August 2010 Mastectomy

dawney

I started driving during the third week and went back to half day after three full weeks and worked full time last week.

I am not happy with the way I look at all, I have gotten used to it, but not happy.  I had only a left side MX and the BS saved some muscle so I have a little flap of skin, my husband and I call it Frankenboobie!!  He left the muscle to help with reconstruction but that is sill a while away.  I have been wearing a post op tank top for about three weeks and am tired of it, I look lopsided in my clothes.  I tried on a soft bra earlier and didn't like the way it looked either.  I should be fitted for my prosthetic bra sometime within the next week, but I want it now!!  I won't be having reconstruction until I am done with treatment but I wan't to look normal in my clothes now. 

Dawn

Carrol2

I started driving yesterday it's almost 4 weeks. I waited to see my surgeon before I tried it, but I could have driven a week ago i think. Doc said it was ok as long as I am not taking the pain killers during the day. I used a pillow last week as a passenger for the first few times but don't need it now. I don't really have bad pain now just kind of this annoying discomfort and I get really tired.

I am not happy with how i look just making due. I had a bilateral so i am even but very flat. In some of my clothes I think you can tell I am flatter than being just small chested. I did not get any prosthetic because the doctor said wait and make sure there is no swelling to get fitted. I don't see any now but maybe there is enough to affect that. I try to look on the bright side I do look very thin this way. In a sweatshirt loose top  you can't really tell, but in my gym stuff seems kind of flat. I can see tow kind of low lumps from the excess skin left for the Plastics.

 I am just starting to feel better and even though I am looking forward to getting boobs back I am not looking forward to more surgery. 

My zumba instructor did not know, a friend was bragging saying how good I was doing taking class after surgery and she asked if I had knee surgery ha!

lago

You'd be in a lot more pain if it was knee surgery… and not doing zumba 1 month later. My mom had double knee replacement. Lets just say I hope I never have to go there.

sunnybluesky

wow had my MX withTE tuesday aftrenoon--came home thursday--was feeling pretty good both, physically and emotionally and I just now found a voice mail on my stupid old cell phone that came in yesterday from my BS.  She told me my pathology report via voice mail....I am really confused and upset.  My tumor size on mammogram was 1.6 cm and now BS says it is 2.5 cm--which puts me in a different stage--how can there be such a huge increase in size?  BS said I had TWO sentinel nodes and an additional node that had a few isolated cancer cells which is not uncommon with core BX, but they consider this node negative.  I have not read of this in any of my research. Then she said I had clear margins--the reason I had a MX was to not have to deal with any breast tissue.  I had a skin-sparing MX and was astonished to see how much tissue is left.  Right now I am feeling I just want to go back to surgery and have the TE removed and all that skin gone and have no reconstuction. BS also said with the type of tumor I have they will do oncotype gene studies---does anyone know what that means?  Also BS said that pathology report takes 7 days--is it possible to get the report in only three days??  I am thinking that maybe this isn't my report--boy--we've all been there. "This has got to be a mistake".  the BS told my DH that node was negative while I was in recovery room--when I heard the news, I went into almost celebratory mode and e-mailed all my family and friends with the "good news".  Now I'm just sitting here not feeling good at all.  I think it's all just hitting me.  But, you know what --I CAN do this---I just don't know why I can't stop crying.  Thanks for listening-- only you can understand.

sunnybluesky

Calmer now.  Just decided to read all 423 posts from our lovely August group---it is helping me know how much we are all here for one another.  I just finished a bowl of peach ice cream and it feels good to just take a break from what we are "supposed to do" to stay healthy---I am feeling rebellious.  What a rollercoaster ride of emotions... 

poppy12

Hi Sunny sorry you are having to deal with this when they tell you one thing then something else,they rang andtold me I only needed hormone therapy for the mx then when I went to appointment for report they said the margins were close and  now have to have radiotherapy so it's a rollercoster ride, but you are right we shall get through this  know what you mean with taking a break from the healthy eating sometimes you just have to indulge,,good luck

Celia.x

LindaNZ

How truly frightening Brokendreams. I so hope the liver proves to be benign. And SunnyBlueSky - how awful for you too. The rollercoaster is an incredibly bumpy ride. And bad news like that sends the rollercoaster on a real plummet. We are indeed with you. A bowl of peach ice cream sounds an excellent way to head that rollercoaster upwards a little bit!

