January 2023 Surgery Buddies?
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Kadril22 and Coloradomom1,
I am so sorry you both have had really rough experiences. I'm glad that you are both on the mend now, but WOW - that was a lot to go through. Great news on the pathology report, Coloradomom1. That really is the best thing we can hear, isn't it?
I am on day 16 of two of my drains. I'm officially way over them. Dare I say, I hate them? I was so hoping they'd be gone this week, but after talking with the nurse, it looks like maybe it will happen on Monday if the numbers stay low over the weekend. That will make 20 full days of drains! I'm still sore and struggling a bit with my left arm range of motion. I can lift it above my head (to do my hair, for example, but there is definitely a limit to the range on that side. The right side is sore at times, but mostly back to normal with range of motion. Sleep is still all over the place. Some nights, I sleep all night and well into the morning (well more like from midnight until 9 or so.) Other nights, I'm lucky to get 3 hours of sleep. Most nights are spent in the recliner, which really is comfy, but it's in the main area of the house, so it's in the way of everyone in the morning trying to get to school/work. They try to be quiet, but I have an 18 and 13 year old...they just aren't!
Overall, progress and healing are much slower than I had anticipated - just being really honest here. I hope everyone else is doing well!
Christina
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Yes corrrect - went dti last week -bmx and they dont know for sure until they are in the actual surgery and see how the skin looks - there has to be enough skin or it will tear. They do reinforce internally with cadavar skin or mesh if there are areas of skin concern to help the weight of the implant and to not pull on incisions. I didnt know until I woke up from surgery what the surgeon decided. If he couldnt do that, he would have done expanders.
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Had my BMx yesterday. Skin/nipple sparing and Over the muscle. I’m very lumpy, bumpy and bruised but not in any pain right now. If I move around it’s sore. They did fill the expanders a bit. I wasn’t big before so don’t want to be much bigger than I am right now. We’ll see after the swelling goes down. Not something to worry about now. I still had feeling when I touched my breasts yesterday but less so today. The only bandages are on the incision under my breasts and I have heart bandages on my nipples and over where the 4 drains are. I am pretty nauseous. I never take any meds and I am taking a bunch around the clock. My stomach does not approve! I have not felt the need for narcotics (oxycodone) yet. Alternating ibuprofen and Tylenol, a muscle relaxer, gabapetin and an antibiotic. Emptied drains once so far last night. That took 20 min but hopefully will get faster as time goes on. I’ll do it again this am. Two were very full and two were not. Can’t see which goes where because of the bandages. Just interesting. In bed I have a wedge with additional pillows, two long pillows on either side of me and the mastectomy pillow over my chest. I am NOT a back sleeper but remarkably haven’t had an issue. I’m using a belt with pockets for the drains at the moment. I have a bunch of options but this seems toworks well. Well, that’s all I can think of at the moment. Happy to answer any questions.
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pjc5399,
Glad to hear that everything went well and that you are resting as comfortably as possible. I was surprised by how "lumpy and bumpy" everything was after surgery. I had a lot of swelling afterward, but that has finally gone down. Try to make sure you are eating a little something with each dose of medicine. Ibuprofen always tears up my stomach either way, but I HAVE to eat something in order not to feel terribly nauseated. I hope your recovery continues without a hitch!
Christina
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Question I forgot to ask Dr/PA…when does the drainage change color? I’ve read that it gets lighter as things heal but curious about everyone’s timeline on that.
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Hi all,
I've just joined this club and while it's not what I'd prefer, reading your stories have helped me get a sense for whats to come and know that I'm not alone. Best wishes for everyone going through recovery.
I had a lumpectomy on 1/16 with an attempted sentinel lymph node biopsy. I say attempted because they dye didn't indicate anything so no nodes were taken. Surgeon was ok not taking any because MRI earlier looked clear. 7mm tumor removed with clear margins. Recovery has been easier than expected..hard to sleep the first night or so but that may have been the pain meds disrupting my sleep more than anything else.
On 1/24 I return to the OR for an oncoplastic reduction. I know that surgery will be a tougher recovery but I'm staying positive.
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PJC5399,
My drainage changed gradually, but it was later in the second week that it started turning more yellow/pinkish. I still have two drains at 19 days in...
Christina
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Thanks. I know I just started this (so have a ways to go with these drains)but I was curious. Hope they come out soon for you!
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Coloradomom, sounds like you had quite the ordeal too.
Sadly, my ordeal isn't over, and last week was one of devastation for me. When trying to slow my heavy bleeding the night after surgery, I was wrapped super tight in a compression bandage for about 1.5 hours. I was swollen from a bleed on one side and a clogged drain on the other. The combined internal pressure and outer compression starved my fragile skin and tissue of oxygen. I had a couple blisters open last Saturday before my first post-op and was instructed to apply antibiotic ointment and keep covered. At my post-op last Monday, the bandages were removed, and the damage is horrible! Fully 1/3 of the left breast flap is in danger of dying, if not already dead, and 1/4 of the right. Reconstruction is on hold, and we are doing wound care management now, trying to save as much of my skin as possible. Once the PS knows what will live and what will die, I'll go back in to surgery to cut away the dead. After that and depending on how much skin is lost, we'll discuss options. Worst case scenario, I've been told, will be flaps of skin taken from another part of my body. Salt in the wounds are the helpful people who've commented things like, "I hope you're not letting this get you down" and "the main thing though, is you're cancer free."
