August 2010 Mastectomy

Pawprint

Hi WinterStorm, after surgery you will need help so please get that lined up beforehand. Getting up and down and out of chairs especially recliners, also its hard to reach a lot of things. Wash garments by hand only but you won't be able to wring them out yet have someone do this. Have lots of pillows and someone to give you ice packs. I hope its easier with no recon for you to recover quicker. Sending my love and lots of gentle hugs.

Pawprint

lots of good wishes and hugs sent to Hunter, WinterStorm, Robin ,Lago, Sunnybluesky....we will be thinking of you girls as you prepare for your surgery. We are all very brave.

Carlatap

Tara: I have gone through cancer twice, and tested positive for BRCA2, and had a triple negative tumor-grade 3, so this surgery was to hopefully prevent any new cancer from forming. I've gone through a lumpectcomy with radiation on my rt breast in 02, and then another lumpectomy followed by chemo, and radiation on the left side in 09. I wasn't tested for BRCA gene until I was half way through radiation.My prayer is that I do not get a recurrence  from the triple negative tumor b/c mastectomy and reconstruction does not promise this. At least I know that I have done what I can do to fight the battle!!! 

The chemo is not fun, but is do-able. I just tried to take one day at a time and I drank a ton of water to get that chemo through me as soon as possible. Its just a strange feeling to be taking a med to help you heal but  that makes you feel sick in the process.When I lost my hair I chose to wear different head caps with pretty long and colorful scarves around them. I received a lot of compliments. I also went a little heavier on the makeup so I wouldn't appear as weak and pale. And I prayed a lot. God carried my through -never let me go. If you have anymore questions, please feel free to ask.

"Be strong and courageous"

Nbb1032

Hi Everyone!

Finally got the drains out and everyone is right  - it feels so much better and you feel more normal again.  I am having a lot of nerve pain - very sensitive on the undersides of my arms and around my back.  Anyone else having this pain?  It seems to be worse in the afternoon.  Also, because I was big breasted the PS saved a lot of skin and seems to have tucked it under that same arm!  I think all of the TE people will agree it is such a strange feeling - very hard to describe.

Carla - Try not to do so much - your surgery was a very complex one and it will take you longer to recover.  

Cheri - Sorry about your drain "slipping" out.  I can't even imagine.  Congrats on your clear nodes.

Sunny - How is your dog doing?  I hope ok.  Maybe it will distract you a little from your upcoming surgery.

Anne- I am waiting for my oncotype score too.  Yours should be lower than mine. My PR was neg and my ER only 15%.   

Tara - So you did decide on Chemo.  Was your oncotype DX score high?  Congrats on getting the drains out.

Hunter 15 - Did I put you down for the incorrect surgery date?  

Broken - Wow!  They put you on Arimidex already.  I hope you don't have any side effects while you are trying to recover.    The 6/9 sounds like  your "proliferation rate" (some path reports call it something else) Mine was an 8/9 which means it multiplies very quickly.  I think you just misunderstood since he told you over the phone. 

Smurfie - Congrats on your drains coming out! I was surprised they were going to originally fill you that day.  The PS at Hopkins makes you wait two weeks before the first fill.    Needless to say I made my next two appointments!  Now I am anxious to get these pieces of plastic out of my chest!

taranebraska

Thanks Carla for the feedback.  I hate wearing makeup, but I will.  I've been reading lots of the boards and getting a little more comfortable.  I talked with my ONC's nurse and she said that the ONC only orders the Oncotype Dx on the tough to call cases - to not waste money, she said.  She was going to ask but she thought the HER2+ status and the two foci of tumors was enough to tip the scales.  She is supposed to get back to me on it.

Drains - so the drains are gone, but now I can see the puddle on my chest!  Can anyone else?  My right arm that the nodes went out of hurts a lot more too, doing everything with my left arm that feels 1000% better.

Mindy - do you have a couple friends in your community who could pull some shifts with you?  Any relatives who could come stay for a week or two?  You'll need a small group of folks who would be more than willing to do the shopping for you, the pillow fluffing, the dish cleaning, even coaching through tough bowel movements!  With no recon you might be surprised that you're still able to get things out of the fridge and move things around a bit, but without any reaching.  The most limiting thing for me is trying to wash anything in the sink ... have to let others do that, as well as any reaching for dishes/glasses/food in the cupboards.  I do have one of those reaching tools from the hardware store my DH picks up trash with, and have used it when I needed to get something down - that wasn't breakable of course.  The jar of honey landed a tad hard... and yes, I washed the tool.

