August 2010 Mastectomy
Comments
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Winterstorm: I think they usually take the drains out when your output is around 10ml or less for at least 24 hours but like others have said your body an eventually absorb this. It just takes time.
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I had my drains removed 2 weeks after surgery and 2 of them were still putting out 50cc. I was worriend about it but he said keeping them in longer could cause infection but it was very important to keep wearing a sports bra 24/7. I have been doing well since then. Looks like everyone does things differently.
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Hi Everyone,
Trying to catch up a little on all your posts. So glad Mindy, RobinLM, Lago and Sunny are home and doing fairly well. Most of you get your final paths next week - I wish you well. Please remember that the Oncotype DX is NOT the final word on Chemo. It does not take into account where your tumor was located and the size of the tumor. You need to have a frank discussion with your Oncologist. I had a 63 on mine (very high) but the Adjuvant Online model showed that since my tumor was small (8mm) there was not much benefit to chemo. Ask alot of questions! It will ultimately be YOUR decision. Sorry, that is my preaching for the week.
Again, it never ceases to amaze me all the different protocols and different instructions we get after surgery. Lago, I showered two days after surgery. (only letting water run over my chest and with the 4 drains tucked in a pouch around my neck) and I had TE's with surgical tape over the incisions.. Did my hair in the kitchen sink. Mindy - My drains had to be down to 30CC within 24 hours for them to be taken out (was exactly two weeks) Try not to do much activity or they will be draining more - we early girls found that out the hard way. They also told me to keep the bra on and that would help. LindaNZ - You are sooo lucky to be able to sleep on your side. Maybe it was because of your "onestep:. Those of us with TE's - If you make a mistake and turn over the TE pokes right into you and it is VERY painful - at least to me. Would like to hear from other TE people who can actually sleep on their sides. (My sister had her implants done last November and STILL can't sleep on her side!) RobinLM - Your surgery sounded very interesting - I wish I would have been offered the implant at the same time
Sunny - I read your post about all the skin you still have. You should see me! I was a DD and I think they kept all of it. So much that it is hard to tell how big the TE really is. It seems to be everywhere and even tucked under my arm. Were you also big?
I get my 2nd fill on Tuesday and hope to be around 450cc. I really want to stop there I think - More decisions. And like I said it is so hard to tell with so much skin everywhere.
Started my Arimidex yesterday and taking also Fosomax for bone loss. Waiting for the hot flashes and SE's to kick in but so far so good.
So glad most of you are doing ok. Carla, how did your second surgery go?
Hope everyone has a Happy Labor Day!
Nancy
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Hey Everyone,
Day 28 since my bilateral no TE yet. I am still waiting until friday for my oncotype test results. Nbb I will keep your input in mind. I am going to get a second opinion as well once the test comes in. My computer model left me wondering. It showed a 9% decrease with chemo. Low but not low enough to dismiss. That is why my oncologist said he would let the test decide if the results were not in the middle. Before this test was available he would have said do chemo because I am 45. So I have no idea what to expect trying no to get my hopes to high and prepare for the worst but I will still be pretty crushed.
My recovery is going well so far. I have very good flexibility in the arm. My 2 drains came out at 10 days and I wore a compression bra. I was down to about 13 ml. I was able to shower and do my hair.
Now I am doing much more. This week I took two zumba classes. The surgeon told me on Thursday go back to what I would normally do. I still get tired but doing more and more each day.
My husband was away for four days and even though I missed him it felt good to be independent. Drove myself to the gym and the market.
Going to walk next door to my neighbor's fish fry today. It's very warm but also windy. I will blow dry my hair but I am sure it will end up all over the place. Gonna wear a blousy top so I don't look so flat. Not going to push too much today.
Hope you are all having a nice day off.
