2018 - February Surgery Support Group
Comments
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Kaywrite, congratulations! That must be such a huge relief. I'm so happy for you.
Nursepatient, yes, the fact that this is about boobs makes it that much more uncomfortable to talk about, especially with people who you aren't especially close with. I keep playing up the lymph node angle at work so that the conversation can be about something a little less personal. Good luck with the oncologist. I had close margins as well, but my oncologist told me that it doesn't really matter with DCIS since it can't live outside the duct, and they had taken all of the duct. I hope yours tells you the same thing.
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Kaywrite, so happy to hear about your test results!
I saw my oncologist yesterday. He answered all my questions and said there was no other treatment I needed to do. My margins were close which makes me have a slightly higher risk of recurrence at the site but not so high that I really need to be concerned or do any sort of medication/rads, etc. It was such a relief to hear that. So I guess now I just focus on healing, getting to the point of having implants placed and no infection.
Don't know if anyone else is still having a problem with the burning sandpaper feeling but the Dr did say she was just at a conference where they talked about surgical nerve pain and chemo induced nerve pain. They found patients are having good results from menthol creams. She recommended Dermacool and you can buy it on Amazon. I'm going to check it out and make sure my PS is ok with rubbing it on top my incisions.
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Nurse, that's great, congratulations! I just posted in the March radiation group about how the negatory for genetic mutations felt like exchanging a pogo stick for a unicycle - a slight improvement, but an improvement. You just got a bicycle - or maybe a car.
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I had a close margin with IDC (focally positive), and since I had a mastectomy they can't take any more tissue. My tumor was in the axially tail, so right on the side, so I guess it was close there. I had 2.0 cm of IDC alone, 2.4 cm including the DCIS and allegedly some LCIS mixed in there for fun too. I am likely still avoiding radiation even with the margin (I have a genetic variant that could affect my tolerance to radiation), however I begin chemo next week, followed by Tamoxifen and likely Zoladex injections to shut down my ovaries (I'm 33 and have a very high ER/PR positive cancer).
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it is interesting to hear everyone’s path to be cancer free or as close as possible. My thought and prayers are with everyone.
I saw my PS yesterday and was released back to work (I work from Home mostly on a laptop and my phone). There isn’t any heavy lifting involved. I was also released to start the light stretches my surgeon originally gave me post op that my PS said not to start at that time. I am 4 weeks post op tomorrow and I am shocked at my range of motion. In my head I thought I wouldn’t have lost so much. I definitely have some muscles to LOOSEN.
It feels good to take any tiny step forward. These two steps were big to me, but I have found any step in the right direction feels encouraging and the light at the end of the tunnel gets brighter
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Strengthandjoy, glad to hear you can start moving more. I'm sure it will feel good to move around more. It's still so strange to me though how doctors give such different restrictions. I never was told not to move my arms much. I feel like my ROM is normal. I was just told to use common sense and not do something if it hurts. I have no idea what that ever meant though.
I had my genetic counseling and testing this morning so now I wait again. It doesn't make me anxious to wait on this though for some reason. I'm curious, did anyone on here have any Gene mutations if you've already been tested?
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StrengthandJoy, I feel like there are so many different things limiting my range of motion and arm strength. It's hard to tell what's just tight and out of use versus what's actually messed up from the surgery for various reasons. There's a lot going on in that quadrant of our bodies, no?
NursePatient, congrats on not needing any medication. That's excellent! Out of curiosity, did they talk to you about the possibility of tamoxifen? Why did they decide you didn't need it? Also, I had a panel of 80 genes tested. No mutations for cancer of any kind (including the brain tumor that took my dad, which was a huge relief), but I did get what were called "variations of unknown significance" for colon polyps and cleft palate. What this means if that my genes are a little atypical but they don't have enough data to know whether they're actually "bad" or not, so I was told not to worry about it, especially since at least one of them is recessive so it's unlikely I'll pass it to kids, and I would know by now if it had affected me. If you've had a large panel of genes tested, you'll probably get something like this, but don't let it freak you out.
Kaywrite, I love the moving from a pogo stick to a unicycle analogy. We really are taking the smallest of steps forward here, but I'm proud of and grateful for every one of them!
