More Information on DIEP Sisters Sandy To women reading this who have had or are facing mastectomy to treat breast cancer: First may I offer my prayers and hopes that your treatments are successful, and that you are soon feeling much better. Surgery and chemotherapy are the pits, and I thank God it is past and not future for me! But I also thank God that, until they figure out WHY and can prevent breast cancer, at least there are life-saving treatments for us. In the hopes that something in it may resonate with you and help you, here is my cancer story: My name is Sandy, and I am a slender, active person of 45. Married, with two almost-my-own kids and three grandchildren, I work full-time as a graphics designer and systems manager, plus part time as an air taxi pilot. We live in a coastal town in southern Rhode Island. I sing in a church choir and larger community chorus, and manage a couple of simple web sites. For sports, I love figure skating (simple jumps and spins, not just going in circles) and skiing and inline skating and snorkeling. I write, draw, and make photographs. I started an airport association to help support the local airport. I CERTAINLY do not have time for breast cancer... A not-quite-right mammogram in July 2000 was followed with a repeat in February of 2001. Oddly, the area of suspicion from July had dissipated, but a tiny area of microcalcifications aroused the curiosity of an alert radiologist. A stereotactic biopsy was performed in March, and I was diagnosed with right breast DCIS and infiltrating ductal carcinoma. The invasive tumor was only about 6mm, and I just assumed that my surgeon would cut it out, I would have some radiation treatments and be on my way. My own mother (who is alive and well!) had breast cancer at exactly my age, nearly 24 years earlier. At the time, I knew little except that she was having terrible things done to her, and back then people didn’t talk much about cancer, let alone breasts. A soon as I had the bad mammo, I leapt into information-sponge mode, reading and sniffing around on the Internet for all I could learn about what might happen. By the time I was actually diagnosed, I knew a lot about cancer types and treatments and prognoses. I was too numb or too stupid to accept this cancer as a potentially life-threatening finding. It certainly was an emotional time, but I was more angry than frightened. My naturopathic doctor, who is my primary physician, told me this would seem bad for a while, but would ultimately be little more than an inconvenience in my life. Hah, some inconvenience! In April, I had a lumpectomy and axillary dissection as well as the newer sentinel node biopsy; this showed negative nodes, and a relatively non-threatening, Stage I, Grade I invasive cancer. Progressing well after the surgery, I was all set for radiation treatments. They did a new baseline mammogram in May, and lo and behold, discovered another area of microcalcs. This was annoying at best and terribly frightening at worst. Had another surgical biopsy, turned out to be more extensive DCIS along with another infiltrating tumor twice as big as the first cancer, and all involved doctors said I should have a mastectomy, which is indicated for what had now been revealed as multi-centric disease. I was scheduled for mastectomy by my same dear general surgeon, plus immediate reconstruction by a talented local plastic surgeon in early July. I never even considered implants; apparently over half of them require interventional surgery within only five years, and they often result in capsular contraction - a fancy way of saying the body builds tissue around this foreign object, resulting in a hard, very un-breast-like protrusion. The newer forms of breast reconstructions use myocutaneous flaps, which consist of skin. fat and muscle from somewhere else on the body, usually abdomen (TRAM), back, or buttocks. This seemed brutal, but preferable to implants or to remaining lopsided after mastectomy. I had read briefly about perforator flap reconstructions where the muscle is preserved and microsurgery is used to establish blood flow for the flap, and I had expected to request this method. But it turned out to be not commonly available; my plastic surgeon did not do this kind of flap, and it seemed I would have to accept a TRAM. As soon as I left his office, I started to get very distressed about the TRAM. It was one of the first times in my life that I, with my logical thinking and analytical mind, actually listened to my heart, and decided the TRAM was not for me. I just couldn’t imagine trading a muscle for a breast, and my general surgeon was very forthright in sharing with me that while many women do well, some of the TRAM patients she has seen have indeed had a bad time, with hernias, abdominal weakness, and permanent limitations to their body’s functioning. I had just about decided to go on with the mastectomy and hold off on the reconstruction until I could find a surgeon to do the perforator flap. With only days to go before my surgery, I (like you) did online research and found (was guided to, I believe) Dr. Alex Keller. I found his web site, and learned about the DIEP flap. I e-mailed him, had his response the very next morning. As my TRAM was scheduled for 5 days hence, and I needed to decide quickly if I were to change plans, he offered to see me that very day. So I dropped