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Double Mastectomy - recovery what to expect
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Lindsey10430 posted:
Hello Ladies,

I hope everyone had a nice October. I am 26 and scheduling a double mastectomy for February with immediate reconstruction (expanders to implants). I had a benign breast tumor at age 21. Had a lumpectomy at age 24. Turns out I have pre-cancerous cells. (LCIS). Since this diagnosis, I have consulted with several experts and because of this diagnosis, my mom's breast cancer history, among other things... The consenses is that I need to get a double mastectomy ASAP. I FINALLY (2 years later) have the courage to schedule it. I have a great husband and 2 energetic kids ages 7 & 3.

To anyone who has been through this (God bless you!!) can you give me some insight what to expect for my recovery? Or any tips? I am afraid of my kids seeing me so sick in bed. Should I have my husband take them on a mini vacay the first few days after surgery? My mom will be helping to take care of me. I'm just terrified and don't know what to expect. Thank you!!
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rachael67 responded:
Lindsey, I am so sorry to hear you are going thru this, but want to assure you that this community is filled with caring folks who have been there/done that and will do their best to support and help you.

For this moment I am not going to address your questions as my immediate reaction is to ask why you are delaying this until February? The longer you wait, the more anxious you are apt to become. Worry festers in an unknown neighborhood.

If you have good reasons, it makes sense, Otherwise, you might want to give some thought to moving it up sooner.

Others will chime in with more responses and answers. I am sure their experiences will help considerably.

Please know that you will be in our thoughts. Keep us updated on how you are, and feel free to come here whenever.

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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connieheg responded:
Hi lindsey
Everyones breast cancer is different. only u know your body and what your doctors tell you. feel free for 2nd and 3rd opinions. I did. it took time, my sisters had a fit, saying why am i waiting so long. I was diagnosed in december 2011, all by myself, i got the word on a friday nite when it was too late to call most people i wanted to share with. but i did call my sons out of state. It was invasive ductal carcinoma in right breast 1.78 meters. i made the decision on the surgeons and then they went on vacation so we scheduled after that and it was double mastectomy on May 16th., 5months after diagnosis, i was scared to death too. and went thru many stages. one of them being total denial. i did alot of praying and god put one good friend in my life. .2 actually. 3 actually. god takes care of you all the way. My son came to take care of me. There is no way i couldve dealt with grandchildren. i love them immensely but this is a time for you to take care of you.
and im sure your mom can do that. But i would also if i had a husband would want him there while i recover.
God is awesome. believe you me he takes you thru . it will be okay. They got all my cancer but i am almost thru with chemo as it is and insurance policy for us. chemo is not easy, but i wouldnt let it get my spirit. i have my moments but im having beautiful breasts, almost time for final surgery, and then im done. Its been quite a journey. . and dont lift anything for a long time. ,,remember that. So take care of yourself, i cant express that enough, you are the most important person for the next year at least.
 
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Annaviktoria responded:
Hi Lindsey,
I am so sorry that you have to go the road nobody wishes to go. I haven't been posted here for awhile, but had a lot of help from survivors when I needed it the most...
I had bilateral mastectomy done 4 years ago, but without a reconstruction ( I did not want to wait 3 month for the surgery).
I have to tell you that it was a lot of pain that I had to deal with
in the first week. I had medications for that. My kids were older then yours, so they were helping me actually. Of course, I was scared, but I knew I had to go thrue this. With bilateral mastectomy I spared myself from radiation and chemotherapy. I had to take Tamoxifen, but stoped 6 months later ( it gave me rare but serious side effect- blood clot- DVT-). I survived this too. I am going on with my life, eating healthy and exercising.
I am sure that your mom and husband will help a lot with the recovery. Have faith in God and keep positive attitude no matter how hard it is. You will go thrue this difficult time, I am sure of it. Please, feel free e-mail me at nataliya_markhelyuk@rogers.com and I will be more then happy to answer all your questions that you may have...
God bless you and your family!
Nataliya
 
