2018 - February Surgery Support Group
Comments
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jt3 and kaywrite- i found out that I’m in the gray area for radiation bc a mammary node ended up having 2 mm of cancer cells. Bc I’m conservative , I’ve decided to get it to decrease recurrence but my biggest bad concern is reconstruction. After consulting with the RO and PS they say I can still plan on implants but I’ll have to keep these expanders in for 6 months after radiation and likely fat grafting . This of course presumes my skin does well with rads. Jt3 wishing you good news on that front.
KAywrite- even though my rads won’t start til April I’ll be looking at March rad group so thank you!
32B - you’re right - the range of experiences with this is crazy!
Happy Friday all. I’m wishing right now I was out at happy hour - soon enough I guess
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Hi Terrifiedbutstillhopeful. I had a BMX on 2/8 and I still have that weird burning feeling on the inside of my upper arm on the side where they took my lymph nodes. I think it is the nerves regenerating.
And the only reason I knew about the injections of the radio active dye was because one of my friends had the same surgery and told me to be prepared for that. Nothing like pain and then blue urine!
I hope you are healing well. I have one drain left that is supposed to come out on Monday (had one drain literally fall out last week) and then am waiting to hear when I'm starting radiation after my TE are filled.0 -
Anybody else feeling more sensitive to cold?? I feel like I’ve been living under a blanket to stay warm. Also noticing a colder sensation run through my chestwhen drinking cold things.
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mmm046, laying around definitely makes me cold but I am sure all the nerves will be sensitive too during all of this... now I am binge watching Bates Motel and forgetting my pain
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mountainmama406 yeah when i drink something cold i feel a cold trickle behind my new boob. Weird
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Hi Ladies!
Those of you with expanders... are you using anything to prevent stretch marks? Recommendations would be appreciated
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Strengthandjoy, I haven't thought about stretch marks? It's something I will have to ask my PS. Have you gotten any fills yet. I still have both my drains in so I guess no fills til they come out? They didn't put anything in the TE's during surgery either since I didn't have much room, so not looking forward to the achey chest and stretching.
Anyone have any good ways to hide your drains when you go out in public? At home they just hang out from under my shirt. I feel weird with the flat chest but it also seems silly to me to stuff my bra, so now I'm left with looking like I'm smuggling something in my belly. I guess all things I'll get used to.
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SAJ, I need to think about stretchmark cream as well. Thank you for posting and hopefully my PS Will answered me on that.
NP35, I pin my drains to my shirt to go out on the inside. I wear a baggy shirt and it’s noticeable if someone looks I am sure. I saw Red Sparrow Friday at the theater after getting hair washed and a good lunch. Feeling human.
I finally have been able to look at my chest and it’s only mildly upsetting. I still have had a couple cry sessions
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MountainMama and Fembot, THANK YOU for making me feel like I'm not insane with the feeling cold liquids behind my boob. It's definitely one of the weirder things about this. I actually feel it in the nipple I no longer have. I asked my fiance if that was a normal thing for men since their boobs are closer to the chest wall and he was like, "Nope!"
Nursepatient, when I had the drains in I also pinned them behind my shirt and then covered everything with baggy enough layers that it wasn't too noticeable if you weren't looking for it. Glad this is happening to us in the winter!
jt3 is Red Sparrow any good? I saw Annihilation last night. Would not recommend. A waste of Natalie Portman's talents, and all the cast members' for that matter. It was still amazing to get out of the house though!
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let’s keep each other posted on suggestions our PS tell us about stretch mark prevention.
Did any of you struggle with a bad back prior to surgery? It has now becaome by biggest complaint through this recovery. It is waking me up at night because I can’t sleep on my side yet and turn from side to side with a pillow between my legs like I used to. Now... I’m sleeping on my back in a variety of ways and pillows, but nothing is helping.... I usually revert to the recliner again. I am 17 days post op with both drains still in😩. Any suggestions
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Strengthandjoy, I'm 18 days post op and still have my drains too. They're still putting out a fair amount too so don't see him taking them out at my Tuesday appt. I have heard the drains are way less painful than a seroma though so guess I'll give it more time. It's so hard to be patient through all this. I only have 3 more weeks til I have to go back to work and just want to get on with all the healing!
