MD Anderson Cancer Center ORLANDO - DIEP Reconstruction
I am planning a visit to Dr. Lee and Dr. Klein there in regard to the DIEP Flap reconstruction surgery and bilateral mastectomy. I was diagnosed with ILC in February and need a bilateral mastectomy. My surgeon here says Dr. Lee is the best. So, I am going to travel about a 2 hour car ride to meet with him.
Can anyone share their personal experience with this prodedure?
I would truly appreciate any input. I have been pretty strong to this point. But, now am getting very nervous. Thank you in advance!
God Bless,
Colette
Comments
-
I don't know about MD
I don't know about MD Anderson in Orlando, but the one in Houston is about the best there is for cancer research and treatment in Texas. I would expect the one in Orlando to be good too. You might see if you could go on the website and see if there is a patient testimonial page, or something. If there is not one for the facility, there may be one for your Dr. You might also look on the American Cancer Society website,or contact your local unit to see if they have any recommendations or comments about the facility. I also tend to think that a facility or Dr. must be reputable if my insurance covers them too, so you might check with your insurance.
I hope you are not going through all this alone. If you have anyone who can go with you, take them! Write down your questions and have someone go with you to help write down the answers (2 heads are better than one, especially when you are stressed or worried).
That's all I can think of, maybe someone else will be more helpful.
take care, seof0 -
MD Andersonseof said:I don't know about MD
I don't know about MD Anderson in Orlando, but the one in Houston is about the best there is for cancer research and treatment in Texas. I would expect the one in Orlando to be good too. You might see if you could go on the website and see if there is a patient testimonial page, or something. If there is not one for the facility, there may be one for your Dr. You might also look on the American Cancer Society website,or contact your local unit to see if they have any recommendations or comments about the facility. I also tend to think that a facility or Dr. must be reputable if my insurance covers them too, so you might check with your insurance.
I hope you are not going through all this alone. If you have anyone who can go with you, take them! Write down your questions and have someone go with you to help write down the answers (2 heads are better than one, especially when you are stressed or worried).
That's all I can think of, maybe someone else will be more helpful.
take care, seof
SEOF,
Thank you for your advise. I will definitely try all of your suggestions!
I am very blessed as far as having family support. I have 5 sisters and each and everyone of them are my best friends...they are all very supportive. Not to mention, my husband and two children!
Again, thanks...
Colette0 -
bilateral with DIEP
I'm three weeks out from surgery, bilateral mastectomies with DIEP reconstruction--17 hours of surgery, and then 2+ days in ICU so they could check blood flow every hour. I came home from the hospital on day 7.
I'm still really sore and stiff, but this recovery is better than the TRAM, because they don't take any muscle. (They move the muscle, so I've got some movement issues, but minor.)
My surgeons trained at MD Anderson in Houston. Sounds like your trip will be worth it.
There is a lot of information on the MD Anderson web page. Technical stuff that I didn't completely understand, but lots of information about what to expect along the way. Just Google to find it.
In Houston, they actually are doing some trials at saving the nipples. In 4-5 years, maybe that will be the norm!
Best of luck to you.
Lisa0 -
Mastectomy and ReconstructionLtalcott said:bilateral with DIEP
I'm three weeks out from surgery, bilateral mastectomies with DIEP reconstruction--17 hours of surgery, and then 2+ days in ICU so they could check blood flow every hour. I came home from the hospital on day 7.
I'm still really sore and stiff, but this recovery is better than the TRAM, because they don't take any muscle. (They move the muscle, so I've got some movement issues, but minor.)
My surgeons trained at MD Anderson in Houston. Sounds like your trip will be worth it.
There is a lot of information on the MD Anderson web page. Technical stuff that I didn't completely understand, but lots of information about what to expect along the way. Just Google to find it.
In Houston, they actually are doing some trials at saving the nipples. In 4-5 years, maybe that will be the norm!
Best of luck to you.
Lisa
Lisa,
Thank you so much for responding. You said you are only 3 weeks post-op? Wow, that is wonderful! You must be so relieved the surgery is finally over. I wish I could say the same.