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kadrill22, I am so sorry! I think people don’t know what to say and they try and be upbeat and find something positive to say. It just sucks. What are they using to try and heal the skin? Did they give you a time table? So very much to deal with on top of the cancer.
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pjc5399, you’re correct in that people don’t know what to say, and I do try to be gracious. I am gracious most of the time but sometimes fail.
We’ve been using Silvadene cream for the past week. I had a follow-up this morning with my PS, and our efforts have failed. My skin is dead on both breasts. They are working now to schedule surgery to repair with a latissimus dorsi flap. It is two weeks today that I had my bi-mx.
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What a horrible experience, so sorry.
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kadril22,
I really don't know what to say except that I am sorry you are now dealing with this on top of cancer. It's completely not fair and you have every right to feel all the emotions I'm sure you're feeling. I will keep you and your surgeons in my prayers that they are able to fix this issue and that you can make a (relatively-speaking) quick recovery. There is so much that we don't know about until we are in the middle of the situation, it seems.
Christina
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Hello,
How are you healing? I had my DMx January 12th 2023 and now after 12 days I’m feeling a lot better
I’ve been able to take quick body showers & My husband washed my hair today for 1st time since 😷
Feeling a lot better ..
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Welcome, cecy1616! We're so glad to hear you're turning a corner and starting to feel better - it's a slow and steady race! We hope you continue to heal and feel better each day!
The Mods
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kadril - just wanted to post after reading your story - I had BMX and developed bi-lateral necrosis not long after - a combination of very thin skin, a very thorough bi-lateral mastectomy, and thin pectoral muscles (I had sub-pec expanders placed at the time of surgery) and this was a perfect storm of conditions to inhibit vascularity in the remaining skin. I did require surgery to excise the necrosis, and eventually lost the left expander as I needed to move on to chemo. Seven months later I had the expander replaced, and my PS was very conservative with fills - so that took extra time but we finally got there. What I came to say is that I was finally able to successfully reconstruct without needing to go to a flap. I am not a candidate for LD flap due to extensive skin cancer on my back, and don't have enough anywhere else for DIEP. I am sending you positive vibes and hope my story offers you some hope. Ask your doc about low volume fat grafting to improve skin vascularity and also about the aid of hyperbaric chamber for wound healing as that may help. Make sure you are eating enough protein, 100g a day, and consider some supplementing with zinc, vitamins A & C, and bromelaine to assist with healing too. Good luck and I know how hard this is.
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My surgery to remove necrotic skin and do LDF is tomorrow at 3:00
specialk - thank you for the information. I've read your story and recommendations in other threads as I was researching necrosis and Silvadene cream. In fact, I've been following several of your recommendations--the 100g of protein, the supplements (hubby added all of those to the anti-cancer smoothie he fixes me every morning). Had we seen any sign of improvement and gotten good news yesterday from the PS, I was going to inquire about the hyperbaric chamber. Thank you for sharing so freely your information. Even though we didn't achieve what we wanted, it really helped me mentally this past week to be doing proactive things to encourage healing.
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kadril - I am sorry that you did not have enough improvement to do the wait and see, but, if possible, regard tomorrow's surgery as moving in the right direction. Maybe not the original direction, but the one that will offer the best solution now. I am glad that anything I said in other threads, or this one, offered you something to grab on to - I fully understand the need for that. I will also say that I somehow was able - after some time - to separate the reconstruction process and the inherent struggles for me as an individual, from the cancer part. I am not sure how I did that as it wasn't necessarily a conscious effort, but that did make it easier, and its own thing. Yay for your DH making you the awesome smoothie, that is sweet! If you ever need to PM me, don't hesitate!
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kadrill22 - I hope your surgery goes well and this puts you on the road to healing. Big hugs.
So…me….Dr. called yesterday and my pathology was all good. Nothing else was found on the other concerning spots they wanted to biopsy, no invasions/microinvasions, good margins and lymph nodes were clear. So, no more treatment other than dealing with this reconstruction process. One large weight lifted. I’m draining 30cc or less per 24 hrs on each drain but it’s still red and thick on the cancer side and red and thin on the other side. I hope some come out on Friday am but also don’t want them gone if they are needed. I am so bruised. Some are turning that lovely yellow color which is good. Another bruise appeared this am above the breast (or the expander) in an area that had been super swollen. I am generally a peach so not surprising…just interesting. Really no pain and since I got all the GI issues under control, I feel great. So thankful for that. I have to be very cognizant not to do things I’m not supposed to do and rest. Feel a bit like a science experiment, though. I’ve shown all my friends photos. LOL. Last night I felt like I had an itch on the side of my right breast. It’s completely numb so nothing to itch and I just had to wait for the feeling to go away. So odd. I had read a lot about what to expect but nothing truly prepares you for this experience.