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Hi everybody, Well...Nancy, my 2nd surgery didn't go well as planned. I got there, and the Dr. Hammond, who I trust completely, explained that b/c I have a lot of mastectomy skin that is not getting enough blood supply to it and is dying, he was going to go in and take off these scabs and see whats going on underneath. If he didn't like what he saw he would try a new approach to get that tissue healthy again. So..... thats what happened. I went into his office the next day and he cleared away more tissue that needed to be cut away. On Friday I went back in and they attached a machine called a VAC to both of my breasts areas which were not healing well so it could drain out the bad stuff and circulate good blood to hopefully restore the bad tissue. Its not comfortable to say the least, but if I can get through it for a week (hopefully not 2) then Dr Hammond will try the skin grafting again and it should heal much better and quicker. Meanwhile I am back on my pain meds and b/c there are these 2 huge tubes attached to my breasts which are attached to this rather small but heavy pump I'm staying in bed cuz the constant "sucking" /pulling sensation feels a bit unatural. I'm calling this a bit of a nuisance but in the long run I will be happy with the results. I think that both breast have gone through radiation and my right breast has gone through chemo, its just going to take longer to heal.
My kids (ages 19-25) have all been wonderful although its hard for them them to see me in bed again, and my dear hubby has a real hard time seeing me go through this as well. I'm in a hospital bed in another bedroom so we really miss each other at night. But this will soon pass and will be forgotten. We are still waiting for our first grandchild to be born. She lives with us too, and the longer she can hang on the better, b/c if these tubes can be taken off and I can have this 2nd grafting done then I can at least be closer to her in the hospital when she gives birth if the doctor thinks its OK. So alot is going on, and life continues to be interesting! I'm glad I can share all this with all of you, and I still believe that I'm doing the right thing being BRCA2 positive and having this mastectomy.
Continue being strong and courageous!
Carla
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Carlatap sorry to hear things aren't going as planned. I myself have just assumed that reconstruction is not a 1 (or 3) shot deal. It takes a couple of tries/revisions etc. My PS even told me there are some people that just reject implants and even has one of the alternative options for me as no implants. In your case I'm sure they will be able to fix things but it will take a bit more effort. I think it's pretty courageous what you're doing. If my skin can't stretch from radiation I don't think I could do tram or lat flap. Matter of fact no one is touching my belly.
So my sister is driving me (and husband) crazy. I need to nicely ask her if she can move her flight up. She's just too chaotic to have around. She's very disorganized and our space is very small. I thought she'd be a great help but I haven't really needed help except for the drains… which she still hasn't learned how to do yet. I think tomorrow I should be able to handle the drains on my own. They should be coming out anyway tomorrow or Wed. depending on when I can get to the doctors office. I hate to do this but she really is driving me crazy and tiring me out.
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Have y'all had any problems with chills? After I got back from the hospital last week I was either too hot or too cold meaning I was either sweating or was shivering. And last night I was so cold and shivering. I don't understand this. What do you think? Any experiennce? No fever.
Nancy yes I have been rather active. It's difficult to keep me down. But all I've ever really done is walk from here to there. So lots of walking. I avoid lifting. I did do a couple very small loads of laundry this morning but had help getting it from the washer to the dryer. I used a step stool to get the clothes into the washer (I'm short).
Drain #4 is no longer draining and I think this must be good! Other two still at it.
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winterstorm I did have one night where I woke up with the chills about 4 days ago. Hasn't happened since. I out extra blankets on the bed. I think maybe because my husband was not here but the next night I was fine. NO idea really why I was so cold.
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Thank you, lago, for your encouragement. Yes, this is going to take a while. Even though I'm having issues with the mastectomy area, the lower ab area is healing nicely so I'm very relieved about that. I hope you can get it worked out with your sister. Is there anything that she can do that has nothing to do with your care that you just hate to do but she might like to do it? Does she clean out kitchen cupboards? Does she wash jackets, blankets and stuff like that? Does she iron clothes? (I hate to iron.) Its just that if she came out to help and you even in your nicest way let her know that she's not needed, it may take a long time to fix that relationship.
Mindy, while I was in the hospital I was running a very low fever below 100 every evening around 9pm. Sometimes that would give me a chill. They would just give me tylenol and then it go away. I don't know where you are at with menopause, but after I get through a hot flash, I can get chills for almost a half hour until my body calms down again. I hope you can figure things out soon,
Carla
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Carla - I'm so sorry you are going through all these problems, but you really do sound upbeat and very together - not sure I could pull that off.
Mindy - I had chills when I first got home from the hospital too. I think that is fairly normal. If it continues with a fever of course you should maybe be concerned.
Lago - Hope your sister is helping you a little more. I think some people are good at that sort of thing and some aren't.
