June 2010 Mastectomy

Lizzymack, I also had various cancer throughout the breast.  Knew about the IDC but there was tons of DCIS all around and "extensive cancerization of the lobules".  Didn't know cancerization was a word, but that's what the path report said.  Really hit home that I did the right thing with the mastectomy. 

Hi ladies--just catching up on the posts.  The drain conversation is timely for me...

I saw my PS today and asked her if I could walk slowly on the treadmill.  She told me that more activity = more fluid in the drain! I had no idea.  I have not been doing much of anything--just walking around my house and sitting on the couch. I have one drain and it's been at 29-32ccs the last 3 days. I had no nodes removed.

She will not take it out until it is between 15-20cc for two days.  I am hoping I will get there by Friday, but looks like I may be traveling with this darn thing!  I plan to be a couch potato for the next two days! 

Take care everyone....hugs and complete healing to all!

StCards- you had 2 nodes removed and are worried about lymphedema?  Perhaps I misunderstood how many you had removed.   I had 18 removed and I saw roughly 14 docto iors (including my docs and interns etc...) and I asked nearly every one of them about lymphedema.  I was at Yale and they all said A) just b/c you had nodes removed you are not relegated to getting lymphedema as it is not an automatic result and one of the nurse's told me her mom had full node dissection under both arms some 10 years ago and never got it.  I think we are petrified of something that is a bit on the rare side.   Don't scare yourself.
Liz

Really sorry I've been out of touch lately, but having mom and little sister over is taking most of our time. Needless to say the reason of their trip all the way from Mexico to Norway is because they wanna help us around and they defo are doing so, but on the other hand moms will always be moms and at some times I feel a bit hands tied as they want me to stay in bed lots and they don't let me do my normal routine... anyways!

Might not been posting but I DO READ all your comments and I'm happy to read some of you are already out and about continuing your lifes. You go girls!!!
But I'm sorry to hear some of you are having trouble with the drains and the whole recovery process. Sending super healing vibes your way and as I can read from others, is just matter of time... easy to say, hard to believe. But hang on! Stay confidents that each body is different and have a different healing process.

In my case, the pain in the back that some of you mention is something I've been wondering about too. I do have pain in my back especially at night, or after spending some hours out and wearing the bra and the protesis. The pain goes from my shoulder to my mid back in the muscle and sometimes my neck too. I hardly have pain on the wound itself, but it's more on my armpit and back... does anyone have the same?

Talking about the everyday, I feel ok, but can't say the same about going out wearing the protesis (is a cotton one filled with kinda foam thingy, got it for free after the surgery is Amoena brand) . I need to say this out and loud: I HATE IT, I HATE IT!! I'm sorry if I sound stubborn and childish but the feeling is just... weird, plus I always seem to have trouble trying to set it in place and I get the impression EVERYONE can notice it, tho mom, sis and hubby reassure me is almost impossible (when wearing tees). Perhaps is just too early, perhaps I need more time to get used to it, perhaps.. perhaps.. perhaps! *sigh*

Next appointment with surgeon is on the 19th ( a bit too far but everyone goes on summer holidays including my surgeon) so I have to wait. Tho doctor is confident that pathology exams won't reveal any different news for us, I hope so.

In the meantime, pregnancy is going great! With this lovely sunny weather I have funny cravings for more heavy food: burgers it is! Baby must be a boy or a very hungry girl

Okie, doki... long post it seems... but hope you all have a nice day and enjoy some sun (by the window or in a walk outside)

Hugs,
Joy

stcardsfan- My Dr told me to lay low but to try at various parts of the day to raise both arms over my head and hold for about 2 seconds.  He said don't pull or stretch just make an effort so my arms will remember they can go up there.  So thats what I do.  Sometimes I can touch hands sometimes I can't.  Now though, because of your post, I am going to try shaking my a$$ more when I walk! LOL!!! 

I think it's funny that alot of us have been positive about our diagnosis etc and that we are all trying to be healthier, continue or start fitness.  I lost 12 pounds from diagnosis to surgery date by eating healthier and walking more.  Each breast removed weighed 2 1/2 pounds so thats another 5!  I decided that when this is all said and done I want anyone who hasn't seen me in awhile to say "damn!  She looks good, did I hear she had cancer?  No way, she looks fantastic!"

