September 2021 Surgeries
Comments
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Elle, you got your drains out pretty quick! I didn’t get the lollipop lift look. PS was able to save nipple/areola complex. My flaps look like heavy Cleopatra style eyeliner with a wing over the top of the areola. It’s completely different and better than what I thought I would get. When he started marking on me before surgery he drew that, I was surprised. I was more surprised when he started drawing on the right breast because I thought the lift for that comes later. He said it was for the bilateral mx! My husband and I actually laughed and told him just a single, but that was a little spooky. He originally wanted me to have bmx, but we were waiting for genetics. I can’t imagine how hard having both done with diep flap would have been, but after the surprise DCIS, I kind of wish I had. Btw, I’m getting muscle cramps in my stomach, like a charley horse. Do you get that
Your grey area sounds so unsettling. Instead of surgery bringing answers you ended up with more questions. Does the cancer recurrence prediction include having additional hormonal treatments or surgery only? It’s really awesome you get the round table consideration of other doctors!
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How is everyone recovering??
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Waves2stars - Whoa! That BMX thought process would have had me backing up! Actually, being a 2 timer already, I initially approached my surgeon with a BMX. But she assured me that if it isn't broken (the other breast) then don't try to fix it. So I didn't. Like you, I can't imagine how hard having both done at once would be. YES! I get those muscle "cramps" in my stomach too, but more like a muscle spasm that ripples across the tummy. It's kind of weird. It's been odd walking about with different level breasts too, but I know it's temporary. I can not remember if the recurrence prediction included surgery but I don't think so. Did you start Tamoxifen a couple of days ago? Is that all that your plan requires at this point?
Yeah, I'm pretty bummed about being in "the grey area" but I know my docs are reaching out for the best possible options. My medical onc was of the same opinion, waiting to hear from the board and the Oncotype to give her better ideas. It has all been explained very well to me, but I just want to get it ALL OUT! By the end of the week, I hope to have my path more solidified, at leaset in my own mind.
Saltmarsh - how are you doing?
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April, I hope your surgery went as expected and you’ve got great pain management!
I just stared Tamoxifen this week, actually the day I started my period. I’m hoping that timing will help ease me into any side effects, rather than getting hammered on the head. I’m most concerned about depression and insomnia. I had an irritated spot on the edge of my flap, so I was rxed two more weeks of gabapentin. So for now I am sleeping well, lol! It doesn’t sedate me, but somehow keeps me from waking up 10x a night. Path report said, in the DCIS, there was evidence of perineural involvement and some lymphovascular involvement, though there was retraction. So while my nodes were clear, there is a hypothetical chance some cells went elsewhere. The endocrine treatments and radiation were the top things I was so scared of and wanted to avoid. But with all the information, I’m extremely motivated to follow all the treatments my MO suggests.
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Waves2Stars, thanks for your kind message. I had my DIEP reconstruction 2 days ago. I might go back home tomorrow or the day after. I didn't have much pain yesterday but today was tough. I had my mastectomy several months ago and I can say that the reconstruction is much harder than the mastectomy!
Several days ago, I asked a question about attaching the nerves. Here's an update about my case. The insurance covers the procedure, but unfortunately my surgeon could not find a good nerve.
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So, I'm doing great (!), and am kinda feeling badly that I'm doing great when some of you are in more pain or have unresolved medical issues.
My reconstruction appears to have gone well. All my steristrips are off and my incision is healing well. I have one tiny dog ear at the end where they closed up, and a bit of a knot under there that my PT has advised I massage to make sure I don't end up with a contracture or weird dimple. That said, she was so impressed with my surgeon's work that she asked for her info -- just in case of future need. I still have some soreness along the midline edge (where they closed up), and I really do not enjoy the sensation in the reconstructed breast.
So, about that -- I'm curious if this feels similar to any of your experiences?
When I had the tissue expander, part of my breast felt numb -- mostly the center third (or slightly more) of the breast. And I had constant sore spots and some internal chafing from the edges and port. Fine.
Now that that's out, the sore spots and chafing are gone, but the area of my breast that feels numb has expanded to cover at least 2/3 of my breast or more -- basically I can really only feel "normal" sensation around the edges.
I don't mind losing sexual feeling in my breast; that's not the issue. The issue is that when I massage the numb parts -- or anyone else touches them, I feel kind of squeamish. Like, it feels wrong/creepy/just not right. It kind of freaks me out. And I'm wondering if this will get better over time, or whether I'm always gonna feel weird if anything brushes past that part of my chest. I don't remember having this problem with any of my other scars -- even my C-section or appendectomy scars, both of which came with considerable more trauma.
Can anyone else relate?
