aleve also gave me some relieve the first 24 hours. How many cc did he use for your fill. I only do 60 at a time but I know some drs do more then that-I think that would make you more soar too.
I don’t have sloshing, but it seems a Seroma looks like a lump or cyst and you will see it. I believe it is liquid that is usually drained by your drains and your body is just working to absorbs it. My PS said the more movement, the more there is to drain.
My TE are also placed under my muscle, I hear this is more painful, but my PS thought in my particular case/body I would be more successful. I think it is a small boob problem, but I am unsure.
My pain and muscle tightness comes and goes. It isn’t consistent. I wish I could put my finger on what activates it, but it just has a mind of its own.
Happy Women’s day to all of you strong, brave and inspiring women
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I've done boudoir shoots before so after I made my decision on bmx I didn't feel like I needed to do another one. But the next day our family photographer mentioned that her assistant was looking to expand her portfolio and own business and needed models so I figured the universe was telling me different. I messaged her about being interested if she needed a boudoir model but that my time frame was short and why. We were able to work out a date and found an empty wedding venue with beautiful light that let us use the space for free. Anyways, the day we met was healing in a way I didn't know I needed yet. Mostly a chance to feel beautiful in the middle of all the anticipation of surgery, even being able to forget it all for awhile. Today I got my pictures back! This was the last one we took. I hope you all still feel beautiful too 😘
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Mountainmama - I love it.
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beautiful Mountainmama!!
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Beautiful photo Mountainmama!
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I had my first fill yesterday but before the fill my PS noticed the sloshing and said we need to aspirate that fluid out ... he ended up taking over 50 cc from each breast below the stitchline .. then filled 50 cc in each TE. It’s funny to me cause I thought the sloshing was fine 🙄 and the hard area was bad ... hmmm. PS said I need a firmer sports bra to keep compression on so I got one on the way home. My TEs are under the muscle so the iron chest is back and tighter than ever but I have to say at 3 weeks and 2 days my arms are feeling much better I am able to take clothes off over my head!
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Great Photo MMM046! Drains were out yesterday and I got my backwards shower, not much of a shower but still very appreciative. I think I cried for an hour once I got home and realized everything at this stage.
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Mountainmama, beautiful picture. I always thought it'd be cool to take some pictures like that but I've never had the guts to do it.
Teaberry, I'm a little nervous now because I think I have some sloshing too and no appt til the 20th. My PS said sometimes if a little fluid builds up, it cushions things too. He didn't seem too concerned but I guess we'll see. I find it interesting and confusing how one Dr can be so different than the next. I also have my TE's under the pec and have the tight iron bra. Have you found any great ways to help the ache? I'm taking ibuprofen but it's not helping that much.
Jt3, Yay for no drains and a shower! Losing those drains really makes a person feel more human again as does a real shower. And I think it's a good thing to have a good long cry every once in a while. We try to be so strong and say we're ok when people ask. The reality is that this sucks and we've lost stuff. I took my good health and perfect life for granted up until now. If anything, I hope this journey makes me appreciate things more. I know my case is not as serious as some others. All of you who will be going through chemo or radiation, I pray that you do well and it goes fast. You are all super heroes in my book.
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You're all superheroes to me, too. I had my bi-weekly phone call with my BCBS nurse counselor today. We talked about the anxiety I'm feeling as I wait for genetic test results, how it feels to not yet know if I will have mastectomy or radiation. She asked me how I coped with the anxiety. I told her three things: no matter how stressul it might be to deal with the administration of healthcare, no matter how overwhelmed or in some cases incompetent they might seem, that I was in control of how I let it affect me - that I could choose to feel good or bad. However I feel, I still have breast cancer and it needs to be gone. So I choose to fall on the side of good, with my eyes on the outcome. Second: when that becomes difficult, I have these forums, where I can vent appropriately, where I'm understood, and where I am reminded I am not alone in this diagnosis. Third: I have the arms and ears of my friends and family, who let me vent anger or fear, so that I make room again for the good.