I had my oncology appointment tomorrow - where I'm expecting to hear how borderline for chemo I am and how I may have to make that hard decision that some of you have already made. I've been getting increasingly anxious over the 3 weeks that I've been waiting for this appointment - there were delays in the pathology coz of a lab strike and now this appointment has been postponed for another week!! Why - coz we had a significant earthquake yesterday. Even as I am typing my house is shaking - lots of aftershocks some 40 hours after the first big one!!! There's some damage in the hospital. Luckily for me my house was not damaged at all although some glassware didn't survive. Some of my friends' houses suffered structural damage. It would have been too much to have lost my breast, boyfriend and house all in the same month - two of those was quite enough!

lago

SunnyBlue Sky: They can only estimate the size of the tumor from an MRI/mammogram/ultra sound. The size can only really be know after they remove it. They told me my tumor could be 6cm or 7cm or smaller/bigger. I have read one woman was told 14cm and it only ended up 9cm. The denser your tissue the harder it is for them to judge.

You are still considered early stage… which has a very good prognosis. Don't let this upset you. The only thing the change in stage does is maybe make your treatment a little more aggressive. 

It seems like you have a lot of breast tissue but it might just be the expanders. I too have the BIMX with expanders. I'm thinking Wow, not that much smaller than I was before. If the surgeon says they got clear margins then that is excellent. If they felt the tumor was too close to the skin they would have removed more skin. I know my surgeon included the biopsy site as part of the skin he did NOT spare.

The path information you got so far is preliminary. You will get the complete path in 7 days. When they do the sentinel node dissection they do a preliminary path during surgery. This is because if they do find a major invastion they will then proceded to removed more nodes saving you from a future surgery. In this case we both were lucky to find nothing in the nodes for the sentinal biopsy (on the right side only for me. Still need to wait for the path on level I on left).

Overall I think the news you got was great. 1.6cm or 2.5cm is still considered a small tumor. Also glad to hear you sound as you are doing as well as me. I feel fantastic. Was out all afternoon yesterday.

BTW how did you people deal with washing and styling  your hair. I still can't shower till my drains are out (sponge bathing now).

Carrol2

sunnybluesky I agree with you this is all a crazy ride. My MRI showed 7cm and after a bilateral mastectomy they said only 1.2 cm which is good news but made me think i could have just gotten away with a lumpectomy. But there was no way to know that until after the surgery. After I lifted my jaw off the floor I understood. Sometimes I think we have come so far in treating this over the years but this kind of thing makes me realize how far we still have to go.

 The oncotype test is how they decide on chemo. They test the pathology to see how your cancer compares to other people who have the same cancer and what the chances of recurrence are. The score will tell you know if chemo will benefit you or not. I am getting my results on friday. I was suppsed to get them last friday but they did not come in yet. They are often delayed. 

LindaNZ lets stay in touch and compare results. 

lago I heard one woman say she went to an inexpensive salon and got her hair washed and styled. Seems like a good idea. You could go a few days before washing it again. Are you able to get your arms over your head to comb your hair?  I was able to shower with the drains. They are air tight. It is a little awkward with them hanging but I just took my time. Blow drying was not as hard as I thought. Like everything else you have to be patient with your self. Please be sure your doctor said you can't shower seems odd to me. Also most of the time they tell you to start doing things like your hair right away to get you flexible as soon as possible. I started the exercises as soon as I got home from the hospital. 

lago

I think if you have TE placed you have more restrictions. No I am not supposed to shower yet. I can comb my hair but I was instructed not to lift my arms above my shoulders… granted I should be using them so I don't get stiff either.

No lifting of objects over 8lbs with 2 hands (4lbs with one). I'm pretty sure they don't want me to do any major aerobics (like zumba) for a month because that kind of activity can move the expanders out of place. No sleeping on stomach or sides for quite some time either for the same reason.