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Nursepatient- I had genetic testing and was negative. I didn’t want to do the counseling at first, but once I was there I actually liked it and learned new things. I am glad you are feeling peaceful during this waiting process.
32B- I agree, it is hard to tell where some of the stiffness and pain is coming from at times. Today I found that little by little I was able to move more and more. I was encouraged. I try to stretch, but not cause pain. Uncomfortable but not hurting.
Now, I’m trying to decide how many fills to do. How many cc I want. My PS says to just wait and see each week. I’m just so curious of the time line.... I want to PLAN😂. Do any of you know how many fills or cc you will do
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I haven't been able to get a clear timeline on fills either. My PS says it depends on how well my skin stretches. Last week I got 45 CCs, which isn't much. I joke that now I look like a 12 year old girl instead of a 12 year old boy.
I'm having another one today, and then PS wants to take a week off to give my skin time to adjust. He thinks we'll likely have to do 3 total to get back up to my B cup size to match the other one.
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My PS says they don't go by cup sizes at all since one bra will fit differently than another which makes sense. I had 100cc's put in a week ago. (They were completely empty from surgery). I honestly think with just that I'm the same size as I was before. I go again on Tuesday for another fill. Not sure if I can handle 100 again or not. Apparently my TE's hold 300 or 350. I want to be bigger but not that much bigger. I'm already hearing people compare my ordeal to someone they know's boob job.
32b, that's funny that now you look like a 12 year old girl. I'm in the same boat definitely. Through all this, I kept saying I'm thankful I got my dad's chest which helped me to be able to feel my DCIS lump. The planning and timeline with fills and planning the exchange is tough but sooooo much easier than in the beginning of this whole crappy journey. Also to answer your question about the tamoxifen: I specifically asked the oncologist about that. He said there's all sorts of different guidelines on margins. Margins for DCIS don't have to be as big as they would want for invasive cancers. I do have a slightly higher chance of recurrence at the site but it's only like 2-3% higher so not worth putting me on tamoxifen. Like my husband has said, his risk of getting breast cancer is probably just as high or higher than mine at this point.
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Thanks so much for your reply. I am just seeing it now. My mood did finally start to improve, however pathology reports and small negative margins (less than 2mm) have me stressed again. I will know more when I see the doctor tomorrow, but it looks like more surgery might be in my future.
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Hi ladies. I’m at 240 ccs since surgery on 2/8. I had nothing at surgery so have gotten 4 fills/60 ccs each week. For me they’re always uncomfortable after and hurt. I just want to get back to my normal B cup and my surgeon says I likely will only need 1 more (small chance 2) . He says he puts in bigger implant eventually. I think it’s hard to judge though bc these expanders are just oddly shaped from my originals... sigh.
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kaywrite — yay on BRCA results!
32b/NursePatient — how is work?
Getting back into seeing people is weird! It’s still cold in MT and picking up my daughter from preschool is about the only time I see people/is with my jacket on. I can see their minds of people who know working on figuring out what’s going on with my boobs. Maybe we should all just throw a reveal party for everyone to come take a look
I’m not taking tamoxifen as well since there’s nothing left to treat to prevent reoccurrence, taking it was just gonna be a hard 5 years.
Where did the last month ago?! It feels sort of odd to be able to distance ourselves from mastectomy dates! I got cleared for life as normal today, as long as I’m comfortable with my activity level. I got to lay on my side in my daughters bed to cuddle with her tonight with minimal awkwardness.
PS looking at his schedule for May to fill in with some fat grafting
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Thanks for tamox info everyone. I guess because I still have one boob left I've got a higher risk for recurrence. Pros and cons to everything.
After second fill my size still isn't back to normal, but I see why people get boob jobs! Looking at the top/cleavage part, it's definitely perkier than the natural one. Also feels like a water balloon under there when I feel it with my hand. Which I suppose it is.
Mountain Mama, congrats on lying on your side! Not being able to do that has been the worst! I'm starting to be able to as well.
Work is OK. It's actually a relief to get back into a routine and feel like a normal person instead of "just" a cancer patient. I'm having a hard time caring about my work as much as I used to though. I'm proud of the work my company does, and I like everyone there, but the work we do isn't exactly changing the world. This experience is making me realize that life is too short to give 100% to the rat race. I wonder how well I'll fit in long term with my workaholic colleagues.
