Can you please share your mastectomy story with me?

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Hi,

I just realised today that i'm scheduled to have a mastectomy done next week tuesday and unfortunately, reconstruction can't be done until after I've completed the treatment, which will be in a couple of months.

I'm 27years old and I will really appreciate it if i can hear about the experiences of people that i've gone through it already to give me an idea of what it's like.....i need to know what to expect when i come out of surgery and realise one breast is gone!

Pls feel free to share your experience with me. Thanks

Comments

  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited March 2010

    Hi Sumby -- good to hear from you!  I've been thinking of you and wondering how you're doing.

    I had a left mastectomy, but I had a tissue expander placed for reconstruction, so I had "something" there -- although it was much smaller than my breast -- anyway, I was quite aware that my real breast was gone.  But since I had so many phobias about surgery in general, and anesthesia in particular, I tried to focus on being really happy I woke up...  Whatever you feel afterwards is what you feel, and I think it's hard to know beforehand just what that will be...  Probably a mix of feelings, good and bad.  I do think that the physical pain will be less, and the healing faster, without immediate reconstruction.

    Hugs to you, and my strongest wishes that all goes very well -- I'll be thinking of you!

    Ann

  • pixilicious
    pixilicious Member Posts: 1
    edited March 2010

    Hi Ann - I will be having a bilateral mastectomy with immediate exander placed for reconstruction in April 2010.  I can't get through the day without worrying myself sick about the anesthesia, will I wake up, and the general surgery phobia's like you.  Was it at all like you expected and how was your day to day recovery afterwards. 

  • sumby
    sumby Member Posts: 37
    edited March 2010

    Hi Ann, Thanks for getting back to me...yeah it's been a while. Did u have radiation therapy? My surgeon says i can't have immediate recon since they have to be sure i won't be needing radiotherapy first. So what i will get after the surgery is prothesis, how come u got tissue expander immediately?

    Hi Tparrish, I'm considering opting for a bilat mastectomy also so i will appreciate it if u can share with me how u came abt making the decision to have bilat mx as ur cancer is DCIS and it's a stage 0. Thank u

  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited April 2010

    Hi ladies,

    I had a bilateral modified radical MX in Oct. 2007 when I was 37, no recon and it was not too bad. The worst part for me was the stinking drains you have to get. I was up and about in a few days, but moving really slowly. Also be aware you need to get everything you use regularly at waist level, reaching up is not an option for a while. I found the hardest part of recovery was a month after surgery when the nerves try and come back to life. Take my advise Ibuprophin and Tylenol will not cut it! My oncologist laughed at me when I told him I was trying to control the pain with Advil.LOL He is a great guy! He prescribed me some morphine tabs as I am allergic to codine and synthetic codine. Take the tabs, you need them! If you have any questions specific questions please let me know!

     XOXO,

    Regina

  • petitcocquin
    petitcocquin Member Posts: 7
    edited April 2010

    Hello sumby,

    I had a single modified radical mastectomy in mid February and am presently on my 4th of 8 rounds of chemo.  I too was not a candidate for immediate reconstruction because of possible radiation therapy, though the plan is a prophylactic surgery on the other side and reconstruction once I'm all done with the treatments.  I did not have any realistic choice other than mastectomy either.  I really, really hated those facts.  There are days that I still get angry about it.

    I was going to school full time, working full time, working on my second degree blackbelt as well as teaching martial arts (not to mention raising a teenage boy).  My world came to a standstill.  My confidence took a serious beating.   Mostly, beyond the missing boob, I wanted my life back.  Truth is this is my life now and the rest of the pieces are falling back in to place as I can manage.  I pray my body will follow suit.  Fortunately, my family and friends have let me cry as much as I want and have gotten used to my new found really dark sense of humor. 

    While I am not happy with what this cancer thingy has done to my boob and hair (not to mention my weight gain because I'm an emotional eater and taking steroids don't help that situation), I know that I love the person I am.  I am not as young as you are, but a single woman at 40, I wonder if any man will ever understand, or could love me enough to look beyond what I will be left with after this is all done.   I fight everyday to remember that it is a process that I have every intention of coming out on top of.  Some days thats even a chore because I get exhausted from the chemo, but I fight like hell to excercise and get involved in something when I am able which has also helped with my recovery from that surgery.

     Everyone is of course different in how they cope and I put off things like my prosthesis and a wig just because I didn't want to deal with the reality of it.  However, getting that prosthesis and adjusting to the wig certainly filled some confidence gaps that might see me through this process.

    Something I decided to do to get beyond my unhappiness with my outside being is to participate in every research project and trial that I can so that maybe some other women won't have to go through this.  Other things that have helped are some really great books like "Why I Wore Lipstick to My Mastectomy" by Gerlyn Lucas and "The Victoria's Secret Catalog Never Stops Coming" by Jennie Nash.  The first book is by a woman diagnosed at 27 and has some additional resources listed in the back.  Not to mention this site!!  Knowing how others have dealt with it is a great place to start.

    I struggle every day.  I fight every day.  My story is still being written and goes way beyond my surgery now so I'm sorry if this is more information than you needed.  Good luck on your journey.  I hope this helps.

  • sumby
    sumby Member Posts: 37
    edited April 2010

    Thanks Hair spray mom, i'm beginning to feel the twitches every now and then. Sometimes it feels like electric shock but it's not too painful...i really hope it doesn't get any worse as i will be starting chemo next week. But i will bear your advice in mind.