I changed direction as far as where I will be having my surgery, because if insurance. I am originally from New York and my medical insurance is from NYC Retiremnt. So, I have no issues if I go to Memorial Sloan Kettering in New York. So, I am going to travel from Florida. I am concerned about how long I will have to stay in New York. You say you were in the hospital for 7 days. I have some questions you may be able to answer for me -
How long would you say you would have been able to fly on an airplane afterwards?
After getting to ICU and waking up from anesthesia, were you in much pain?
How did they manage your pain?
What was the worst part for you?
If you want to answer any of my questions, I would love to hear from you. If not, I will understand and respect your privacy.
I am just getting sooooooooooo nervous.
Thank you,
Colette0 -
after surgeryCoeBruno said:Mastectomy and Reconstruction
Lisa,
Thank you so much for responding. You said you are only 3 weeks post-op? Wow, that is wonderful! You must be so relieved the surgery is finally over. I wish I could say the same.
I changed direction as far as where I will be having my surgery, because if insurance. I am originally from New York and my medical insurance is from NYC Retiremnt. So, I have no issues if I go to Memorial Sloan Kettering in New York. So, I am going to travel from Florida. I am concerned about how long I will have to stay in New York. You say you were in the hospital for 7 days. I have some questions you may be able to answer for me -
How long would you say you would have been able to fly on an airplane afterwards?
After getting to ICU and waking up from anesthesia, were you in much pain?
How did they manage your pain?
What was the worst part for you?
If you want to answer any of my questions, I would love to hear from you. If not, I will understand and respect your privacy.
I am just getting sooooooooooo nervous.
Thank you,
Colette
Colette,
This is the perfect venue for me to share with you--I'm glad to.
I don't know about flying on an airplane--surely by three weeks you could, maybe even right out of the hospital. But what about follow-up care? I've had six different appointments with the plastic surgeon and the oncology surgeon since I've come home. Will the Sloan Kettering people turn you over to someone else?
I came home with 4 drains and a Q-ball (which is a pain med tool--4 tiny tubes that went from a large pencil-box sized machine into my belly, and then dripped something like lidocaine into the area.) All of these made dressing difficult--had to try to hide this stuff under the sweat suit. You sure didn't want anything to be pulled on accidently!
One drain and the Q-ball came out Friday, day nine after surgery. (I went home on Tuesday.) The second and third drain came out on the next Wednesday, day 14, and the final drain came out last Monday (which was day 19 post-surgery.) You have to take care of the drains 2-3 times a day, strip any fluid out of the tubes, empty and measure. (My queasy husband did a great job at this--too hard for me to reach!)
Pain control was a big deal in the hospital. They continually assessed it--on a 1-10 point scale with zero being no pain at all, and 10 being the worst you can imagine. I think I've been at a 2-3 most of the time. One or two meltdowns when things got away from me and up to a 4. Pain is so relative. If I had this kind of pain unexpectedly walking around at work, I'm sure it would be an 8, but....
I had the Q-ball, and I had a morphine pump that I had control of. I could give myself a dose every six minutes if I wanted to--and I did. The first day or so, I kept getting messages that the pump was locked, which meant it was less than six minutes since I had last given myself stuff--I still needed to wait. The next couple of days, I felt like I was giving myself much less, but they tell me it was the same. Which I assume means I gave it to myself every six minutes, but I was no longer trying every 4 minutes!
The morphine pump was discontinued on day 4 or 5, I think. They said I could still have a morphine injection if I needed it, but I'd have to ask them. They put me on Vicodene, which made me flip out--confusion, panic--so they switched to Tylenol #3. I paid attention to the clock and took the max every time I could. I wanted to medicate before I knew I needed it, and I think it worked.
I don't know what the worst part was--probably before surgery when I didn't have anything to do but wait. After surgery, I could do something--breathe into that thing to clear out my lungs, drink water to flush out stuff, walk to regain strength....
I had completely natural childbirth with both my children back in the 70's when that was the thing to do. There were a couple of times during all this that I used a focal point and breathing exercises, mostly when the plastic surgeon was removing the final stubborn drain.
(This is too long--I'll start another post.)