I also think it's because my incisions are "taped" closed with steri strips only no staples or sutures. They don't want me to rip these apart. Once the drains are gone I will be able to shower. That will happen most likely on Wednesday based on the progress I see. (and of course it being a long holiday weekend it wouldn't happen before Tuesday anyway).

Yes I might see if my hair dresser can fit me in.  Good idea. My hair dryer is heavy so I know I'm not supposed to lift that. 

Halah

I live in a retirement community so luckily everything I need is here. I went to the salon here to get my hair washed. I am able to brush my hair but didn't try drying it. My friend and I are doing laundry tomorrow. She will add my jeans to her load and then she will help me with another load of my own. I will not be taking any pain meds tomorrow so I can listen to my body so that I don't overdo it.

Best wishes and hugs to all.

Paula1231

Hello Sunnybluesky!

Please do not worry!!  Your BS is one idiot telling you all that over the phone.  I am sooo sorry.  Probably he/she was trying to ease your mind.  Altho your tumor is 2.5 cm, your nodes are clinically negative.  This is really good news.  I used to be the director of a clinical lab, and normally we tell every one that results take a week or longer.  We under promise and overdeliver so it it very possible your pathology came back quickly.  You are also ER/PR positive and Her2 neg which means you are a good candidate for OncoDX.  We are considered "early stage".

OncoDX will tell you the "likelihood" that the cancer will return.  If your numbers are low, you may opt for tamoxophin only.  If you are indeterminate, you will have a choice, and if you are high the recommendation will be for chemo and hormone therapy.

I was very swollen and it looked like I had a lot of tissue, but now the swelling is gone and it is mostly beautiful skin, and the TE.  Your swelling will go down soon too.  Soon we will begin reconstruction together.  I wish I could hug you now and help to calm your fears.  Must say, the hospital sent me home with iron.  I have been taking it daily along with multi and vita D.  All have helped me emotionally and I am not as tired.  Please PM if you have any questions about the pathology.  I will help you intrepret.  I am also leaving you a link for cancer math.  It helped to ease my mind.  Hope it does the same for you.

Paula 

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

Paula1231

Lago,

My DH washed my hair in the kitchen sink, but it is very short.  I would opt for the salon if you are up to it.  You are completely right about the drains.  Be really gentle with them and you.  I am normally not a back sleeper, but I am following orders for the TE and Alloderm to set.  My last drain came out the 30th and a day later I had the sweetest longest shower I have ever had in my life.  Small pleasures..you will be there soon too.  Huggs and fast recovery!

Paula 

RobinLM

Hi everyone,

That's me just arived back home. I had my Op  tuesday at 1pm. BMx with immediate reconstruction with implants.My PS managed to get 300ccs /breast, but it feels like I've an elephant sitting on my chest. Maintaining any sort of reasonable posture and breathing deeply is tricky.

I had 2 drains/breast and the two shallow ones were removed thurs and friday. The deep were taken out yesterday and about 5 hours ago. I was probably lucky and didn't suffer too much with them. My PS actually 'skinned' and lifted my midriff, recreating a mammary fold (you can see the 'tacking') and used the fat/skin from there to bolster the bottom half of my old breast skin. At the moment, they look pretty awful, the implants are up at my collar bone, they are swollen and bruised, but my overwhelming feeling is one of relief. Waiting is just awful.... and we all seem to have to do an awful lot of it in this game.

I have a full range of movement in both arms, although struggled even to push the toilet flush button for a couple days ... much improved now. Feeling totally exhausted. My sister is up to help me and my other half get through the next week.

I'm so sorry to read that a number of girls are having a horrible time of things. I haven't had the chance to read thoroughly all the posts I've missed but I'm sending all of you my very best positive vibes for good results.

LOL

Robinxx

RobinLM

Forgot to say, managed to shower myself and wash my hair from thursday, couldn't manage the hairdryer though lago. Didn't get the 'bum fat' lipo either ...... Shame!

lago

Robin, glad to hear you're doing so well. Boy your drains came out quickly. They really aren't too bad but hard to dress around. Also I feel I'm planning my life around when they should be drained. Since it is a holiday weekend in the US the earliest I could get them removed would be Tuesday. No one works on labor day (Monday Sept. 6th). I also had lyph nodes removed ( level I on left and 3 sentinel on right) so my drains needed to be around a bit longer.

