PAP vs. DIEP (my experience)
Hi all. This is Morgaine. One week ago i had a mastectompy/pap done on my right breast in NYC. My reconstruction is being done by Dr. Levine (breast surgeon was Dr. Wellner).
My history: Four years ago, in late 2007, I had mastectomy/SIEA flap on left breast after DCIS diagnosis. I previously had 6 weeks of rads to left breast in 2006 plus three lumpectomies. Mastectomy, SIEA flap (DIEP) was performed by Dr. J/Dr. Song at U of Chicago in late 2007 (to left breast). Also, my sister and aunt have both passed away from breast cancer. In October, I was again diagnosed with DCIS but this time to right breast. No rads or lumpectomies to right breast.
So now I've had both surgeries and I must say that the pap was MUCH EASIER. I stopped taking any pain meds, outside of motrin, the day after surgery. Pap surgery, including the mastectomy, was six hours and I wasn't sick afterwards. Using the toilet has not/is not hard and sitting is fine. I've been walking a lot (I live in NYC and that is unavoidable). The swelling is not as bad as DIEP four years ago. There aren't many complications so far but I'm only one week out. My only pain? When I have to bend to scoop out the litter box or feed my cat, then the right foob hurts. Dr. Levine took out one of my drains today and I have one left in the leg. It will probably--hopefully--come out next week.
With the DIEP/SIEA flap, it was difficult to stand up straight but I did a few days after surgery. I also remember being very sick after the 10 hour event and I was on narcotic pain meds throughout my four days at U of Chicago. Consequently, I was very constipated after surgery. This time, I skipped the narcotic pain meds and it was much much easier (bowel movement the next day).
Also, the facilities were/are amazing here in NYC. The surgery was at the NY Eye and Ear hospital which made me leery. But hospital has it set up that the mastectomy/reconstruction patients have their own section of the hospital. I was in my own large room by myself which had a sleeper sofa, table, refrigerator and TV. My family, visiting from Chicago, was very comfortable. The nursing staff was also extremely attentive at NY Eye and Ear. In contrast, during my previous surgery, I had to spend the night in intensive care b/c U of C hospital couldn't find a room for me. That was hard.
Am I happy? So far, yes. I really liked U of Chicago and the care there but this time around, it was so much easier. This is just my input so far. Hopefully I haven't jinxed myself since I should be getting the lymph node results soon.
Comments
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Hey Morgaine,
WOW!!! I am so glad to hear from you again and to hear how well the PAP went for you! I have been wondering about you. I've been posting some on the thread you started called something like "Implants vs. Pap with Dr. Levine." I had bilateral NSM with Pap flap reconstructin on 12/26/11 and am very pleased so far, but by golly your experience sounds incredible....and I am so glad for you! Keep us posted as to how it goes. Also I would love if you could put me in contact with someone who is further along on their healing and recovery journey than you and me on the PAP. Questions come up now and then as I am navigating this and it would be cool to chat with someone 2 or more months out from surgery. Thanks for the update and wishing you well on your continued recovery!
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Hi Morgaine,
My name is Michelle and I am so glad i found you. I was wondering which surgery you had chosen I just completed my pre-op for Dr. Levine and was curious about your experience with him/NY Eye and Ear. I am so glad things are going well for you thus far.
Any advice on clothing to bring to the hospital as well as what you are wearing now. I had BMX Feb 2010 and had TE and eventually implants. An infection caused one implant to be removed on my radiated side. So it cannot be put back in, besides the other one has capsular contraction. I am scheduled for a PAP on both sides on Feb 6. I am very nervous so any advice, insight you can share is greatly appreciated. How long were you in the hospital? Did anyone stay with you?
Thanks,
Michelle -
Hi Michelle. Are you doing both legs or one? I only used one leg for the PAP and I'm sure that's why it was easier. There was a woman in the next room to me at NY Eye that had both legs for the PAP. She seemed okay. She complained about the girdles. I must admit that the worst part of the recovery was the girdles they give you at NY Eye. It was very hard to pee with those. The woman next door at NY Eye wore the girdles the whole time and got a rash. Luckily, I had bought some compression/spanx shorts before hand and showed them to Dr. Levine at the hospital. He let me wear those instead of the girdle. So I did. I ended up giving one of the "shorts" (the spanx one which was too tight for me) to the woman in the next room. The compression shorts made everything so much eaiser. I also bought some compression (Jockeys) shorts which I got at the intimate section at Nordstrom Rack (which is a few blocks away from the hospital).
