January 2014 Surgery Sisters
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girls I have a question.... My BMX was on Wednesday and I am home. Pain is sometimes manageable if I keep meds n all the time. Not too much drainage..15 cc this morning in each drain and 15 tonight in each drain. However, my stomach looks totally distended. I started taking a stool softener today. Should I be worried? Is this fluid accumulation post surgery? Anyone else noticing this?
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Hi Girlstrong:
I was bloated after surgery. BS said was from the anesthesia. It eventually went down within a week. Now just have to watch the weight gain issue with tamoxifin.
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Is it ok to take Colace and Miralax? I took 1 Colace on Wed., 2 yesterday and 2 today... not much happening. I fear I will have to do an enema. On top of that, my period is starting. Great timing, NOT. I was averaging about 40 cc on drain 1, but this morning, it was only 20. I imagine it will fluctuate, right? I am glad to be home from the hospital, but wish I had a nurse or doctor staying with me... to make sure everything is ok.
btw, my path report came back yesterday, everything was clear, including the 2 lymph nodes... woohoo!
Continued healing prayers for everyone here!
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Claire - yes, both are safe to take alongside each other, and every day as long as you need them. Yuck about the period. Just one more thing, right? My drains fluctuated a little bit, too... totally normal. WOOHOO on the path report. Hallelujah!!!!!!!!!!!!!!! I'm so happy for you.
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In a 24 hour period what is the normal range for drains? My nurse came to the house toay and changed my bandages. Pretty emotional! My left breast has like a divot near my armpit, any idea what would cause that? I too am concerned about constipation. I'm trying prune juice later. I've been taking Colace but haven't been able to go.
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it might take a few days to get things going. That's normal. If not better maybe five days, call??
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My drains averaged anywhere from 50-75 (1st week) to 20cc per 24 hrs. I'm not sure about the first few days because the nurses did it and I didn't really pay attention.
If colace alone isn't working, try adding miralax every day, too. That should help move things along.
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Hi all,
I am 3 weeks post op from my BMX and TE placement and am finally feeling like I'm past the worst stage. Things are looking up! I still have pain -- primarily from the TE's, but am doing well. For those who are interested, I thought I'd share a little bit of my story of what it was like for me in the first week.
Besides the physical pain or maybe because of it, the surgery touched off some really major psychological side effects for me. Primarily lots of ANXIETY. I think it all depends on what you've been through before, especially with loss and grief and / or unresolved issues with the medical establishment. I feel for all who are going through this. Someone asked me what is it related to ... I said, well first of all, no one ever sits down with you and tells you how much it really hurts!!!! Makes me wonder if I made the right choice to do reconstruction, or if I'm different somehow or if my surgeons did something differently. I had a skin sparing mastectomy...is that more painful? Do women have less pain without reconstruction? On the other hand, I'm glad I did the immediate recon because I don't ever want to do another long surgery again!!! Another thing is that no one tells you exactly what to expect. There should be an orientation class or something. Things are quickly reviewed by the nurse and they might give you some handouts, but issues are just handled as they come up. There should be more education for women facing surgery. Instead we have to rely on Dr. Google.
One really major side effect was constipation. In the beginning I quit taking the narcotics because I was sooooo constipated. At one point I started vomiting up undigested food. I was afraid of becoming impacted. One of my former co-workers died of impaction, so I figured I'd rather be in pain than be constipated, but I had to resort to the every trick in the book to get things moving again. I wouldn't recommend quitting your pain meds, but here is what worked for me:
If you haven't gone at all in the last 3 days, try using a suppository. Then, start taking 2 stool softeners every day (I used Senna) - one in the morning and one at bedtime. I drank Citracel in the morning, and at night MiraLAX. I drank warm prune juice, ate lots of fresh fruits and veggies with every meal. Mostly ate soups and avoided anything too hard to digest. The BRAT diet worked well for me at first because I had watery diarrhea - nothing solid for days. My sister in law who is a nurse said I should move 6 times a day for 15 minutes. It's too cold here to go outside, so I marched in place, and paced back and forth to try to "wake up" my digestive track. I put a heating pad on my colon and massaged it where it felt numb. Some say drinking hot tea works, or try mixing prune juice with Milk of Magnesia. I didn't do that, but do whatever works for you...an enema might be good to try just for immediate relief. Oh and yes, I had fluid retention - I drank TONS of water all the time and spent most of my time in the bathroom urinating! My stomach and abdomen looked huge but it eventually it went down and started looking normal.
