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Mary Jo
02-03-2008, 03:50 PM
Hello everyone,

I have another question for you today. I'm not sure if this one can be answered here or not but am going to see.

As some of you may remember, I am contemplating DIEP Reconstruction. They will remove skin and fat from my abdomin (no muscle) to recontruct new breasts for me. I meet with the plastic surgeon tomorrow (God Willing as the weather sounds questionable for the trip tomorrow so may have to post pone) and have a list of questions for him. I recall reading something about recurrence and surgery here or elsewhere and wondered.............................could having breast reconstruction 2 1/2 years after the fact (presently at NED) cause cancer cells to "come alive." Naturally thinking of this is absolutely frightening and of course, if that could be true I'd NEVER consider it.

Just wondering if there was any medical proof one way or the other on this.

Again, thank you for being here for me.

Mary Jo

PinkGirl
02-03-2008, 05:03 PM
Hi marejo

There's a thread called Surgery New Mets started by havaj. I think Sheila posted that her recurrence was 3 months after reconstruction surgery.

penelope
02-03-2008, 05:06 PM
marejo,
I had a total of 7 surgeries since I was diagnosed. By all indications I am still ned.

I think you should go for it. And by the way, I also had diep and very happy with the results. I say go for it.

Mary Jo
02-03-2008, 05:20 PM
Thank you Penelope.....I'd be interested in speaking further with you about your DIEP if you wouldn't mind. Could you send me a private message explaining how long after mastectomy you had your diep .... did you have unilateral or bilater diep (I will have bilateral) ...... where did you have your surgery... and anything else you'd like to share. Thank you....

Hi Pink - Yes, I do remember Sheila saying that she had a recurrence shortly after her reconstruction. I wonder how long from orginal diagnosis Sheila had her surgery and then recurrence?

Thanks ladies........

Mary Jo

penelope
02-03-2008, 06:05 PM
Sure I would be happy too. I'll send it now.

goops
02-03-2008, 07:17 PM
I feel really dumb asking this but what is NED?

Mary Jo
02-03-2008, 07:23 PM
Hi "goops"

NEVER feel "dumb" - I mean - hey, you're talking to Mrs. Dumbo.....hahahahahahahahaha - just kidding - I'm not - JUST a bit slow at timeshttp://her2support.org/vbulletin/images/icons/icon7.gif SERIOUSLY now, NED stands for "no evidence of disease."

Hugs to you.

Mary Jo

goops
02-03-2008, 10:04 PM
Thank you Marejo, I have seen NED used by several people and I figured it was something like that - but I just couldn't figure out what words the letters stood for. :)

Joan M
02-04-2008, 07:41 PM
Penelope,

I had immediate DIEP flap reconstruction.

About two months after I found a tiny nodule under the skin, which was the breast cancer. I wrote about this recently on a thread here.

It's never been clear to me whether the nodule was from the skin-sparig masctectomy given to faciliate DIEP flap reconstruction, or whether it was from the core biopsy I had. The nodule was right under the scar from the biopsy. It was removed, and I haven't had any problems since. That was over three years ago.

Joan

Faith in Him
02-04-2008, 08:43 PM
Hi Mary Jo,

I am just checking in with you to see how your appointment went today. Please know I am praying for you as you go through this decision making process.

Wishing you abundant blessings.

Hugs
Tonya

Bev
02-04-2008, 09:43 PM
Hi Mary Jo.

You might try asking the nurse, (Liliann I think) at the John Hopkins BC website. They do favor dieps, so I don't know if the response is completely unbiassed, but the response will be prompt and informative. BB

harrie
02-04-2008, 10:57 PM
Joan, that is very amazing about the nodule post DIEP. And 3 Yrs...that is GREAT!!! I am happy for you.

MaryJo, I hope your consultation went well for you.