I don't have any serious back issues but just some general soreness from time to time. I have never been a back sleeper and have not found a comfortable position to sleep yet. The recliner isn't working for me either. Any good ideas are welcome. Do you take anything for pain at night? I'm pretty much off the pain pills but will occasionally take 1 Percocet or 3 ibuprofen before bed if I'm really achey. I think after a mx a person hunches forward more and we are more tense with our movements so probably not good on the back.
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Thank you NP! I agree, I want my body to heal properly, but I really want to move forward from these drains. I’m glad I’m not the only one still carrying around these drains for so long. It is a balancing act of emotions. I want to give my body time to heal correctly and I also want to move forward. I’m on a work timeline too that I think is hanging over my head...
I have been off all medication for awhile and really prefer that. Except when I had my fill last week, I took some Aleve for muscle soreness. I think I should not be so closed minded about taking a little something before bed.
I know this will be a memory one day and this is just a season we are in. I am trying to learn all I can during this time, so when I return to “normal” life I will carry these lessons with me. I want to walk this gracefully, positively and use this experience to make me stronger. I know God has me in His hands and is guiding my every step. This is a relationship builder and I have never felt so loved!
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Strengthandjoy,
You are so right about trying to do this gracefully and positively. I was starting to get really depressed last week. I need to remind myself to stay positive and remember all the great gifts I have in life and try to be a good role model for my kids through this journey.
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I'm finally sleeping comfortably on my non-surgery side after 3 weeks. I'm still not able to lie on the side where I had my MX and drains.
One small step at a time, I suppose.0 -
32B, Nurse, mountainmama, et al - I've been thinking about you ladies on the other side of surgery. After two lumpectomies the SO finally ordered genetic testing, which I did on Thursday. Waiting on those results. Also had RO consultation, with a tentative date for the simulation appointment (where you get tattooed I guess). So I'm still in a bit of limbo on what happens next. Bottom line - if the test is positive, we will be mastectomy sisters. If negative, onward with radiation. Not a fan of the limbo though - I'm ready to move on. Keep up the great spirit - this sucks, but your humor and heartfelt emotion help us all. Lots of love your way!!!
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Thanks, Kaywrite! I'll be thinking of you. Hopefully you're done with surgery! Being in limbo is no fun. I'm on my way to an oncology consult this afternoon to find out my next steps. I keep thinking that I have a solid plan and timeline in place and then they throw me another curve ball.
By the way, did you guys know that the American Cancer Society will match you with a volunteer to drive you to appointments? I was starting to feel bad about asking the same people to take time off work all the time to drive me in, and now I am getting a ride with a volunteer to what will hopefully be my first TE fill on Thursday!
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kaywrite, 32b — waiting sucks! I think you can get to a place that after so much waiting you don’t even care if the news is bad, as long as you finally know, and that it hopefully comes with a plan. That’s how it was for me anyhow.
Has anyone heard of the term “liminal space”? It’s that period of waiting between what was and what’s coming. When I first heard it the act of opening/walking through a locked door was used to describe it, that you don’t know how long it might take to unlock or what’s on the other side.
We’re all in our varying space inbetweens. And all dealing with them how?? For me the biggest is escaping to the tv. The longer the series the better. And knitting so I have something to keep my hands busy.
I feel guilty that my 2 and 4 year old are getting a crap version of their mom. I do what I can to hang out with them and get modified snuggles but if I do too much then I'm back to the couch to rest. They've been more than understanding with me and have probably earned a trip to Disneyland or something for how they've had to deal with their own spaces of waiting.
Really, most days are good, I can deal with waiting to be feel like myself again. The few days that aren't though are hard and it's easier to hide under a blanket.
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Kaywrite, I'm sorry you have to be in limbo. I pray you get good news soon. The waiting parts of this whole thing is definitely the worst. I guess God is trying to teach me patience since that was never my thing.
Mountainmama, the mom guilt is so tough. I have a 2 year old, 7 year old and 9 year old. I would love to be able to just pick up my 2 year old again. I know all this is temporary though and I just hope they can look back on this time remembering me handling it better than I think I have. I'm sure your kids aren't getting a crap version. We put so much pressure on ourselves as mom's. They're probably loving sitting by mom on the couch watching TV.
To top it off, now I have work guilt. My boss called to see how I've been doing but then started asking about when I'll have my implant exchange surgery, how much time I'll need off, etc. Ugh, I have no idea and no idea how it's going to work out. Does anyone know how long it takes to recover from that surgery or how long it takes to fill expanders and then do the exchange surgery? My job includes all sorts of lifting, carrying, bending, etc.