Joy- So glad you are doing well and checked in with us.  I hope you are able to focus on yourself and your baby more now and give cancer the back seat- or the trunk to ride in for now.  Stay strong!  EAT EAT EAT!!!!  It was one of my favorite parts of pregnancy, food tastes so good!

I have my fingers crossed that I will get my path report back today. I asked about being concerned about lymphedema- they took 3 nodes and my Dr's don't  seem to be concerned at all.  Stcardsfan let us know what you find out.  Maybe if we all ask our Dr's and share what they say it will help us as well?

QUICK NOTE LADIES- My path report came back clean!  no other cancer was found, the cancer I had was non invasive, no surprises and my 3 nodes were clean.  Which means  I AM CANCER FREE!!!!!!

I am doing a happy dance!!!!!!!  Take that cancer!  I kicked your ass!!!!!

Laurie08:   SEE!!!!!  You probably worried yourself sick, and look at the awesome results!!  I knew you'd be good to go, girl!!  I'm gonna do a happy dance (with a side of Bailey's) just for you!

Hello June Ladies!

Just got caught up on posts, I left my hometown (Portland) on June 2nd, and have not had internet service.  

Laurie!  CONGRATS on your clean path report!!  I am also doing a happy dance for you - literally!  My cats are looking at me like I am crazy!  Plus, I am very motivated by your weight loss.  I have gained about 15 pounds since my Jan. diagnosis.  Primarily due to steroids in the chemo, plus I (was) a runner, and now do walks.  

Liz - as I caught up on the posts, by the time I got to your updates that you have been weight lifting, I literally almost fell off my chair!  I love the way you push the envelope and I also have no idea how you are doing that?!  I still can't really reach more than a couple inches above my shoulders and can pick up my cat who weighs about 8 pounds...  Do you have your drains out, yet?

Melissa - I think we are both 1955 "babies"?  We do share a lot in common.  I have no children, also had NEVER spent a night in the hospital.  I ended up spending only one night in hospital, but was SO comforted by the nurses that I would have gladly spent a 2nd night.  After surgery, the time literally zoomed by - I was almost in a little dream like state.  The anticipation of surgery is the hardest part.  As everyone says - it is SO much easier than anticipated.  And once over - you feel SUCH relief!!  I KNOW you will do great from your attitude and "spunk".

Joystars - Happy Belated birthday to our Norweigian friend!  I think I will have "chemo" brain for the next year, as first I thought you meant you were celebrating your 30th wedding anniversary!  Your posts are SO motivating!  Yes - let's all celebrate LIFE with you!!

 Misty - how is my fellow 6/22 friend?  Do you have your drains out yet?  I can tell from your posts that you are doing great!  So happy!

 I am 15 days post surgery.  I got my two drains out 10 days post surgery.  My doc took them out a little "early".  My left met the criteria, but my right was still above.  She weighed the pros/cons of waiting over the week-end, and took them out with the strong advice to NOT exercise for 3 days and to take it easy.  So far, all is great!  I was really worried about possible fluid build-up - but none!

 I have been off pain pills for 5 days.  I do have "pain" pretty much 24/7 from the expanders.  Not really pain, but a constant almost feeling like a vice-grip around my chest.  I am getting used to the feeling - but hope this is "normal".  Wondering if it will be like this for the next 3 months?!

I don't think I have seen this question, but now I am off pain pills I figure it's "ok" to have a little glass of wine once in awhile with dinner?  I noticed Laurie mentioned "longing" for a margarita, and wondered if you are all avoiding alcohol?  

Laurie  congrats and dancing with you!  It's a happy day.   

Joystars  so glad your pregnancy is bringing you so much happiness especially at this time.  What a rough road for you, but you are making it!  My "baby girls" are 19 and 21 and I still recall all the excitement of pregnancy and infancy.  You are not childish at all about the prosthesis--this is such a huge change and so difficult to get accustomed to.  Your feelings are so normal and I am glad that we all have this place to come and share our deepest feelings.  