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Meeshie responded:
Lindsey, I just wanted to drop a few lines of encouragement to you. I went through a double after I had 6 rounds of chemo (the tumor was aggressive and grew fairly large before it was found). I also had two kids (twins)who were 9 years old at the time of diagnosis. I did not find the mastectomy to be that difficult - only the drain lines were aggravating in that you have to empty the containers for several days after the surgery. I only stayed one night in the hospital, and I went home and went to Wednesday night services that evening. You will have to bathe to keep the incisions from getting wet for a week or so. After the drains come out (that was a bit painful), then you can shower. I did not have reconstruction due to the fear that the cancer would come back and it would all be for "naught." It has now been almost 4 years post op, and I am doing well. I still cannot bring myself to have reconstructive surgery as I do not feel the need right now. I kind of like not having to deal with bras and breast issues!! I only miss them during the summer when it's bathing suit season. God bless you in this journey. You will meet some absolutely amazing, courageous people as you go through this...it will be a blessing if you let it!!
 
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zeezzaJANET responded:
I was diagnosed one year ago... WISH I HAD KNOWN MORE.... through a series of lack of information... I went through the regular ... fumbling around finding facts about surgery etc...
HERE's my condensed... and pertinent to you ... story...
... after undergoing lumpectomy... told I was worse than before .. took 3 months to get chemo started... finished chemo April 19... at that appointment a fellow chemo patient gave me the name of doctors in Beverly Hills... Dr Cassileth and Dr Memsic.... I wrote an email to Dr Cassileth on Friday night... Monday I received a call from her... she scheduled me for a consultation.... 2 weeks later I had surgery... Double-Mastectomy with immediate reconstruction !!!
No expanders !!!
I was in for surgery 7am... woke a little after noon... was transported to aftercare nearby... there for two days.... off pain meds by Saturday !!! drains out in week one.... THESE WOMEN ARE AWESOME.... before you do anything... I HIGHLY RECOMMEND YOU TALK WITH THIS DOCTOR....
I was driving 5 days after surgery cuz I was not on pain meds etc.... amazing procedure.... look up her website... drcassileth.com
contact me if you want ... check out my blog.... i am just trying to get it organized...
realitycheck2gether.blogspot.com
GOOD LUCK !!!
 
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rachael67 replied to zeezzaJANET's response:
Please be aware that your post may be deleted as you have mentioned the names of specific doctors...A big "no-no" on WebMD! May I suggest that you begin anew post (SAME TITLE so that others might know what you are replying to!) ...Write the same thing, BUT do not put the doctor's names in it! Simply give your addy and tell folks who are interested to contact you directly. Okay???

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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rebasue56 responded:
Hi Lindsey~ Like the other ladies, I realize this is a hard time for you and your family. I had early stage 2 in my rt breast, and also asked for and had a prophylactic left mastectomy. Mine was missed in my usual mammos, and my husband had just had a heart transplant. So, our family was DONE w/medical issues by the time of my diagnosis. My work of bilateral reconstruction was performed in various surgical procedures, and I am now going on 7 yrs. of survival. As I am tall but small, there was no tummy to tuck so my rt breast was created from my suntanned freckled skin off my back... a bit more difficult and odd looking, and I'm "cut" 3/4s around my bra line, but it worked and I'm happy. I did great with chemo and never even got sick, reqd no radiation, but didn't tolerate tamoxifin so have been on femara for 6 yrs or so. I also have been taking a daily baby aspirin for some time, as this has recently appeared to be favorable in the med. reports. I have returned to finish my Master's degree and am working w/ppl having traumatic brain injuries. My dear husband died 30 months ago, so my new thing is to maintain a primary focus on my personal well-being, as I am now my children's only parent. I exercise/ or garden almost daily, maintain my wt, and really watch my diet (mostly Med/ or vegetarian now) and no food additives, etc. I'm doing the best I can to be positive as a newish widow, and to move forward as a healthy 56yr old woman. I know our ages are different, but our fears were the same. You are doing the right things; keep positive and know that this too shall pass. I had 0 complications, minimal chemo side effects, and did all of my "mom stuff" so that my family wouldn't be afraid. My normal activities reassured them and me, then and also now. Never had lymphadema, and I don't read scary stories bec. we are all different and so is our BC. Avoid negativity. Expect good and go from there:)
PS~ I rem. about as much from all of my reconstructive surgeries as I rem. from giving birth 2X. You know how it's written that if we recalled our pain in the delivery rm, we would never do it again? Well, all of my BC procedures are in this same place mentally... something I did that probably hurt then, but doesn't now and was well worth everything I endured. My experiences may have been better than other women, and I realize this, but they are still mine and real. BLESSINGS!
 
