new patient

catowner
catowner Member Posts: 50
Was diagnosed with breast cancer two weeks ago and having surgery on Sept 14. I am having a single mastectomy and was wondering if there is anyone out there in the same situation? I am also new to csn so am not completely sure if I'm doing this right. Thanks, catowner.
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Comments

  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    Welcome
    I had a lumpectomy so I can't offer any help there. I just wanted to say welcome to the site so sorry for your need to be here but there are wonderful and wise ladies here to help you out. God Bless (((hugs)))
  • catowner
    catowner Member Posts: 50

    Welcome
    I had a lumpectomy so I can't offer any help there. I just wanted to say welcome to the site so sorry for your need to be here but there are wonderful and wise ladies here to help you out. God Bless (((hugs)))

    new
    Thank-you for the welcome and yes, after reading some of the posts everyone sounds wonderful! It is a blessing to know we are not alone in this disease. Hugs to you also:)
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    catowner said:

    new
    Thank-you for the welcome and yes, after reading some of the posts everyone sounds wonderful! It is a blessing to know we are not alone in this disease. Hugs to you also:)

    Welcome, and please "stay tuned" :-)
    I had bilateral lumpectomies, so can't offer you any experience with mastectomy -- but there are definitely many women here who have had a single mastectomy, and I know they'll be along to share their experiences with you.

    I will say that this initial period after you first hear those words, "You have cancer" -- all the crazy unfamiliar terms and concepts, new doctors, having to make so many decisions -- is so overwhelming and emotional, and we've all been there. It will get easier, I promise -- especially with all of us here to support and cheer you on!

    Take good care,

    Traci
  • grams2jc
    grams2jc Member Posts: 756
    that's me!
    Ok, I had left mastectomy last November, followed by 4 epirubicin/cytoxan and 4 Taxol treatments then 33 radiation treatments, finished July 8, 2011. Now on Tamoxifen.

    Remember to take a shirt that closes in the front to the hospital for coming home and also for at home wear until drains come out. It was winter so I stuck my drains in the inside pocket of athletic jackets because I had no idea there were actually camisoles made with drain pockets. If you have a certified mastectomy bra fitter in your area they possibly carry the cami. Also, after the advocate gave me the cami I realized I liked my way better.

    I had no issues with pain or movement, did not need physical therapy, but did get instruction regarding lymphedema since I had axillary nodes involved.

    We made a chart to track my drain output in order to be done with that faster, but that was really all of the after care other than running to and from the surgeon, etc. And of course I couldn't take a "whole" shower so the handheld shower head was really nice. A small pillow to put under the seatbelt of the car on your chest is also a really good thing.

    Please private message me if you would like and I will be happy to share my limited knowledge.

    Jennifer
  • Tkitty
    Tkitty Member Posts: 56
    grams2jc said:

    that's me!
    Ok, I had left mastectomy last November, followed by 4 epirubicin/cytoxan and 4 Taxol treatments then 33 radiation treatments, finished July 8, 2011. Now on Tamoxifen.

    Remember to take a shirt that closes in the front to the hospital for coming home and also for at home wear until drains come out. It was winter so I stuck my drains in the inside pocket of athletic jackets because I had no idea there were actually camisoles made with drain pockets. If you have a certified mastectomy bra fitter in your area they possibly carry the cami. Also, after the advocate gave me the cami I realized I liked my way better.

    I had no issues with pain or movement, did not need physical therapy, but did get instruction regarding lymphedema since I had axillary nodes involved.

    We made a chart to track my drain output in order to be done with that faster, but that was really all of the after care other than running to and from the surgeon, etc. And of course I couldn't take a "whole" shower so the handheld shower head was really nice. A small pillow to put under the seatbelt of the car on your chest is also a really good thing.

    Please private message me if you would like and I will be happy to share my limited knowledge.

    Jennifer

    mastectomy
    I had a lt side mastectomy. Actually, I had chemo first, then the mastectomy, currently doing radiation treatments. The mastectomy was the easier part for me. The area was numb, so I didn't have any pain. The drains were a bit bulky, but the hospital had me in a Jodee bra that had pockets for the drains to go into. I would recommend taking a shirt that opens in the front as my arm didn't work as usual for a while and it is easier to put on a shirt that opens in the front.
    Good luck, will be sending hugs your way.
  • catowner
    catowner Member Posts: 50
    grams2jc said:

    that's me!
    Ok, I had left mastectomy last November, followed by 4 epirubicin/cytoxan and 4 Taxol treatments then 33 radiation treatments, finished July 8, 2011. Now on Tamoxifen.

    Remember to take a shirt that closes in the front to the hospital for coming home and also for at home wear until drains come out. It was winter so I stuck my drains in the inside pocket of athletic jackets because I had no idea there were actually camisoles made with drain pockets. If you have a certified mastectomy bra fitter in your area they possibly carry the cami. Also, after the advocate gave me the cami I realized I liked my way better.