Constipation is a side effect of surgery that no one likes to talk about -- not even the Drs. which I think is really a shame. They should be able to help in this area which can really be a serious problem for some patients.
Another weird side effect was blurry vision. After a thorough test, it was determined I had dry eye due to surgery. Makes sense everything else was dry. And again, like with anxiety, I've had this condition before. I don't think surgery caused all these things, but whatever underlying conditions -- physical or psychological -- you had before will be made worse by surgery. But the good news is that there is help for most, if not all, of what you suffer from, including depression, so don't suffer in silence. Ask for help. That's what the doctors are there for. These things are all temporary. You will feel better. Read those last two lines again. It's true:))
I'm not trying to scare anyone here...don't want to be a Debbie Downer. It seems like most people don't have as severe side effects as I've gone through...just trying to be a realist is all.
Good luck and I wish you all a speedy recovery!
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bc101 - From the women I've talked to, those who don't do recon have less pain because the surgeons don't have to cut any muscle. The tissue expanders are placed underneath the pectoral muscle. I have a ton of discomfort still from my expanders, and I'm a month out from surgery. And I'm nowhere near close to having a good range of motion on the side they did axillary lymph node dissection.
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I thought so...only makes sense. I guess I just really want to have breasts and was told "it's easier" to do it right away vs. doing it later. My TEs are on the outside of the muscle - supposedly it's more comfortable that way. Not sure if that's true or not! Also, mine are filled with air, not saline, so maybe they're lighter? The worst part is where I"m assuming the Alloderm sling is sewn onto the muscles. Oh - and of course where the ALND was done.... that's all just basically numb so it feels weird. One month out is still early, don't you think, for good ROM? I'm hoping it'll get better for both of us. I keep thinking "Slow and easy, give it time!"
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I was given a motion sickness patch before the surgery and wore it for 72 hours. I am taking an anti nausea pill every 6 hrs., but I would rather have the patch, bc it worked so well and did not affect my appetite. The nausea was so bad last night that I barely ate, even with the pill.
I also experienced chills, so I called my doctor, who reminded me to do my deep breathing exercises. Busted! I am going to keep a checklist of the exercises, bc I have been slacking. So much to remember. Thanks for letting me rant.
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Hi Ladies: I had my BMX on Jan 13, so I am almost 3 weeks out now. I was very lucky, and was able to leave the hospital on day 4 with no drains! You should have seen the smile on my PS's face.
The first few days at home were okay, but what followed was not much fun. Constipation and nausea from the narcotics were a problem that ended with 2 visits to the ER, enemas, and drinking nearly a gallon of "Go-Lightly" (that nasty stuff they give you when you are scheduled for a colonoscopy). Needless to say, I stopped taking pain meds and all is well as far as digestion and elimination goes. Keep an eye on it and call your doctor, so you don't have to go through this. (Oh, and yes, I did take stool softeners post surgery).
Week two, both my BS and PS said to start going range of motion exercises, which went okay but I am having a lot of pain and tightness in both breasts from the expanders and also have a hematoma on the right side that arrived about a week ago. My PS said the hematoma wouldn't affect the expansion schedule. I'll see him again on Tuesday and he is hopeful that the hematoma will have liquefied enough for him to reduce it (yuck!).
I wake up most every night at about 3 or 4 a.m. with chest and back pain. Sleeping with 6 pillows that mimic a recliner helps. The Aleve I'm taking doesn't seem to be doing much. I read that taking anti-anxiety meds or muscle relaxers might help. Has anyone tried this?