Hope777

Lago- thats funny, I hated those dam things,,, I hid them in a Camera Bag, haha,, but they off now!   woowoo!

Hope777

We should be called the Mastectomy Diva's!

lago

Hunter: Good luck tomorrow

WinterStorm Both PS I spoke with at the start said that those of us that chose reconstruction afterwords will hurt more. One actually said "I'm going to be the one making you hurt because I am putting in expanders, foreign material into you body". It does sound to me that recovery is a lot easier if you are not doing and reconstruction right away. I hear immediate reconstruction requires even more recovery time since you need the donor site to heal too.

My BS claimed I wouldn't need any help. As much as I trust my BS I started to think that BS might not stand for Breast Surgeon but Bull Sh*! My sister is staying for 2 weeks. BMX with expanders, level 1 lymph nodes on one side and sentinel node on the other. I doubt I will be able to even open the fridge… and probably shouldn't. I know for sure I won't even be able to reach the microwave for weeks.

WinterStorm: You might be OK with all the food support. It sounds like you should consider having someone do your laundry for a week or two. There are lifting restrictions. You should check with your doctor/nurse again. Have a specific list of things you want to do.

Brokendream: I would be running into similar situations as you. I'm lucky that my brother-in-law is a physician at the hospital I'm being treated at. I just call him up and have him look it up the results of my tests on the hospital computer.

The last test I got the results on a Thursday evening from him. If I had waited for my PS it would have been the following Monday. It stinks that this happens but I know these doctors are so over worked. It's really part of the health care problem right  now that the doctors aren't able to give more personal attention even though they want to. My recommendation is to ask when the results will be available either at test time or before you take the test. Then call when they say they will be ready.

FYI I am visiting my parents in Cape Cod eating seafood. Just trying to enjoy my last 11 days before treatment!

poppy12

Hello everyone got home last night with just 1 drain the nurse is calling this morning to empty it hope she might be able to take it out doesnt look like there is much in it, have been very lucky I have not had hardly any pain possible because I have not had any rec, it as not been as bad as I expected so am feeling quite good at the moment, lots of love and  good luck to all those who are still waiting for their surgery you will get through it and out the other side, going to start my exercises now will have a good read of the posts later,

Celia.x

lago

Celia, You sound like you are doing great. So glad you are feeling good.

micheleboots

Hello there Aug. ladies.  Just popping in to say hello.

I was where you all are this time last year.  I had my Mastectomy Aug 6, 2009.  It is hard to believe it has been a year since I had it. Looking back this past year has flown by so fast. Since then I have had both chemo and radiation.  I am still waiting for reconstruction, but I am not in a huge rush for more surgeries.  I found that this site was the best thing for gaining knowledge, venting and making wonderful friends.

Be sure to do the exercises. They help a lot.  I did them several times a day and my doc was amazed that I had such great movement. They get easier every day.

Halah

I can get them to do laundry for me here (I live in a retirement community). I have only lived here since Apr 3rd and have a small circle of friends but many are disabled. And there are others that I think will help. People seem to like me here. I want to make a list of people who would be willing to help me but need to determine what exactly I will need. I want to be as independent as possible.

I see Tara and Anne had the same surgery as I will have, and it is good to compare them to me. I am going around trying things out with my elbows to my side.

1. I can reach the light switches, everything on the bathroom counter and most of the kitchen counter.
2. I can pull out the coffee maker and microwave, and get in/out of the sinks.
3. The frig is smaller than the typical size and can get in and out of the freezer okay.
4. I will place stuff on the coffee table and other tables so that I can reach them.
5. I have that reacher/grabber/picker upper thingie waiste level and doint want to drop it!

I bought these absorbant pads to place on the bed in case my drains leak. Is that enough? I don't want to dirty up the mattress.

smurfiep

Hello all,

I'm out 2.5 weeks from surgery. There are still good days and bad days. I may have mentionned that my left drain was pulled after the first week post-surgery. Well I have a build up of fluid on that side and now there are two pinkish areas on that side (the CA side) which are worrying me (I have TEs). I was dog tired yesterday. Actually slept about 3-4 hours during the day. However, I have not been running a fever and this morning I feel pretty good (I know...day's not over yet).  I just pray I don't have an infection or that my body will reject the expander on the left. Not sure whether to call my PS or not. I have an appt with him on Monday anyway. My sister is a nurse and I am going to have her look at it later today and get her opinion.