Yes I made the hair appointment. There is no way I'm letting my husband style my hair. Not sure I want to let my sister (also named Robin) messing around with it either. Can't wait for shower day!

Pawprint

Sunnybluesky...Sorry you got news thru voice mail. It is a roller-coaster ride. I think Peach ice cream is in order for all of us RobinLM..you're doing great. I felt like an elephant was sitting on my chest too. That tacking of midriff skin sounds interesting, but must feel like a tight belt around you right now till you heal. I agree the waiting is the worse.LindaNZ...I hope those aftershocks end soon. Earthquakes are so scary. I live in California and we have our share of earthquakes too. Glad your house had no damage.

The doctor gave me effexor to deal with hot flashes from Arimidex meds. So far the effexor side effects are worse than Arimidex. I feel nauseated and dizzy. Hope these side effects end soon.  Also, these Tissue Expanders feel like hard bricks. If I turn too fast and bump into someone I'll probably knock them out flat. GHEEZ...didn't know we'd have lethal weapons inside of us

LindaNZ

Thanks Brokendreams. That made me laugh (the lethal weapons!)

Those of you with implants - have you all been advised to sleep on your backs?? I had to sleep on my back for the first two weeks coz of the drains but once it came out I was delighted to be able to sleep on my side. Maybe I shouldn't?!

Sounds like different surgeons have different preferenes even within one hospital. I was lucky - mine likes waterproof dressings so I was able to have a shower immediately (apart from it taking a day for my blood pressure to increase to a point where I could get up!). The drain just sat on the shower floor.

I'm starting to see the effects of passing time - the new boob is starting to look vaguely like the other one. Got a long way to go yet - but for the first time I can see that there is actually some resemblance!! So girls be patient. Your chest will look better in time.

Some big aftershocks still going on. I was going to work today but there's no work to go to!

lago

2 questions:

1. My upper arms hurt. I think they are a bit swollen. My right arm (sentinel side where they had the IV) was swollen a for a while in the lower part including my hand and around the site where the IV was. No one seems to be alarmed by this. My upper arms feel heavy. Should I be worried?

 2. I was told no showering… sponge bathe only (till drains are removed). I was also under the impression that I was not to remove the dressing/bra when I washed. Need to keep the area around drains dry. Anyone else? I feel like I have a million instruction sheets, one from the hospital, one from BS, one from PS and the one from the PS's residents that state I only have a right tissue expander (wrong… I have right and left. Wonder if the person who got my directions s freaking out that they were supposed to get a MX not a BMX and has directions for BMX with 2 expanders ;D). 

Anyway did you guys remove your bandages to wash before you post surgical visit with your physician?

lago

Sunnybluesky… I'll get my path report from the nurse. My BS is on vacations again this week. He did say I could talk with his partner if I had questions before he got back.

RobinLM

Hi Lago

I have the steristrips on  the wounds, and I had wide surgical tape over the top of that. I was showered the day after my Op. On day 2, they took out the shallow left drain and removed the wide tape, I showered myself that day. All of my drains are out now but I still have the steristrips which will be removed at the hospital on thursday. I wasn't made to wear any sort of bra until today.I'm sure that you would have swelling around your underarms after that operation so try not to worry. x

I've noticed before that the USA  and UK have very different protocols.......

Halah

I have a problem with a drain if anyone can help me.

One of the tubes came out but not completely. This emptied on my clothing, all over the place. Now the tube appears clear. I pushed the tubing back in. Will it be okay now? Have any of y'all ever run into this and was it a big deal? It was held in place with some thread but the thread is now gone. And it is a holiday weekend!!

Please advise if you can. I have a call into the surgeon on call.

lago

Winterstorm
from what I hear the drains are pretty long. I'm not sure about pushing it back in but that could be ok. the only thing I would worry about is infection… but I assume they still have you on antibiotics so you'll probably be fine. The surgeon/nurse who calls you back will be able tell you for sure. Don't panic though. I think you're ok. They'll have you come in if it's an issue but I doubt life threatening.

thanks Robin but I'm still with drains so I know things are different. The swelling is my entire upper arms and some near one of the elbows. I'm trying not to be concerned but I feel this should be going away by now.