My first fill is supposed to happen a week from Tuesday, and am really hoping things calm down so I'm able to handle it.
I was VERY lucky that they found my tumor so early (since it was small and didn't show on mammogram). My friends and family all say I'm brave to choose BMX, but I recognized that I might never get this lucky again, and as a single mother of an 11 year old, I didn't want to be looking over my shoulder for life. Reading all of these posts, it is clear to me that most of you really ARE brave and strong, and have had a much more difficult battle and I marvel at the strength of the women here.
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Start the colace,Miralax, etc a few days before surgery to get things started, probably will help on the other end. No pun intended.
When you start fills it seems to go easiest if theyre small--50cc etc size, as opposed to 100 or more at a time. Might take longer, but less discomfort.
There is a ton of information on the process and what will happen and how things will be after the surgery that we arent told. There are good books out there, and this website, where I got most of my information. Doesnt seem right.
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Thanks for the responses to the constipation issue, happy to report things are almost back to normal now lol. I go tomorrow for my first post op check and hopefully get drains out. Should I expect it to be painful? Also got results of lymph node biopsy and there was cancer in the one they took out. I guess it is chemo for me.
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When they took my drains out, it was very quick, so it wasn't bad at all. You will feel much better without the drains! So sorry you have chemo ahead of you.
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Jmenchaca - I'm so sorry about your path report. Keep your chin up - chemo is no picnic but doable! Look through the discussion boards here - lots of great tips and advice on how to get through it. I did 8 chemo treatments before surgery. Dtkd is right - you'll feel so much better after you get drains out. I hope you're able to. I had mine for almost three weeks. Blah!
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Jmenchaca - I had my drains out at 9 days and 11 days. My PS wanted them out as soon as possible....that caused a bit of a problem with on because the fluid kept building up...so I had to go back twice to get it aspirated. Not a huge deal...no pain in that. But she was weighing the pros and cons of infection leaving them in.
I'm heading to the PS today after 2 weeks. I'm hoping she lets me leave them air out now.
So as you all know I'm just over 4 weeks post surgery and last night was miserable. I have been feeling great so started to do more around the house...vacuum...dishwasher...laundry. WELL....I guess that wasn't a good idea. I felt like I have taken a huge step back. Pain and anxiety and achiness! My boyfriend said I moaned all night! Guess it's back to being a couch potatoe for a bit! 0 -
Good morning everyone...my surgery was on Friday January 31st and they sent me home yesterday morning with two drains, Percocet and Valium after a double mastectomy. I haven't seen my breast yet, yesterday my BS told me it would be better to leave the bandages alone until she would take the drains out, hopefully tomorrow or Wednesday. I am doing ok, I guess. Sore, but if I take it easy I can move around a bit. Dreading to see what I look like, at the moment I am quite happy just to see the bandages and the surgical bra...I was very dizzy after the surgery, took a while to shake off the anesthesia. Happy to be home, with two Golden retrievers lying next to my bed and following me around. No bowel movements yet, but reading your posts that is normal. I should have taken something in advance, I guess. I hope you all feel better soon!
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good morning all,
Suzy...My drains came out on day 10. I know they are a pain but don't rush it. If the fluid isn't going into the drains your body has to absorb it. I still have a tiny bit of fluid coming out through the incision.
laurie.. take it easy....I too am still in pain and it is getting old really fast. I want to clean the house sooo badly. My almost year old border collie/Australian shepherd mix is shedding, there is a ton of fur behind the TV... I can get to surface stuff...and the carpets are light beige so I don't see it there, but I know there is fur underneath everything
.Jmen...So sorry about the path report. I am still on the fence about chemo, waiting for the oncotype. The drains were painless coming out. Only takes a few seconds.