On another topic, I was having litle anxiety attacks yesterday...probably because I was worrying about the potential for infection. Between the time I was diagnosed and my surgery, I lost about 20 pounds (I was very heavy prior to my diagnosis)...I was so stressed out. So, aside from this major surgery where I lost my breasts, I am now 25 pounds lighter in a very short time. I am living in a very different body...and my brain is finally trying to reconcile it all. I'm not sad, it's just a different reality and I am now realizing it will take some time to get used to it all.  I actually still have 30-40 lbs to lose which I plan to do slowly rather than the abrupt weight change after my diagnosis.

Nancy - about the nerve pain...like I said, some days are better than others. I have a pins and needles feeling right below my collar bone and upper chest area and am very sensitive to touch behind both arms. This comes and goes but tends to get worse if I am getting tired. My BS says that most of this pain/sensation will be gone after 6 months. I have read all the posts about Post Mastectomy Pain Syndrome but refuse to go there. I had pelvic surgery 10 years ago to remove an ovary.. I remember having some pain in my scar site for a long time (probably 6-8 months and esp if I was run down or tired) and this same pins and needle feelings. So I have faith that there is an end to the discomfort.

I want to tell you all how comforting it is to hear your stories and share this experience with you. All you girls are in my prayers every day and I look forward to your posts on your progress. We all need patience and faith that things will get better. 

Hugs to all.

Smurfie (ie Maria) 

Anne068

Paula, Poppy, and Hunter!!

 I just wanted you to know that I'm thinking of you and sending happy, healthy, healing, painfree thoughts your way!!!

((((Hugs))))

Anne068

Micheleboots... Thanks for popping in with the words of encouragement! It's always so nice to hear from someone who's BTDT, and allows us to see there is a light at the end of the tunnel!

Thanks so much!

Pawprint

Smurfie,i really pray you have no infection. I think a call in to doc is always good. he can always help reassure or confirm. do you still take antibiotics? or anti-inflammatory? if not the doc could get you on some over the weekend. glad you see doc Monday. this is a crazy hard experience isn't it? glad we have our group here. i still have pins and needles pain, also burning sensations. i still have 2 drains in. i think most pain come from TE on right side and it sits higher than the TE on my left. i see doc wed next week and hope he wont have to go back in to readjust the position of right TE. Having weakness from Arimidex on top of it all. one day a year from now we can pop back in like micheheboots and look back at how far we've come.

Poppy, welcome back. nice to be on this side of surgery isn't it? you are doing amazing and i send good healing energy your way. hope recovery continues to be pain free.

Nbb, thanks for info on my path report. Arimidex was suppose to be started right after surgery per my onc, but i waited almost a week because of possible side effects. so far weakness and dry mouth are most noticeable.

Winterstorm, you are doing a great job getting prepared for post surgery healing. i am independent to, so i understand where you are coming from. i think its good to have at least one or two people to help you, just in case....and people do want to help i'm finding out.

 Lago, have fun in Cape Cod. it sounds perfect to relax before surgery.

Pain free healing to all of us.

DvinMsS

Had a MX on the right side, on the 4th. Looking for help in knowing how fast to get going. Your family/friends have a hard time seeing me down, so I feel pressure to get up. My pain says go slower.

Anne068

DvinMsS.  Dont let people pressure you!!!  Listen to your body! My BS told me "if it hurts, don't do it". I've been told it takes 6-8 weeks before  your 100%,  and several mos b4 my non-breasts(? I don't know what to call them.. "the two huge gashes across me where my chest used to be?") are flat and smooth and completely healed. Right now they are swollen, filled with fluid, and puckered at the incision/cuts.. whatever.

 So, don't rush into anything!

 ((hugs))

lago

I was also told 6-8 weeks by both my BS and PS. Pushing yourself too early can lead to infection. Ask your doctor/nurse first. They are the best sources to let you know what you should be doing in your specific case. We all don't want to "bug" these people but to be honest its best to be doing the right thing. They feel the same.

smurfiep

Brokendreams - Thanks for your words of encouragement. I did end up calling my PS and he has called in a different antibiotic which I started this afternoon - I was taking Keflex 4 times a day until last Wed. I love my PS, he returns his patient emergency calls himself rather than have his partners cover for him. Funny story...he asked me to take a Sharpie pen and mark the areas of redness and take a picture and then email to him. (He is 2.5 hours from my home). I did that and he called me back right away and said "It doesn't look too bad but any time there's the possibility of infection with expanders I don't like to mess around". So I am feeling better (emotionally). Also, one area is not as red and warm as it was yesterday so perhaps all the rest I got yesterday was my immune system fighting back. 