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I am glad to see some are getting fills and going back to work. If you didn't take tamoxifen I would like to know why. I am very active and those side effects sound crappy.
I am 3 weeks post BMX and got all the medical tape off and the bottom stitches out Wednesday. I have been using neosporin after shower w gauze and today the left side bottom stitch looks really red post shower. The temperature here in TN shot up to 70and the post surgery cami may be too hot. I have a breakout in the front zipper area in middle and around ribcage. When I called Doc she said some people do breakout with the neosporin original and she asked me to send photos. She went ahead and called in Cipro to be safe and advised me sometimes two antibiotics are needed. As I look at the cut of my cami I am hoping that it was just rubbing on a seam which is how it felt. Please no infection! My body Temp was 99-100 this morning and last two mornings was feeling hot. I was hoping at week 3 to not have to think about infection. I have 300cc I am carrying around and I should get a fill in about 3 weeks. What is that like? I have tight skin with stretch marks already from puberty that never went away. Just glad they aren't dark anymore.
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hi JT3-
I can’t believe how hot it is where you live already! I’m glad your doctor is choosing to be on the safe side and prescribed you antibiotics.
I have had three fills and you are still ahead of me at 300ccs😊. I only get 60 at a time for a total so far of 200cc. The fills don’t hurt at all- it is fascinating how they do it! I usually start feeling really tight about 2 hours later and stay that way the rest of the day. I sleep well and feel better 24 hours later. I take Aleve after my fill to try and help with the stiffness.
Do any of you have a favorite bra you are wearing with two TE? I am struggling to find something I like. Do your PS say you need to wear a bra?
Thanks for any recommendations
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My PS has told me not to wear a bra at all this whole time so as not to stress out my skin. He says I have very thin skin which is making reconstruction challenging, so I should be as gentle on it as possible. I do have a cotton, front hook sports bra that I wear occasionally, but the elastic irritates my suture line and and drain sites, so I don't usually wear it for too long. I tried wearing a regular underwire bra once, but that turned out to be a bad idea. The underwire was digging into a part of my boob that is numb, so I didn't realize it was irritating so much. When I took it off there was an indentation that didn't go away for a few hours.
Happy Saint Patrick's Day, everybody!
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At my radiation simulation yesterday I brought a leftover bump from the 1st lumpectomy to everyone's attention and now get to have another ultrasound on Monday! Yippee!
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ugh bras! My husband very thoughtfully got me a gift card to Victoria’s Secret since everything is different now. After wearing the not so flattering front close sports bras I’m looking forward to something cute! PS told me 2-3 months and then I can do what I want, no TEs for me though. I’ve done a few days without to give my skin a break and see how comfortable things are without.
Kay — I hope the ultrasound is helpful! Maybe scar tissue???
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mountain mama- I’ve learned that most insurance companies will pay for some bras if you go to a store that specializes. There are a few where I live and when I went to get fitted they asked for my insurance card and said most is covered and you get several a year for the rest of your life😳💛. I got one sport bra type that has cups (no wire last Thursday that had some extra space for fills, but I’m not convinced it is the best one right now. It feels soft and silky, but after a few hours it is irritating to me. My PS hasn’t talked to me about bras- I’ll ask him Monday when I go in.
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Good luck with the ultrasound, kaywrite. Hopefully just scar tissue. And at least ultrasound is one of the less awful imaging procedures.
Drove my stick shift for the first time post MX yesterday. My arm is starting to feel pretty good. Still can't reach up all the way, so rinsing my underarm in the shower doesn't work perfectly. Will be inordinately glad when I finally reach that milestone.
How is everyone feeling emotionally? I go back and forth. Now that I'm for the most part on the other side of it, going back to my normal routine is challenging in ways I didn't expect.
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I have a hard time typing on this site, so when I know my response might be long I use my phone notes and then copy/paste it. I was just about finished and hit a button that sent it to trash 😭 What I originally typed up was much longer, and probably really was mostly me working through my thoughts when all I wanted to bring to the conversation is this.