My nurse was satisfied
I am grateful for ALL of this, which is the silver lining in this playbook, for me.
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Kaywrite- you are so strong and I am so happy to hear that you are choosing “good”. We must enjoy each day to the fullest we can!!
Question- those of you with DMX and TE’s behind your pec muscles- do you feel that when you bend forward they are going to fall out or at least that you are putting so much pressure on your pec muscles? The iron bra is such a great description of how this feels day to day, but when I lean forward it is such a weird feeling. I hope my pec muscles are strong enough to keep a good grasp on the TE as they continue to get filled. I have only had two fills- they are only going to get heavier😬. Sometimes, it actually feels like my pec muscles are curling around my TE. That is such an odd feeling too. I guess these feelings will not be so odd after awhile.
Happy Friday!! It is sunny where I live and I plan to enjoy the outdoors today! I hope you all enjoy this day too!!
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MountainMamma, thank you so much for sharing that beautiful photo. It brought tears to my eyes.
Very proud of the shape my boob is taking on after first fill. Starting to look like itself again, but the poor thing has been thru a lot. My TE is under my pec as well, so I'm feeling sore and tight all over again. Not too bad since PS only filled 45 ccs, so I'm sure next time will be even more unpleasant.
Just lifted a heavy pot if water and felt the effort in my pecs that are now over my boob. What a strange, strange feeling!
kaywrite, I'm so sorry you're still waiting. I'm glad you have a positive attitude, but man this whole thing is tough.
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Nurse patient - I don’t think the PS worried about the sloshing and what he aspirated out just looked like the drain fluid — he just said only way to stop it from refilling was a better support bra or cami. My next appt is the 21st. As for the pain I’m only using Advil but I heard some people are using muscle relaxers at night PS didn’t prescribe me any 😔
Got my spine CT results back and turns out it’s mild degenerative back disease — wooooohooo. I’ll take it! Was such a relief compared to where my mind was leading me.
Next step - started on endocrine therapy yesterday and PS said need to wait 3 months for DIEP reconstruction. He wants me all healed before another major surgery.
Gotta keep positive!
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Teaberry, I'm so glad your spine CT results were nothing worse. Celebrate where you can!
Thanks so much everyone for sharing your symptoms and challenges. About twice a day I think, "I wonder if this feeling is normal." and then remember that someone on here mentioned something similar and it stops me worrying so much.
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Teaberry, so happy to hear your CT results were nothing bad. I hope someday we all can get to the point that when something hurts, our minds won't immediately think cancer.
This weekend is my daughter's dance recital and sitting through her rehearsal yesterday made me feel normal again. I still ached and burned but visiting with other people actually made me forget about it for a while. I would say the thing that made me extremely anxious was kids running by me, being in a crowded area worrying that someone would bump me in the chest. Thankfully that didn't happen but I felt like I should have a cage around my boobs or something
. If anyone is at the point of feeling down and isolated, I encourage you to get out and do something that makes you feel normal again. It does wonders.Strengthandjoy, yes I feel like my pecs are taking alot of pressure when I bend over. I've noticed that I'm constantly hunching over because it hurts more to sit or stand up straight. I wonder if it will always feel like this until the TE's come out? I hate the burning, achey stretchy feeling. It's always there.
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I had a lumpectomy (1.5 cm) and SNB on 2/9/18. My lumpectomy incision is continuing to drain after 5 weeks. I hav had it aspirated twice and had 7 days of antibiotics after the first draining. Has anyone else experienced drainage after 5 weeks?
Thanks
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Nursepatient, that's so great that you're able to go to your daughter's dance recital! I bet it means a lot to her. How are you feeling about the way you look when you go out in public? Luckily my healthy boob is relatively small, so if I wear something baggy I look pretty much like I always did, but when I go back to work this week I'm thinking about doing some light bra stuffing, as I can't exactly get away with wearing a sweatshirt there.
As of yesterday, I'm starting to be able to lie down on the side where the drains were, at least for short periods of time. Very stoked about that!