DvinMsS - Nancy and I share a MX date with you. I totally agree with Anne - take things at your own pace. If you are still in pain, take it slow. Think about it, it's only been 17 days since we had MAJOR surgery. I felt the same way, that I needed to get up and try to get back into the race as early as possible. I now feel like I need to listen to my body, if you feel tired, lay down and take a nap or at minimum rest. Tell people you don't want visitors if you feel obligated to "entertain". Keep accepting (and asking) for help with meals etc. Listen to your body and keep taking pain med if you need. I hope you are continuing to check in with your BS as well if you are not feeling well or too much pain. You didn't mention if your drains are out but my own pain got so much better when they did.

Smurfie 

 

Marly

Mindy, if your drains leak, I think it'll be only a little, not more than would be absorbed by some gauze pads. But absorbent pads are always good, just for peace of mind. Sounds as if you are well-prepared!

Anne068, I wish I had stopped in here to read your "if it hurts, don't do it" before I went back to work!  The first day back I had to retrieve two pretty heavy bankers boxes and carry them thirty feet. It hurt...I thought maybe it was a good thing...like exercise, getting back in shape. Not babying myself, in other words. Now I wonder if that's why the seroma developed...but maybe it would have anyway. 

micheleboots

Dvns, listen to your pain.  It is your body warning you to take it easy.

Carrol2

Hello I had a bilateral mastectomy August 9th so it's been 12 days now. I did not get immediate reconstruction but I intend to get implants asap. The surgeon left a lot of skin so it almost looks like I have little flat boobs with cleavage lol, I was a DD. I hear a lot and it is true it is not as bad as I thought. The worse part for me was not knowing. I was full of anxiety when I woke up that I was afraid to move at all. But once I did I started to feel better because then I saw I was going to be ok. My drains came out tow days ago and yes it does feel much better without them. I have to wear a compression bandage it looks like a tube top. That is pretty uncomfortable but they stress it is important. My doctor is saying it's ok to sleep without it now and in 5 days I can take it off for good. I only take the pain meds to help me sleep because it makes me constipated. Eating prunes helps that though I met with the oncologist this week. They said the MRI showed a 7cm tumor but the pathology only showed 1.2 cm. Sometiems I wodner why I did all this. They say chemo would decrease my risk of recurrence by 9% according to the computer model. ow they are doing the Oncotype test on my pathology which will be the deciding factor so I find out in two weeks. I am glad I found a place to share expereineces. 

Halah

Hi Carrol, I'm so glad you had that "everything is going to be okay" feeling. And the news about the tumor. Terrific! Sorry you're having to look at chemo.

lago

Carol2 that's wonderful news about the tumor being so small. I don't understand how the MRI (and I assume mammogram/ultra sound) can show a 7cm tumor and it's only 1.2cm.

Can't wait to hear from Hunter. I bet she's doing great.

Carrol2

I know I was surprised as hell. After the mamo/ultra/biopsy I went to the surgeon twice and he was saying lumpectomy. But then he said the radiologist wanted to do an MRI. Then they said from that view they could see a 7cm area and everything changed. I was devastated. They say there is no way to have known it was so small before surgery. I asked the second opinion surgeon if I should redo the MRI and he said he did not think the results would have changed. I felt like it was not that big myself even. But it is done now and I can cross  Mastectomy off the list of things I am afraid I may need some day.

lago

Carrol: I know you feel cheated out of a  lumpectomy but this is really good news. Furthermore you could have done a lumpectomy then have a reoccurrance and you'd have to go back for a MX anyway. With a grade 3 I think the MX might of been the thing to do anyway.

Carole66

I wonder if anyone else has experienced this. Prior to my BMX on Aug 12th I had really soft skin all over especially with the hair loss all over my body, it was softer than usual. Now ever since I have had surgery I have noticed that my skin is rougher than ever. Like chicken skin. I have no idea where this came from and what caused it. Anyone have any answers?

lago

Carole I assume you were/are taking drugs after surgery. I don't remember if you had chemo first but all these things can change your "normal" but may not be permanent.

Carole66

I finished chemo on July 8th and really wasn't on anything after that. After surgery I forget what was the first pain med I was on. then went to morphine, then percocet and a muscle relaxer. I started noticing it when I was still in the hospital so it was either surgery or one of those meds.