Brand New to this

Anonymous

Brand New to this

Fairchild

This is my first post in this site. I've adjusted to diagnosis with IDC and ILC, one in each breast. What I'm struggling with is what kind of reconstruction to do, and I'm tied in knots about it.

In my city they only do implants. I could drive to NOLA and see about the DIEP procedure. There are pros and cons to both.

For example: If I go to NOLA, I would have to submit all my medical records and imaging, and I don't know how to do that. I'd need to stay with one of my brothers until I could drive back, but they do have a place for me, even if brothers aren't the best care-givers. But I'm really, really worried about the additional wear and tear on my body. I'm 61, have diabetes, type 2, and HTN, both well-controlled, but still. I also have a severe pain condition called complex regional pain syndrome that arose when I received an amputation during my first run with cancer 2 decades ago. The pain syndrome goes up the length of my ulnar nerve, so that it is affected by anything affecting my L armpit. I'm nervous about the mastectomies affecting the pain, and the more pain I experience in general, the more my L arm hurts, to the point that it's uncontrollable.

I've heard that the DIEP procedure is just much more invasive, and I'm worried about putting my body through it. I'm also worried about coordination of services and followup if I have surgery out of town. At the same time, what I've read suggests that this is a much preferred method of reconstruction, and somehow, as an aging hippie, it does seem very strange to me to have implants in my chest. Not something I ever thought I would want to do, you know?

So is this DIEP surgery as difficult as they say? How long is the recovery in your experience? How severe is the pain? How do they manage it? How do they manage to coordinate care after the initial mastectomy? And if I decided to have implants for now, could I revise that decision after my surgery if they just continued to feel foreign and weird in my body?

In case it matters-- I had a biopsy this week of an additional spot that showed cancer in a lymph node in my R breast. I've read that this increases the odds of my having lymph node involvement on the R side. Scary.

THANKS!

Meow13

DIEP was a piece of cake for me. There is very little pain but wow it is a change. I felt many strange sensations getting used to things. Mine was sore at the abdomen incision site for a couple weeks. I got away with tylenol pm at night and advil and tylenol during the day. I took about 6 weeks off work. I healed well. My health was excellent at the time of surgery, bmi about 21.5. Slowly I started to exercise again. I have heard horror stories and good stories. I count myself lucky results were excellent. I was 53 years old in excellent health.

I wanted to add I had only left side which has got to be easier than both sides. I usually sleep on my side and I was able to sleep ok.

Lula73

On the imaging and medical records transfer...

NOLA gives you a release of records authorization that you fill out and sign. Then they take care of getting copies of your records. That’s it. Easy peasy. they will also request photos of you from the front and sides. You will email those to them.

So is this DIEP surgery as difficult as they say?

It’s not as quick as implants, but it’s not like you’re having open abdominal or back surgery either. no muscles are cut through at all. That makes a huge difference for recovery. I had my BMX with immediate DIEP on a Tuesday, released from hospital on Friday, went to lunch on the way back to the condo we rented in NOLA. Spent the next couple days at the condo, then started to get out & about. I even walked a block to enjoy the Marci gras parade. Another day we walked all up and down the main strip. Flew home and took it easy for a couple more weeks then started doing more: driving, cooking, etc.

How long is the recovery in your experience?

About 1 week for short outings, 4 weeks to drive, 6-8 weeks before going back to work, about 12 weeks to feel like your self again (you’re really at about 85%).

How severe is the pain? How do they manage it?

The first night and next day I used the pain pump (dilaudid) pretty frequently. Then switched over to Norco (pill) then Advil. NOLA does a really good job managing pain. The trick is to stay ahead of it vs waiting until you need the pain relief. I took 2 Norco every 4-6 hours round the click for the first week out of the hospital. Then backed down to 1 every 4-6hrs with 2 at bedtime, then just Advil.

How do they manage care after initial mastectomy?

At NOLA they do the DIEP during the same surgery as mastectomy whenever they can. So you go in with breasts and come back out with breasts. One surgery for 3 procedures (mx, tissue harvest, tissue transplant). You’re in the hospital for 3 nights/4 days. Released and have to stay in the area for another 3-4 days until you have your post-op visit and then you are cleared to go home. Note you will not be driving yourself or flying by yourself...a companion is required. You can call anytime if you feel there is an issue. The nurses from the center call you at least once a week to check in as well. Most issues are minor and are able to be handled via phone and email including sending photos of the issue when needed. The nurses make sure you have been taught how to change dressings, proper way to shower, etc before you leave the hospital.

And if I decided to have implants for now, could I revise that decision after my surgery if they just continued to feel foreign and weird in my body?

Yes they can, however, if you’re sure you want warm, soft breasts that look and feel natural, why do implants first and end up having at least 1-2 additional surgeries? Plus weekly appointments for tissue expander fills in between surgeries? And those tissue expanders/implants can result in chest wall animation when you switch out for DIEP. Also, you mentioned you are 61. Medicare is approaching in 4 short years. Medicare can complicate the ability to be approved for recon without having to pay a fortune out of pocket. Time is of the essence. If it was me, I would hedge my bets and go DIEP vs chancing with implants and likely having to fight to have them removed and a different type of recon done. 4 years is not that long.

Hope this helps! Feel free to ask any questions!

Meow13

If you choose implants look into aeroform I think it is. I have heard many rave about this. You actually pump to inflate expander. So you can do it seversl times a day taking the expansion pain out of the process. You can't over fill on it. And the results are acheived much faster.

https://community.breastcancer.org/forum/44/topics...

Fairchild

Thanks! I'll ask the plastic surgeon about them.....

Fairchild

Lula, Thanks for the info-- that was exactly what I needed. I'm going to talk to my pain doctor this week to see if he has any read on whether I could tolerate the more invasive surgery as well, given that I already have a pain syndrome from my last cancer surgery, when I was about 45. Did you have any medical complications that could impact the surgery? I have type 2 diabetes, well-controlled, and hypertension, also well-controlled. Don't know how much these may affect recovery.