Is anyone familiar with Brene Brown? If not, find her books!! She shares about shame, vulnerability, authenticity, courage, relationships .... all really good stuff to help reframe how you might approach some of those things. I shared this months ago with my OULA class as self care is so important and I really want people to take time to prioritize themselves. Read also https://thoughtcatalog.com/brianna-wiest/2017/11/this-is-what-self-care-really-means-because-its-not-all-salt-baths-and-chocolate-cake/
// 'Crazy-busy' is a great armor, it's a great way for numbing. What a lot of us do is that we stay so busy, and so out in front of our life, that the truth of how we're feeling and what we really need can't catch up with us. — Brene Brown //
This has been me. During scanning and testing and waiting ..... I either wrapped myself up in my kids and what I needed to get done before surgery or I checked myself out mentally with tv binging or reading books. Although I don't care if someone hears about what's been happening with me, the group I've told is pretty small. I debate if this is because until I had answers for myself it was a weird "so I might have breast cancer...." conversation or because once I had answers I felt like I downplayed it since my experience seems so minor (no chemo, no radiation, non invasive, etc) ... this has been to the point that I haven't had that really big why me crying moment. I expected that to come after surgery (I often get hit with emotions after something has happened rather than before) but then it wasn't as bad recovering as I expected. I don't know if I'm really okay or still putting up a wall.
If you're into podcasts, give this episode a listen. Even though it starts off a little on mom guilt, the middle/end has some relevant stuff to how we all may be feeling or not know we're feeling —> https://itunes.apple.com/us/podcast/mind-body-stuff/id1326929770?mt=2&i=1000406550318
Okay .... I'm on my way to getting overly wordy again so I'll just stop here
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Mountainmama and 32B - it was a cyst, thank goodness. They did a mammogram and ultrasound, both normal, or new-normal I suppose, considering my SO "moved some stuff around" to help the cosmetic appearance post-lumpectomy the second time.
Mountainmama, it's hard for me to type on here as well, very slow lagging letters or maybe I type too fast. Writing it all out on a notepad first is a good idea. I haven't been confined yet, but in general I like your ideas for keeping a calm mind - I think it is essential to do so. I paint and write, and work 4 long days a week - lately it has been a struggle to find time to do what I enjoy due to how much time breast cancer is taking - doctors appointments mostly, corresponding with my team of loved ones who want and deserve to be kept up to speed, and so much time on the phone with people who care and call to talk, and all the dinners and walks and dropping by to visit that's going on. These last three are lovely problems to have. I got to finish a painting yesterday, yeah, and do some revisions on the fourth draft of my first novel. (I have the third draft on my website if you need something to read and have a Kindle to download to. Thes are my meditations. Some of them anyway.
Radiation in three days, tick tock.
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kaywrite, glad to hear your good news! What a huge relief I'm sure.
Anyone that has TE's, are they driving you crazy yet? First
it was the drains, now these stupid things. I feel like the bottom ridge is sitting right on top of a rib. I go for my 2nd fill tomorrow. Maybe it will get better, maybe worse, who knows??
32b, you asked about how everyone is feeling emotionally. I think I hit an all time low at about week 2. It was probably the pain meds, overthinking with nothing else to do, body image problems, etc. It got so much better when I started getting back to my normal habits again. I go back to work next Wednesday so hoping that goes well. I'm sure I'll spend the first couple days explaining everything since no one really knew what I had and what I had done until surgery was over.
My last hurrah before going back to work will be my youngest's 3rd birthday this Saturday. Since he reminds us about his birthday hourly, I will focus on that and not work for now.
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Hi ladies, I am 3 1/2 weeks post op from my BMX with DIEP Flap reconstruction. I was healthy going into this cancer diagnosis and have been very cautious not to expose myself to crowds in order to avoid any of the crud that was going around. I am glad that I had this surgery. I knew the recovery was going to be long. I just had expectations that I would be recovering faster. I am surprised by the pain levels I am experiencing this far out from surgery. Everything is going as it should. I am tired of being housebound because I can’t drive yet. It feels odd to ask family members to take me to mundane places like the drug store. My sister has been great. She takes me out to lunch when I feel up to it. I feel like a cancer patient and I don’t want to feel this way. I want to get back to my independent, energetic and self reliant ways.