    I had no issues with pain or movement, did not need physical therapy, but did get instruction regarding lymphedema since I had axillary nodes involved.

    We made a chart to track my drain output in order to be done with that faster, but that was really all of the after care other than running to and from the surgeon, etc. And of course I couldn't take a "whole" shower so the handheld shower head was really nice. A small pillow to put under the seatbelt of the car on your chest is also a really good thing.

    Please private message me if you would like and I will be happy to share my limited knowledge.

    Jennifer

    Thank-you Grams2jc, since I
    Thank-you Grams, since I am new to this I do not know how to private message? Hopefully I will figure all this out soon so I can better communicate with all the wonderful people on this site! Any knowledge I hear is great and very helpful. Hugs to everyone....
  • mamolady
    mamolady Member Posts: 796 Member
    bilateral mastectomy
    I had them both removed. The worst part was the drains. You should move your arms as little as possible in order to get the drains out early. I never realized how much I use my arms! Even just talking..... So follow what ever instructions they give you to get those tubes out! The button up shirt is a must, I couldn't use the mastectomy camisole. I got diaper safety pins, they don't mess up your clothes as much, and just used those to pin the drains to my shirt or pants. I saw a post on here that mentioned that the anesthetic makes your skin itchy. I didn't see that till after the fact. I had to take the flannel sheets off the bed because they made my skin crawl. Try to use silky type fabric for the first few days. Breathing deeply helps get the anesthetic out of your system. Walking helps alot too.
    This really was not that bad though, but do let some one take care of you!
    All the best,
    Cindy
  • skipper54
    skipper54 Member Posts: 936 Member
    mamolady said:

    bilateral mastectomy
    I had them both removed. The worst part was the drains. You should move your arms as little as possible in order to get the drains out early. I never realized how much I use my arms! Even just talking..... So follow what ever instructions they give you to get those tubes out! The button up shirt is a must, I couldn't use the mastectomy camisole. I got diaper safety pins, they don't mess up your clothes as much, and just used those to pin the drains to my shirt or pants. I saw a post on here that mentioned that the anesthetic makes your skin itchy. I didn't see that till after the fact. I had to take the flannel sheets off the bed because they made my skin crawl. Try to use silky type fabric for the first few days. Breathing deeply helps get the anesthetic out of your system. Walking helps alot too.
    This really was not that bad though, but do let some one take care of you!
    All the best,
    Cindy

    Rt mastectomy last December
    You can get those neat cammis that open down the front and have drain pockets from the ACS TLC catalog - order on line if you can't find locally. Mamolady says not to move arms, my surgeon said use your arms just don'e reach over your shoulder height - SOOOooo folow your surgeon's instructions. He started me on arm exercises at my one week follow-up. He wanted me moving to move the fluid out of my chest and had his guidelines about how much fluid was still allowed to be draining for tubes to come out.

    Sorry for the need to seek us out but glad you found us. This is the best support group going! We're all here for you and sending prayers for a speedy recovery.
  • missrenee
    missrenee Member Posts: 2,136 Member
    skipper54 said:

    Rt mastectomy last December
    You can get those neat cammis that open down the front and have drain pockets from the ACS TLC catalog - order on line if you can't find locally. Mamolady says not to move arms, my surgeon said use your arms just don'e reach over your shoulder height - SOOOooo folow your surgeon's instructions. He started me on arm exercises at my one week follow-up. He wanted me moving to move the fluid out of my chest and had his guidelines about how much fluid was still allowed to be draining for tubes to come out.

    Sorry for the need to seek us out but glad you found us. This is the best support group going! We're all here for you and sending prayers for a speedy recovery.

    Welcome
    I had a lumpectomy, but did have a complete axillary dissection, so I did have to have the dreaded drain. It was a pain, mainly because I had to have it in 5 weeks. The dang thing just would not stop! However, it was doable--just unfamiliar territory for most of us.

    Best of luck to you on your surgery. You'll be surprised at how strong and resilient you are.

    Come here often to let us know how you're doing, share a funny story, ask for advice or just talk. We're here for you.

    Hugs, Renee
  • Marcia527
    Marcia527 Member Posts: 2,729
    I had a single too.
    I had a right modified radical mastectomy in 2003. Also removed 15 lymph nodes. I had chemo before and after surgery and radiation. Good luck!
  • sweetvickid
    sweetvickid Member Posts: 459 Member
    I disagree!!!!!


    Having a surgical drain prevents blood and lymphatic fluid buildup under your skin, and encourages healing and recovery. You will need to measure the fluid daily, and learn to keep the drain clean, to prevent infection. When the fluid is 2 or 3 tablespoons or less in a 24-hour period, the drain can be removed.

