2018 - February Surgery Support Group
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nursepatient- I did genetic testing right after I was diagnosed. My insurance covered it as long as i did the counseling before hand. My breast surgeon referred me. There are many different genes you can test, research or do the counseling so you make a decision that is best for you
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Hello everyone,
I had my BMX on 2/13/18 and I my drains are still in... Anyone feel like a burning sensation when your arm rubs on anything like the clothes your wearing? And what about “restless arms/shoulders”?! My anxiety level has been like a roller coaster, just like my emotions.
No nurse or doctor mentioned that I would be getting “radioactive protein” injections prior to surgery... I don’t think I felt that much pain when I was in labor!
Tomorrow is my first appointment to fill my TE’s and I’m soo nervous! I’m afraid it’s going to be painful...
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nursepatient— I did genetic testing after diagnosis, before surgery. My mri results though ended up getting read before hearing back and decided on going the mastectomy route then but did have results prior to surgery. I had a small family history of both ovarian and breast cancer/they were also recommending taking ovaries if it had been positive. I have a daughter as well. Since we're done having kids (husband just got his vasectomy a month prior to all this, although he's very supportive through all this his first thought when discussing my ovaries was that he'd done it for nothing 😂) I've had the benefit of not caring about what needs to go, but had a hard time waiting on the brca results and what it could mean for my kids. I got a letter saying insurance covers it but haven’t gotten a bill for my portion yet!
Terrified/hopeful — sorry to hear your radioactive injection was painful. Someone had warned me that it’s the suckiest part
good luck with your fill!0 -
terrifiedhopefil - I also had surgery 2/13 and yes the burning sensation under my arm was/is awful. The swelling as well but that has subsided thank goodness. I was constantly moving my arm trying to find a good position. Things have seemed to even out.now. My drains came out on 2/21 and the entry ports are scabbed over but still sore. The tight/pulling feeling across my chest and the numbness under my arm are unsettling . I’m told that may last a while as the nerves regrow or ill get used to and won’t notice - which is hard to believe! My TEs were filled to 300cc in the operating room will get a fill next week. I hope that experience isn’t too bad — I’d love to hear how it goes for you.
Waiting on my Mammaprint result to figure out next steps— the waiting for test results is the hardest for me. Anxiety level goes through the roof.
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Hi NP35, I did my testing upon Diagnosis and received a BCRA2 of unknown variant diagnosis that affected my decision as that area of study is relatively new and growing and I had an ABCD contact that had similar 11 years ago and then her variant is now included in the panel. The panel had two or three and now mine was 16 areas to test. They asked me if I wanted to pay and test for more and it just felt like an upsell and I said no since my MRI made my decision for me and the lumpectomy lounge and LCIS info. I have a six year old daughter and maybe there will be a cuteness for our children but then. My understanding isn’t she will need early screening.
This is day 8 post surgery and 48 hours with no delaudid and just Tylenol. I went to post op Monday with PS and she took off all the tape and said I am healing good. Think I am a little sore from a friend attempting to wash my hair while I did a backbend over kitchen sink and that tape coming off around the bottom of my rib cage.
I have a blister on each pec and chafing underarms I keep hitting with neosporin and I tuck in some Lansinoh breast feeding pads to keep blisters clean and then the areas where bra rubs I tuck in my shirt if I can for relief.
I didn’t get any drains out this week and wondering if anyone knows the threshold for removing?
Teaberry, I got 300cc last Wednesday during surgery and was told six weeks to heal before next fill. I feel the weight and the soreness of everything still on day 8 but it hasn’t been excruciating but at times I just take a try a Tylenol to see if it helps. Good luck with the Mammaprint.
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32B - sorry about the mixed bag, thank goodness they found it, though. I have always (always meaning in the new world of my breast cancer) found the wait for pathology so intense. When I went back for the path results of my second lumpectomy, a Resident surgical oncologist came in to see me first, look at the incision, etc. He did not talk about path results, leaving that for the surgeon. However, he DID leave the pathology report sitting on the counter. I popped off the table the minute he left and saw immediately that I did not have clear margins - again. Arm yourself with info and questions for your next meeting. I know you will anyway, but it's amazing (to me) to still be finding new things to ask while reading through these forums.