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32B - That's awesome re the ride-buddy! That's part of my concern, too - not wanting to over-stress my wonderful friends and family. I also read recently where UBER is partnering with healthcare for rides: https://www.npr.org/2018/03/01/589464779/uber-laun.... I REALLY hope you are getting some solid direction this afternoon at your consult. These endless hoops are tiresome - Oncology administration, insurance company administration, job/FMLA administration - it's a full time job. I called Emory this morning to make a payment for statement #2 - there's only one statement for that date, with a specific due date. They couldn't find it. So even paying a bill takes more than one phone call. It's crazy.
OK - I just realized I am ranting. I'll stop.
mountainmama - I had not heard of liminal space, but looking it up, wow. It's a beautiful and very visual concept. I love how words and imagery work (kayspencer.com to see for yourself) Wikipedia is a research eye-feast for liminality - thank you for bringing it into context here. Well done. I've been watching Series 1, 2, and 3 of Poldark (rented from the library) - and I'm not even confined yet! I don't have children, so can only imagine how you moms are feeling with limited use of your arms, and the pain of a major surgery. You're not a crap mom - but you know that!
Nurse - oh the patience, for all of the reasons above: the sometimes-bad administration that comes with good doctors; the no-surprises-there barrel of monkeys that is health insurance (although I have a great nurse counselor assigned to my case, who actually does step in when the 3-ring circus becomes too crazy); and now the FMLA paperwork, which thinking about it, it's the Feds, which = red tape. No shock. I feel for you re the work guilt - I've been told the less detail, the better. (i.e. I have breast cancer, instead of I have Stage 0, nothing to worry about, etc.). There is so much we don't know, best to avoid accidentally minimizing it or having someone treat it like a boob job.
And finally, kids are so resilient. I'll be you're right - I'll bet they love just watching TV with you. I hope you get to pick up your 2 year-old soon. Thank you for staying in touch. It makes a difference. Thinking of you all.
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Hi Ladies
Been reading and catching up with you all. I am with you on the waiting ... it’s been 2 months since my first ever biopsy. And still no plan! I mean a lot has happened but still waiting for next steps. Yes i had surgery, a new monkey wrench was thrown in - sentinel node positive - so left turn - no reconstruction but instead have these gawd awful TE and more waiting on results. Every appt I think I will get a plan . I got a great result last week .. Mammaprint is LOW. NO chemo! I was thrilled and so relieved but still in the back of my head .. do I need radiation? When can I move forward with the DIEP reconstruction - another major surgery I hoped would be part of the initial BMX. Appt this week with RO to figure this part out ... maybe this week I'll have more answers.
To top it off my right breast has puckering and a good size area of hardness in the lower quadrant that wasn't there yesterday! I can feel it pulling and it is worrying me now ... ughhh. I emailed my PS - maybe he'll have me come in tomorrow and ease my anxiety.
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Kaywrite, thanks for the well wishes. I am very pleased to report that yesterday I found out I don't need chemo or radiation. I will need screenings every 6 months for the next 5 years, alternating MRI/mammogram. I will also need to take tamoxifen for at least 5 years, but considering the circumstances, this is pretty much the best news I could have hoped for. I am also scheduled to have my first TE fill on Thursday, so hopefully I'll be on the road to looking like myself again.
MountainMamma, thanks for teaching us the term liminal space! I love it! That's exactly how I've been feeling since I first noticed nipple discharge back in August. It took forever to diagnose and then things just kept getting more complicated. I am thrilled and grateful to see the light at the end of the tunnel now, but there are still so many question marks.
Nursepatient, I feel you re: work. Everyone I work with has been super nice, but they are starting to ask me about a timeline for when I think I'll be back. I actually Skyped into a couple of meetings this week, and told them I would come in for half a tomorrow and Thursday. I don't feel like I'm quite ready, but they've been extremely generous with giving me extra PTO so I don't have to lose money or deal with the disability benefits red tape, so I feel like I owe them. As to your question about TE fills: how many you have to do depends on how big your boob is. I'm a B cup, and my PS says 2 or 3 fills over the course of a few weeks. He also said that the implant switch surgery is relatively easy. He will do mine on a Friday and I'll be back to work on Monday. I have a desk job and don't do any heavy lifting, so it might be a little bit longer for you. Don't let them pressure you! Your health is the most important thing, and the details are none of anyone else's business! (Now if only I could take my own advice, haha.)