I spent the weekend trying to understand information on reoccurance(sp) rates based on the oncotype score and all the other factors in my path report. So freaking inconclusive. Do you know if the score means "it" can come back locally or is it more likely to metastasize? I get conflicting ideas about that.
Oh well...more research.
Feel better all and take care,
Eve
Day 5 without a cigarette....yippee..I really want one though, REALLY want one.
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Laurie - I'm the same way. I feel pretty good and then I do WAY too much and end up paying for it. Four weeks may seem like a long time, but it's not really, considering the major surgery we had!
suzy - glad you made it through surgery safely and are comfy at home. Definitely try to move around a little, but DON'T overdo it. Your body has been through a ton! {{hugs}} for when you get your bandages off. I never had any, so I saw myself the morning following my surgery. It wasn't as traumatic as I expected (I'm usually SO emotional) but many women say it is. I would definitely take something for constipation if you haven't started yet. Take a stool softener twice a day, or miralax or something every day. It may take several days to get things moving. I think I didn't have a BM until 5 days after surgery.
Eve - WOOHOO! FIVE DAYS!!!!!!!!!! Keep it up! I'm so proud of you.
I still have pain and my surgery was 2 weeks before yours! Don't rush it. Recurrence rates...blah. I don't even go there. I was Stage III at diagnosis, am BRCA+ and had 9 positive lymph nodes from surgery. I made the mistake of looking up THOSE statistics and didn't like what I saw, so I quit looking. I know you are having to make a decision about chemo so your situation is different, but I had to STOP. The only advice I can give is that you don't want to have to go through this again, so do everything you can to treat THIS cancer. I have two friends who had cancer and it came back. One had cervical cancer and then breast cancer 5 years later. The other had ovarian cancer which came back twice in the last 6 years. Both only had surgery (hysterectomy) the first time around. Makes me wonder if they had had chemo or radiation or SOMEthing the first time around, they might not be where they are now. My friend with BC is doing great (same exact diagnosis as me), but my friend with ovarian cancer is in hospice. 
She's not even 40 and has three little boys. I'm not trying to push chemo on you, but just giving some other perspectives. My doctors recommended one of the most harsh chemo regimens, then the most radical surgery, and now rads on top of that, and I'm good with it. It is not a fun ride, but I want to look back knowing I did everything I could to rid my body of this cancer NOW. (Sorry if that sounds preachy)My kids had a 2 hour delay today due to ice (and it was 80 degrees Friday!!!), so I just got to work. I'm feeling pretty good except for the pain around my left tissue expander (it is WAY up in my armpit) and just tired. Tired all the time. Yesterday was my birthday and I slept until 10am. That was wonderful.
The arm exercises to improve my range of motion still hurt a ton. Ugh. Tomorrow we're supposed to take a picture of my left incision & email to my plastic surgeon. He's 3 hours away and said we could do it this way so he could see how I'm healing instead of us driving all the way there. I think he'll be pleased, and hope that he wants me to come back soon for my first fill. When I saw him last time he told me not for another 3-4 weeks... but my incision is almost 100% healed, so hopefully he'll say to come in later this week or next week. The sooner I get filled, the sooner I can start rads and get this crap over with!Happy Monday ladies! Remember to wear purple tomorrow for World Cancer Day - celebrating SURVIVORS!
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When I was diagnosed, all I could think was that I have an 11 year old boy who needs me. I'm a single mom. My son's dad had a heart attack last April, and although he is doing fine now, I need to be the ONE to be there for my son, who only spends Tuesday nights and every other weekend with his dad anyway.
This is why I opted for the BMX, even though I was stage 1 to take care of this NOW as MIchelle says. They did find pre-cancerous cells in the other breast, so I am certain I would have been dealing with the other side later and feel like I made the right choice.
When I saw the Oncologist, I just told her that I wanted a very conservative approach and would do whatever she recommended. Assuming my PET/CAT scan Wed. comes back clean, I'll just be treating with 10 years of hormone therapy. I'm so hoping that they don't find anything else (they are specifically looking at my liver due to elevated enzymes and my thyroid, since my sister had thyroid cancer), but if so, I'll do the chemo or whatever it takes. I don't want to have to look over my shoulder from here on out.