I was in the hospital for 4 days. My family came during the day and left at night. They didn't really help that much when I was in the hospital. There wasn't much for them to do. But they did go out and buy me some more compression shorts.
I'm eight days out from surgery and the worst thing is: 1. the drain. I have one left in the leg and it's very annoying 2. the antibiotic that I must take. It makes me bloated and hurts my stomach. 3. the boredom. How much sitting on the sofa can a person do? I do not have children so I do have the luxury of sitting down when I'm tired.
Also, my leg is sore from the surgery and it's still hard to walk long distances. I'm very slow.
I found Dr. Levine to be very attentive. They had a doppler machine attached to my flap while in the hospital. One of the wires apparently wasn't working and the nurses couldn't get a strong signal. Dr. Levine returned at 8 pm at night to check on the flap after seeing me twice already that day. I was very impressed. At Chicago, there was a staff of residents and junior docs who were checking on me. My regular surgeon came a few times. In contrast, Dr. Levine saw me every day while I was at NY Ear, sometimes several times. He relied on the nurses but was pretty much hands on. Once again, this is my experience.
My advice to anyone doing the pap is to get off the narcotic pain meds as soon as possible and buy compression shorts before you go in.
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I think the difference in your hospital experience has a lot to do with the difference between teaching hospitals and non-teaching hospitals. University of Chicago is a teaching hospital, Eye & Ear is not.
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Great to hear from you, Morgaine. I am doing both legs. Thanks for the tips on the compression shorts. How much bigger did you buy them? And are you talking about "spanx" type of shorts, not exercise shorts? The exercise shorts would not be as tight. Is the point for them to be tight?
I've had drains several time and your right they are the worst part. I hope it comes out soon and I
hope you are feeling better each day.
Mchelle -
Yes, you are supposed to get shorts that are tight or compress. That's why they they told me to get the spanx shorts in my size. I did get Spanx (off of ebay) and thought they were too tight. However, the compressions shorts were fine.
Good luck, Michelle.
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Glad everything went well for you. dr Levine was my PS for my DIEP and I thought he was great. Dr. Wellner also. Hoping everything goes well for you as you recover.
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Which is a better hospital to go to? Also what about using Doctors that do surgery at the teaching hospital, but do not necessarily "teach" there?
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I think any doctor with privileges at a teaching hospital is obligated to "teach", meaning allowing residents to participate in the surgery, doing rounds, etc.
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I knew I'd jinx myself being so positive about the pap. My results were fine. DCIS very early stage, strong indicative of ER+/PR+. Doc says I don't need tamoxifen. So I'm happy with that.
However, the drain in my right leg is PAINFUL. I know drains are supposed to hurt but wow, I don't recall the drains for the DIEP hurting like this. Anyone have any ideas what I can do to minimize the pain?
Morgaine (now eating crow)
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Morgaine- have you tried taping the tube to your leg so it doesn't move? That's what made it hurt for me, the tube pulling against the large stitch that holds it in.
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that's not what hurts. It's the back of the thigh, where the drain is, that hurts. Can I ice it or something?
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Maybe if you try laying down not sitting on it will help. If you are that uncomfortable call the dr. I know I never want to do that but......
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I already did call the doctor. He said this sometimes happens and the area that has the drain gets irritated. I suggested icing the area and he said to try. So I did and it kinda sorta helped. I think maybe I've been too active. I will now lie down.
Since my posting my experience, I must say that it's weird speaking to the surgeon so much. I'm very used to speaking to nurses and usually find them very helpful. This time around I'm talking to the surgeon. I do feel a little inhibited and I'm surprised at myself.