    Move those arms. You don't want your shoulder joint to lock up. For the 1st 7 days after surgery i had to do the following exercises.sorry but it may be hard to explain in words!
    1) circle shoulders 5x forward and 5x backward
    2)place fingertips on shoulders of same side and slowly raise elbows upward until they are in line with the height of your shoulders.repeat 5x (you may not get very high to start with)
    3)sit on the edge of a chair,clasp ahnds with arms out locked in front of you and slowly lift to shoulder height.repeat 5x
    4)raise each arm individually as if combing your hair from front to back.repeat 5 times each side(i found this one painful to start with)
    5)reach around and walk your fingers up your back.repeat 5x each side.
    ----------------------------------------------------------------------------------------
    From day 7 i then had to add more exercises in AS WELL as doing the first five.
    6)stand about 1 foot away from the wall but face it.put both hands on the wall in front of you and slowly walk your fingers up the wall.Mark where you get to so you can copare daily.repeat 5x
    7)stand so the wall is to your side.place fingers on the wall and slowly walk your fingers up the wall as in (6).repeat 5x each side.
    8) lay on the bed with kness drawn up and feet flat.Put your hands behind your head and VERY gently let your arms drop as far as they will go.Repeat 5 times,(this also hurt alot but it does get easier!)
    9) hold a towel diagonally behind your back and see-saw it up and down in a drying action.
    -----------------------------------------------------------------------------------------
    After 2 weeks I was allowed to add the final 3 exercises
    10)lay on your back with enough head room to lift both arms upward and over your head as far as you can.Do 1 arm at a time and assist with the other arm.go as far as you can and hold for 5 seconds.repeat 5x each side.
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I had a bilateral in Jan. I
    I had a bilateral in Jan. I agree that it is important to move your arms, but follow your docs orders on that.

    When I was in the hospital, the nurse escorted me to the toilet. My legs were still a little wobbly, so I grabbed the rail on the wall as I was sitting down. DON'T DO THAT!!!
    For me, the pain when I did that was absolutely excruciating. If you feel wobbly, tell the nurse and let them give you the stability you need to sit. Or in your case, use the non-surgery side.

    Be sure and let us know how you're doing when you are up to it. I hope the surgery goes smoothly, and that your recovery is quick.

    Hugs,

    Linda
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    welcome...sorry you had to
    welcome...sorry you had to look CSN up...but great place...I dont' think any real right or wrong way to start. When I posted at first I TOO was unsure..I THINK few thought i was someone else..for awhile

    anyhow I had lumpectomy 3 1/2 yrs ago...radiation for 8 wks. I will be thinking of you on the 14th!

    Denise

    this is great place to VENT
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    Newly Diagnosed with Breast Cancer
    Hi catowner,

    Sorry you had to find this message board for the reason you found it. Welcome to the club that no one ever really wants to join. I had a an excision biopsy, complete axillary dissection, right mastectomy and then 16 rounds of chemotherapy - 4 of A/C then 12 rounds of T (Taxotere). I did not have any radiation. The surgical recovery was not bad. It was nowhere near as painful as I had anticipated. Most colorful bruises I had ever had though.

    Because I did not move my arms enough after my surgeries I ended up with adhesive capsulitis (aka frozen shoulder) and had to have shoulder surgery to remove the adhesions along with 4 months of physical therapy. I cannot emphasize enough: MOVE THAT ARM AND SHOULDER. There is a lot of information about post-mastectomy shoulder exercises on the web but you should absolutely discuss this with your surgeon. Once I was recovered from the shoulder problem I had my reconstruction surgery. I had a breast reduction on my non-cancer side and had my tissue expander replaced with a saline implant on the mastectomy side. That was 3 months ago.

    While the surgical drains are a necessary evil, they are not painful. Just uncomfortable and strange. After my mastectomy my husband emptied the drains for me and measured the fluid. My 18 year old daughter even did it a couple of times. We kept track of the amounts on a chart the hospital provided. We could just have easily made our own chart though. I think I had them in about 2 weeks and then the surgeon removed them during an office visit. Now THAT is a weird feeling. I even showered while I had them in. Just tape the tubing to your body with surgical tape you find in any drugstore. You don't want to let them dangle.

    There is SO much to learn once you have a cancer diagnosis. This board is a great source of information and support. Any issue you have has probably been experienced by someone here who is willing to share with you. You are NOT alone.