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zeezzaJANET replied to rachael67's response:
thanks for letting me know... I did not realize... I was just relating my story to someone who sounds so scared and weary... as I was...

I will repost without Dr names....
Blessings to you to !
janet
 
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zeezzaJANET responded:
Hello Lindsey
Blessings, Strength and Big Hugs to you and yours....

I was diagnosed one year ago... WISH I HAD KNOWN MORE.... through a series of lack of information... I went through the regular ... fumbling around finding facts about surgery, treatment, doctors... etc...
HERE's my condensed... and pertinent to you ... story...
... after undergoing lumpectomy... I was told I was worse than before .. took 3 months to get chemo started... finished chemo April 19... at that appointment a fellow chemo patient gave me the name of a doctor in Beverly Hills... (I was told in a response to my previous reply to your post... that I cannot mention Dr's names... so I am now reposting without their names...) I wrote an email to Dr ? on Friday night... on the following Monday I received a personal call from her... she scheduled me for a consultation.... 2 weeks later I had surgery... Double-Mastectomy with immediate reconstruction !!!
No expanders !!! Surgery, sealed up.... and I have normalcy and breasts....
I was in for surgery 7am... woke a little after noon... was transported to aftercare nearby... there for two days.... off pain meds by Saturday !!! drains out in week one.... THESE DOCTORS ARE AWESOME.... always check, research, go to consultations... explore your options and stay proactive !!!
I was driving 5 days after surgery cuz I was not on pain meds etc and I felt great .... amazing procedure.... contact me if you'd like to look up the doctor's website...
... check out my blog.... i am just trying to get it organized...

http://realitycheck2gether.blogspot.com/

this year has been busy and productive .... but I have been hesitant to talk much about going through all of this....
My hair was down to my waist... lost it all two weeks in to chemo.... it is about two inches long now.... I followed all the doctors orders taking the steroids , antihistamines and anti-nausia meds throughout.... other than hair loss... you would not know I was in treatment.... I think I should have rested more but that is tough to do when so many people depend on you... you have an 82 year old Mom, sons and a 2 year old grandson that I am the primary caregiver for etc.... they kept me knowing what I was FIGHTING FOR, LIVING FOR, and WHAT IS IMPORTANT IN LIFE !!!
I just had my followup bone and CT Scans.... and I feel fantastic.... I picked up the CD with all my tests... I couldn't open the CD on my computer, but I did get to read the Bone Scan report saying that my bones showed no abnormal activity... contact me anytime !
GOOD LUCK and tons of prayers to you !!!
janet
 
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pelusitadered responded:
Hi Lindsey:

The way a double mastectomy has been explained to me, is that unless you have chemo and radiation, but you shouldn't be that sick. Some pain, but that should be about it. I was found to have DCIS (pre-cancerous condition) also, but no history bc in my family that I know of. I've had two lumpectomies in my left breast. That's where the DCIS was found. I stopped taking tamoxifen and effexor, my choice and because of some of what my surgeon told me about tamoxifen (he's super!). I've been cancer free for three years now and I'm back to yearly mammograms. I don't expect to have a bi-lateral mastectomy until and if the DCIS is found again. If I were in your shoes, I would only send the kids w/your dh on a mini vacation if you get too sick, but only so that you can have plenty of rest. Otherwise, I think they should be fully aware of what is going on with you. Please try not to be too terrified. I think you'll do fine. God bless you and keep you under his wing!
 
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cindy12345678 responded:
Lindsey,

I am sorry that you have to go through this. But if you
can ward off cancer it could be a good choice. I had
bilateral cancer I had bi-lateral mastectomy. You will
be sore , but there will be pain meds. Ice helped alot
ask if you can use it.
I had expanders to implants, I even had nipples done.
They don't look too bad. So I fee pretty good
about how I look , and I am still here. The reconstruction
is a process, it takes time. You will get through this
please don't be scared.
Keep in touch and let us know how things are.
Cindy


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