Prophylactic bi-mastectomy scheduled, terrified

I only had one mast, but when friends and family left me and I was being wheeled into the surgery, I almost jumped off the table and RAN!!!!! I was told by the nurse just before going into the OR that I could have a shot that would work quickly to relieve ny anxiety. She said the nurses could have given it to me before my support team left. If I had known that I would have been able to sail through the surgery as I, too, knew I was doing the right thing. Hugs to you and a little prayer ... you'll be OK.

Anne,
I had a bilateral mastectomy with immediate DIEP about 3 weeks ago. It's the reconstruction that makes the surgery difficult - not the actual mastectomy. Expander surgery is easier than the tissue transfer so some of the gals with that experience should pipe in. I wouldn't worry about the drains - they're just an annoyance. Nothing to be afraid of. Just empty and record. My advice is to make sure you have enough help at home. I'm sure you figured out what you want to tell the kids. Also, my friends really helped - they're still bringing me dinner.
Best of luck.
Jenny J.

Anne,

Take comfort in the fact that your current anxiety is normal. It's hell waiting for a surgery like this. If you need anti-anxiety meds or sleeping aids in the coming weeks, I'd recommend talking to your surgeon about it. At the very least get a sleeping pill for the night before surgery so that you go into it well-rested. They're used to dealing with these pre-surgery jitters and should be able to help you out.

Mary

I had bilateral mastectomies with expander surgery 9 days ago. Don't be terrified. I have been surprised how well things have gone. I had high grade DCIS in my right breast and my left breast turned out to have some atypical changes that they found during pathology. As far as how well things have progressed: I had surgery on Thursday afternoon (was out of the OR at 4:30 p.m. I spent the night in the hospital and went home Friday afternoon. They didn't have to push me out the door...(I was ready to go!) My PS injected about 100 mls in each expander during surgery. When I woke up from surgery I definitely felt pressure on my sternum. No nausea from surgery. Ate a partial dinner Thursday night. I had an On-Q pain pump in place over the weekend and that was taken out on the Monday after surgery. I was able to go off hydrocodone (prescription pain medication) by Saturday night/Sunday morning following surgery.

I requested that my PS use something called "Alloderm" on the lower third of each breast for added support (even though I'm not that big (was a "B" prior to surgery).

The one thing I learned that I think everyone should ask for prior to a sentinel node biopsy is a cream called "EMLA". It's 2.5% lidocaine and 2.5% prilocaine cream. I put it on my breast 1.5-2 hours prior to surgery and put saran wrap over my breast because it needs an occlusive dressing to work. When the doctor did the isotope injection I DIDN'T FEEL IT!! I had been told that this was a painful part of the whole process. The technician and doctor were very impressed and want to make it part of the normal pre-SNB procedure.

I had my drains out two days ago (which I thought was painful) and am having my first expansion next Friday.

The worst part of the whole thing has been not being able to take a shower until the drains came out. Also, you will definitely not be able to lift or press down on anything for at least several weeks. (Another thing I have problems with is opening heavy doors.) You'll need help lifting if you have children.

Hope this helps! Nine days out and I feel pretty darn good.

Anne,

I've been on this board for 10 months, and the overwhelming majority say that the surgery/recovery wasn't nearly as bad as they feared. But the waiting is tough.

Get some help with the kids for a week or so, and you'll be okay. Definitely talk with your doc about lifting and other restrictions so you can plan ahead.

Mary

I had PBM on June 1 with the recon expanders. As the others said the time between April 27 (diagnosis of dcis right) and the time of surgery was like going through hell. I was second guessing myself if I was doing the right thing. (ADH in both breast 2 times past two years). The morning of surgery was so hectic that I did not have time to get nervous. Came through with flying colors. Nurses in recovery room said that I told them I don't feel as bad as I had expected to. I came out with 4 drains (two on each side), and 200 cc in my expanders.
my PS removed 1 drain from each side 1 week after surgery and the remaining 2 a week later, he also removed the sutures and gave me a 60cc fill. the fills are more of an inconvience, feeling the tight pressure after each fill for about 4-5 days just in time to go back in for more.
Find some soft front-closure sports/leisure bras. they are the best thing to wear after surgery.

Just re-read your first comment. I had surgery in Cleveland Clinic in 1971, they were great then, and they are still one of the best clinics in Ohio.

Hi Anne! I too, applaud your decision as I am 10 days out from a right prophylactic mast and lat flap recon with expander.
I thought I was just getting a proph. mastectomy, but came to find out that the breast they removed was filled with pre-cancerous cells that would have become cancer within the next two years. My oncologist AND my surgeon were practically jumping for joy that they caught this early and removed it. I can't tell you what a relief it was to hear this. My sister just had a recurrence, and it's been really hard for her up to this point.
I would MUCH rather have a mastectomy and whatever goes with it, than go through that again.

I was supposed to have a bi-lateral reconstruction, but because of mix-ups, ended up with just the right breast. I have to say that from what I heard from the nurses, and the experience I now have recovering from this last surgery, I'm very happy that I did not have the bi-lateral. I'm at least able to do things with my left arm (lifting, carrying, etc....limited, but I can do SOMETHING). I don't know how women do it at the same time. I can barely stop myself from doing things with my right arm, and I have my sister and husband here to help, and I have no kids.

My sister being here has been the biggest godsend of all. Even though she has been in severe pain from her tumor, she has been able to drive me to my doctor appointments, grocery shopping, and even to a movie last night! I plan on going back to help her through her chemo, which is the very least I could do for her since I love her so much.

As far as the physical symptoms for me....I can't stand my drain, but it's the one in my back from my latissimus flap. It hurts! (but controllable with pain meds). My first two from my mastectomy were removed within days of leaving the hospital. I'm not sure why some drain more than others (I'll have to post it in the forum!)
I have been able to shower with my drains (even did it in the hospital with the nurse's blessing). Other than that, the expander is uncomfortable, but necessary (like the drains). I'll grin and bear it!
My next surgery for my transfer and my left breast (hopefully DIEP this time) is for November 5. It will be a rough week, but hopefully I'll be able to use my right hand this time and give my new left breast time to heal.

Good luck to you, and let us know if you have any other questions! Let us know how you are doing, too. I'm sure since you've armed yourself with so much knowledge, you will make the absolute best decision possible.

xoxoxoxo,

mitzi

Hi everyone I love this site! I will also be having the PBM w/ DIEP on August 7, it has been a process just getting the date. My pre op appointment is 26 July, my question would be what are some things I should ask at that appointment? What should I take with me to the hospital, and have after my surgery. I don’t like the side effects of the anesthesia. I was told to expect to be in surgery several hours. And what is the average hospital stay with a PBM/DIEP

University Hospital UT Health San