Suzy - that first look was hard. My PS changed my dressings while I was in the hospital. I think it helped that I had forced myself to look at a lot of reconstruction photos, so I knew what to expect. Just know that this isn't where you will end up and hold onto that. At 3 weeks, my incisions are looking pretty good and I'm allowed to put lotion on them now. I do have a really ugly hematoma on the right breast that hopefully my PS will be able to aspirate tomorrow, and fills will start on 2/11 if all is well. I won't lie, the expanders feel like bricks and it's painful. My advise is to do one or two small things a day tops, pace yourself and get of the narcotics as soon as you can, because they WILL constipate you, as to the anti-nausea drugs like Zofran. I tried Ativan and Aleve last night, and was able to sleep for 6 hrs. straight!
Diane.
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hi Diane - I am in San Jose. Had UMX on 1.29, doing better every day. I am trying to get off Vicodin, I am still taking 1.5 every 5-6 hours. How long did it take other ladies to switch? Will simply try Tylenol later today and see how it goes. My kids call me Supervisor now, as they have to do the work and I am giving the instructions (for laundry etc) ... I am grateful for California winters that allow me to go for walks outside any time. Hoping for a good path report tomorrow.
I had twice at night panic attacks where it felt like someone was sitting on my chest and pushing the air out, I was so scared. My DH talked me through them, but has anyone else had that feeling, and what did you do?
Thank you and I wish continued healing to all January Sisters.
Alexandra
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Alexandra - Yep, I had those feelings. I felt like I was jumping out of my skin and was about to get up and run around the room. It happened to me about 3-4 times in the 2 weeks following surgery. It is the most awful feeling. Do you have any drains? My surgeon told me that the drains can increase a claustrophic(sp?) feeling and she was right. Since I got my drains out I haven't had that happen once. I wish I had a magic cure for you... I think one time I borrowed one of Hubby's Xanax, but the others I just walked around and talked to him, and had him massage my arms (sounds weird but it helped distract me from my chest). Don't rush getting off the pain meds. You are only a few days post-op! I think I switched to Tylenol around 2 weeks after? I would just space out the time between pain pills when I was feeling better.
Diane - I hate the feeling of the expanders. You're right, they are like bricks. My left one is way up in my armpit and so painful, and it doesn't help that that's the side I had lymph nodes taken from. ugh. I'm like you - I had looked at tons of mastectomy and recon photos online before my surgery, so I kind of knew what to expect. When I saw myself I was more curious and surprised, like "Huh, that's my body?" kind of thing. Good thing for you to be proactive since they found precancerous cells in the other breast!!! I'll be praying you get a clean path report!
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hello my BC sisters...just came back from my PS appointment and he was very pleased with my progress and says that I can have my drains out on Thursday!!! That will be 8 days after surgery and I am thrilled!!! I told him about how tight the masectomy bra felt...like an iron corset that kept squeezing tighter throughout the night. He suggested that I start wearing whatever type bra I would like; sports type bras or nothing at all!!!! Yippee again!!!!! So my mom took me to a Target after the appointment and I decided to buy a very comfortable looking nursing bra to get me through this last few days with drains and then I may go al fresco?!?!?! One other thing I found out was that he put 250cc in each breast!!!!!!! No wonder I'm so sore. No wonder my girlfriend told me that this was the biggest she's ever seen me!! This is a far cry from my "A" cup pre surgical status but I am happy with how things look so far. He also told me to start massaging the top portion of the implant as well as having someone massage my back. Love that idea!! Be sure to do your arm exercises, no frozen shoulders for us sisters. Much love
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Girlstrong - 250?!?!??! Ouch! I had 100cc at surgery and I thought that was a lot. LOL Just a warning - getting rid of the mastectomy bra won't totally eliminate the "iron bra" feeling. A lot of that is from the expanders. I wear a cotton sports bra and I really can't even feel it - I feel the same "bra tightness" whether I have it on or not. Getting drains out at 8 days will be AMAZING! Good for you!!!!!!!!!!!! Thanks for the reminder to do my exercises.... I've been bad about it because they HURT!
