NOLA in September?
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I'm sure this was asked before but I wasn't really paying attention....
I just got my postcard from my radiologist telling me it's time to come in for my mammogram. First off, I'm very hesitant to have my firm new breasts squeezed into pancakes by that machine...but besides that -- is that what I should be doing? Mammograms? What about ultrasounds? MRI? What does everyone else do post mastectomy and reconstructions? How often?
Thanks for your help.
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Kathryn,
My breast surgeon locally said if I had a bilateral mx, that I would no longer need mammograms. I would NEVER let radiation near my new breasts. When I was 2 years out from dx, the rads oncologist suggested I do a breast MRI, and I thought that was a good idea to check lymph nodes and chest wall. All clear. The locak breast surgeon said I didn't need an MRI either. Just regular breast exams by the onc and my gyn. How about the rest of you?
I refuse to ever have a mammogram again. They were useless for me anyway, I had a "huge mass" and it was invisible to mammogram and ultrasound. What a waste of 15 years of boob squishing, AND the false sense of security that a negative mammogram meant I was okay. ugh. Besids, I now feel that compressing breast tissue and shooting radiation through it is a totally stupid idea. I believe it may actually cause trauma to the tissues, that can't be good. There needs to be a better screening technique. I am going to suggest my young daughters (18 and 21) get breast thermogram when they get a tad older.
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Amy you are correct. They can only use the tummy fat below your belly button. This is where the perforators are located to provide the needed blood supply for your flaps.. They can always lypo the fat above this area at stage 2.
Kathryn the standard of care from NOLA is follow up MRI after a mastectomy. I was sooooo happy to hear that. I really didn't want to have another mamogram again. My insurance paid for the procedure and it was taken as a baseline image. I don't plan on having any further follow up unless I detect any changes to my breasts.
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My oncologist recommends clinical breast exams only. I haven't had a mammogram or MRI in the four years since I was diagnosed. An MRI missed my cancer just a few weeks before I was diagnosed, so I don't really have a lot of faith in them at this point.
Kathryn, I once asked about ultrasound, and the radiologist told me that it's only for specific areas and isn't helpful for the entire breast.
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My onc and my BS both recommend once a year MRIs. I can't see any reason that would change after my DIEP. They are using tummy fat, not breast tissue. And I would never trust a mammogram again, either. I had a mammogram and a clinical breast exam one moth before my breast reduction. Everything appeared fine - I never felt a lump either. But when the PS cut in for the reduction, there was the cancer! So, I would never even consider a mammo. MRI might be better in some cases, but still not infallible. Still, I will continue to have them done. It's something at least.
So, I wish I was in better shape going into my DIEP next month, some of you seem to have been or are right now, pretty fit. But I am walking, trying to get in a couple of miles most days, and I continue to do my stretches from my physical therapist for my back pain. Well, it is what it is, and I will continue to do my best. But I also wondered, are there any additional things I should be doing food/nutrition-wise? I eat a fair amount of protein, which I know will help with the healing. I already take Vit D, C, B-12 and iron. Should I be increasing any of these? Anything else I should add or be doing? I haven't asked the docs. What do you all think?
sallym, have you been discharged? Hope you are doing well.
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Kaitsmom - They have you take double vitamins for, I think, the month prior to your surgery. It should be in the material they send you.
I haven't been on here in a while and just spent a looong time catching up! I hope Kim and Sally are recovering nicely and good luck Candysmom!
I thought only my husband just wore tennis shoes (except at work)!
Beverly - I have those mismatched nipples, too. One nipple-sparing and one a Dr. D. Design!
I had a good chuckle about all the ladies mooning over Dr. D. (and his shoes)!
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Kaitsmom - don't stress about not being in marathon-running form. I don't think the clinic said anything about exercise pre-surgery. It sounds like the walking and PT is perfect. I think you just don't want to be sedintary if you can help it. Eat well, but don't make yourself crazy over that either - a glass of wine a some chocolate couldn't hurt. In fact the night before the surgery Dr S encouraged me to relax and have a drink
I do think that keeping as calm as you can, and not sweating over too many things is the best thing you can do for yourself. Post-surgery you want to eat healthy and walk as much as you can. I think sometimes even people in great shape take awhile to heal and some of those who are not at the gym every day recuperate quickly. Do the best you can and you will end up doing great after the surgery.0 -
Totally second what Kathryn said. I didn't take any vitamins before or after surgery.
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No vitamins for me either. The center called me last week - surgery got moved up and I had revision #4 yesterday and now have, wait for it, nipples again!!
I am super excited!!!
I had my first revision down here in early August - it was hot, but some nice old navy cotton dresses hid drains and dom well and were comfortable.
I am another one recommended to get MRI - I have had a couple of spots of fat necrosis that did get mammo'd / ultrasounded but I fought it kicking and screaming since I am not enthusiastic about squeezing or irradiating my flap breasts. So they just mammo'd the area at the edge that was of concern. My onc also said MRI to check chest wall at the 2 year mark and forward.