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Saltmarsh, I’m glad you got rid of the expander and are pleased with the results! That’s awesome!
I kind of get what you’re saying about the sensation feeling creepy. I have had a lifelong aversion to velvet. I love how it looks but touching it is akin to how others feel about scratching a chalk board. The nurse told me to massage my breast, but it truly feels like I’m rubbing velvet over it. It makes me feel kind of sick. But I had a thought. My youngest child had sensory issues as a toddler. The OT had me dry brush the under side of his forearms several times a day, then run different textures on him. The brush looked like what the hospital gives you to scrub cradle cap. This therapy was specifically for eating issues, so you wouldn’t think brushing forearms would do anything, but it did! It prepares the nerves and brain in some way to process stimulation. I read somewhere about rubbing different textures on a recon breast, so I bet dry brushing would help make that more effective. The nervous system is so interesting and I don’t think average health care providers are really able to add therapies like this to their mix.
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Saltmarsh - I'm very happy to hear that all has gone well. Hey, don't feel bad for any of us that have other issues or pain, after all, everyone is different and we all have some great days and some super crappy days, so it all evens out! I do have different sensations with my reconstructed side than before the surgery. The top portion of skin is sensitive to the point that touching it almost is painful and I prefer not to. The skin also feels as if it is stretched, or sunburned and wants to relax a bit, so in time, I think it will work itself out. Other areas are kind of numb. I can feel my hand over it, but there is not a lot of depth to the feeling and sometimes it is just the feeling of pressure on the spot and not sensation. I am getting the rest of my steristrips off on Friday, the one under my arm from the node dissection fell off on its own. There is still one area of my stomach, just to the right of the belly button that is still sore and sensitive. I describe it as a road rash feeling, but there is nothing on the outside to indicate an issue.
Waves2stars - Your dry brush idea is really interesting. Have you tried it to see if it works for you? How are you doing so far on the Tamoxifen?
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Hi everyone, hope everyone's recovering well and on the path to healing/back to normal!
Nicole is doing well, last drain was removed last week. Pathology came back and she had complete pathologic response from neoadjuvant chemo. There were 2 tumour beds leftover, no cancer cell in the 36 lymph nodes taken out, lympha procedure done to reduce lymphedema occurance. Couldn't ask for better results from chemo.
Meeting with RO next week.
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pchyen, that's awesome!
Waves2Stars, I may have to try that dry-brushing thing. It can't hurt, anyway!
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Hooray for Nicole’s good report!
I haven’t tried brushing yet, but will give it a go this weekend. “Road rash” is exactly how I would describe the feeling of my stomach for the first two weeks, too! But mine was red from where they had the wound vac thing taped on. It only feels like that now if I suck my stomach in. I haven’t noticed any side effects from Tamoxifen except dry eyes and fatigue. I was tiredwith just the gabapentin, but more so now. But the combo of meds, or the resulting fatigue, is keeping my anxiety at bay, so I don’t really care. And it’s nothing compared to the fatigue I had when the testosterone I took suppressed everything.
I saw the nurse at the PS today because a scab came off too early. There were two small spots on both the outer left and right side of the flap that was red and irritated. They said to keep the scabs on for as long as possible. But the one came off yesterday so today they cleaned both spots out, and now I get the joy of wound care until they heal from the inside out. I was pretty horrified at the sight of what the nurse was doing, and extra thankful to have lost feeling from the mx and gabapentin. The one in the front will be easy enough to treat, but the one on the side will be tricky. Someone suggested I get those wooden q-tip, hospital type applicators to push the gauze in rather than use tweezers. I can’t believe it’s the flap- I thought for sure if I busted something open it would be the stomach from sneezing or laughing. Then again, it’s a stack, so it’s like a heavy brick of a breast, so of course it was likely to bust. Plus my poor skin is so dry! I hate to even talk about it, but if it helps some other person know what to expect, or not feel alone, I’m glad to put it out there.
I’m extra, extra thankful to have family experienced in wound care I can FaceTime. It’s a little upsetting, but I know each BC patient has their own highs and lows, so this is my low.0 -
hi all, i've been lurking on this thread for a while (my surgery was 9/21). So glad to hear everything went well for everyone!
I was diagnosed in March 2021 with triple positive stage 3 in left breast and lymph nodes. I had multiple large tumors and small boobs so even before any treatment knew I was having chemo and radiation and that I needed a mastectomy and nipple couldn’t be spared (skin was tbd).After we got post-chemo results, I chose to do a single mastectomy (skin-sparing) with expander to implant reconstruction
For those of you who have/had expanders…what is it supposed to feel like when you touch it? Now that swelling has gone down, I can feel the fill and then a hard plastic lump underneath - is that the port?