I appreciate the threads addressing emotional feelings. I don’t know how to move on with my life even though I may be cancer free at the moment. I have discovered that a cancerous tumor changes everything. Many things that were important to me before this diagnosis I no longer have any interest. I am battling depression. Clinical depression has been the thorn in my side for twenty three years. I do have meds but they are not doing the job since this diagnosis.
Blessings to you all for excellent recoveries.
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bella2013,
I can see from you dx and treatments, you've been dealing with a LOT. I have a friend who did the same surgery as you. The flap is so much bigger of a surgery than you probably think. Give yourself time. It can be very depressing when you're stuck at home without the freedom to drive and then add the pain and pain meds on top of it. You have every right to feel depressed. Things haven't been normal for you for a while but it will get there. Eventually, the pain will get better, you won't need the pain meds as much and you'll be able to drive and get out of the house. It just may take a couple more weeks to get to that point. You are a strong person and I'm sorry you have to go through all this.
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MountainMama, yes typing on this site is weird. I really thought I had responded to you yesterday but apparently it didn't take. Thank you so much for helping put into words what I've been feeling. I've had some very bad days emotionally, but I don't feel like I've really hit rock bottom, and I wonder whether I'm bottling my true feelings and they'll come out later in in unhealthy ways, or if I've just been lucky to have a swift recovery and a good support system, and I'm coping with it appropriately. This site has helped in tremendous ways, of course. I keep thinking about what this must have been like 20, 50, 100 years ago, when there was so much less information, and it was so much harder to connect with people going through similar things. We are very lucky in so many ways.
Kaywrite, congrats on your good news! What a relief! I'm actually working on a novel as well. Sorry if I missed the link to yours somewhere, but please share it again!
NursePatient, my TEs don't bother me as much as the drains did, but it's definitely an odd feeling, especially the ridges. Yesterday I had some twinges of pain, and when I went to rub the area I thought it was coming from, I was numb there, and couldn't find the painful area.
Bella, welcome! I agree that not being able to do basic things like drive yourself to the drug store is maddening. I'm glad you have people who are willing to help. Please keep us posted on your recovery journey.
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kaywrite — yay cyst! I’m sure it’s a shift in perspective that a year ago you’d have been more annoyed with it. Are they able to aspirate it or waiting for it to go away on its own?
NP35 — we’re doing a birthday this weekend too, planning has been a good focus and steps to feeling normal. My 5 year old thinks she’s a mermaid, so we’re having her party at the pool ...I have been avoiding trying on my swim suit though 😬
Bella — how’s the weather where you’re at?? I’ve felt my mood change with sunnier spring days. It’s helped me feel like I’m (re)blooming into new adjustments. I hope your pain starts to subside and one day you’ll notice those things that were most bothersome have disappeared.
32b/kaywrite — I like to think that I could write but I’m a much better reader. Would love to peek at your stuff!
32b — huge advancements that we are fortunate to benefit from! The one person (who’s about 25 years older than me) I knew that had DCIS before I was diagnosed shared with me that her mother, who also had breast cancer/is still alive, was part of the first researchings for sentinel node biopsy. It gives me good feelings that what we’re all going through contibutes to the futur
Weird sensations and sounds yesterday. It was like the hungry gurgling sounds from your stomach but in my left boob. For now I’m attributing to settling and fluid shifting, I can feel that things are still perky but not so high.
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Fembot almost this same, my surgery was on Feb 1
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hi.
I agree 32b, I am having emotional hurdles I didn’t expect either. I am usually pretty independent, happy and secure. But as I am breaking out of the cacoon and making my way back to “normal” life I’m strugglijg. I find myself to be more timid and less out going. I’m more thoughtful with my words and how I spend my time. I cry easily and just feel different. Sometimes I am thankful for the readjustment this experience has given me and at other times I’m so sad. I know we will work through ALL of this! I’m thankful for this group.
I’m working on my range of motion and wondered if any of you were sent to physical therapy or if you just worked on the exercises at home. I’ve had a week and a half where I’ve been able to stretch my arms out and move them. I was T-Rex for 31/2 weeks. I’ve come a long way, but the side that I had my sentinel node removed is much more stiff and sore. Did any of you experience this? I’m still progressing at home doing the exercises but not sure if I should push for PT:.. I welcome any opinions and advice.
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