In an unrelated question, Dr. D did send a small area of a rice grain sized subcutaneous nodule to path yesterday during revision #4 - here's hoping it is just a little bit of fat necrosis. Does anyone know how long it takes to get path results back from NOLA?
edited for post anesthesia brain spelling
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My BS said absolutely no mammograms. There is no longer any breast tissue if you had a BMX. Now if you only had a UMX you would have that one done because there is still breast tissue. A MRI can be done but my BS said that a manual breast exam every 6 months should be adequate as the most common place of return in the breast would be the skin or remaining lymphs.
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Both my surgeon and onc say no mammograms or MRIs-clinical breast exams only. I am another one who had a normal mammogram not so long before finding a good sized lump myself, so I am perfrectly happy with this recommendation, even being BRCA positive.
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Ladies, I'm confused. So have they changed the "Preparing for surgery" instructions in the pre-op info booklet since last year? It said we were to start taking multivitamins with C and iron twice daily "to improve general health prior to surgery."
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So today I saw my BS and was aking about MX and DIEP and what she thought was safest MX to remove the most risk of recurrance and she contradicted what Dr Allen said in NYC... He said his BS leaves fat and only takes breast tissue, so if your boob is a size 600, his BS takes 450 of tissue and and leaves 150 of fat, even up into the underarm... My local BS said that really can't be done with certainty.. and the safest thing to do is remove it all... So now I will go off to NOLA and hear what they say... I am sooo confused.
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Hi Ladies,
It has been awhile since I posted. I am now 2 years out and my oncologist would like me to have an MRI. I am status post SGAP with great results. I am a NOLA grad. Has anyone had an MRI since their surgery?
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I don't recall that requirement about the iron, but I already take iron because the chemo put me at severe anemia. I had my surgeries in 9/10 and 11/10.
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bdavis, have you ruled out implants as an option? I know you really do your research, just curious about your thoughts?
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I remember being told my BS tries to take all of the breast tissue but there is no guarantee or any way to get it all 100%.
With the option of NOLA and DIEP I can't even imagine choosing implants. However for me I had a lot of radiation so it wasn't an option to begin with.
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I think DIEP is a better option than implants, both for aestetics, and for longevity... My one concern now is that if to do the DIEP flap, fat that might normally be removed during a MX to ensure all breast tissue is removed, is not all removed to prep for DIEP, I worry that more breast tissue will be left behind than if I had something other than a DIEP flap.... Am I speaking in circles? I re-read what I am writing and not sure it makes sense...
So in essence, to do the DIEP flap (according to Dr Allen), his BS would leave fat and "just take breast tissue"... but my local BS is saying that to separate the two is impossible... so if the DIEP BS says he /she is taking just breast tissue and leaving fat, I fear they are also leaving breast tissue (more than they would than if they were not trying to separate)... Dr. Stolier is one of Dr Allen's BS sooo he is also one of the NOLA BS.
Am I being clear??
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I think I understand what you are saying. Reguardless of the reconstructive procedure, 100% of breast tissue can not be removed (unless they amputate from the waist up). Recall one of our sisters on the Jan site had reoccurance despite BMX. I do believe the DIEP is a great option, I have already had BMX and TEs, I kind of make a quick decision. I have been fortunate that things are going well for me with my choice, I also can always elect something different, if things change. Your are so smart to do your research and travel to a top rate institution for this surgery.
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I don't know if I'm understanding you correct, but I had no idea and don't believe they take muscle not at NOLA anyway. I think they take tissue only. Then use stomach tissue and fat from the belly or hip to rebuild. I think honestly, you're putting too much thought into this whole process and confusing yourself. Relax, and breathe
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Hi Christine... I do know that not all breast tissue can be removed no matter how hard they try BUT from my consult, it is their goal to leave fat (and in the process will undoubtedly leave breast tissue too), so if a BS was prepping for a TE, they may leave 1% of breast tissue, but in prep for a DIEP flap, they may leave 5%... So can a patient request for them not to do that?? Dr Allen said there were 2 reasons for this. 1) leaving fat enables better blood flow and 2) the less they remove, the less they need to replace.... Not sure I agree with the second reason at all... If I don't have enough ab fat, then take what they can and we'll deal with volume later.
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I'm a little confused about how subcutaneous fat can be enough to add volume.
I know there's a thin line between taking too little and too much. I think all you can do is make it clear to the BS that you want to remove as much breast tissue as possible without jeopardizng your reconstruction. Without doing the surgery yourself, that's all you can do.
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My very in-expert opinion here, but I think what jeskachi said about telling them to leave as much as possible might be your best bet. They will still be able to do the surgery - they are able to do the surgery for women like me who had as much breast tissue removed as possible with the MX because they were putting in implants and no one had any thought that they would ever be doing a DIEP 4 years down the road.