Several of you have been discussing genetic testing recently - my genetics consultation is scheduled for tomorrow - FINALLY. And my first radiation consultation is on Friday. I was hoping to have the BRCA testing done first, as this will help me decide which direction to take. I'll roll with it though.
I've read a couple of disturbing things about the return of DCIS after radiation. Because I have a positive margin with no tissue left to take (after a second lumpectomy), this really confuses me. I'm making this, along with many other questions, to the radiologist on Friday. What a crash course. I feel I've learned an entire different language in the last few months.
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jt3 — for me the drains coming out they needed to be at 30 or less output for a 24 hour period for 3 days in a row. My appt fell during the third day so they took them out. And the shower help, lol. I didn’t feel like mine was clean until I was able to do it myself, debated going to a salon to have it washed but wasn’t ready to leave the house then either.
Kaywrite— I felt like it was great to have a team of doctors but sometimes felt like I wanted them all in the same room to go over information rather than 5 questions for one and 5 for the other. I met all mine in a random order though too
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Nursepatient, my output was down to about 18cc each side in a 24 hour period at my 2 week post-op. He wanted to leave the drains in longer. At 2 1/2 weeks, he finally pulled them, one side was under 10cc and the other was 15. I think my PS bases his decision not just on the output, but also on the appearance of the drain sites.
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mountainmama, since you had your drains out, did you feel any pain during your first shower? I’m not sure how anyone can get used these sensations and tightness... I have an appointment with a PT next week for arm stretches. I feel like a t-rex! Lol I still use my pillows under my arms! And still sleep sitting up in my recliner.
I also hope my fill appointment goes well today, too, mountainmama and teaberry.
I received a call to schedule my first chemo appointment. I’m so afraid to get that part and my chemo port placed
Have any of you already gotten your port and chemo?
Hope everyone here is doing well today... and trying to stay positive!
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terrifiedbutstillhopeful — I’m still TRex-ing it, so it’s definitely not a normal shower but feels good to be able to accomplish it on my own, and is also an escape from my mom, husband and kids. I tried using my electric razor to get underarms done and that was pretty useless since I can’t raise my arm up enough that way yet. My drain sites were sore about 2 days after getting them out.
Oh sleep! I’m actually getting more than I was before surgery since my mom is now dealing with the 2 yo that wakes up wanting to sleep with me. Fingers crossed she’ll break his habit! I desperately want to sleep on my side for a change but can’t get comfortable there yet... wishing I still had my pregnancy pillow ;
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I am 13 days post op today and going to see my PS. I still have drains with about 21 cc on one side and about 35 cc on the other side. The side with more C.C. is the side I had the sentinel lymph node removed. Did any of you notice that side drained longer for you? My expanders went in flat and I am curious if he will add anything to them today... I hear it is more painful a few hours after. Was that true for you? I’m still T-Rexing it too and wish that he would tell me today i can move more. BUT I don’t think that Ian the case until drains come out...right??
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Strengthandjoy, it really seems as if every PS has very different criteria as to when they remove the drains. Actually for me, it was the "healthy" side that drained more. That would have been a good question for me to ask the PS, as to why that side had more drainage. Anyway, I had my first fill at the same appt as he pulled out the drains. I took an 800 Advil before that appt, not knowing what to expect, with the drain removal and the first fill. For the second fill, I took OTC advil after I got home. Again every doctor has such different instructions, as I was told to start moving my arms and doing the specific exercises the day after surgery.
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January and February ladies: there is now a March 2018 Radiation thread I hope to see you if that's your path for the next little while. I have my first appointment on Friday (consultation) and am nervous, with lots of questions. Wishing all of you love and luck, either way.
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I'm 15 days post op still with 2 drains in. I can't get them out until they're less than 30 in 24 hrs. I'm curious why those of you with DCIS had lymph nodes removed? I did not and it was never really mentioned. I'm always learning new things as time goes on. Not that I don't trust my surgeon but wondering now why I didn't have any nodes checked.
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np35 — I initially wasn’t going to have any nodes taken and have straight/pure? DCIS, the MRI didn’t indicate I needed it. My mom was more worried about things being invasive because she felt like I kept getting bad or more escalated news (when i saw my primary initially she mentioned cancer could be there but leaned toward no, then it went from LX to MX recommendation after my MRI, etc), but she was far away and not at appts to process like I did. Surgeon left it up to me to decide. I couldn’t live with my mom’s worry so had them do it. When I talked with my surgeon about it he said that if things were grade 3 he'd have done it for sure but my case was grade 1/2.