Lisa0 -
more informationLtalcott said:after surgery
Colette,
This is the perfect venue for me to share with you--I'm glad to.
I don't know about flying on an airplane--surely by three weeks you could, maybe even right out of the hospital. But what about follow-up care? I've had six different appointments with the plastic surgeon and the oncology surgeon since I've come home. Will the Sloan Kettering people turn you over to someone else?
I came home with 4 drains and a Q-ball (which is a pain med tool--4 tiny tubes that went from a large pencil-box sized machine into my belly, and then dripped something like lidocaine into the area.) All of these made dressing difficult--had to try to hide this stuff under the sweat suit. You sure didn't want anything to be pulled on accidently!
One drain and the Q-ball came out Friday, day nine after surgery. (I went home on Tuesday.) The second and third drain came out on the next Wednesday, day 14, and the final drain came out last Monday (which was day 19 post-surgery.) You have to take care of the drains 2-3 times a day, strip any fluid out of the tubes, empty and measure. (My queasy husband did a great job at this--too hard for me to reach!)
Pain control was a big deal in the hospital. They continually assessed it--on a 1-10 point scale with zero being no pain at all, and 10 being the worst you can imagine. I think I've been at a 2-3 most of the time. One or two meltdowns when things got away from me and up to a 4. Pain is so relative. If I had this kind of pain unexpectedly walking around at work, I'm sure it would be an 8, but....
I had the Q-ball, and I had a morphine pump that I had control of. I could give myself a dose every six minutes if I wanted to--and I did. The first day or so, I kept getting messages that the pump was locked, which meant it was less than six minutes since I had last given myself stuff--I still needed to wait. The next couple of days, I felt like I was giving myself much less, but they tell me it was the same. Which I assume means I gave it to myself every six minutes, but I was no longer trying every 4 minutes!
The morphine pump was discontinued on day 4 or 5, I think. They said I could still have a morphine injection if I needed it, but I'd have to ask them. They put me on Vicodene, which made me flip out--confusion, panic--so they switched to Tylenol #3. I paid attention to the clock and took the max every time I could. I wanted to medicate before I knew I needed it, and I think it worked.
I don't know what the worst part was--probably before surgery when I didn't have anything to do but wait. After surgery, I could do something--breathe into that thing to clear out my lungs, drink water to flush out stuff, walk to regain strength....
I had completely natural childbirth with both my children back in the 70's when that was the thing to do. There were a couple of times during all this that I used a focal point and breathing exercises, mostly when the plastic surgeon was removing the final stubborn drain.
(This is too long--I'll start another post.)
Lisa
You won't be able to stand upright after surgery, because you gradually need to stretch out the skin on your belly. (I don't know how to spell abdomain--so "belly") At first it's almost 90 degrees--all you can see is shoes on those first walks in the hospital hall. you can't look in the mirror 'cause you'd need to have eyes on the top of your head.
I'm still not upright--I think the skin stretching is causing a lot of the pain. Like bee stings in the area (and actually in the breasts too.)
I was switched to Celebrex on Friday, day 9. The codiene is very constipating and did give me a fuzzy head. I am not at all sure the Celebrex does anything. You know how you take something, try to relax and notice an improvement in 20-30 minutes, well....I do think the anti-inflamatory properties of the Celebrex help healing. (Lots of research on this.)
My husband wanted to take me home on Saturday/Sunday after Wednesday surgery--I was not at all ready! But by late Monday, I was at least thinking it might be okay, and it was okay when I came home on Tuesday early afternoon. I'm wearing a surgical bra--big thing that supports but doesn't mash. Also an abdom. binder. I'm short-waisted, and this thing is too tall for me, you don't want it up on the breasts, and it has to end at the top of your thighs or you can't really sit down. I'll wear these 24/7 for 4 weeks (and the doc said I might want the binder even after that!) I think I'll be really happy to get rid of the binder. I'm a princess-and-the-pea type gal--every little fold in the binder is irratating now, and velcro in pubic hair--regrowing pubic hair!--is awful. Velcro on any kind of skin is bad, in fact.