Joy, I have back pain, too.  In my case it is due to the position in which I sleep at night.  I am so aware of the drain and I don't want to roll over on it and kink it.  So I sleep very tensed and wake up with pain in the middle of my back and under my arms.  I told the PS about it and she suggested I take 800mg of Ibuprofen.  That did help last night.  I don't know what you would be allowed to take, if anything...but it seems possible that your pains are from the change in your body, wearing the prosthesis.  I don't think these aches are anything to be alarmed about.   Talk to your doc about it.  

lizzymack  I'm so glad your GP did not let you go until you investigated fully.   You are so right about the early screening for women.  My daughters will have to do this now--they have breast and ovarian cancer from my side.  My youngest daughter has had two large fibroadenomas removed in the past two years.  Her breast surgeon says there is no connection between these and cancer but she will need early screening due to my BC and my mom's OC.   so glad your GP did not let you go until you investigated fully.  

I know docs say there is no connection between fibroadenomas and BC, but I had two of these benign lumps when I was 18 and again at 24.  Maybe it's just a coincidence.  

I have wanted so much to get out and do some sort of exercise....I am an avid hiker and our hikes are never less than 5 miles.  I am accustomed to working out at least 4 days a week.  I can truly say that I don't have the energy for anything like that now.  One day I will and I look forward to getting out there again!! Right now, just going up the stairs elevates my heart rate.   I am determined to get this DRAIN out asap.  They seem stuck at 28 and BS wants it down to 20 or less.  I just don't want to have to attend a week long workshop with this thing in me!  I am hoping to be able to get it out on Friday...but if not, I will deal with it.

Ladies....sending out lots of loving thoughts to all of  you on this forum.  You have helped me so much by "listening" and encouragement and caring.  I know that when I get upset or discouraged that my sisters in cyberspace have been there and they understand.  That's a huge help.  Remember, your body is a miracle--with the help of our doctors we have hit this disease hard and now our bodies are healing.  

Hello my wonderful BC sisters!

I have been lurking about on this site for weeks, but have not posted. I feel so close to all of you and have laughed and cried with all of our worries and victories. I want to thank each and every one of you for sharing your experiences. I had a DMX without reconstruction on 06/16. You were the ones who gave me the courage to walk into that hospital and face this surgery that had me scared to death. I think because of the education and courage you all gave me, everything went very well and I have had an amazingly easy recovery. My pathology report was the best news possible. My cancer is gone and my lymph node was clear in my left breast. I had some "pre-cancerous cells in my right breast, which confirmed my decision to have both breasts removed and be done with it. I chose to have a delayed reconstruction because I had a sense that my surgeon thought that was the best way. She mentioned the possibility of post-op radiation or infection as possible complications. The plastic surgeon I want to see is booked until September, so it will probably be October before I can have the TE process started. It is hard to be patient but I know I will get there. I meet with the oncologist tomorrow, but the BS doesn't think she will feel I need to have chemo or even Tamoxifen because I had the BMX.

That brings me to the reason I am posting today. Joystars mentioned the breast form. I too received the horrible "pillow" form with my post-op camisole. I was not comfortable with that thing from the beginning. In reading other threads, I read a lot of posts on the reconstruction alternative site. The women there were talking about these wonderful "beany boobies". That sounded great to me. There are several sites that sell them. The least expensive ones are available at tlcdirect.org. This is a site affiliated with the American Cancer Society. The forms are $40 apiece, which is significantly less than other ones I found. I ordered a set the day before I went for surgery. The day I came home from the hospital they arrived like magic. These are sweet little forms that weigh absolutely nothing. They are soft and malleable. I am still pretty tender, but I have worn these out of the house for short periods of time tucked inside a camisole or a soft sports bra. I have found that I am less self-conscious "going flat" than I thought I would be, but these forms work very well in my regular bra for short periods of time. I had very large breasts, but I ordered a size smaller than the measurements indicated for me. At first I thought they were too small, but now that I am used to the big sisters being gone, I like the smaller size. For me these forms were a blessing and have made this process a little easier. I am sure insurance would pay for them, but since I will need them for such a short time I didn't want to deal with the process.

Thank you all again for being there and for taking the time to share all of your ups and downs. It really did make a difference in my life.