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My diep turned out great, and I had all tissue taken out down to the chest fascia. I suppose it may make a difference as to what type of cancer you have, where it's located, etc. There may not be any real pat answers for this. I do know that there is different thinking in some of these areas between NOLA, Dr Allen, and Dr Massey over the years. It's good you are getting some answers. If it's important to you, than you need an answer. When I found out they were taking out all tissue, I was relieved, personally, since that was the entire point of a mx to me - less to worry about.
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To clarify they don't take ALL tissue out. A small % will always be left behind.
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bd - The docs at NOLA would never do anything that put their patients at greater risk in order to add to breast volume, nor do they need to. They will provide volume safely. Really, I do think you are worrying unnecessarily. They know what they are doing and they do it well. I think you may be misunderstanding what Allen told you. I don't think he would do anything that increased risk either. You need to have some faith that they actually have more understanding of this than you do. Make a long list of questions and save them for your consult.
I am also going to suggest that everyone read their pre-surgery packet from beginning to end. Before surgery...
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I second that minnesota.
I know I read my packet but swear the iron and vitamin c part wasn't there the more i think about it.0 -
Well the iron and C were part of the multivitamins to take twice a day - not in addition to.
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Okay, so since I have had THREE mastectomies... yeah, that's right... 1, 2, 3 I think I can help with SOME of the confusion. And NO, I did not have three breasts! LOLOLOL... I had the right - cancerous side) total mastectomy in 2005, then when I had the left mastectomy in 2006 - initially I did nipple/areola sparing with tissue expanders. I had the remainder of the left breast taken - so total mastectomy, in 2008 when I had the expanders removed. Since three different breast surgeons did these procedures, I have a pretty good idea on their thoughts - because I asked them all! All three stated that with ANY kind of mastectomy, it is NEVER possible to remove 100% of the breast tissue. EVER. This is simply because there will just always be some left behind unless they took all of your tissue from below where the breast was to way above where the breast was and down to the chest wall. All three stated that this is just impossible to do, but they do their best to get all the tissue out. The MD that did my nipple/areola sparing stated that the way she does that particular mastectomy is equivelent to a total mastectomy where they remove the skin. She does this by peeling back the breast, then dissecting the breast tissue away from the skin as well as "cleaning out" the back side of the nipple to remove the ducts and breast tissue from there. My MD that completed the mastectomy agreed that the procedure was equally as effective as a total mastectomy. The nip/areola sparing MD did not intentionally leave fat for reconstruction. She retrieved as much breast tissue as she could... There was obviously a LITTLE left in there, because when I had my daughter 11 months later, I lactated out of that breast!!! Okay, so if I had tried to feed my daughter from there, she would have starved to death because the most I could ever get out of it was maybe a half a teaspoon. SO, there was still a little breast tissue. Was there some on the total mastectomy side? I am sure there was/is, but without a nipple to lactate from, and having had rads there, I am certain it would have been even less the amount. Anyway, like I said before, I really, really researched the nipple/areola sparing surgery prior to having it. My sister was diagnosed the year after I was and I wanted to do everything in my power to make sure I didn't get a second BC diagnosis. I would not be afraid of the nipple/areola sparing surgery (I only had mine removed because when the expanders were removed, I fully intended to live out my life breastless... HA - obviously that didn't happen!). What I would be afraid of is intentionally leaving a bunch of extra tissue in there for the sake of a surgeon that comes off as not really caring to do a stage 2 to go back and tidy things up for his patient... Is that harsh? I don't mean it to be... but... Oh well, you guys know me by now... LOL
Okay, pre-op instructions... I don't remember much more than NOT to take Vitamin E (okay within a multivitamin, but not to supplement above that - it increases bleeding). I do think it did say to take a multivitamin, but I don't remember it saying twice a day... I am pretty sure I have my instructions around here somewhere - even though by now they should have gone in the recycling bin!
Candsmom - How in the world did you get your insurance to pay for another revision??? Will someone with a reasonable insurance company please adopt me?
MRI's - I attended a seminar for BC survivors a few years ago that recommended an annual MRI for flap reconstructions. I have not had one as of yet... my oncologist only recommends self breast exams and clinical breast exams. He also stated that recurrance usually occurs along the scar line. I will probably ask for a baseline MRI the next time I see him, just to have it on file.
Alright... I am off to bed. Busy day tomorrow and have to take not only my daughter to kindergarten, but the puppy too!
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Not sure why my insurance company is still paying. I do have a primary and a secondary, and both have changed since my original BMX April 2010, so perhaps that is why they are letting me "double dip" at the center? I did have to laugh, as my primary insurance did send me a copy of the federal law about treating all complications of mastectomy, so maybe since I had the bad skin necrosis that is why they are still paying?
Dr D thinks I am done now though, except for tattoos, so I am pretty happy about that.
Just waiting to find out the path result on this little nodular area that got sent in on Monday - I am sure it is just some sort of fat necrosis or skin type inflammation, but I am trying to keep my mind from going to the bad place!
As for other things - did most of you get tattoos done by Donn? I need to start thinking about this part, what does everyone recommend? thanks
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