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PENN Hospital MI-Diep w. Dr. Kanchwala -Had Anyone?

2Infinity__
2Infinity__ Member Posts: 3
edited February 2021 in Breast Reconstruction

Hi,

I'm hoping someone(s) has had the new MI-Diep Flap recently, done by Dr. Kanchwala at Penn Hospital. It's a new technique he and colleagues developed that is supposed to be minimally invasive to the abdomen, causing a lot less pain, and much quicker recovery. Because they don't have an arrangement available to contact previous patients, I am really hoping someone can let me know of their experience. I consulted and have seriously considered going with them for a one sided diep flap, but now have real concerns--so hoping to hear from a recent patient to get some clarity.

How did I get here? Over a year ago, diagnosed& almost immediately met with a PS (highly regarded with over 100 5 star reviews) I had surgery, a TE placed & expanded, treated with chemo etc., finished all infusions late february. More than ready to shuck this annoying bloated TE, but..what to do? The mastectomy recovery process seemed long and painful, and I don't want to repeat that. Ever since I have grappled with choice--what should I do- go flat, do implant or diep? It's been really difficult and I have read a whole lot about other's experiences which has been helpful.
Aside from being concerned with the recovery itself, I worry about the time factor. I feel I need to be there for a family member who is going thru the worst time of her life, and is in a precarious state & needing support.

To make a long story shorter, the PS I saw, had recommended diep flap initially. My onc. strongly recommended a implant as a much easier surgery, and I consulted again with the PS. He ended up saying let's do an implant instead, esp. as you have a lot of tissue and it could lead to problems with healing. He could figure out which implant in the operating room (while under anesthesia) I don't know if this change in surgery recommendation was because I expressed concerns, my "fat" or what. But in a short meeting to suddenly change recommendations, has really thrown me-esp. as I know little about it and it had not been the plan.

So, once again agonizing what to do, where to go? Lo and behold, a week later I see this article in breast cancer.org, about the new technique, much less invasive, with shorter hospital stay, and less painful, quicker recovery. Seemed so like the answer- and I had a consult in Pennsylvania. The initial reviews I read, with one minor exception (bulging stomach resulting) of a few years ago, before the intro of this new surgery, seemed encouraging. Then I happened to read a different site, much more mixed- both good and less so. Of particular concern, a person consulted, but didn't like the impression made,she claims that months later 4 persons who had initially recommended Penn & Dr. K. then relayed they were in constant pain daily as a result of this operation--pain is definitely not what I am looking to achieve! This 'review' was put out 3/29/19-so very recent.

Really concerned, I put in the search engine here for Dr. Kanchwala. I found one person recently a patient of Dr. Kanchwala, and this new technique, and I read her posts. At first, things were great, but then apparently months of open wounds and treatment before healing. I don't know if this was a fluke, or a real possibility to happen again with this dr. , team and technique. From being eager to go ahead, esp. after feeling dumped by the original PS, I now have serious concerns. Although I will ask them about that experience and why it happened, I so hope to hear of others that have recently done the mi-diep at Penn with Dr. Kanchwala, and their experience, good, bad or mixed.

I will also verify if the original plastic surgeon changed proposed procedure in response to my perceived worries, or because genuinely concerned about healing okay. Other than that, I am checking with NOLA that I had initially contacted a year ago, but wasn't able to follow up at that time. The PS is local, PENN is out of state,but an hour away by train, and NOLA is a plane ride away.

Any help or knowledge anyone might be able to share, esp. experience of this new procedure would be so very appreciated and helpful. Many thanks in advance.

Comments

  • delbo
    delbo Member Posts: 1

    Hi there,

    Dr. Kanchwala is my plastic surgeon (my insurance is limited to the Penn system and I am kind of trapped with him). I do not recommend him. He does not care about the pain that we feel at a fundamentally dangerous level, but if you're looking for aesthetics over any concern for pain or pain treatment follow-up, then he's the surgeon you're looking for. And his wait-time of two hours or more is the least of the issues with him (although if you are taking a train into the city, this can become a real concern too!).