I can do everything I want by now--very slowly. That's a good thing. My husband has been great, but he isn't good at helping me smooth out folds or pad velcro--the stuff that doesn't matter to him. I shouldn't lift more than 10 pounds until after 6 weeks, but that's the only thing I've been told not to do. The plastic surgeon even said at the appointment on day 19 that I could drive if I felt okay to do that--he looked at my face after he told me that and said, oh, I guess you don't feel ready, then you shouldn't yet.
When I first got home from the hospital, I couldn't sit in the kitchen chair and slide up to the table--easily sliding chairs, normally. I couldn't put up the legs on the Laz-y-Boy recliner. I couldn't tolerate having my feet not on the floor--I'm 5'1, so my feet dangle in every chair in the house. So I tossed pillows on the floor to put my feet on. I could only pick something up if I did a deep knee bend at first, and only if it wasn't flat on the floor. I can pick up anything now, it just takes some concentration.
I do have pain and stiffness in my left arm. I asked the oncology surgeon about it. I was afraid I was getting lymphedema--but since they only did a sentinel node biopsy, I'm not supposed to be vulnerable to that. Turns out one of the nodes was buried under the pectoralis muscles of my chest on that side. They had someone standing on my right pulling with all his might on a retractor to lift the muscle so that they could get the node out. No wonder.... I'm walking my fingers up the wall, leaning over and dangling my arm in progressively bigger circles. I have a PT appt on 4/16--I'll probably have it all worked out by then.
I can't see my progress anymore really, but everyone else can. If I do too much, I feel like I'm coming down with the flu, even hot like I'm sure I have a temperature (which I haven't had since right after surgery, normal.)
Another log post--ask me more. I'm glad to share.
hugs (sideways, maybe!),
lisa0 -
notebookLtalcott said:more information
You won't be able to stand upright after surgery, because you gradually need to stretch out the skin on your belly. (I don't know how to spell abdomain--so "belly") At first it's almost 90 degrees--all you can see is shoes on those first walks in the hospital hall. you can't look in the mirror 'cause you'd need to have eyes on the top of your head.
I'm still not upright--I think the skin stretching is causing a lot of the pain. Like bee stings in the area (and actually in the breasts too.)
I was switched to Celebrex on Friday, day 9. The codiene is very constipating and did give me a fuzzy head. I am not at all sure the Celebrex does anything. You know how you take something, try to relax and notice an improvement in 20-30 minutes, well....I do think the anti-inflamatory properties of the Celebrex help healing. (Lots of research on this.)
My husband wanted to take me home on Saturday/Sunday after Wednesday surgery--I was not at all ready! But by late Monday, I was at least thinking it might be okay, and it was okay when I came home on Tuesday early afternoon. I'm wearing a surgical bra--big thing that supports but doesn't mash. Also an abdom. binder. I'm short-waisted, and this thing is too tall for me, you don't want it up on the breasts, and it has to end at the top of your thighs or you can't really sit down. I'll wear these 24/7 for 4 weeks (and the doc said I might want the binder even after that!) I think I'll be really happy to get rid of the binder. I'm a princess-and-the-pea type gal--every little fold in the binder is irratating now, and velcro in pubic hair--regrowing pubic hair!--is awful. Velcro on any kind of skin is bad, in fact.
I can do everything I want by now--very slowly. That's a good thing. My husband has been great, but he isn't good at helping me smooth out folds or pad velcro--the stuff that doesn't matter to him. I shouldn't lift more than 10 pounds until after 6 weeks, but that's the only thing I've been told not to do. The plastic surgeon even said at the appointment on day 19 that I could drive if I felt okay to do that--he looked at my face after he told me that and said, oh, I guess you don't feel ready, then you shouldn't yet.
When I first got home from the hospital, I couldn't sit in the kitchen chair and slide up to the table--easily sliding chairs, normally. I couldn't put up the legs on the Laz-y-Boy recliner. I couldn't tolerate having my feet not on the floor--I'm 5'1, so my feet dangle in every chair in the house. So I tossed pillows on the floor to put my feet on. I could only pick something up if I did a deep knee bend at first, and only if it wasn't flat on the floor. I can pick up anything now, it just takes some concentration.