Shelley

Hi everyone!

I had my second post-op fill today. I am now up to 450cc out of 500cc. There was no pain, discomfort or pressure from the fill itself, although I am getting feeling back on the top part of the breast (which is where my port is) so I did feel the needle go in this time. Two weeks from today I go back for the last scheduled fill. I'll see the PS two weeks after that (1st week of August) to see if 500cc is enough or if he wants to put in a little bit more that day and then ... we schedule the exchange!! It could conceivably happen as soon as mid-August, but I think last week of August/first week of September is a little bit more doable. 

I haven't been posting a lot, but I have been reading everything. I can truly say that I'm back to my regular pre-DX life (well, except for all the doctor appointments!). As I said in an earlier post, I can sometimes forget completely about BC and about the TE. I'm not aware of the TE most of the time. I have full range of motion. I've even managed to sleep on my right side a couple of times! Life is good! I do go see a different oncologist on Monday for a second opinion on the necessity of Tamoxifen. That is the last little piece that is still dangling on this puzzle.

So much happy news here and such funny ladies!! I feel that we would all get along so well if we all got to meet in person!

Welcome, Shelley! I'm glad you decided to come out of "lurkdom" to say hello. I'm glad you found strength in reading our stories. Thanks for the tip about the beanie boobies.

Laurie: What wonderful news on your pathology!! CANCER FREE!!!! Two truly fantastic words!

Liz: You're a nut to have been lifting weights! I'm not even sure how you were able to manage that, but STOP IT!!!  LOL

Joy: It is always such a happy thing to read your posts! You are so upbeat. Don't feel bad about hating the prosthetic. You are entitled! But remember, it's only for a little while. Your reason for putting off the reconstruction is such a happy one!

speech: My two baby girls are 17 and 20. They have been an incredible source of support and laughter through this ordeal. I hope and pray that a cure is found soon so that they never have to deal with this monster for themselves.

Circe: I've been cleared to have a glass of wine every once in a while. Once you're off the pain medication, I think it's okay.

stlcardsfan: Great news on the rads!

Liz: If you think Connecticut is hot, you should try Florida. Ay ay ay!

Getty. 

almagetty So glad to read your info on the filling of the TE.  I see my PS this Friday for the first time since surgery.  I am so sore that even the thought of someone touching me makes me ill. I can't even imagine how what is left of me will ever look normal again.  I know how you feel about your children.  I have already gone with mine for mammograms.  They are ages 27-41.  My 41 year old showed signs of something suspicious but the sonogram came back ok.  Very scary.

skmmingalong  I love the beanie boobie things. I will look it up.  The one they gave me also is very odd looking and sure doesnt look good anywhere.  I had it on my dresser and had to hide it.  It didnt look good there either LOL.

No results back yet on my nodes. BS told me today that the drains really need to stay in for a while longer.

Joystars  Are you planning on finding out if your baby is a girl or a boy?  Let us know

Getty: congratulations on your fills and getting feeling back.  That is such good news.  Even with 18 nodes removed I still have total feeling in my arm, under my arm, my upper chest....everywhere.   I guess that is the result of being lucky enough to have what some would call one of this best surgeons in this state.   She is good and I am lucky I got her.  I am so glad your exchange is going to be so quick.  My exchange is probably not until October because I am chemo and I am not sure how much or how long but with only 2 nodes effected, I am hoping for a short chemo treatment situation and then I have wait 1 month until the exchange can be done.   All in good time.   Every day we are all collectively stronger healthier thanks to our wonderful doctors and the fact that we all caught it in time.   We all really are lucky.

Joystars:  I meant to tell you about Amoena and those falsies!  I contacted a company online to get camisoles post - operatively with some "puffers!" so I would look ok going out,  In any case, the one thing they failed to tell me is I would not receive my Amoena cami's for 4-5 weeks AFTER surgery because I guess Liberator, this catalogue company, bills my insurance and makes sure they get paid BEFORE they send my cami's!  I'll be on probably my 2nd or 3rd fill by the time I get them all because this company has to make sure they get paid before they can mail them out...great.  I hope they are nice and I get some other use out of them by the time they finally get here.   Actually I have been going out with nothing and I feel  ok about that!  I just look flat chested...fine by me!