I’m also just wondering if anyone had suggestions on how to sleep sitting up in bed? I always start the night sitting up with my arms up on pillows but then wake up curled up in ball on my non-surgery side (I also don’t have any beds where my non-surgery side would be against the wall which would be ideal solution)
thank you all xoxo
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LGR239, welcome to the group!
If your expander is like mine was, you might feel the edges around the outside sometimes, but also a hard, round spot about 3/4 of the way up your breast, centered above where your nipple was? That's the port. I found that I could feel it the whole time I had it, but I got used to it and while it didn't feel comfortable, it was livable.
Did your doctors tell you to sleep sitting up in bed, or do you just feel better that way? Mine just said not to sleep on my side until they gave me the all-clear. That said, do you have -- or could you borrow -- a "husband" pillow? The kind with the arms? When I have had to sleep sitting up, I have found that one of those propped in a corner with another pillow or two -- possibly a travel neck pillow -- was what kept me most comfortable. In the case of my last two surgeries, they just said not to sleep on my side, so I slept on my back with pillows wedged into my sides to keep me from rolling.
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April_bc - I'm glad to hear that your reconstruction went well. I'm sure this first week was difficult but I hope you are starting to feel better now.
Pchyen - thank you for the update on Nicole. I'm curious to know how she felt doing chemo first, then the surgery? I felt that the surgery was a tough recovery, but I'll be back to myself before chemo would begin. In her case, I would think that her body would be fatigued doing chemo first, then the surgery? Did she feel pretty good going into her surgery? Is she expected to do AI or more chemo after surgery?
Waves2stars - I keep thinking my stomach will split open too, every time I laugh or cough! I've started to put Mederma Scar gel on the stomach and underarm surgical scars hoping the healing will be softer and fade faster. The PS left the steristrip on the underside of the breast to keep it supported and avoid any splitting. So far it is working. Mine also has to heal from the inside out. The skin on my stomach is also very dry so I’m using a moisturizer there.
LGR239 - I hope you are feeling good being almost 2 weeks out from the surgery for expanders. How long must you deal with the expanders before the implants go in? As far as sleeping goes, I spentthe first 3 weeks in a recliner, so it felt most comfortable to me sleeping upright, or slightly toward non-surgical side with pillows all around. I'm in my bed now, which also reclines, but I have a harder time getting pillow support and getting comfortable.
The MDA board responded that I should not have any further lymph nodes removed due to the higher odds of developing lymphedema (30-40%) that would outweigh the benefits. That's seems like such high odds to me but I'm still mentally grappling with the possibility of leaving “isolated tumor cells" inside. Still waiting for my oncotype to come back before knowing which direction to go. I hope to get that back this week. I'm beginning to get impatient to figure out a posschemo schedule that won't leave me feeling unwell during the holidays.
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Elle, can you have anymore radiation to that side? Do you feel reassured that a whole board discussed your case? I didn’t think you had that many nodes removed. It seems like it’s taking forever to get all your results in!
LGR, I bought a horse shoe shaped pillow from Sam’s so I would stay on my back. My bed is adjustable, though. You can prop up your mattress by placing couch cushions between the box springs and mattress. There are also wedge pillows that work similarly, though you won’t get as much height with them. You might prop a smaller pillow under your knees, too, to support your lower back sleeping that way.
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Pchyen, did you and your wife request the lymph procedure to prevent lymphedema, or was that her surgeon’s suggestion?
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Hi Elle2, Nicole had Dose Dense AC chemo for 4 rounds, then Taxol+Herceptin+Perjeta for 4 rounds. The cumulative effect of chemo was tough and AC+T chemo is probably the toughest of chemos offered to her (she had 3 choices). There was a month in between last chemo and surgery and Nicole felt better just before surgery and we were able to get away for a week of vacation.Also, she had no choice as chemo was needed to shrink tumor before surgery. Nicole will have radiation and be on Herceptin for a year, no other chemo.
do you know what chemo has been offered to you?
Hi Wave2stars, we asked her surgeon for the bypass procedure. Surgeon was able to contact her colleague that does the procedure to do the bypass during Nicole's surgery. The bypass was successful according to the other surgeon. The lympha bypass procedure isnot a very common procedure even with auxiliary lymph node removal.0 -
Waves - No, I had whole breast radiation 13 years ago. Once you’ve had it, the skin and tissue do not respond well to a second time, so that was off the table. I only had one lymph node removed, which is why I felt so strongly about additional surgery to remove the next couple in line to be sure the cancer cells were gone. That is my main issue, not understanding why taking a few more out would be a problem. Maybe I’m wrong about the lymphedema odds being so high, but I’ll continue to ask until I feel comfortable with the accuracy of the responses and my decision. I also asked about additional node removal with the lymphovenous bypass surgery (LVE). My PS said he has done it many times and would discuss with the surgeon. So, I continue to ask questions.