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nursepatient
Despite a dx of DCIS i had the nearest node, the ‘sentinel’ taken because its difficult to find these nodes once the breast is removed. After mastectomy, if the path comes back positive for a previously unknown invasive cancer, they would have to take an imprecise chunk of the armpit.
Here’s an article excerpt: “Checking the lymph nodes for any signs of cancer spread is not a standard part of treatment for DCIS, although it does happen in some cases. Early research shows that in some DCIS cases, there may be a benefit in having sentinel node biopsy (removing only the first 1 to 3 nodes closest to the cancer). Some factors that may lead to sentinel or underarm lymph node biopsy:
- the breast has widespread areas of DCIS
- there is a significant amount of high-grade DCIS in the breast
- microinvasion (small amounts of cancer have spread beyond the milk duct)
- diagnosis of DCIS happened at a young age (under 40)
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Hi. Nurse patient, I am 2 weeks and 3 days post surgery and should get my last drain out today. My PS told me the more active I was, the more likely I would generate fluid, so I've been trying to just sit tight. I still have fluid draining though from a drain that was removed on Monday. My PS has had me on oral antibiotics since I came home and said I need to stay on them as long as I have the drains. I've been eating Greek yogurt everyday for the probiotics
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Do/ did any of you experience very tight shoulder muscles after you fills? My chest is tight and uncomfortable, but my biggest complaint is my back and shoulder pain... do any of you have good remedies for this?
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strengthandjoy I wonder if you’re holding your shoulders forward subconsciously to ease tension in your chest. Maybe a shoulder massage or heat would help
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Strengthandjoy, I've also noticed the pain between the shoulders after fills. I think Fembot makes a valid point. It's not just after the two fills that I've had, but pretty much all the time, I'm still catching myself hunching my shoulders. Even in the hospital after the BMX, the nurse said it's just instinctive to hunch shoulders to ease the tension and protect the chest. As for remedies, the best is when I can get hubby to massage between the shoulders! Unfortunately, it's not nearly as often as I'd like haha.
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Hi fellow Feb surgery sisters. I can't believe we are in March!how is everyone's swelling? I'm still pretty swollen under my arm/side and it feels very hard and top of chest? I'm 3 weeks post BMX ? I ask bc I have this crease since the surgery on the side of my breast— doc says it'll go away once swelling does and once TEs are expanded more ?
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Good news! my insision line was jagged and rippled until last night but this morning the sutures have dissolved and the line is smooth. I’m so releived! I’m 4 wks post op. I started putting neosporin on it 4 days ago, so i wonder if thats the reason.
Did anyone else go straight to implant? My foob’s a bit square, not in the footprint but inthe volume.
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Fembot— I did right to implant 2.5 weeks ago. My steri strips are still holding strong so I’ve not seen my incision line yet but hoping it’s a straight looking as it seems. Mine are the teardrop shape which I can definitely feel the top of. As the swelling has gone down I can see the need for the extra fat grafting later to fill/smooth but overall really. Initially felt very hard with the swelling so even though I still feel like they are rocks they are a little more squeezeabl
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thanks Fembot and Maggie2-
I will pay attention to my shoulders and see if that helps. You may totally have pegged me:). My hubby did give my a neck and back message and it relieved it for awhile. It was so nice!! If we could only keep them there all day....
Hopeful AC- I am not swollen anymore... but my armpits still get soar sometimes. I think i squeeze them down and they rub.... I didn’t expect these little side issues. Mine seem to burn more after my first fill. Maybe because of the added space needed in my chest... i don’t know.... I’m sure your doc is right about the crease. Looking forward to one day switching the TE for implants. I think it will feel heavenly compared to the TE
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mountainmama406 thanks for answering. ha! You said all the things i was thinking. Sounds like your experience is exactly like mine. Ok i feel better. ; ) I'm a bit dissatisfied with how hard the new boob is; like a fabric-covered brick. I have the teardrop implant too. But all things considered i'm grateful just to have boobs.