    I had wanted a DIEP-surgery and therefore went with Kanchwala, but he said I was not a candidate and I ended up having under-the-pec tissue expanders to implants instead. For the six weeks following my mastectomy, I had low-grade fevers and drenching night sweats and unimaginable pain on my right side (left was the cancer side). At first I thought these were part of the recovery, but as they wore on and my occupational therapist grew alarmed and told me to bring up the possibility of infection with Kanchwala. He brushed it off and ignored it, convincing my caretakers (mom and now-husband) that I was just coping worse emotionally than most with my mastectomy. My OT calls him to explain her concerns; he ignores them. I go to my breast surgeon, who seems concerned and gives me oral antibiotics and tells me to bring it up with Kanchwala again. More pedantic explanations from him that it's just a "me" problem. Eventually the swelling and open sore concern my OT so much that she tells me to call the plastic surgeon on call at Penn on the weekend and to send pictures to another surgeon if possible. I do this, the surgeon is terrified, sends me to Kanchwala first thing Monday morning, and after he squeezes close to THREE CUPS of fluid out of the open wound on my right side, I'm headed to emergency surgery where the expander is removed and an infectious diseases doctor monitors the staph infection that has been raging in my body for six weeks. Kanchwala seemed more embarrassed to be called out by a colleague than genuinely concerned for me. Once the infection is out of my system, it is like night and day, how much better I feel. The damage done by Dr. Kanchwala's inability to treat me as a person in pain has been immense, and it's a mind game I can't get out of. Now I overthink how to present my pain to anyone, and I always have the fear that I won't be believed. I don't wish this on anyone.

    Three years down the road, I've had to go see Dr. Kanchwala recently because I've been in severe pain again. He dismissed me saying it was "nerves regenerating." I've been living in this body for three years and know that feeling; this isn't it. I've since been seen by a breast surgeon (a new one for me) who told me that a lot of Kanchwala's patients, especially younger ones, experience a lot of long-term pain issues stemming from recon. I'll be seeing a post-mastectomy pain specialist this week, and am genuinely already considering going flat (something I never wanted to think about). It is very sad to me that the most helpful person for me right now would be my PS, were he someone invested in helping his patients instead of guarding the aesthetic results that come at a physical and emotional toll.

    I hope you can find someone who will speak to the specific surgery, and maybe they will be able to tell you about a much better experience. But I can confirm what those other women you reference seem to all say: the man does not care about your pain.

  • 2Infinity__
    2Infinity__ Member Posts: 3

    Hi ,

    Thanks for responding so quickly and giving me such a clear picture of your experience. I'm really sorry to hear of what you've been through with this doctor- and that it is making you think of going flat. I wanted to have a quick and as pain free experience as possible, but based on what you've told me I am taking a huge risk with this doctor, regardless of his new technique. Any one can have a bad reaction after surgery, but for a doctor to repeatedly ignore his patient's pain, is arrogant and unforgivable as far as I am concerned. Hopefully whatever you do next, you will have good and pain free results. There are other surgeons at Penn that could be a lot better if you switch- insist if need be. Dr. Au didn't seem to have mixed reviews and may be worth checking out others. Thank you again for taking the time to respond and giving me a detailed description of what you have been through. I am wishing you all the best and much good healing going forward.

  • Moonshapedpool
    Moonshapedpool Member Posts: 1

    Hi 2infinity,

    I'm also considering mi-DIEP with Dr. Kanchwala. Did you go through with the procedure? How did it go? I hope you're doing well.

  • mavericksmom
    mavericksmom Member Posts: 1,048

    Moonshapedpool, just wondering about your Dx? I answered your thread about this.

    In Philadelphia area there are a number of great hospitals. I mentioned Fox Chase, but there is also Jefferson, MD Anderson at Cooper in NJ, Holy Redeemer, Bryn Mawr Hospital, and Capital Health in Hopewell NJ. Not sure where you live or where your insurance m be accepted. Just wanted to give you options. I think having a regular DIEP reconstruction would be worth looking into, even at Penn.

    I wouldn't got to that doctor at Penn! Many here have used Penn. I would search Penn reconstruction also DIEP reconstruction on this message board. My experience on this message board is that I believe member experience over doctors because there is no alternative motive for members and everyone here really wants to help!

    My best wishes to both Moonshapedpool and 2infinity! Please keep us posted on your decisions and experiences!

    Delbo, I am so very sorry for your suffering. I feel the same about telling my doctors about pain. I had other issues with my DIEP surgery and I didn't get any support from my PS either. Mine was not nearly as bad as yours! It also wasn't because of anything my breast surgeon did

  • vqines
    vqines Member Posts: 1

    Hi, I am consider mi-DIEP. Had somebody go through with the procedure?


  • minustwo
    minustwo Member Posts: 13,002

    vqines - this thread is over a year old so I'm not sure you'll get an answer. Check the "search" section or go the the Surgery section and you'll see lots of DIEP procedures.

  • Stix
    Stix Member Posts: 610

    hi. I am curious about this procedure. Can you tell me more or if u had this

  • minustwo
    minustwo Member Posts: 13,002

    Stix - like I posted to vqine - this is a OLD thread. Nothing since August 2019. GO to the search section and type in DIEP and/or mi-DIEP. You'll find threads that are more up to date.