    IRENE
  • pinkkari09
    pinkkari09 Member Posts: 877
    I want to say Hello and
    I want to say Hello and Welcome to the board you wished you would never have to look for, and yet, you'll be so happy you found it. Sounds like you have received lots of advice, and you'll get good orders from your surgeons as well, make sure you ask lots of questions with your medical team. It helped me to keep a note pad in my purse so that every time a question came up I could write it down, it seemed with all that was hitting me at once I had a hard time absorbing it completely, too overwhelming. I had a bilateral mastectomy in February 2010, along with both ovaries removed, left side lymph nodes and immediate reconstruction using the latissimus flap from my back. It was a 7 hour operation with 3 surgeons, so my restrictions were probably different. One piece of advice I can give is to keep up on your pain, don't let it get away from you, if you're in pain, use your pain medicine with first onset. And I remember getting my side drains removed and I still had the one in my back, I went in and said it was only draining x amount a day (I told a tiny lie :( because I wanted it out, oops) :) don't do that, I wound up going in every other day and having it aspirated for over two weeks. It gets better as the days go by and before you know it, you'll be moving on to the next step in battling this BC and putting it in your past. Welcome again and I'm glad you have found us :)
    ~Kari
  • sunshine.dance
    sunshine.dance Member Posts: 21
    New patient
    Hi, I will be having a double mastectomy on 9-15. Just wanted to welcome you and say good luck on your surgery! I'm also very new to this discussion board but there are some great people here with wonderful advice to share. One thing that you may want to look into is, if you have insurance, your insurance co. may cover the cost of post mastectomy camisoles/bra's for you. I went to Lady Grace in my area & have ordered a camisole with pockets for the drains. I will pick it up early next week to wear right after surgery. You are probably still reeling from your diagnosis but rest assured you are not alone on your journey. You will find support in many places and encouragement when you need it. Don't be afraid to ask for help or meds for anxiety prior to your surgery. Please let me know how you make out...
  • camul
    camul Member Posts: 2,537
    Hi Catowner
    Glad you found this site! Great group of women and so much support. I also had a single, wanted bilateral, but insurance said no! Follow the doctors orders and even though the exercises hurt, they are so important to keep the motion in your arm. The doctor will let you know when to start, and if you feel you need more answers or information, let him know.

    I have learned that the doctors sometimes assume that we know more than we do! So if in doubt, ask!

    Hugs and Prayers for your upcoming surgery,
    ~Carol
  • debi.18
    debi.18 Member Posts: 850 Member
    camul said:

    Hi Catowner
    Glad you found this site! Great group of women and so much support. I also had a single, wanted bilateral, but insurance said no! Follow the doctors orders and even though the exercises hurt, they are so important to keep the motion in your arm. The doctor will let you know when to start, and if you feel you need more answers or information, let him know.

    I have learned that the doctors sometimes assume that we know more than we do! So if in doubt, ask!

    Hugs and Prayers for your upcoming surgery,
    ~Carol

    Welcome Catowner and SunshineDance
    Just wanted to add my welcome to this wonderful site of awesome sisters. As you've already seen, the advise and support is amazing. As others have said, sorry you had to join us but glad you found us.

    Hugs, Prayers and postive thoughts to you both!

    Debi
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    camul said:

    Hi Catowner
    Glad you found this site! Great group of women and so much support. I also had a single, wanted bilateral, but insurance said no! Follow the doctors orders and even though the exercises hurt, they are so important to keep the motion in your arm. The doctor will let you know when to start, and if you feel you need more answers or information, let him know.

    I have learned that the doctors sometimes assume that we know more than we do! So if in doubt, ask!

    Hugs and Prayers for your upcoming surgery,
    ~Carol

    Welcome .. to our Sorority of WARRIORS ...
    Sisters in PINK, fighting towards 1 common goal -- to kill the beast -- in our case, breast cancer --.

    We are a group of 'Kindred Spirits' from all walks of life, and age groups. Cancer knows no boundaries when it comes to invading our bodies and our life.

    Myself, I am a bilateral mastectomy Gal, my choice -- So many mindful suggestions and information offered to you. Please read, digest, research and write down questions for your surgeon and his staff.

    We are here for you 24/7.

    Prayers coming your way.

    Strength, Courage and Hope.

    Vicki Sam
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    You are doing it perfectly
    You are doing it perfectly well!! Welcome to the club that you never wanted to join, but you are welcome and now an official Kindred Sister (what we call each other here). Everyone will try and help however they can.

    I had a single mastectomy back in 1987. I wasn't given any choice as I had a multifocal (many cancers) tumor that was spread throughout my breast amd my physicians said a lumpectomy would not be cosmetic.

    My sister was offered a lumpectomy, but she was nervous because of my situation and elected to have bilateral mastectomies. For her, it was the right decision because she turned out to have the same multifocal cancer (didn't show up on mastectomy or mri).

    We have done well. My younger sister has been about 12-15 years now (I think). I have been 24 years!

    Good luck and if you have any questions, I will try and help the very best that I can.