Teaberry, congrats on the news about no chemo! That's wonderful! It sounds like we're all in similar boats though, where every piece of good news comes along with some bad/complicated/inconclusive news. Let us know what PS says about puckering/hardness. I'm sure it's nothing major, but you certainly don't need anything else to be nervous about. I hope they get back to you quickly.
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A friend sent me this, had to share
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My drains are out! Technically they were still putting out 40 and 50 CC's a day and he wanted them less than 30 but was more concerned about them causing an infection so out them went. It didn't hurt by the way for anyone who still has them. Now I'm just hoping no seroma. One site is leaking a little which he told me they shouldn't, but this website has said otherwise. He also filled each expander with 100cc's (they were completely left empty from surgery). That also didn't hurt since things are numb there. Now that I'm a few hrs out, I have gotten some muscle aches and I continue with the sand paper chest feeling which I was told is nerve pain. I meant to ask for some Lyrica or neurontin but forgot. Anyone else having that feeling like your shirts are made of sandpaper rubbing accross your chest? Any treatments that help for that?
Anyways, I'm feeling great today for the little things that are making me feel more normal. Ooh, best of all I can take a real shower now. It's been 3 weeks , so thinking I may just need to run through the carwash.
To all of you on here, I continue to pray we can all heal quickly without any complications and pray for good news for everyone.
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NP- that is so exciting!! My drains were removed yesterday and I too was so excited!!! It feels wonderful to not have them anymore and it didn’t cause me any pain either. I am praying for all to continue to go smoothly with them out- no complications.
I have a very tight feeling in my chest and work hard to not slouch and create worse muscle pain. But I don’t feel the sand paper feeling you are describing. Have you tried lotion?
I was released to take a shower and I am nervous. I haven’t done it yet. Has anyone embarked on this yet? Words of advice?
Keep marching ladies!! One step at a time we GOT this
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another question- are any of you still being told by you PS not to move your arms? I had my drains removed Monday and he said to wait another week before starting the arm exercises he gave me and to continue not using arms other then the T Rex range. I can tell my muscles have gotten so weak and my range of motion is really bad. Does this come back quickly once I start exercise?
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NP / SJ .... woot!! If you had to put in order the bad parts of recovery the drains go at the top, glad yours are both gone now!!
Shower advice, take a nice long one and enjoy it! I felt like I had struggles with my towel afterwards, at least the first time, it was helpful to have my husband or mom there when I got out.
Movement, I’ve been told to do basically nothing. The PA that I had my last appt with said if I overdo it the swelling will increase, etc. There's been a couple of days that I've noticed that. Was told "if you are asking yourself 'I wonder if I can...?' then don't" and also whatever I'm thinking to do for the day when I get cleared to cut that list in half.
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Greetings. I'm a little amazed at how many of you are choosing bmx. Was it offered, or did you request. I was offered lumpectomy plus rads or umx. I had genetics panel due to my hx of melanoma and mother with ovarian CA. Getting results tomorrow.
Curious.
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MonicaBstrong ... when my surgeon told me he was recommending a mastectomy (originally planned on lumpectomy/radiation until I had my MRI done) we talked. He said to get any symmetry that I’d end up with some kind of surgery on the other side. It was my decision and he didn't argue either way. I'm 33 and don't want to deal with this again. I'd be taking tamoxifen if I hadn't done both sides too.
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mountain momma- thank you for your input. It makes me feel better knowing I’m not the only one without clearance to do anything yet. This is a challenge because I feel good- but I don’t want to mess anything up! I will not move my arms with confidence now
Did you wash yourself in the shower? That seems like a ton of movement! I assume my husband would need to help. Thank you for your advice- I know it will be heavenly to be CLEAN!!
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monicabestrong- I was offered lumpectomy and radiation with the possibility of hormones therapy as well. With UMX I would have been cleared of all the radiation and hormones. I personally chose to do the BMX because I am 43 with young kids and want this all behind me. Now, Idon’t have to do mammograms or fear that it will come back in the other breast. My pathology report after BMX showed a lot of junk in my healthy breast. My oncologist was happy I chose to do BMX. It really came down to what I was most comfortable with and at peace with. I have never regretted my decisions.
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