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Kadril22 - thinking of you today and hoping that your revision surgery goes well and that you recover quickly and uneventfully!
Pjc5399 - great news on the good pathology report! I had less bruising than I expected and I am as pale as you can get! But I completely relate to the science experiment feeling. I really dislike how I can feel and somewhat see the expanders through my skin. It's just not right!
Christina
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I’m down to two drains. None of the 4 were draining much but they won’t take all 4 at once so I have two until next next week (hopefully will also get a fill then and get rid of some of these hard edges on the expanders). While I’d really have liked them all gone, I understand the issues. Snipping the stitch pinched but I didn’t even feel the removal. I was scared about it hurting. They didn’t seemed concerned with the color as long as it’s not green. I got the bandages off too. I had nipple sparing. The are currently fine but at the moment they look nothing like they did. Not sure what I was expecting. I just need to continually remind myself to temper my expectations about everything (whether it’s timing or how things look) and trust that I’ll get to an ok place in the end.
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I’m home, my surgery was successful, all necrotic skin and tissue is gone, and the results of the ldf look beautiful. Yes, beautiful—you just can’t imagine how bad everything looked before. Looking back, I can’t believe I thought it was just bruising in the beginning.
I was in the hospital for two nights and checked every hour. Perfect, they say, zero sign of rejection in the front and zero sign of hematoma in the back. I got to see everything in front yesterday when old tape was removed and new tape applied.
I can tell it’s gonna be a slower recovery, but I’m happy to be at this point of it instead of where I was at the beginning of the week.
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kadril - so happy for you and continuing to send positive vibes, glad this step is behind you.
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Kadril very happy for you!
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kadril22 - that is just the best news! I’m so glad the surgery was successful, you are happy andyou are now on your way to recovery. Continuing to send positive vibes your way!
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kadril22,
I am so happy to hear that the revision surgery was a success. You've been through a lot; now hopefully the real healing can begin and the rest of the journey will be uneventful!
Christina
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Kadril22, I am so sorry to hear about your ordeal. What a horrible experience! It’s terrible enough to have a cancer diagnosis. You’ve been through so much. I’m so happy that your surgery was successful. I hope you’re able to rest a little more peacefully knowing that it was a success.
I got my drains out on Friday. My drainage was a light orange color in my right drain with very little drainage. The left, where I had the tumors, had changed to a very dark cola-color, almost black. It was explained to me that it was essentially liquified hematoma, and I shouldn’t be concerned (no signs of infection). It was less than 30cc over several days, so the drain was able to come out. It felt so strange having the drains pulled! I could feel the tubing moving. Not painful at all, luckily, for me. I’m so happy to be free of those things! I was able to take a shower yesterday without the drain lanyard. I never guessed that would feel so good! I’ve had increased pain since the drains were removed. I’m a little worried the hematoma possibly has gotten worse without being able to drain out. I would feel so much better if I could put some ice on the area, but my surgeon told me no ice. So I am using Advil and actually took one of my pain killers this evening, which I haven’t done in almost a week.
I would really love to be able to drive again. My range of motion isn’t there yet I’m still having pain twisting my body. Another thing I would love to do is sleep on my side. I have been sleeping in a recliner for two weeks, and the novelty is wearing off. My surgeon told me it’s okay to try sleeping on my side, but it’s still too painful unfortunately.
I have an oncology appointment this week. The lymph nodes looked good, but I am anxious to learn the oncotype results.
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coloradomom1 - I am a week behind you. Truly is helpful hearing how everyone is doing. Hope to get the 2 remaining drains out later this week. Mine are (and have been) less than 20ccs per 24 hrs. As I mentioned in a previous post they would not take out all 4 at once. I’m kinda ocd and got a syringe this week so I’m now measuring exactly. Lol! Eyeballing it in the cup under 10cc wasn’t working well. Mine are still so red at 10 days out. I was/am so bruised so not really surprising but different than I’ve seen others report. I want the drains out but concerned about where even this little bit of blood will go. It’s just that next step of healing that I want to get to.
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Well, today was supposed to be my first fill, nearly a month after surgery. Instead, I will be heading back to surgery tomorrow morning to revise the necrotic incisions on both sides and have both tissue expanders removed - not to be replaced for 6 months. To say that I am disappointed and angry and sad and frustrated is an understatement. I will also come home with 2 new drains - only a week from getting the last of 4 out.
Don't get me wrong, I'm very grateful that my pathology report came back with no lymph involvement and stage 1/grade 1, but I just had my timeline extended by half a year and that's a really tough pill to swallow.
Christina
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Sorry Christina, the 4 months I had to wait for DIEP was horrible thank God it was winter so bulky clothes hid a lot.
The emotional distress was the worst part, when I finally went to Barbados put on a bathing suit and went swimming in the Ocean I felt emotionally healed. Now after time has passed and I look good I forget about cancer.
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