Surgery August 2018
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WonderWoman75 and SadlyNew2018, I pray that surgery goes well for both of you.
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wow, wonderwoman! I forgot yours was so soon. stay strong and hang in there :-
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Hello, it is weird in a way, reading that some of the very things I am dealing with post-op others are going through as well. Funny I don't remember reading about all the things I currently going through like drains, ointment, bloating just to name a few. I was told to go braless which is fine by me, I am a child of the sixties lol, I don't have any binding either. I was instructed to put on bacitracini ointment where the blisters. Thanks for sharing
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I'm five days now post BMX with pre-pec implant recon. I've had strangely little pain. I mean, I've taken maybe four Advil and that's it. I guess there are just no nerves left. My right armpit had full ALND and it's a little tender and I cannot extend it all the way up but it feels fine if I'm not lifting my arm. I've got an ugly bruise under my left implant that I am hoping is not skin necrosis, but I have no idea what skin necrosis looks like. I sent my PS a photo and hopefully she gets back to me soon. This is so far way easier than I had imagined it to be. I even went out for dinner two days after and then again last night. Went to Walmart to get a few things, have been accompanying my husband on dog walks, though I'm not holding the leash or picking up any poop. I can do small loads of laundry. Trying to to lift anything heavy or open any stuck/heavy doors. I think I will drive to my appointments on Wednesday. So far, so good. Except for my path report. That was all bad news.
Wonderwoman and Sadlynew, I hope all goes well for you!
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Hi ladies. Had my 10-day post-op yesterday and saw MO. Surgical sites are healing just fine. She saw pinkish skin that could possibly be the start of an infection so gave me another antibiotic. Drain is still in.
I have a wicked burning down the back of my arm from nerve damage. I'm taking Gabapentin at the moment, but I will see pain management for alternatives because I had similar nerve damage last time, and know that I hate Gabapentin. Good news is that it mostly resolved itself after nine months or so. Lymph node count was 18/18. WTF. It would have been nice to have a clean one.... so definitely chemo and rads. Dose-dense AC+T starting Sept 12. Rads in January.
All in all, feeling pretty good. I'm making a point to use each day. Today, I'm going sailing.
Hugs and healing to all of you! xoxo
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piksie and hapa, so sorry to hear about the bad path/nodes news but glad you are both bouncing back from surgery! I found recovery much harder than I expected and the nerve pain was awful for a while there, but I am 4 weeks out tomorrow and feeling almost like my old self (less one boob). I will be joining you on the chemo and rads train but don't have a date yet. Be well everyone!
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piksie-sorry about the nodes-i know the feeling. I start AC-T on 9/10 so we can commiserate over side effects.
I’m almost 4 weeks out and *still* have a drain I’ll keep another week. Healing pretty well and out and about but I find these miserable temperatures make my weird node armpit feel really achy and my healing incisions don’t like sweat either! I feel strangely detached about these Frankenboobs. Tissue expanders are so hard and my skin seems so thin-do they soften up the more they are filled or are they just going to be weird sidekicks for the next 15+ months?
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hello everyone, surgery was this morning at 10:30. I had a bmx with skin sparing with immediate reconstruction. I'm still very sore. It feels like somebody hit you in your chest with a baseball bat two weeks ago. It's very sore but manageable. They did nerve blocks while I was under surgery in my muscles in my chest which apparently is cutting down on the pain. So it may get worse tomorrow. Staying on top of my medication. The prelim test results on the nodes is negative! I'm hoping the final path report shows the same. My doctor is ordering the oncotype to see if chemo is needed?
Took a peek down and it’s definitely different. But you know what? I’m alive. And I’m going to keep fighting. I have young kids and a husband that need and love me. Sorry for the “self-pep” talk but it’s so needed. I brought a frame of my kids to the hospital. It’s helped a lot.
It’s been 3 week since I was diagnosed. There were days I felt like I should write goodbye letters to my kids and then days I thought everything was going to be just fine. It’s been the biggest emotional roller coaster of my life. But I find that it does get better, at least the worrying part, with time. Anybody in this holding phase, just stay strong. It’s normal!
Hugs to all.
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I feel the same way. Waking up in so much pain it felt like an elephant was sitting on my chest. I signed up for this?
So I am on a push button system with Dulluidad (can't spell and don't care) and taking percoset and valium for the pain and spasms. I am supposed to go home tomorrow, but I have not slept since Sunday night and the pain is getting to me. I am not in a good way.
Last night I had the best nurse and today was good. Tonight I got stuck un the BMX club and my nurse cannot help me. I am trembling from the pain and cannot use the bathroom without a nurse. I feel like I am asking for a favor when I have to pee and my poor husband cannot get in any sleep. He cannot help me and I am literally in so much pain I have been crying for much of the night. I was supposed to stop using the pump but the percoset tabs are not cutting it.