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- Kaywrite, thanks for the post on the March 2018 Radiation thread. I met with BS yesterday and I am so blessed that the surgery revealed clear sentinel nodes on both sides. My right breast is completely clear as well thankfully. My pathology for my tumor is calling it DCIS now and says there are superficial margins near the skin and she said there was not as much fat near the skin like she likes to have. Anyone know what that superficial margin means? Now since I have started reconstruction there will be a group conference/consult about whether radiation is a good step next since it does change the skin and I am trying to do expanders now into an exchange.
- Its good to hear all of your posts and keep fighting the fight strong sisters! I am in pain all over the chest and have blisters from the bra here on on day 10. All 4 drains in still but not taking any of the heavy meds for 4 days now just resting and Netflix binging on shows like Riverdale.
- Fembot - fabric covered bricks isn't too far off.
- What does everyone think about Tamoxifen?
0 - Kaywrite, thanks for the post on the March 2018 Radiation thread. I met with BS yesterday and I am so blessed that the surgery revealed clear sentinel nodes on both sides. My right breast is completely clear as well thankfully. My pathology for my tumor is calling it DCIS now and says there are superficial margins near the skin and she said there was not as much fat near the skin like she likes to have. Anyone know what that superficial margin means? Now since I have started reconstruction there will be a group conference/consult about whether radiation is a good step next since it does change the skin and I am trying to do expanders now into an exchange.
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Jt3, that exact dilemma of another sister on this board - if radiation is involved it changes her reconstruction option to the flap, due to the effects of radiation on her skin. She does not want a flap. I swear, the roadblocks and indecision can wear on us more than the cancer at times.
In my uninformed opinion, I'd take the superficial margins to mean positive, with no tissue left to take - but that is clearly supposition, comparing it to my own son of a &$@ positive margin.
At any rate, AWESOME NEWS about the sentinel nodes and purely DCIS now! One more victory for us all
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I made it thru my BMX Tuesday!!! I stayed 2 nights in the hospital for pain management. And pathology is all Negative! No cancer in right breast. Left breast had Atypical Lobular Hyperplasia, which I knew about from a previous MRI biopsy. It’s has a high chance of devolpinig into cancer down the road and it also means the right breast could develop too. It’s reason I decided on BMX.
Thank you 32B and Fembot for your good wishes. And everyone else for listening and understanding, it means so much to me.
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Happy March, Ladies!
Fembot, great news about your suture line straightening out. Every small victory is important here.
Kaywrite, you are brave to read your path report without the doctor in the room! I've got close margins and am terrified of what that means since I also have no tissue left to take. Really don't want chemo. Let's keep each other in the loop. You're right; it's like learning a whole new language.
MountainMama, I know what you mean about wishing all the doctors would be in the same room. It's disconcerting to have to tell me PS what's going on with my medical treatment. It's like you guys work one floor apart from each other. Can't we just all talk about it together?
HopefulAC- I don't have any visible swelling, but since I got the dressing off yesterday my skin has felt extremely raw and tender. My PS told me not to wear a bra, so I have a loose cotton tank top on but even that feels like it's scratching too much. Under my arm is definitely sensitive, and I have a ridiculous shaped patch of armpit hair where I've been able to partially shave. So many things I didn't seem coming about this whole process that range from the heartbreaking to the downright silly.
jt3 I have an oncology consult Monday to talk about options including Tamoxifen. From what I hear the side effects can be yucky. Are you on it yet?
ItsStillMe, congratulations on coming home and being on the other side of surgery! Excellent news about the pathology too! That's so great!
Question for the group: How long did you guys wait to start PT? I'm three weeks out and haven't yet because my PS is worried about fluid buildup, but I've heard that you're supposed to start early to get your range of motion back. Is this another one of those things where every doctor's opinion is different and we just have to roll with it? I had no idea there was so much grey area.
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I think PT is definitely per surgeon, maybe depending on your reconstruction too? I did immediate implants, mine said definitely nothing for 4-6 weeks but staying on the couch to let things heal. I have a friend in PT who said he’s the best in town so trusting what he’s telling me. His NP said about 80% of their patients do some kind of therapy after.
The last day or two woke up and felt like a switch turned on (or off?), pain in my left arm is gone and have been able to get my favorite cozy sweater on just like before with a happy dance to celebrate.
Latest tv binge has been the marvelous mrs maisel on Amazon.
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