Maryanne (harrie)

Mary Jo
02-05-2008, 05:04 AM
Hello everyone,

Thank you for asking about my consultation and yes, it did go well. Dr. John Hijjawi is very knowledgeable in DIEP reconstruction and actually trained in Belgium under the man who invented the procedure. Total he has done 145 DIEP procedures with only 1 failure and that was to a woman who had lymphoma and heavy doses of radiation as a child which caused some issues with her blood flow etc. I'm not exactly sure of the terms he used etc., but that was the only failure. We saw pictures of is work and talked in length about everything.

Bev, I have been following Lilli's "ask the expert" section at the Johns Hopkins site and read her opinions on who should do your DIEP. She says anyone who has done less than 120 should not be considered. We did talk about Johns Hopkins, NOLA and other places with Dr. Hijjawi and he strongly recommended a second opinion - however, being that Dr. Hijjawi is "right in my backyard" is very qualified, had extensive training and had only 1 failed DIEP I feel that I may decide to have the surgery with him. I don't want to travel to another state - live in a hotel for a few weeks etc. If that were the case, I wouldn't go ahead with the procedure.

So, at this point, it looks like I will follow through. I wouldn't have the surgery until June because I am off in the summer. I'm excited about it and hesitant all at the same time (normal I know) so we'll just pray about it - and see what June brings.

Again, thanks for asking. Love to you.

Mary Jo

Becky
02-05-2008, 06:22 AM
Mary Jo

What do you mean by less than 120?

Thanks

Mary Jo
02-05-2008, 09:03 AM
Becky,

I meant that if Dr. John Hijjawi had done less than 120 DIEP procedures she wouldn't consider him to do the DIEP procedure.

Mary Jo

Karen W
02-05-2008, 09:22 AM
Mary Jo,

My friend who at the time of dx was stage III with matted lymph nodes, had DIEP reconstruction about 18 months after dx and she is doing great. She just celebrated three years NED.

Having said all of the above, I think there is a theory about inflammation and cancer (Becky or Lani would probably know more about this then I do). However, I don't think you should let that stop you from having surgery. Do you take Omega 3's or turmeric? Both are natural anti inflammatory. I take both of them everyday.

Best of luck with your surgery.

Karen

Lauriesh
02-05-2008, 12:49 PM
Hi Mary jo, One other question you will want to ask this dr., if you haven't already, is what % of the time does he have to do a tram flap instead of a diep when he is in surgery. I am from mn, and I ended up going to Nola because the drs here gave me a % of the time that they ended up doing a tram, when they started doing a diep. One dr was at 50% of the time. My understanding is that the less experienced, the higher %.

By the way, I am 1 1/2 years out from my surgery and I am so happy that I decided to do it.

Good Luck!

Laurie
Diagnosed 3/05 at age 37
stage 2b

Mary Jo
02-05-2008, 01:05 PM
Hi Laurie,

I'm not sure I'm following you. The DIEP procedure does not remove the muscle but the tram procedure does. Why would he have to remove the muscle? We did talk about both options and he said if I got a second opinion and was told they wanted to do a tram on me he felt that would not be a good opinion as he said he would never do that. He said I was a good candidate for DIEP - he listened to my artery in my abdomen which sounded good and before the procedure is done I will have a special kind of CT scan of abdomen to find this artery before the surgery. He says that saves time while in surgery knowing exactly where this artery is.

Anyway, please explain further and thank you.

Mary Jo

P.S. Sorry for the jumbled paragraph above. I don't think I explained myself very well.

Lauriesh
02-05-2008, 03:23 PM
When I met with the supposedly two top diep drs in mn (one in minneapolis and one at mayo) they both told me that there is a slight chance that once they are in surgery and they actually see the blood vessels, sometimes it is neccessary to do a tram instead. they make it sound like it is no big deal, like we will just take a small piece of muscle, if the vessels aren't adequate, but in reality they are doing a tram. So you could go in expecting a diep and end up with a tram. One of these drs even told me that if I had a dr tell me that he can do a diep 100 % of the time he is lying.
I found out, from nola, that this is usually a sign of inexperience. So the more experience they have, the less chance of it occurring. Nola made it very clear that they would not take any muscle, no matter what my blood vessels looked like when they got into surgery.
I would want to just confirm with your doc, if you don't want a tram, that he can perform the diep 100% of the time.