Sassy73, when I had my LX I didn't have drainage at all, but I didn't have the SNB at the time, so maybe that's why. My MX drained for about 3 weeks. Breast size and activity level are supposedly factors in how much drainage there is. As long as your doctor is on top of it and doesn't seem worried I'm sure you're fine. I'm glad you don't have permanent drains in! 5 weeks is too long for those!
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Okay, I’m done bumming myself out on the couch. Part of this revelation comes from trying to get back into jeans after 3 weeks of eating Oreos by the handful 🤣 Really though... that extra one you to take to eat on the way back to the couch doesn’t count, right? Hoping to get the okay this week for some mild exercise.
It’s been so hard not being in my dance classes and knowing my stamina is shot. It’s been 7 weeks as I was under the weather pre surgery. And around the time I get to feeling good enough to teach again it will be time for another surgery. Each week we get a new song and I’ve been watching the choreography videos we get, making mental notes of the ones I should go back to learn. This week was a new cool down, the song is “next to me” by imagine dragons. I sat and cried listening to the music (it’s in.cred.i.ble.) wishing I had the range of motion for the choreo. I know I’ll get there, it just won’t be tonight.
I’m sure you’re all eager to get back to your routines and movement too. So I wanted to share about OULA is. It’s really hard for me to not gush about how much I love it. It’s also an experience that’s hard to explain without trying it.
You might not think that a dance fitness, or a yoga class is your thing. With what all our bodies have/are/will go through this might be an outlet that's helpful not just physically but with all the emotional stuff too. If you think about the power of music, it's ability to bring joy, sadness, romance, healing, etc add then add movement ... really cool stuff happens.
If you are interested, there's the website you can visit — oulafitness.com — there's a short promo video that will better convey what I'm trying to. There's also a free video of each format you're able to try. I have no idea where everyone is located, but you may even be able to find a class local to you.
With wanting to ease back into moving/stretching, check out OULA.one — the class available there is great. I have another more recent class downloaded I can send to anyone as well.
When your body is ready to handle more, give a regular OULA class a go (this is what I teach). It's an hour to have fun, to forget, to find your voice, be silly, be sexy, be strong, be vulnerable, ... whatever you want to take or need
This post got more involved than I intended! But these classes made a world of difference to me, even more after my dx and I imagine as I continue healing.
I hope that you're all catching glimpses of seeing/feeling like your pre-surgery selves (though my jeans were not happy to see me again I succeeded with a non button up shirt) as we’re re-emerging from our post surgery cocoons
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Thanks for letting us know about Oula. One of my goals once I'm all healed is to be more active and in better shape, but I've never been a fan of going to the gym, so I'll definitely check this out.
Going into work today. Wish me luck. I don't feel quite ready, but I also feel like it's time to start shedding the cocoon. We'll see how it goes.
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32b,
Good luck with getting back to work. I went in this morning for about 10 min just for my wellness test we do each year and was asked how I am doing about 5 times. It really is a caccoon we have ourselves in. I'm greatful that so many people care but I also feel overwhelmed by the attention and especially when it's sort of about my boobs. To answer your question about how I feel about the way I look in public. Right now after 1 fill, I think I appear fairly normal looking. I don't wear anything tight though. It's pretty been tshirts or hooded sweatshirts. My plan is to go bigger than the A cup I was before all this so I'm hoping with each fill I don't get more self conscious. I've already heard some people comment along the line of comparing it to a boob job, or at least you get bigger boobs.
Mountainmama, I'm going to check out the Oula and also that imagine dragons song. I love them! I also hate how out of shape I feel, not that I was in great shape before but I just feel like I lost any arm strength I had. My goal this week is to do some light hand weights and some exercises.
Also, asking for positive thoughts today. I see an oncologist for the first time. Apparently clear margins aren't the same as "close" margins. I'm just hoping and praying he says that I don't need him and I'm good to go.
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GENETICS test was negative for BRCA and others. So it's on to radiation for me. I am so relieved to move on. Limbo was terrible.
Reading up on all of you, and positive thoughts for you, Nurse! (from an unclear margin)
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