Bilateral mastectomy and DIEP flap reconstruction experiences

Posted by sandyjr @sandyjr, Mar 1 5:01am

I have had breast cancer twice and have had bilateral lumpectomies at different times. After finding out that I have a genetic mutation I have decided to have the bilateral mastectomy and diet flap reconstruction. Both my surgeon and my plastic surgeon have been very forthcoming with what to expect. I still have a few questions for them but figured I would ask about personal experiences to find out if there are more things that I should address. Did anyone have to have blood transfusions? I have been told I will be in intensive care for a day or two. What should I expect in intensive care? When will I be able to feel like I am “with it”? How long was it before you were up walking around? How long did you have drains in and how many did you have? What is your experience good or not? How long after going home was it before you could get back to doing your normal stuff? When were you able to drive again? Are there any tidbits of information that will make my experience easier?

Liked by wisco50

Sandy, you asked some great questions. I'm tagging @amy11559 @bomashisha @betsyk @jlms who have experience with DIEP surgery so they can share their experiences. In addition to getting the experiences of others who have been there (so valuable), I recommend you ask these same questions to your surgical team. Also be sure to ask what exercises you should do and how soon.

When will you have surgery?

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@colleenyoung

Sandy, you asked some great questions. I'm tagging @amy11559 @bomashisha @betsyk @jlms who have experience with DIEP surgery so they can share their experiences. In addition to getting the experiences of others who have been there (so valuable), I recommend you ask these same questions to your surgical team. Also be sure to ask what exercises you should do and how soon.

When will you have surgery?

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Surgery is scheduled for April 17. It was a little difficult getting the three Drs together….surgeon and two plastic surgeons. I am trying to get as much exercise as I can before then. Also, I am pretty scared, but have decided to ask the plastic surgeons if I can get the nipple tattoos and some fancy artwork too. It kinda gives me something to look forward to. The surgeon was a wealth of information unlike the first one I went to…in the same practice. I am meeting with the plastic surgeon on March 17, so am trying to get a list of questions together. Also, the surgeon wants an MRI which I will get this Thursday. While all this is going on, my daughter is pretty sick with crohn’s and PSC. I think that is helping to take my mind off my own stuff somewhat.

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I had this about 10 years ago. I worked out intensely about two months before to strengthen the core muscles. This helped a lot in the healing process. I remember waking up from this procedure and for me it was very difficult. It took about one week to start to feel human and I think it was close to two weeks before I could take a shower. Once you can walk push to do it. It is a long recovery, but in the end worth it. I never did get a nipple ratio and don’t really want them. Good luck!

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Good luck. Reconstruction was the most difficult thing in the entire process. Just take it easy and allow yourself time to heal.

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Hi, sandyjr. I had a complete bilateral mastectomy with DIEP reconstruction back in 2006. I had my surgery at Memorial Hospital in New Orleans and the surgeons who performed the reconstruction were Drs. Frank DellaCroce and Dr. Frank Sullivan. A surgeon who is no longer affiliated with their group because she moved did my mastectomy. All was done during the same surgery time, which took approximately 7-8 hours. I was taken in for surgery around 1:00 in the afternoon and really don't remember much until about a day and a half later. I did wake up several times but only for brief periods of time. (I had had one lumpectomy prior to this surgery and that was about a year and a half earlier. I chose to have genetic testing because of family history and did have a BRCA mutation. I then decided to go through with the preventive surgery in New Orleans.) I spent about 5 days in the hospital and then another week and a half in a hotel. I then flew home to Texas and it was about another week and a half before I started driving. I remember the worst pain was the day I had to get out of bed to go to the bathroom. But honestly, it was not nearly as bad as I had expected. I was very happy with my surgery results and most especially, with the doctors and their staff. I highly encourage you to research their group (Center for Restorative Breast Surgery in New Orleans) – they are absolutely amazing. I would probably say it was a good 2-3 months before I felt I was back to my old self. That is not to say I didn't feel much better and couldn't do anything. I'm looking at it as feeling pretty good about lifting things and going about my normal day-to-day activities. I hope this has helped you some and please don't hesitate to reply if you have more questions. It's been quite some time since I had my surgery, and I am sure things are way different now, but I will try my best to answer your questions.

Lisa B.

Liked by Tana

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I had bilateral mastectomies, but my Dr. preferred I heal first before implanting anything. Her opinion was not to stress the body with a foreign material right away. After a year, I decided not to have reconstruction but rather use bras holding prostheses. I’ve never regretted that decision.

Liked by trixie1313, elizm

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@basslakebabe19

I had bilateral mastectomies, but my Dr. preferred I heal first before implanting anything. Her opinion was not to stress the body with a foreign material right away. After a year, I decided not to have reconstruction but rather use bras holding prostheses. I’ve never regretted that decision.