Laurie

penelope
02-05-2008, 05:24 PM
My doctor told me that there was no chance that I would have a tram...and I didn't. In fact I had an even less invasive procedure than diep on one side called a siea.

I have been told exactly the same as the previous poster...that some doctors just don't have the experience and so they wind up converting to a tram in surgery.

Mary Jo
02-05-2008, 05:27 PM
Thank you Laurie for your explanation. Although I feel we did cover this topic it wasn't in the way you are talking so I will cover it again when we meet in 2 months.

Thank you,

Mary Jo

harrie
02-05-2008, 11:24 PM
For those of you who had the DIEP flap, how long did the surgery take? I am presuming most of you did not have the mastectomy at the same time and was it a bilateral DIEP?
Maryanne

Lauriesh
02-06-2008, 08:52 PM
My surgery was 8 hours. I had a unilateral diep and a reduction on the other side. I had my surgery at Nola, where there are two drs who are a team, so it cuts down on the length of the surgery.

Laurie

Joan M
02-06-2008, 09:36 PM
Mary Jo,

I'm glad your consultation went well!

You've really researched dieb flaps, which is great.

I was such a babe in the woods when I had mine done. My breast surgeon mentioned reconstruction, told me the difference between a tram flap and a diep flap and recommended a surgeon who did diep flaps (Dr. Alex Keller).

The doctor said he never did tram flaps anymore and that if during surgery he found for some reason that he couldn't do a diep flap, he didn't do any flap.

The day before the surgery he listened to the arteries in my abdomen and marked my abdomen and breast with a marker. My abdomen looked like a Super Bowl game plan when he was finished.

The surgery can take between 6 and 12 hours. My was six hours. The doctor said afterward that my surgery was easy.

I was very pleased with the results.

Joan

harrie
02-06-2008, 11:29 PM
My initial experience was a lot like Joan's. My surgical oncologist, who I absolutely loved and trusted, also explained the TRAM vs the DIEP. She recommended the DIEP for my lifestyle and recommeded who I should go to for the procedure. She set up the apt for me while I was in town (CA), and after the consult with that plastic surgeon, I knew that is what I wanted.
My surgery which was a bilat mastectomy and the DIEP flap reconstruction took 17 hrs! It took a lot longer because I had radiation in the past and that complicated the procedure somewhat. But it all turned out very successful in the end.
Maryanne

theresaw
02-07-2008, 03:59 PM
what is the difference between a diep and a tram, I had the tram. Is the only difference removing muscle versus fat? I had my lower pouch removed to do the reconstruction and I love the fact that I got a tummy tuck in the process, so someone please help me understand what the difference is. Thanks

Mary Jo
02-07-2008, 04:12 PM
That is what the difference is Theresa. The DIEP you only use skin and fat. The Tram uses skin, fat and muscle.

Mary Jo

theresaw
02-07-2008, 04:46 PM
Thanks MaryJo,
My surgeon didn't use skin, he just put the muscle under my skin where my breast was. He actually tunnel up thru my stomach.

harrie
02-07-2008, 11:14 PM
The other difference between a TRAM and DIEP is that with the TRAM the vessels are tethered up to the breasts. There is no cutting and reconnecting of the vessels. And you are correct, the TRAM includes the use of the muscle which the DIEP does not and therefore the rehab is much faster with the DIEP. Getting back to the vessels... the DIEP is based on the deep inferior epigastic artery and vein. This artery and vein is cut and reattached to supply blood to the reconstruced area. It is a very highly technical procedure that not many physicians are qualified to preform.
My plastic surgeon did an amazing job. If you know of anyone in California interested in the DIEP, I would recommend a consult with him without hesitation.
Maryanne