Just got back from having a "fill" and now am up to 450cc - I think this is where I want to be but there is so much skin I can't really tell. I see the PS for the 6 wk post op next week so am anxious to discuss things - ( I only saw him once before the surgery). I do know that I am going to need some revisions. I just hope it will all be done by the end of the year for insurance purposes.
Hope everyone had a nice holiday.
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Sister and I are getting along ok but I'm still sending her home. I just don't need her.
!!!!!! my drains were removed today !!!!!
The PS nurse seemed rather impressed with my progress. Said my range of motion was better than expected and my bruising is not bad at all for just a week out. (I'm all yellowish). She removed my drains. I hope I keep up at this pace. I see the PS on Friday.
I don't think my path report came in. I'm sure it will be in tomorrow though. I've been out all day.
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Nbb did you have the TE put in during your BMX. I am waiting to get my TE and I am wondering how bad the surgery will be with the mastectomy part over with.
lago Glad you got your drains out I so know that glorious feeling. You should feel way better now. My sister came and took care of me too. She was very good with me but I think she was starting to bug my husband. She is a great cook and very independent so she went out a lot and did things didn't hover. It was just for the first week and she is an amazing cook. Wishing you good results on your path.
I am dealing with a husband who has decided it's time for me to get back to normal. We have a business together I jsut did not feel like dealing with it. But he upset me yelling about the bills etc and then I made a mistake and cost us some money. But I got dressed and got some stuff done today and he seems much happier. I guess I do too. I was getting into a routine of pjs and TV and I am way past that at this point. It's been a month and I went to the gym twice this week so if I can do that I can sit on the computer and write letters and send emails.
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Way to go lago! No more drains. Did I tell y'all another drain fell out?? Yep, happened yesterday sometime. Needless to say, my experience with drains went down the tubes. That's the two on my left side that are gone now, and one on the right is not draining any more and then one more on the right. I see the surgeon on Thursday so I am sure I will (gladly) get these removed as well!
The scars feel really tight and I hope that isn't going to be a permanent feeling. I know scars aren't elastic like normal skiin is, but gosh. I have an inny and an outy (like belly buttons). On the left it looks like a little boob and on the right a little concave. The cancer was on the right.
Carrol the bills can be very upsetting. It's bad enough we get cancer, but the financial stuff is a pain and a half.
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BTW I read today that the drains do sometimes fall out and nothing to worry about as long as you contact your doctor.
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Yes I contacted my doctor's office and they said just to keep my appt for Thursday. TY Lago.
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Hi
Finally some results. And good news too. My HER2 result came back as negative. My tumour size was a fraction smaller. These two results mean that for me the benefit of doing chemo is neglible (1%) so I probably won't do it. The oncotype test is relevant to my situation but I don't feel like paying US$2000 given that it doesn't make much difference to the numbers.
The benefit of tamoxifen is another 1% but this I probably will do since the risks and side effects are not as bad. I now have to see a radiation oncologist because of a very close clear margin. But it feels like I can finally see light at the end of the tunnel. Just some revision surgery maybe (to remove the sideways bulge in the foob), a nipple added, a daily pill to take, some hot flushes and other side effects of the tamoxifen, and of course lots more waiting. Good news amongst bad news. Houses of my friends here are being demolished due to earthquake damage. That is awful. Some of you are not so lucky and have chemo ahead of you - I am sorry and sad about this too.
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Mindy, part of that "tight" feeling is your muscles...they pull 'em and stretch 'em to get all the breast fat off them. It eases up as the weeks go by. I still feel "tight" on my left side but now it feels more or less like I have a bra on. That kind of "tight." No longer the feeling of having a big set of teeth clamped on there. Your non-boobs don't look anything like they're going to look. It's swelling, and fluid, and the tissue saying "What the hell happened here?????"
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LindaNZ: Great news. Yeah I'm doing chemo but still have to meet with oncologist. Still don't have my path results. I don't know if they're in yet. Called nurse yesterday morning and she returned my call at 3:25 saying she was leaving in a 1/2 hour. I got back home at 3:50 but they already turned on the answering machines. I assume if the path report was in my brother-in-law would have called. I'm sure he's watching for it. The only thing I expect to change on the path is maybe the tumor is smaller. Also I want to know if in fact it isn't in the lymph nodes. Other than that I expect my hormone and HER2 status to remain the same.