In the meantime, I finally got the Oncotype results back today,it’s 44. I still can’t believe it.
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Oh, no! I’m so sorry for the rotten score! When do you follow up with the MO???
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Waves- I’m following up with MO on Tuesday and expect to get my chemo plan.
Pychen - before the Oncotype score came back, my MO tentatively planned Cytoxin and Taxotere, 4 rounds of 3 weeks each. We will see if that plan is adjusted on Tuesday.
LGR239, Saltmarsh, how is everyone doing? I suppose some are moving on to the chemo or radiation phase now. I wish everyone continued healing, extra strength and future NEDs
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Hey folx,
I'm doing okay! Still some soreness midline and still the numbness. Livestrong workouts start tomorrow and I'm scared but I know I need them! Thinking of you all and hoping the fall at least is bringing temperature relief if nothing else.
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Y'all. I found a lump in my reconstructed breast last night. I'm doing my best to be rational, stay calm, and get an appointment to get it looked at. But it's still kind of worrying/disappointing. It's right where the port to my TE was, so part of me wants to say maybe it's from that? But I have been massaging the area as I was told to, and only found/noticed it last night. It feels like a very small pebble.
*sigh* I know the only thing to do is get it looked at. And it's probably benign. But please think good thoughts for me, anyway?
Thinking of you all!
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So, cautiously optimistic, but: Good news! My doctor's PA is pretty certain from what I'm describing that it's a suture knot. It's right where she would have expected and she also reassured me that probably the reason I didn't feel it before is because of the post-op swelling, so it's not like it just popped up overnight. They will take a look at it when I go in Dec. 3rd, but she said unless something changes between now and then, not to worry. It's a totally common thing, and people supposedly often notice it around this point.
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That’s great news! The landscape of the breast sure changes a lot once the swelling goes down
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yes, I agree Waves, I’m noticing differences as well but I guess that’s why we have the touch- up procedures later on. Salt marsh, I truly understand your fear and vulnerability right now. It’s inevitable that every lump and bump becomes a focused fear once you’ve had bc. For me, it never really went away and always creeped into the back of my mind, especially when someone around me was diagnosed. The upside is that we are quick to do something about it because we intimately understand the risk. Im glad everyone here is moving forward and doing what needs to be done. While it’s hard to fathom at this stage, we are cancer free for now and that’s so good to feel
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Elle, how is your recovery going? When do you start chemo?
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Waves- I had my first Adriamycin + Cytoxin round 2 weeks ago. The Day of chemo I was a little tired in the afternoon. Day 2, I had tons of energy and did way too much. I was lucky that nausea was well controlled for me. However, I experienced extreme, nearly crippling fatigue starting Day 3-7. I had dry mouth controlled by Biotene losenges, and mouthwash, lack of appetite due to my tongue feeling like fur, a heightened sense of smell that created strong, nauseous odors, and to me, my body reeked of a bad chemical smell. My husband did not notice it ( or so he said) but I hated it. By Days 8-10, I started to feel normal again. Today, I feel good going into my second round in another week. How are you feeling on the Tamoxifen?
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Elle2, I'll be thinking of you this week, and hoping it's better.
How is everyone else?
I'm okay. My doctors are all on my case about my lack of exercise and weight, so I'm trying to make changes there.
I had a panic attack when I went into the hospital this past week. It was definitely a PTSD kind of thing. I wasn't expecting it, and was honestly surprised no one pulled me out of line and forced me to see a psychiatrist. It felt like it was super-obvious I was melting down. I could not stop crying. It was really, really dumb, and I really hope that doesn't happen the next time I have to go in.
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salt marsh - I am so sorry to hear about your meltdown. It truly must have been horrible to feel so out of control. I’m finding myself getting very anxious in the chemo office and I’m usually pretty easy going. I went back to my Calm app and fell into a very good sleep last night. Taking headphones with me for meditation during chemo today.It might be time to take matters into your own hands and see if your nurse navigator can refer you to any integrative services that might help, like acupuncture, counseling etc. Sometimes I think the doctors are so used to cancer meltdowns that they don’t know what is too much. Granted they should ask, but you have to advocate for yourself. We’re you in the hospital for a follow up or something else?
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It was just a follow-up. I had no reason to be so worked up, and it was scary. I did make an appointment to talk with my cancer therapist and try to unpack that/troubleshoot next time to either avoid a recurrence, or at least try to lessen the effects.
I've been using the Calm app to help me sleep, too, and I love it for that. Perhaps I should experiment more with the other offerings.
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