Skip to content
My WebMD Sign In, Sign Up
What to expect with Double Mastectomy?
avatar
Lindsey10430 posted:
Hello Ladies. Just joined this community and I'm so glad I found it! I am 26, married with 2 LO's. I found a fibroadinoma tumor at age 21, biopsy determined it was benign. A couple years later, it was painful so I had it removed 1.5 years ago. Pathology showed that I have LCIS (pre-cancerous cells). Also, my mom had pre-menopausal breast cancer at age 40. We both tested negative for the BRCA gene. Since the diagnosis, I have seen 2 breast cancer specialists, an oncologist, radiologists, and PCP's. I am not really a candidate for tamoxifen and I elected not to take it. Every doctor I've seen (and just about everyone else in my life) has highly recommended that I get the double mastectomy ASAP. My mom had the same tumor at the same age, same breast, so doctors believe there is a genetic component.

Bottom line is that I really don't want this surgery but I feel highly pressured to do the surgery ASAP. I will meet with the plastic surgeon in 2 weeks. I have a 2 & 6 year-old which is why I'm so nervous about the recovery. Since the diagnosis, I have basically put it off on the back burner and not really had the courage to research the matter much until recently.

I would love to hear about other people's experience with this surgery. How awful is the recovery? Can you really not lift your arms for 2 weeks? Are implants uncomfortable long term? Can you ever sleep on your stomach again? Is depression afterwards inevitable? Has anyone regretted having this surgery? These are just a few questions on the top of my head. Any feedback would be greatly apprecitated!! Thank you for reading my story.
Reply
 
avatar
judyfams responded:
Lindsey,
I am so sorry that you have to be going through this at such a very young age.
I did not have a mastectomy - I had a lumpectomy, but wanted to reply to your post.
With a diagnosis of LCIS - YOU DO NOT HAVE TO RUSH INTO A DECISION ABOUT HAVING A BILATERAL MASTECTOMY.
In my opinion you are feeling presssured into doing something you are not ready for. Please do research about the different types of reconstruction and call the ACS as they will put you in contact with other women who have had mastectomies and you can talk to them and ask any questions you want. If yu go o their website you can find the tab to talk with someone.
You are at risk, but do not have to rush into surgery. I would also recommend that you ask the hospital to give you the name of a mental health counselor that deals specifically with patients who are struggling with the idea of having a mastectomy.
Also there are many different types of reconstruction, some of which uses your own tissue so the reconstructed breast feels and looks similar to the natural breast.
I have done extensive research about reconstruction that I can email to you. If you would like a copy of my research, just click on my username in blue and that will take you to my profile which has my email address so you can contact me and I will send you all my research.
Please, please don't rush into anything until you feel comfortable with your decision. Do not make this decision to please other or o stop them from pressuring you.
I am sure other wonderful ladies here will respond to you soon. Please take some deep breaths and try to calm down so you can truly make the right decision for you!
Please come back and let us know how you are doing.
Much love,
Judy
 
avatar
BethBaggs responded:
Take Time to Breath, you should not feel pressure. When the right answer is presented you should come to a place of peace, sort of a light bulb moment that lets you know that's it. I agree with Judy that it sound like you are being pressured to do something you are not quite ready for. Do your research, maybe see a different doc. Just know that when you have the right answer, It will feel like the right answer.

Blessings
Beth
 
avatar
kiwiallright responded:
HI Lindsey

So sorry that you feel that the Dr's are pressuring you into having this surgery. I see that you have seen a radiologist, but have you seen a radiation oncologist?. I do not know a lot about your particular issue, but can you have radiation treatment - then see how that goes before removing your breasts. Research as much as you can about everything. Sometimes we have a choice and other times we do not. My first round of DC was at 46 yrs then again at 53 - choice was to remove one but I pushed for both to come off, I had the DIEP Flap procedure done a year after removal.
Re taking drugs, I did not take tamoxifen - because of its side effects.

After the removal of the breast, I did okay, lifting your arms can be a problem for a bit, but it all depends on the person. The type of reconstruction I had was good for recovery because she used my own fat from my tummy area and did not have to deal with implants. After the surgery the most pain I had was from my back as I could not stand up straight for ten days as it would pull all of the stitches so had to be careful with it all. As you have young children regardless of what procedure you have, my biggest recommendation is that you have family or friends with you for at least to week to help you with your young children, I had to have my grandchildren placed on my lap as I could not pick them up after the removal and I had to wait a few days before I could hold my new grandbaby because of the weight. But I held him not long after he was born.

Anyway good luck with your decision and not that I am an advocate of tamoxifin, I would maybe take that as an alternative to removal.

Good luck and take your time in making the decision.

Love to all

Mary
 
avatar
mary19192 responded:
I had a double Mastectomy. Surgery was a breeze. Healing time is not to long. Yes, for two weeks you can not pull the chest muscles or pull yourself out of a seated position without assistance or raise your arms. Those muscle need time to heal from surgery. The surgeron will tell you when you can start exercising the chest muscles with stretching. With the Expanders you will not be able to sleep on your stomach. You won't be able to carry anything over ten pounds for about two months. I slept in our recliner for about two months. The permenent implant I am sure and more comfortable then the Expanders. IF YOU CAN AVOID BREAST CANCER IT IS WORTH IT! Trust me Chemo is a million times worst then this surgery. You will have peace of mind in the end and will see your children grow up. I have a friend who is 32 and has a 4 year old and a 2 year old and she had breast cancer. Then it went to her spine then to her brain. She is on seisure medicine now. Had a double masticomy and brain surgery and Chemo for two years.
I am sure she would advise you to go ahead with the surgery.She is keeping her spirits up but she will not see her children grow up and they will miss having their mommy.
Do it for your children! May God Bless you.
 
avatar
TeranO responded:
Hi Lindsey,

I'm sorry you have to deal with all this with two kids. I wanted to let you know that surgery isn't that bad. I'm 28 and I had a bilateral Mastectomy last week. I have a nurse that checks on me twice a day and changes my drainage cups. They gave me pain killers for the soreness, and some anti- nausea meds. I can move my arms just fine; however I can't lift anything over 10lbs or push myself up with my arms. I can lift my arms over my head. The skin expanders are very solid. My husband and I joke that I have boobs of steel. I will adventually get silicone implants. My plastic surgeon is very much trying to make them look and feel as natural as she can. I also haven't had any depression yet. I think having good support groups goes a long way to preventing that. It sounds like you have a loving husband and two cute little kids that will stand by you through all of this. Also check with your local hospitals for support groups, check out the support groups at Cancer.ORG and you can check with your clergy aswell. You can get help to deal with the recovery and with child care.

Deciding to get the mastectomy was the hardest part for me.
I have familial history of breast cancer and am BRCA negative as well. When they caught my breast cancer it was already invasive. I decided, for myself, that it was worth a couple of hard years of treatment and surgery to be around for my husband and kids in the future.

You still have time to research and talk to different doctors. I suggest you use it. You may be eligiable for a lumpectomy which is way less invasive and is much less recovery time. It also sounds like you haven't found a doctor that is willing to listen to you. You need to find a Doctor you trust.

Just know that you are not alone. Teran


Helpful Tips

Candle Lighting Site
I located the Candle site!! It was apparently removed by WebMD but we can still access it and make use of it for each of us and for all our ... More
Was this Helpful?
1 of 1 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Breast Cancer Center