everything, and drove myself to Long Island with no map and $13 in my pocket. The rest, as they say, is history. Dr. Keller was wonderful! I had just enough of a pot belly to make a new breast, and Dr. Keller felt he could take me on as a patient for a DIEP, and he would arrange to get it all done in a timely manner so as to not unduly delay the mastectomy. After all, this is primarily about removing cancer, and it would be foolhardy indeed to delay cancer treatment for a long, long time for the sake of reconstruction. I canceled the TRAM, and a month later was in NY having the DIEP. The breast surgeon with whom Dr. Keller set me up is as lovely a person, and as fine a doctor, as I have met anywhere. She did wish to biopsy a lump in my other breast, which was done the Friday before my Tuesday DIEP. It turned out to be nothing, but I appreciated her thoroughness, as if this needed to be bilateral surgery, I wanted to know before we got into it. After recovery from DIEP surgery, I had 4 cycles of prophylactic chemo (AC) and am now almost feeling fine! In December, about six weeks after the end of chemo, Dr. Keller did a second, outpatient surgery to create a new nipple and areola. This new breast is so well-crafted that not one doctor, nurse, mammography tech or other medical professional who has seen it, has seen anything before that was even close in appearance, feel, or health of the flap donor site. Dr. Keller is a master of his craft, and is also compassionate and very dedicated. My DIEP surgery took just under 8 hours. I suffered no long-term complications. I was in the hospital for one extra day (4 total) because of some problems with post-anesthesia illness and drug reactions, which are totally typical for me regardless of the kind of surgery. Otherwise, no complications at all, good healing, even regaining some feeling in the reconstructed breast, after 7 months. I am so pleased with the results of my DIEP! I never went through any kind of depression after the mastectomy - I simply woke up in the recovery room with a flat tummy and a “breast” that looked right except it was missing an areola and nipple. Chemo was much harder to take, but even that is now history and I am back to all of my former activities (except the flying; I need to regain my FAA medical certificate before I can be allowed to fly again after a cancer diagnosis.) Recovery from the DIEP was straightforward. The first few days were pretty darned uncomfortable. But at nine days after surgery, I was cleared by Dr. K to drive, and I drove all the way home from NY. Three weeks after the surgery I was walking on the beach in my swimsuit, and was well enough to tolerate the minor surgery to insert my port-a-cath for the chemo. At 4 weeks, I went in the ocean, although was cautious because of the surf. At 5 weeks, my chemo started, but even so, at 6 weeks, I rollerbladed 6 miles one day and walked 13 miles the next. I could have returned to work at 3-4 weeks, but stayed out a full six weeks because of the port surgery and the start of chemo. I worked part time during my 12 weeks of chemo and for some time afterwards, but that was because of the chemo, not the surgery. The only caveat in all of this is the cost of this surgery. I have a relatively good health plan, but they have thus far paid only a small portion of the DIEP fee. My case is now moving to a Level II administrative appeal within the insurance company. I am prepared to appeal until I get the coverage this procedure deserves, and Dr. Keller’s office is staffed by able and helpful people who work with patients and their insurance companies. But I am delighted with my results. I never went through a time of breastlessness, so I was spared the awful feeling of waking up flat. I bet it is even more profound to have breasts rebuilt when one has been without. I am grateful to Dr. Keller, who has at this point become as much friend as physician. My local surgeon describes my new breast as "amazing." and she has seen and helped to do a lot of TRAMs. She joins me in wondering why the DIEP is not the standard of care, except that few surgeons are willing to commit to learning and doing an operation that is so tedious and difficult. Dr. Keller is an artist, and is driven to perfection. If you become his patient, he will give unreservedly of his time and talent to help you. I really am a believer in this surgery as today’s best answer to women in our position. And Dr. Keller is clearly one of the best at doing it. I have found that through this awful process of cancer, and losing and gaining breasts, much blessing is to be found in the people we encounter. The original DIEP sisters, Alegra and Carolyn, and I have become fast friends through e-mail and we finally met in February, 2002. There is always room for more sisters, and I invite your questions or comments at diepthoughts@cox.net. Please click here to send me your questions and comments The following information in Spanish is from Berna in Spain: TESTIMONIO SOBRE LA RECONSTRUCCIÓN MAMARIA DIEP Desde el primer momento en que dijeron que e iban a practicar una mastectomia pensé en la reconstrucción mamaría. Cuando  el oncólogo me autorizo, solicite una primera visita con Cirugía Plástica, la que me dieron para tres meses más tarde El dolor de la mastectomia no era físico sino psíquico. Me sentía mutilada, había dejado de ser mujer, era un tabú y cortaba todas mis relaciones. No podía mirarme cara a cara en el espejo por las mañanas; me daba vergüenza cuando me hija pequeña me miraba.  