Halah

Hi lago, I'm not worried about this being life threatening, just worried about seromas and the build up of fluids and the discomfort and inconvenience. That's all! The surgeon on call had me completely remove the drain and said to call my surgeon on Tuesday. What a time for this to happen, on a long weekend like this! And I hope it doesn't make a mess everywhere as I assume it will continue to drain everywhere. Glad I bought those incontinence pads for the bed. Looks like I'll need them after all.

Nope, not on any antibiotics.

lago

No antibiotics… Oh right no recon. If you had TE or implants you'd be at higher risk for infection. You'll be fine. I know my drains are really slowing down. Do you still have lots of fluid? I bet you'll be fine and they would have taken them out tomorrow anyway.

Pawprint

Lago...I was told no showering until drains are removed. Sponge bath but do not get dressing wet. Wear compression bra 24/7. Sleep on back, preferably recliner. Also my arms were so sore and swollen down to fingers so i drank more water and ate nothing salty and i used ice packs. Swelling came and went for a few days. The only swelling now is in my breast area. At my post surgery visit the doctor PS removed my surgical dressing and two of the 4 drains and told me at that time again no showering till drains are out but change bandages twice a day and use antibiotic cream around drain sites. When the other two drains came out I showered and it felt great. It does seem we all get different orders from our different doctors. I hope this helps you.

Winterstorm...that sounds horrible. I think you're probably ok but would check with doc about it, It sounds like the thread that fell out was your stitches around your drain tubing. I'd worry about infection but agree with lago that since you are still on antibiotics you might be okay. keep us posted. 

Pawprint

Lago...I was told no showering until drains are removed. Sponge bath but do not get dressing wet. Wear compression bra 24/7. Sleep on back, preferrablly recliner. Also my arms were so sore and swollen down to fingers so i drank more water and ate nothing salty and i used ice packs. Swelling came and went for a few days. The only swelling now is in my breast area. At my post surgery visit the doctor PS removed my surgical dressing and two of the 4 drains and told me at that time again no showering till drains are out but change bandages twice a day and use antibiotic cream around drain sites. When the other two drains came out I showered and it felt great. It does seem we all get different orders from our different doctors. I hope this helps you.

Winterstorm...that sounds horrible. I think you're probably ok but would check with doc about it, It sounds like the thread that fell out was your stiches around your drain tubing. I'd worry about infection but agree with lago that since you are still on antibiotics you might be okay. keep us posted. 

katp

I was told when I was in the hospital (May2010) that drains are mostly for cosmetic reasons.  They remove the natural fluids your body produces to help your body heal and then the doctors give you antibiotics to help you heal!!!   The nurse (a man) said if the drains stopped draining or came out not to worry too much about it, you will just have more swelling and bruising, but your body will take care of it. My drains did not have any problems however, but I am glad he gave me that info in case something had happened.

Halah

I didn't know that katp. Brokendreams, I'm not on any antibiotics at the moment.

Not sure how much fluid I should be collecting. It seemed to have slowed down today all of the sudden, then the leakage of #3 all over me. But yesterday (9/4), it was as follows: #1 65cc, #2 69cc, #3 90cc, #4 50cc

The most it was, was on 9/2: #1 78cc, #2 80, #3 108, #4 109

What should I expect? What should it be before the drains are removed?

Marly

My drain did the same thing, Mindy. I pushed it back in and it went S-L-U-R-P! I taped it in place, and then I started getting more fluid than I had before. When I saw the BS last Thursday he said sometimes there comes a point where it's better if the drain is out...that it causes more fluid buildup than there would otherwise be.  It might be time to have the thing taken out. katp is right...the fluid will accumulate a little, but your body's meant to absorb the stuff. It just takes a while.

My surgery was 8/4 and I have a little bit of fluid that I can push around from under my arm and watch it go BLOOP over to the center of my chest, but it's small and it isn't painful and it's just no big deal. And it's getting less and less.