Breast surgeon options

http://www.facingourrisk.org/messageboard/viewtopi...

I have no personal experience with either doctor but did talk to Joshua Levine (who is part of Robert Allen's group) about a DIEP revision. (I ended up going to NOLA and had Dr. DellaCroce do a prophylactic sGAP and revision on my DIEP side.) You can use FORCEs patient contact tool above to try to contact someone who used Robert Allen. (Looks like there is someone who used him for sGAP which is a more complicated surgery than DIEP.) As you know Robert Allen is a very experienced DIEP surgeon who basically brought DIEP surgery to the U.S. and then went on to train other surgeons. I know nothing about Dr Joseph Daya but my questions for him would be who did he train with? More importantly how many DIEPs does he do a week? (I would want an answer that is at least about once/week.) How many DIEPs had he done on his own (when not in training)? (You want multiple hundreds as a response, even 1000s would be better.) How often does he change from DIEP to free tram (I would imagine Allen almost never makes that change- a question you can ask of both doctors.) What part do residents or fellows play in the surgery? Sloan Kettering has a ps fellowship program. Will people in training be participating in your surgery? If so is that something you are comfortable with. Speak to former patients and ask to see their results in person. For this type of surgery it is usual to contact former patients. If you are not given access to former patients it is a red flag. Anyone who is good will have a very large group of happy customers who will be more than willing to talk to potential new patients and even show them their results in person.

I originally had a very problematic DIEP done by a well trained but it turns out relatively inexperienced microvascular surgeon. She had completed a microvascular fellowship and had attended impressive Ivy League schools but, it turned out, had done few DIEPs on her own when not in training. So I originally went with the young well trained ps (who showed me only one photo of her former work and had difficulty coming up with even 1 or two former patients to talk to me) and paid a price. I bounced through revision after revision and finally jumped ship an had the DIEP fixed by more experienced ps.. My personal feeling - I would go with the older ps who is very experienced unless there is clear evidence that the younger ps has a very large number of DIEPs under his belt (done after he finished his training) and has a large following of happy satisfied customer just jumping to show you their beautiful results. Just my personal feelings on the topic....

My take on this - it sounds like there is a medical necessity for unilateral mastectomy (multifocal or multicentric bc) and, as far as imaging shows, the other breast appears clear. It is true they can't know with absolute certainty about the other side, but imaging was negative. Unfortunately with bc a lot of things are "uncertain." If what I have written above is the case - prophylactic contralateral mastectomy with reconstruction should still be an option (and should be covered by insurance) but it is a personal choice. In a prophylactic setting there is no right or wrong answer. The decision is yours based on how you feel about things

For me personally, the overriding factor in this decision was my estimated risk of another primary breast cancer on my "good" side. I have a family history of bc and my risk of another primary was elevated.

Have you talked to an oncologist and genetic counselor so that they can give you an estimate of your personal risk? (They will take into account family history, age of diagnosis, results of genetic testing, etc.) Other issues include how you feel about handling continued surveillance (possibly rotating MRIs and mammograms.), loss of sensation in the nipple (and possibly the whole reconstructed breast), a possible still hidden bc in the good side, the risks of a bigger bilateral surgery, etc. The list goes on but ultimately the decision is yours. There are threads on the boards about the topic which may help you with this decision. Talk to your doctors to make sure you have all the medical facts and are aware of your options.

Know that the DIEP tummy donor site can only be used once. If you have enough tummy tissue for a bilateral reconstruction and, at this point, decide on a unilateral mastectomy and reconstruction, you will need to use a different tissue donor site (ie sGAP) or have a different type of reconstruction (ie implants) if you want mastectomy and reconstruction on the contralateral side in the future. Just information to be added to the equation -- again no right or wrong answer here.