My plastic surgeon made it sound like valuim would be given freely to help with the spasms but not in this hospital. They give me one every 8 hours. Come on. My titties were chopped off and then sewn back up with these scary expanders. My skin feels like it is gonnna pop open. I try taking deep breathes but that hurts like hell and I am miserable. Fuck you breast cancer. I am pissed off and want to just go home with my stuff. I am worried about not sleeping for several days and I cannot take my sleepy meds that I take at home because of a drug interaction that could leave me to respiratory failure.
I chose the BMX to save pain and future surgery. Now, I am wishing i just got a lumpectomy. I cannot win today but I will continue fighting tomorrow. Cancer is a bitch. Too many people dying. We need to find a cure. This is unacceptable.
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oh ww, I feel your pain. Literally. The pain does seem to get worse. I’m been on meds like clockwork and my ‘bad” breast hurts the absolute worse. The nurse said it’s probably where they did more “digging”. Ugh.
It’s easy to second guess yourself. But there was a reason that a bmx felt like the right decision. Try to stick with that gut feeling of yours. My heart goes out to you. This all really does suck. This disease is running rampant with no damn cure. Women are sufferring. I feel like stopping strangers on the road and asking, “have you checked yourself with a self breast exam? Please do!”
Ah, sleep. What is that? Mine only comes in bursts. If we could sleep better, it would at least let us “leave” this terrible pain.
All this pain doesn’t let you process what the hell just happened. I don’t think I have either. My husband wants to stay up here and help too but I don’t feel comfortable with it all. Like you said, we just had our breasts taken off. This is just all so tragic.
We will get through this. And dammit, we will be stronger than we were when it’s all over.
Hug to you. Hang in there.
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Wondereoman75, sorry you going through this. Ask them if you can stay more at the hospital til they control your pain to the level you can get up on your own . Ativan will help you to sleep it is like Valium... but please do not over do on Percocet- I ended up in Er because I overdose with pain meds like Oxicodon- my heart started palpating so hard I thought I will pass out and die .. my arms were shaking ... and I felt rooom getting so hit and my chest tight. Please meds are around the clock...
speedy recovery. My oxicodone regimen for pain was every 4 hours 5-10 mg, I’m 120 pounds it was a killer. After first nite out of hospital in Er I stopped taking it... consider Ativan or Valium out of hospitals it will help you to sleep it’s literally knock you out and you won’t be able to move very fast fall askeep
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Bostoniangirl...
I just got word that I will be sleeping in my own bed tonight! Thanks for the advice on the percoset. It doesn't take all the pain aeay but it helps.
Cheers to getting healed and whole again...
Sadlynew...you too!
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I am posting this for all y'all who may have questioned whether or not your descion to have prophylactic surgery was the right choice. My oncologist told me today at my appointment that the biopsy showed Ihad pagets disease in both breasts and that it is rare to have it in both but that it was a definitely good that I had the surgery because it was most likely to have gotten worse before it got better
Paget's disease of the breast or nipple is a rash that usually indicates a rare type of breast cancer that occurs in women and men. The presence of this rash usually indicates breast cancer beneath the skin, either ductal carcinoma in situ (DCIS), or invasive breast cancer.
Most diagnoses occur in women during menopause, but, rarely, it can also appear in women as young as 20 years. The average age at diagnosis is 62 for women. He stated that up to 90 percent of people with Paget's disease also have underlying breast cancer. However, Paget's disease by accounts for less than 5 percent of all breast cancers. With all stuff I have had to deal with since my surgery I won't lie when I say I did question if I had made the right choice in having this surgery so if I needed confirmation this was all I needed. I know now it was not a matter of if I got cancer, it was just a matter of when I got breast cancer. So I hope this helps some of you about your decision.
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I'm on a pain patch and Norco and still having pain. Ugh. I will say that the pain is not getting worse as the hours past. I was just hoping I would be pain free. Is this normal to still have pain even when on pain medicine?
I went home from the hospital today (24 hours later). I doubted going at first but I think it was a good move.
Wonderwoman - yay! Your own bed is awesome!
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Well, looks like the pain has finally kicked in, six days post BMX with pre-pec implants. My chest feels raw all over. Still managing with advil, which is unusually effective for me compared to most people I think. I'm trying to avoid the opiates because they make me groggy and nauseous and I wake up feeling crappy still, not to mention the constipation. So I will hobble through on advil and tylenol for as long as I can. I saw my PS yesterday and she said everything looked good, my dark spots were just bruising and nothing to worry about. I still have my drains and they are putting out maybe 20-30ml/day each now. I have an appointment to have them pulled on Tuesday. My path report came back and it sucked. I did neoadjuvant chemo too, so there's nothing on the horizon to reduce my risk except rads. I see my MO about it on Friday, and talk to the RO in a week.
Sadlynew and Wonderwoman - I'm sorry you guys are in so much pain. I hope you turn the corner on that soon!