    Petitcocquin: Thanks for your post. My wound is healing quite well and i will be starting chemo next week wednesday. How soon after u started chemo did ur hair start falling off? And did u have any other side effects?

    I've seen the movie of whi i wore lipstick...and i could really relate with it as she was abt my age when she was diagnosed. I think it's realy good that u r getting involved with all the trials and all. Sometimes i get so scared that i'm having it so early and that there's a chance of recurrence. But i just try to take each day as it comes and leave the rest to God....it's a tough journey but some days are better that others!

  • petitcocquin
    petitcocquin Member Posts: 7
    edited April 2010

    My hair started coming out the day after my 2nd treatment (2 weeks into it). I hear it can be different for everyone and mine happened just like they said. I have nausea, fatigue, and am retaining a bit of water. The nuelasta shot causes me some pain, but its bearable and resolves itself. I get treatments every 2 weeks and have 5 good days out of every 14. I'm getting adriamycin/cytoxin right now and after the next one I'll be getting taxol. What are you getting? hope your healing well. Take care.

  • harmonykate
    harmonykate Member Posts: 3
    edited April 2010

    The feelings can range but for me I awoke feeling glad the cancer was removed. I had a left modified radical and several lymph nodes removed. I was 48 at the time and am sure had i been young it would have hit me differently.

    I had to wait for reconstruction surgery until after chemo and radiation. That went well and I had an excellent oncology team.

    The best advice I can give is to ask questions and follow the instructions for after care.

    It will be scary knowing you have so much missing but in time that will be reconstructed and you begin to forget how drastic it appeared.

    I hope I have been some help.

    Each person is so different and each woman's reaction is unique to their own situation. Don't feel like your response has to mirror that of anyone else.

    You are in a fight the the hardest things emotionally for me were the stupid remarks people would make (even some friends). I tried not to waste energy being upset and used their ignorance as an opprotunity to educate them about the facts.

    I wish you the very best through your journey.

  • kerry_lamb
    kerry_lamb Member Posts: 778
    edited April 2010

    I'm sitting here two years out from my mastectomy (which followed a near-death experience in the January, a lumpectomy, resection etc). In the last two years I have had four lots of surgery and five months of chemo.. I had a mastectomy, followed by chemo, then 12 months later a proph-mast, and a double recon. Boy..what a blurrrrrr. My most vivid memory, in fact my ONLY vivid memory! is leaving the hospital (two days early due to a shortage of beds) and getting dressed. I put on my jeans, (my THIN jeans!), my long sleeved merino t-shirt and then my normal shirt...I was hyper-aware of the nurse watching and not making eye-contact. I guess she was used to seeing a normal woman getting dressed with no bra and only one (large) boob. That was the moment it hit me. I felt really ashamed and so totally...unprepared! Two years of roller-coaster later I have two boobs, good health, an axe over my head (which I just kind of accept) and a take-no-prisoners-approach to cancer. Cancer is shit, and it's important to accept that and move on..at PACE! Mentally, I have have major ups and downs..I'm not bullet-proof anymore.  But I refuse to let fear be my main basis of living. Nothing is ever the same...but I have enjoyed being the B--ch taking charge of her life :) Good luck in your journey..I have discovered joys I had previously rejected, like ice on the windscreen, and walking in the freezing coldLaughinglife is awesome...it's true!

  • sumby
    sumby Member Posts: 37
    edited April 2010

    Petitcocquin (can i ask what inspired ur name? Laughing ) I'm actuall starting chemo today and that was why i came online now to learn anything about it i can! I've had a rough week with my portacath insertion...i'm really hoping the chemo won't be as hard. I will be having scalp cooling(do u know abt that? I'm hoping it helps to prevent the hair from falling off....). I'm having a regimen that's very close to yours: epirubicin/cytoxan for 4 cycles and Taxotere for another four cycles. How long ago did u start ur chemo and where r u retaining the water? 

    HarmonyKate: Yeah, i've also been told i have to wait till after chemo and radiation...i've kinda gotten used to seeing the scar and it's not as horrible as i thought. I think the hardest part of the mastectomy is coming to terms with having the surgery not the surgery itself(hope that makes sense). So how does it feel to be through with treatment?

    Kerry_lamb: Thanks. The fear creeps in every now and then but i just try not to be a captive to it and stories of people like u just encourages me and i know that it will be over sooner than it seems. All the best!

  • Ttidwell45
    Ttidwell45 Member Posts: 2
    edited May 2010
    Hi my name is terry i had a double mastectomy, I had cancer in the right breast but i had them to take the left one to. I was so scard that it would come back in the left one. It has been a month and a half ago that i had my sergury done. And i am going through radiatin now. i look like a boy but that is ok with me. as long as the cancer dosen,t come back i don,t care about that. I hope that you are getting better to. my God be with you through all of this stuff. you can right me back if you would like to at Ttidwell45@yahoo.com  Your sister in the fight aginst cancer.
  • Ttidwell45
    Ttidwell45 Member Posts: 2
    edited May 2010
    Hi my name is Terry i have breast cancer to. My hair came out after two weeks to. and it was very long. and the shot made me heart and made me fill like i had the flu. The cemo made me sick to i had to take cemo every three weeks had a week between them and i had to do again.But now it is over i have been done with cemo for 2 months now. A month and a half ago i had my surgery done.I had a double mastecomy and noe i am have radiation 33 days. I have only 17 to go now. It will get better it will. just hang in there don,t give up you will kick that cancers butt you,ll see. if you would like to right me here is my e-mail. Ttidwell45@yahoo.com    P.S we will fight this together.

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