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Glad you called the dr. At least you know there is nothing unusual going on. I know those drains serve a purpose, but they are so uncomfortable if you move around. I know you are bored, but try to take it easy. It's very hard to find the right balance between recovering and keeping up your strength. I wish you a restful night. Michelle
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Morgaine,
Be gentle on yourself and get good rest and sleep your body needs it. Glad you are talking with the Dr. too. Is the pain interior pain? When I had exterior pain, it helped to pad between the drain tube and my body (sterile pads -or someone posted she used handkerchiefs for this same purpose, and of course securing the lines via a girdle or compression as you know and someone else mentioned. And even choosing a different route for the exterior tubing as long as that is OK with your Dr. They had my drains coming out the bottom of my girdle and I asked to move them up to a waiste pouch. But if it is all interior pain then this may not help you at all. You have done amazing and I wish you well as you continue to heal!
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Stupid question...what is a PAP?!!!
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PAP = tissue taken from back upper thigh. Like IGAP but lower.
Not a stupid question, it isn't a common donor site for breast reconstruction. -
This is Morgaine. The drain still hurts but not nearly as badly. I realize that it's not the activity that is aggravating things but sitting on the drain. On Monday, I sat for nearly 8 hours on it and then it really really hurt. I am now trying various positions like sitting on pillows and putting some sort of pad on my leg.
Hopefully this will help.
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Hi. So it's 16 days after my surgery and I'm noticing a major improvement. Walking is much much easier and I'm totally faster. Also, the drain doesn't hurt nearly as much. The output is low enough that I will likely get it out early next week. Today is Saturday and I noticed major improvement and less drain pain two days ago (on Thursday).
As to pain, the right breast is sore and I'm shocked to say I do feel some nipple soreness (i had nipple sparing mx). The breast looks wonderful, even better than before surgery. I had MX/diep flap to left breast in 2007. As part of reconstruction, I got a lift to right breast that left ugly, ugly scars. Dr. Levine seems to have reduced that on the right breast (from what I can see now. there are still steri strips).
I can't wait to get this drain out.
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Hi. My drain partially came out today as I was walking. I tried several times to fix it but there was no suction. I called my Dr and he told me that there was a risk of infection if the drain was allowed to go "in and out." He told me to pull it out and I did. I put gauze on the wound.
Luckily, I've been producing less than 50 ML for the past few days so I was going to get it out early this week anyway. I've had the drain in over 2 weeks. Has this happened to ohers? I'm supposed to see the Dr this week.
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morgaine, don't be surprised if you develop a seroma--a collecti9on of fluid that has nowhere to go. Sometimes really heavy-duty compression can help prevent that. Not sure what your recommendations are for compression with PAP, and sometimes it has to be aspirated.
Good that your doc will see it this week!
But nice to have the darn thing out,no?
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OMG it's wonderful having the drain out! Unfortunately, it's also quite messy. Because the drain is gone, I can walk much much faster so today i went to the park. I did 1.2 miles in 1/2 hour which, of course, caused me to produce some fluid. Yuck.
I am heartened that my leg feels much better. Last week, I was saying that an elderly person on crutches could beat me. Not so anymore.
I am wearing compression shorts. My Dr says I have to wear for a month. This is annoying but tolerable.
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You Go Girl!
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You can do it.. I had hip drains for 8.5 weeks for GAP flap and that meant a girdle for 8 weeks also, then spanx for another week... it will be in your rear view mirror before you know it.
I have a question... Is the PAP scar unde the panty line? Or on the leg?
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It's on the leg. I had thought it was under the panty line but its more on the leg.
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Hi Morgaine and Stac:
I met with Dr. Levine yesterday for my markings. Ready for surgery on Monday! Did you find using the bathroom difficult? I,ve read some people purchased a female urinary device. (funnel) Do you think that would be beneficial?
Thanks,
Michelle
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I only found it difficult b/c of the stupid girdle they make you wear. It is...awkward to wear. However, I asked Dr. Levine if I could wear some compression shorts that I bought with me and he said yes. Once I switched into those--the day after surgery--it was much much better.
The woman in the room next door kept her girdle on the whole time in the hospital. She got a rash from it. I don't know how she did it.
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I wore my girdle for 8 weeks
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Michelle, I just saw your post here. Did you read the PMs I sent you by chance? To answer your question, the funnel is great - whether it is a medical, camping or kitchen one. I didn't find out about it until I was home for quite a while, but it sure does help. So Yes to the funnel for anyone having the PAP done. I think you are having your procedure today, so my thoughts and prayers are with you.
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