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@basslakebabe19
I had partial mastectomies, but am quite flat now going from DDD down to about an A cup so I tell everyone my grades are getting better! I can only tell you the freedom I feel as I don't find the need to wear a bra and when I do, it's now a compression camisole. I found one at WearEase through my physical therapist. So silky feeling that I told her I actually feel like a real woman again.

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I do like your humorous "improving grades" outlook, which no doubt helps your overall outlook, Trixie!

Liked by trixie1313, wisco50

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@sandyjr

Surgery is scheduled for April 17. It was a little difficult getting the three Drs together….surgeon and two plastic surgeons. I am trying to get as much exercise as I can before then. Also, I am pretty scared, but have decided to ask the plastic surgeons if I can get the nipple tattoos and some fancy artwork too. It kinda gives me something to look forward to. The surgeon was a wealth of information unlike the first one I went to…in the same practice. I am meeting with the plastic surgeon on March 17, so am trying to get a list of questions together. Also, the surgeon wants an MRI which I will get this Thursday. While all this is going on, my daughter is pretty sick with crohn’s and PSC. I think that is helping to take my mind off my own stuff somewhat.

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Fancy artwork too – Around breast?

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I'm facing 1 mastectomy between the 20th and 27 of March. I've had Stem Cells and PRP for joints. Felt Rejuvenated after 2 weeks.
After I fractured hip (from v-ball and schloving dirt under tree) My recovery: Every med person, PT, Nurses etc. was amazed at my progress. Up and down a flight of stairs after a couple of day!
Was it the Stem Cells that made me Bionic or ?
What do you think about my getting either / Stem Cells and /or PRP at or b4 time of surgery?

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I will be having these surgeries in the near future (hopefully the corona virus will not delay it) and wonder how long ladies had their drains in and if there was anything…diet, exercise, ?….that would positively affect the timeline of that and healing.

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@sandyjr

I will be having these surgeries in the near future (hopefully the corona virus will not delay it) and wonder how long ladies had their drains in and if there was anything…diet, exercise, ?….that would positively affect the timeline of that and healing.

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Hi @sandyjr, I moved your message to this discussion that you already started about DIEP reconstruction. You ask great questions about how long drains stay in and how to prepare for recovery regarding diet and exercise. I'm confident that @trixie1313 @basslakebabe19 @bomashisha @cathyhand and @dianamiracle will have some great advice and experience to offer.

While we wait for others to chime in, here are some discussions that answer some of your questions:
– Exercise and Physical Activity after Breast Cancer Surgery https://connect.mayoclinic.org/discussion/exercise-and-physical-activity-after-breast-cancer-surgery/
– How Long Did You Have Your Drains in After Mastectomy? https://connect.mayoclinic.org/discussion/how-long-did-you-have-your-drains-in-after-mastectomy/
– What Are Your Best Tips for Before and After a Mastectomy? https://connect.mayoclinic.org/discussion/what-are-your-best-tips-for-before-and-after-a-mastectomy/
– Breast Surgery; any advice to prepare for surgery? https://connect.mayoclinic.org/discussion/breast-surgery-any-advice-to-prepare-for-surgery/
– Videos about Breast Cancer Surgery from Mayo Experts https://connect.mayoclinic.org/discussion/videos-about-breast-cancer-surgery-from-mayo-experts/

When is your surgery scheduled?

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@sandyjr

I will be having these surgeries in the near future (hopefully the corona virus will not delay it) and wonder how long ladies had their drains in and if there was anything…diet, exercise, ?….that would positively affect the timeline of that and healing.

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It's been a long time since I had these surgeries, but if I remember correctly, I had my drains in for about a week to 10 days.

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I had a unilateral DIEP flap in September 2019. My drains were in for one week. I had had an immediate implant with mastectomy in June 2019. I would say the acute recovery time was far more difficult but pain not an issue with DIEP flap. Subacute recovery easier than implant. There was a quicker recovery to activities such as driving, reaching, stretching. Please feel free to ask any other specific questions

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@sandyjr
I had drainage tubes for about 3 weeks – you measure each time the bulb fills and keep a record for the surgeon. The most difficult part was the first few days where my husband had to "strip and milk" the tubes for me and after that I was able to. To start the "after breast surgery" class at Kaiser it was about 10 weeks before being allowed to do that. I would highly recommend if your facility has that to take advantage. The exercises help with core strength and strength training as the muscles around your chest wall will shrink and this helps with that as well as keep "cording" and lymphedema in control. When time has passed, I would also suggest therapeutic water exercise class which is very beneficial as well. You will be tired following surgery so do what you can do and don't feel bad about not keeping up with what you once did. For myself, I slept in an electric recliner and found that beneficial. All the best to you in this new journey in life.

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