I definately feel more range of motion now that these drains are gone. I'm a little sore from the removal but I'm sure that will go away in a few days.
BTW My nurse said sometimes people bloat in their stomach after surgery. I'm one of those people. Did anyone else experience this? When does it stop. I'm not used to having a tummy. (Don't worry I have butt & thighs to make up for flat stomach
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Haha Lago, I'm with you on the bum and thighs.........
I've also been having something like irritable bowel. the pain builds up until you have to run to the loo. Thinking it might be the diclofenac (anti inflammatory) so I've stopped taking it to see if it stops. Either that or I've become sensitized to bread.....Im going to see the plastic surgeon tomorrow, to have steristrips off...... bit worried about that, will see the scars for the first time.....
Also have a lot of swelling under my arms, not in my armpit but level with the foobs......Bought a compression bra, looks like I am keping a small rubber ring inside it...
I'm getting a bit of pain, but more discomfort now, almost like the 'milk coming in' feeling you get when you breastfeed - bizzarre.... any one else getting that? Stabbing pains along the scars, unpleasant feelings that feel like my nipples are there - but they are history... it's all too weird.....
Forgot tosay that I got signed up for some research on my breast tissue. They are looking into the levels of arsenic and other heavy metals in rice. Apparently a lot of polution goes into the waterand is taken up by the rice plant and is stored in the grain. The levels in rice nowadays are a# magnitudes higher......anyway, suddenly felt relieved that I don't eat too much of it!
RobinLM
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Robin: I don't have those fantom pains but they do happen. I hear the will most likely go away. Your nerves need to learn that your breast are not there anymore. My IBS is more constipation and bloat. As long as I eat right and eat dried fruit or Milk of Magnesia (magnesium hydroxide) when a problem first starts I'm ok.
------ path report -------
Lymph nodes all negative!
Tumor only 5.5cm (part of it was DCIS)
other breast just had some benign pre-cancer
Stage IIB (and my BS thought that was highly unlikely)… considered early breast cancer! -
Lago - Congrats on the negative nodes! I am guessing you are doing chemo because of the size of the tumor and the Grade 3? No wonder my stomach looks so big! Thanks, Lago I'm going to use this excuse for awhile! Also, congrats on the NO DRAINS. What a difference that makes!
Carrol2-Yes, I got my TE at the same time as the BMX so I'm afraid I won't be very helpful. Not sure how much more/less pain there is if it is done at the same time. Just be prepared to feel like you have two bricks strapped to your chest. BTW - What is Zumba? I see our gym has classes here too and it might be good to get back into shape.
Mindy - You're not having much luck with those drains are you? Hope you get all removed at your next appt.
LindaNZ - So glad you got good news! Your DX was alot like mine only I was Grade 3. You mentioned the Tamoxifen didn't have a big benefit. I was only 20 percent ER + . Was yours low as well? I am so sorry about the earthquakes. I heard there was a large aftershock in Christchurch. Are you any where near there?
RobinLM - I do understand what you are feeling. I actually felt really great the first week and then I started having weird pains too and more discomfort. I also had phantom itch in my right nipple and other places too which was very annoying. I am 5 weeks post op today and have to say I am finally starting to feel pretty good. Not great but so much better. There is light at the end of the tunnel. I can actually work all day and not have to go to bed at 5 pm when I get home,
I've been taking a poll from my frients on the size of my new foobs and it is really funny. Those with big boobs said " you look great - those are big enough. And those with small boobs said "go bigger". I guess one always wants what one doesn't have!
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Robin, I had the phantom nipple pain too... on the right side, it itched and just hurt... I had forgotten that! Don't worry, it goes away.. I haven't had it for about two weeks now. You're right, it is STRANGE! You want to scratch or itch it or something.. and your hand goes thru air.. it drove me CRAZY! LOL!
So again.. It goes away!!! ((Hugs)) to all our "month-enders". It gets better. I promise!!!
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NBB i am wonder what size I will be when I get to that point. At first when I saw my flat chest I was thinking how thin i looked lol. Now I am feeling too flat. Originally I figured I would go to a C cup. I was a DD and that size was hard to shop for but with fake perky implants and no need for a bra maybe not so I don't know. have you tried clothes on with your expanders to see how it looks?