I do have pain and stiffness in my left arm. I asked the oncology surgeon about it. I was afraid I was getting lymphedema--but since they only did a sentinel node biopsy, I'm not supposed to be vulnerable to that. Turns out one of the nodes was buried under the pectoralis muscles of my chest on that side. They had someone standing on my right pulling with all his might on a retractor to lift the muscle so that they could get the node out. No wonder.... I'm walking my fingers up the wall, leaning over and dangling my arm in progressively bigger circles. I have a PT appt on 4/16--I'll probably have it all worked out by then.
I can't see my progress anymore really, but everyone else can. If I do too much, I feel like I'm coming down with the flu, even hot like I'm sure I have a temperature (which I haven't had since right after surgery, normal.)
Another log post--ask me more. I'm glad to share.
hugs (sideways, maybe!),
lisa
Collete,
Start a notebook to document things. Chart when you found lump, had what mammo, ultrasound, biopsy, names of doctors (there are lots of them if you count the radiologist, anaestiaologist, ....) diagnosis, notes of what doctors told you, questions you want to make sure you get answered, names of nurses, techs, and so on.
Carry this with you at all times-with a pen!
I am keeping this kind of "fact" journal, and I'm also keeping a private "emotion" journal.
The fact journal also has pockets that I can keep important papers in: path report, paperwork from HR at work, the documentation of amount of fluid from the drains....
Lisa0 -
SurgeryLtalcott said:notebook
Collete,
Start a notebook to document things. Chart when you found lump, had what mammo, ultrasound, biopsy, names of doctors (there are lots of them if you count the radiologist, anaestiaologist, ....) diagnosis, notes of what doctors told you, questions you want to make sure you get answered, names of nurses, techs, and so on.
Carry this with you at all times-with a pen!
I am keeping this kind of "fact" journal, and I'm also keeping a private "emotion" journal.
The fact journal also has pockets that I can keep important papers in: path report, paperwork from HR at work, the documentation of amount of fluid from the drains....
Lisa
Lisa,
You are an angel sent from heaven to me! I don't know how to thank you for all that you've shared with me and all the advise you've given me.
I will be leaving for New York on April 4th. My appointments at Sloan Kettering are the 7th (with oncology surgeon) and 8th (with plastc surgeon) of April and you have given me so much insight. I now have important questions I can ask of them regarding my surgery and post-op.
Sounds like you and I have some things in common. I, too, have two children and I am only 5'0 feet tall...lol Both of us, obviously, like to stay organized and informed. The "fact journal" is a great idea!
I would like to keep in touch with you. I will add you to my friends list and keep you updated. I will pray that you continue to heal and keep yur chin high!
You have helped me and touched my heart more than you ever know!
Hugs,
Colette0 -
support in NYCoeBruno said:Surgery
Lisa,
You are an angel sent from heaven to me! I don't know how to thank you for all that you've shared with me and all the advise you've given me.
I will be leaving for New York on April 4th. My appointments at Sloan Kettering are the 7th (with oncology surgeon) and 8th (with plastc surgeon) of April and you have given me so much insight. I now have important questions I can ask of them regarding my surgery and post-op.
Sounds like you and I have some things in common. I, too, have two children and I am only 5'0 feet tall...lol Both of us, obviously, like to stay organized and informed. The "fact journal" is a great idea!
I would like to keep in touch with you. I will add you to my friends list and keep you updated. I will pray that you continue to heal and keep yur chin high!
You have helped me and touched my heart more than you ever know!
Hugs,
Colette
From some other other places you've posted, I see that you have support in NY. That makes a huge difference. My plastic surgeon said one reason not to do the DIEP reconstruction would be if a woman doesn't have help, because you are pretty unable to do things for a week or two.
I'm at 3 1/2 weeks, and I drove for the first time today (to the clinic and straight back!) I'm putting laundry in the machine, and transferring it to the dryer--one piece of clothing at a time. Lifting anything above my head is difficult, but feels exactly like the exercises I'm supposed to be doing, so (no weight!) I'm doing it. Like putting cereal boxes back up on the top cupboard. (not emptying the dishwasher--that stuff could break!)
Yes, do keep us up to date.
Lisa0
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