Liz 

Hi Ladies,

I am all smiles reading your incredible posts! Very important information here! And much progress with everyone. Drains. My instructions are to not do much activity at all for the first two to three weeks, then start mild aerobics, if allowed. I'm glad you found out Liz what was making all that fluid flow!

About the generics. Having been on this road for a while, earlier on I was taking Ambien to sleep. They gave me generic and it was horrible stuff, not at all like real Ambien. I took it back and made a declaration that it was junk, and they took it back and replaced it with real Ambien. At Walreens here in misty, cool Santa Monica. Yes, it has been lightly raining for the past three days. I love it, as it keeps things more quiet and people more subdued, but there are those who insist that July be SUNNY. Oh well.. Today I was at Walgreen's again,  getting my RXs for the big surgery July 22. I insisted on all name brands, and the pharmacist acted like I was bit of a problem as she had to look each of them up. Seems Big Pharma is in bed with Big Med Insurance Co. and they are setting everyone up to just take generics. The pharmacist said they "punish" anyone who orders name brand by charging huge amounts of money. I'm of the mind that I'd rather pay $100 for the real deal, because I'll only be on these drugs a short while and might as well have the ones that work properly and are effective. The young guy pharmacist I sometimes get there said wistfully that he wished he could afford name brand, that he'd get them, too. So I have ordered name brand Valium, Oxycontin plain, without aspirin, tylenol, or any other "filler" and then the antibiotic is also to be name brand. I must wait a week for the Oxycontin, but why not? it's true those generics have a lot of leeway to put only a % of the real stuff in there and fill it up with other junk the rest of the way. This must be a part of the decline of Western Civilization as we are getting to know it first hand.

I'm sorry you got left in the lurch, Liz! and then got set straight by your Dr. so those drains will come out sooner than later. Good for you for having such a great workout routine! Glad you've got your drains gone, stlcardsfan - onward and upward! Laurie, sounds like you are being a very good patient and have a darling husband taking care of you. Glad you are doing so well and you two got a break to yourselves. MRDRN, sorry you are having those pains, I'll be following you with the SMB arm thing most likely. I know it will relieve soon, though, and hope you are trying some of the "cures" for constipation as offered here by others. The warm prune juice sounds like a winner. Think I'll pre-dose with stool softeners, and then take more magnesium than usual, as that relaxes the peristalsis pretty well. And then keep prune juice on hand. JBL10 sounds like you are doing very well, and repeating the mantra, BE, not, DO, for the time being. Great advice for a fast recovery. Am glad someone mentioned looking at their boob. I saw photos of a woman who had the expanders I'll have, low height, and they look pretty deformed for the whole time, as there is no upper pole, but the end result will be good I trust for all of us who have TES awaiting exchange. Oh, yes, that's another forum! Oh, my surgeon said it will be an eight hours surgery. Three for the BS to do the BMX & SNB, then the PS to do the recon w/ TEs for four to five hours. Cannot imagine what that will be like, but I'll be alseep, so guess I will never know except the aftemath.

Hang in there, everyone, and sooner than later you will be enjoying some cocktails and guacamole with chips by the pool while I drink, my prune juice and sleep all day and night on a pile of pillows. So happy you are all doing so well!!! 

I had my last appointment with the general surgeon yesterday and he said that if it was his choice, he would release me back to work. But he said that the PS has to see me first and then he will release me. I see him on the 13th and I fully expect to have to go back to work. I also need to find out the timeline for the exchange surgery - I have read that it can happen as soon as 2 weeks after your last fill. He told me that I will need at least 2 more fills. I had not thought that I would be going back to work and then going back on disability, but I suppose that's the way it has to be.

On another topic, I got my 90 day supply of Tamoxifen today. My oncologist suggested that I take it with Vitamin E to help with hot flashes. I don't have the Vitamin E yet as I ordered it throught the mail. I am a little nervous to start it.

I am still not sleeping well in bed. I don't know how to correct that. I've suggested to my DH that he switch sides with me but he is not wanting to do that. I really don't want to continue to sleep in that recliner indefinitely......