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As someone who was a 34A I don't look too bad with expanders right now. OK maybe a little boyish. Then the Barely There bra goes over that and I look like I'm going through puberty. Can't really tell that much in my shirts in loos shirts.
Nbb 1023: When you are HER2+ you get the drug Herceptin. They find that they get better results with Herceptin when used with Chemo. I meet with the oncologist on Tuesday but I know that chemo isn't really something I can take a pass on. I'm sure this is why they probably don't do an Oncotype test for HER2+ with node negatives. Expensive test that means little if you are doing chemo anyway.
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I'm leaving in an hour for the hospital to have a left mastectomy.So scary-it feels surreal.Wish me luck
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jpb: Wishing you luck and hope everything goes as well as it did with me. Yeah it's surreal alright but a week later you won't believe it. You'll still be you.
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Iago, that seems to me the most important thing about this whole experience. We're still US. Just ... streamlined....
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Hi Everyone,
Five weeks post BMX. My personal experience is that the first two weeks were tough but a haze because of the pain meds. The next two weeks were hard for me physically and emotionally because I had an infection and all those weird pain/pins and needle sensations (both are now gone!). This last week was challenging because all the swelling finally went down and all I could feel were the seams of the TEs. I finally had my first TE fill yesterday - 100ccs. I feel SOOOO much better. I was expecting pain, discomfort, etc. but actually the fill gave me alot of relief from TEs. The saline makes the TEs more cushy instead of the hard bony edges I could feel before. I can even lay on my right side at night!!! But it is a day to day experience. I overdid it big time on Tuesday. Went to the gym, grocery shopping, physical therapy, and my daughter's soccer practice. I was in bed exhausted and in pain by 8:30. So, I would say you really need to listen to your body and obey it!
Speaking of fitness, my BS refered me to a PT that has lots of experience working with BC survivors. I am so tight all over my arms and chest. I can raise my arms in the air but I don't have full range of motion. My insurance covers 30 visits per year and I am going to be going twice for the next couple of weeks so she can show me the exercises to do at home. I strongly encourage you to look into PT because if you are like me, you don't realize how tight your tissue is as a result of surgery until you try to do something like "Angel Wings" or butterfly arms. And the PT gave me a 15 minute back massage too (while sitting, she propped my chest and chin up on pillows)....that alone is enough to make me want to go back. Heading to the gym right now to do some cardio and PT this afternoon. I'm off work until Oct 1 and my focus is to get better every day. Hang in there ladies, it does gets better!!
Smurfie
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Just got back from visit with surgeon and I am cancer free, clean margins, no chemo, no rads, no more surgery! I still have two drains on my right side he wants to leave in but I lost the other two on the left side this week and he wants to watch the fluid on that side. No cancer!! Next step is a followup with surgeon in a week and my oncologist on the 30th.
He did say the flaps on my sides will not go away but when I asked, he said they would go away with weight loss. If this were a permanent thing, how horrifying to live with this disfigurement. Bad enough to go wtihout breasts.
I need PT as well smurfie. I will start doing exercises on my left side but will avoid the right side until the drains are removed. I can raise my arms much better than last week.
jpb, you are in my thoughts. I'm sure everything will be okay.
When i was in the hospital after my surgery, my right nipple itched so I can understand that!
I'm still me, still Mindy. But now I am a cancer survivor whereas I was not before. Cancer was just not part of my life before. As it is now, I'm not sure how long it will be before I quit looking over my shoulder, and be able to just relax.
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Thanks for the reassurances girls, I hope the strange feelings go soon along with the swelling.
Went to hospital to get the steristrips removed. I had to wait more than 1`1/2 hours to be seen, I was exhausted sitting on a hard waiting room chair for that length of time and had keeled over a bit by the time I was seen. Sitting up straight and breathing is very hard isn't it! Anyway, she said it was all healing very well, but put a new set od steristrips back on.... I've got to go back next thursday, hopefully won't have to wait then.
jpb, good luck for your Op, the anticipation is worse than the reality, you will be fine.
Mindy, fantastic news ...... YAY! You can take time to relax now and recover.
YAY to you too lago - fantastic result!
x
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