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Just got the path results from my Aug 14 BMX. [Biopsy had identified DCIS only, both breasts, but due to previous occurrence and treatment with rads on right, MX was only treatment option for that side].
Right breast: Small focus of IDC (3 mm) Grade 2; intermediate to high grade DCIS with focal comedonecrosis, extensive pattern, estimated 52 mm span. Pathological staging: pT1a
Left breast: intermediate grade DCIS with focal comedonecrosis, at least 15 mm span (along with a bunch of other benign changes)
Glad I made the decision to have both removed - otherwise I would be waiting for the other shoe to drop on the left “DCIS only” side.
Surgeon did not do sentinel node biopsy but said the invasive area is so tiny that it's highly unlikely it has had a chance to spread outside the breast tissue. Hope he is right. Now waiting for referral to Cancer Agency as he feels I will probably need to go on Tamoxifen or similar... just in case, I guess.
“It's not over till it's over” is the phrase that comes to mind...
He would not drain the excess fluid which is driving me crazy - says the incision is healing well and he doesn't want to open up any routes for infection. Apparently the accumulation of fluid is “normal” and it will be absorbed eventually. So, kind of wishing I had not been in such a hurry to ditch the drains. They were a pain but so is this swelling!
Hope everybody else is managing okay. x
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The drains themselves cause fluid to form. I worried right after my drains were removed that my body would continue to produce the 15 ccs it was before the drains came out but very quickly it reabsorbed everything and became a non issue. It was nerve wracking for a couple days though.
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Good to know, thanks for the encouraging words, Rachel. I asked the surgeonif there was anything I could do to speed the process along and he said there is nothing that will help, just time. (Mine have been out for 10 days and swelling seems to be getting worse, sure hope it resolves soon,)
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I don't know if it had anything to do with it but I walked everyday. My theory was that it would help get everything circulating. It has been my go to solution for chemo side effects too.
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Good advice, I have been walking every day as well. It certainly can't hurt
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Just wondering if there is you can do for bloating!! My waist is huge?
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My waist is probably the same as before surgery - i thinkit just looks a lot bigger with no breasts to balance it out! I am trying to walk every day, doing my arm exercises and drinking lots of water, hoping that will help.
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So not to sound dumb but can someone explain the information below Barney style for me. This is some of the information I received from my pathology report. Has anyone else been diagnosed with similar results and if what if anything should I expect as far as treatments? This is a bit of a curve ball was not expecting anything from the pathology report
Surgery 8/7/2018 PBMX
Paget's Disease both breasts,
RightDx 8/10/2018 DCIS, Right, <1cm, Stage IA, Grade2 ER+ PgR+ HER2 negative
LeftDx 8/10/2018, DCIS Stage IA, Grade 2, ER+/PR+, HER2 negative
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question: had BMX on 8/9, (no recon) had drains for 3 weeks. Have so much fluid, I was sloshing. Nurse drained 50cc each side 2 days ago. (She hit chest wall on one side, now I gave a huge lump there) but I still have so much fluid. Been wearing the post op surgical bra, but it rides up so bad, pushing fluid, up to my shoulder blade!😳. Considering trying ACE bandage. Will one 4” bandage be long enough, or will I need 2 for all chest area. BTW: surgical glue still hasn’t come off, so still feel really tight.
Thanks for all the support from fellow travelers on this road
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Elijahgirl
See attached link -seems like hormone treatment and rads? https://www.nationalbreastcancer.org/breast-cancer-stage-0-and-stage-1
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KK2018
Thanks this puts my mind at ease a little bit.
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I’m so shattered. Got the news from my oncotype score - 27. So looks like chemo is in my plans. I’m so new to all of this and frightened. In the meantime, I’m recovering from having my breasts removed 4 days ago. Not sure how we all get through this. I hate hate hate this. Is anyone similarly situated that I could talk with and vent to?
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sadlynew201: I'm so sorry. My Oncotype score was 27 too. So close yet so far away. I was really sad that day I found out. I know how you feel. I've just finished 12 weeks of Taxotere and Cytoxan. It has been challenging and frightening. My SEs weren't as bad as they can be. I am on a forum for 'Starting Chemo in June 2018' and everyone shared their stories and solutions for dealing with side effects. There is a broad range from people who breeze through and others who have a smorgasbord of SEs. The first one is the hardest I think because you don't know what to expect but then you learn what you need to get through. It was helpful to read through earlier months too. Get lots of rest - be kind to yourself and let yourself greive.
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Sadlynew - I had neoadjuvant chemo and I agree with rachelcarter, the first round of chemo is the hardest, from there you learn how to deal with your SEs. I can honestly say that for me, anxiety was the worst side effect of chemo. Stay hydrated and try to get some exercise every day if possible. Best of luck.
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Sadlynew2018, what is a onconotype score? I was just told I had DCIS in both breast. So sorry about the chemo usually the first two are the worst but it does pass at least it did for me
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