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I just love you guys....
So, I have spent all morning looking at some really interesting you tube videos from well, oh crap I didn't write it down....sheesh,
anyway the doctor/researcher is Dr. Paul Goss. Tons of information about BC and AI's and Tam research. Wow! it is amazing to listen to these researchers and their passion for finding a cure or at least to treat BC as a chronic disease like my high blood pressure. Very encouraging to know that there are really exciting trials going on.
I was having a problem wrapping my feeble brain around the WHY of chemo and or AI's for me. No nodes, no Lymph/vascular invasion, grade 2, BMX,...now I understand that there will always, even with treatment,be a chance for mets. ugggggh
And I learned that one AI is better than another as far as side effects and bone loss...but we post menopausal women that have a higher expression of ER and perhaps PR are found to have stronger bones anyway.
Am I weird for wanting to know all this stuff... or do I have too much time on my hands?
Girlstrong...you sound giddy, fabulous for good news, I can't wait to go al fresco!
Michelle and Diane...I so understand about treating this aggressively.....Just, I too have had experience with my mom and former, husband with colon cancer. Mom had surgery and a colostomy 50 years ago...no chemo,(she died from a preventable stroke) my husband had surgery and chemo, then 2 years later died from a brain tumor ( according to the docs I listened to today the brain cancer could have been a result of the chemo, something I have thought for a long time. But will never know) While I truly think the medical community is making strides especially with delving into cancer at the molecular level...they are not there yet with the answers we need.
I don't think you are being preachy at all, I am an information gatherer of all kinds. You guys are on the front lines.....I wish the generals(researchers ,docs etc.) would come here and compile all our experiences and thoughts and add us to their arsenal.
Hey Alexandra...I was born in San Jose....
Take care and love to all,
Eve
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The research I looked at was from mass. general and Harvard med also from Sloan kettering...really impressive stuff. encouraging!
eve
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Alexandra, please don't get me wrong....If I could still be taking the narcotics, I would be taking them, especially at night. The problem is that ALL of them make me nauseous, and constipated and I became impacted, so I HAD to stop. Last night I tried taking a Ativan with my Aleve (since I had read that it can help relax the muscles) and slept 6 hours straight. I feel better today.
Wow Michelle, I had 150cc's in each side during my BMX. I can't imagine 250!
About the exercises, I do mine in the shower, so my muscles are warm. That seems to help.
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Good morning everyone. Didn't feel much like chatting yesterday...but read all your post on my way to the PS. Hope everyone is pooping (LOL) and healing well! Constipation sux...like I said I was doing everything right. I ate cooked prunes, raw prunes, took stool softener, laxative. Drank tons of water. NOTHING GOT ME GOING! My boyfriend got me two types of suppositories AND an enima. Tried it ALL...only the enima worked. Riped me a new one...but worked! It was nearly the most unpleasant thing I've experienced.
So she reopened both incisions again yesterday and cut away the rest of the skin she didn't like. She says they look great and with this last bit of dissection I should very soon. I can take the bandages off in 48 hrs and shower after that. No more polysporin!
She says my skin was healing the best and she wanted to give it the best chance...so that was why the polysporin. OK...she knows best.
I found out that I got 117cc at surgery...so she will start fills next week to get to 350!
Today I'm a couch potato.
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On the topic of research....I did look for a bit in the beginning...but decided that I'm not expert and to let my docs make their best choices for treatment. They said take tamox...so I take tamox. Right or wrong. I have no experience with cancer in my family history at all...so we're all newbies here.
When I did explore the internet...it just scared and depressed me. So I just don't know. Each to their own I guess.
I'll probably be super chatty today...lol
Laurie
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