La prótesis de silicona me pesaba, me irritaba. Sentía vergüenza y me ocultaba: no iba a la piscina, no hacia deporte y siempre estaba pendiente de que nadie notará que no tenía pecho. Sabía que jamás me iba a volver a ve como era antes, pero tenía que intentarlo. Tenía   miedo de tomar una decisión errónea. Temía perder en vez de ganar. Había oído que algunas mujeres sentían muchas molestias con las prótesis; otras, a las que se les había practicado el TRAM, se veían imposibilitadas de realizar fuerzas y privadas de realizar deporte. Tenia dudas sobre las técnicas: cuantas había; en que consistía cada una de ellas; como se practicaban y cual era la que más me iba a convenir (solo había oído hablar de dos vagamente); sobre la operación, los procesos posteriores, y la posibilidad de un rechazo…y tantas otras dudas daban vueltas en mi cabeza. Yo solo soñaba con  volver a  tener un pecho tan similar al que había tenido que no me diese molestias, con el que me sintiera segura y no que no llevara la cláusula de “se requieren intervenciones posteriores”. Mi primera visita fue un día de mediados de septiembre. Entre en ella con miedo, un motón de dudas y un sueño. Al mismo tiempo que yo entraba por la  puerta de la consulta lo hacia por la interior el cirujano. Solo le dije un hola escueto seguido del porque estaba  allí. Aunque siempre he creído que él ya lo sabía de antemano, al igual que mis miedos y dudas. Me examino y a continuación me explico detalladamente cada una de las técnicas, así como sus ventajas e inconvenientes: la prótesis, el Tram y una técnica nueva denominada DIEP. Aun recuerdo mi sorpresa cuando en vez de decirme lo él me iba a hacer, me dijo que ahora que tenia la información necesaria para decidir, que pensase bien lo que quería, que volviera a la semana siguiente y que se lo dijera. El cirujano me había informado y sacado todas las dudas. Llegue a las siguientes conclusiones: PRÓTESIS: Te ponen un elemento extraño en el área de tu antiguo pecho. Inconvenientes: a)Gran riesgo de que no la acepte; b) molestias, dolores y endurecimiento de las zonas cercanas a ella; c) intervenciones posteriores aseguradas. (Descartada) TRAM: Sacan el músculo del abdomen y lo implantan en el pecho. Inconvenientes a) no hay muchas  garantías de que el pecho quede muy parecido al que tenia; b) ponen una malla para sujetar a los intestinos para evitar cualquier posible hernia, para darte un pecho te imposibilitan un músculo y, además, la malla es algo ajeno a mi cuerpo; c) puede provocar molestias al realizar deporte o ejercer alguna fuerza. ( Descartada) DIEP: Sacan tejido adiposo del abdomen y lo implantan en el pecho. Inconvenientes a) la intervención es larga, unas seis horas mínimo ( Pero una vez en el quirófano que más da  cuantas horas sean); b) post-operatorio de unos 5 días; c) prohibido FUMAR, porque la nicotina es vasoconstrictora y podría provocar el rechazo del implante.  VENTAJAS a)  no introducen ningún elemento externo a mi cuerpo que me pueda provocar rechazo; b) no hay intervenciones futuras garantizadas; c) Podré llevar una vida completamente a mi estilo, activa con deporte; d) el pecho será similar al que tenía; e) perderé el michelín de la barriga, lo que nunca he conseguido, por lo que mejoraré la silueta. (Aceptado). A la semana siguiente fui de nuevo al cirujano y le comunique que había optado por el DIEP, el porque,  pero también le pedí su consejo. Al mes tuvo la oportunidad de operarme. Todo fue como el médico me había informado previamente: El post-operatorio no se hizo largo. Estuve sedada. Un día en cuidados intensivos y  cuatro o cinco en la sala. Al cuarto día me sacaron las sondas, los sueros y calmantes intravenosos (llevaba una vía  en la espalda). Me dejaron solo los dredones. Había tenido durante cinco días había estado estirada en la cama con las piernas dobladas, en alto, sobre un soporte. Me levante y con ayuda de un familiar empecé a andar con un poco de dificultad, pero por la noche ya estaba paseando pasillo arriba, pasillo abajo. Después en casa no sentí prácticamente dolor. Tome algún paracetamol. Al principio no podía hacer fuerza y tenia que ir con cuidado. Tenia que llevar una fajita y un sujetador tipo deportista y, sobre las cicatrices unas tiras de silicona (hacen que se cicatrice mejor). A los tres o cuatro meses ya hacia una vida normal, a mi estilo.  Como señal de la intervención, una cicatriz muy fina justo debajo del abdomen y otra un poco más gruesa  alrededor del implante. Estrenaba ombligo. Lo mejor: los miedos habían desaparecido. Estaba segura de que había optado por la mejor técnica. Después de un tiempo, cuando mi cirujano considero oportuno, realizo un tatuaje con tintes naturales imitando la areola y unos meses después el pezón, ambas intervenciones duran muy poquito no se ingresa en el hospital. Para hacer el pezón de nuevo pude elegir entre que me realizara un injerto a partir del pezón derecho o bien que lo creara a partir de la misma mama implantada. Opte por esta última técnica, auque sabia que los resultados no iban a ser tan buenos y una mama no se iba a parecer a la otra, pero estaba convencida que no quería perder sensibilidad en la mama derecha. Me sorprendió como creaba el pezón, particularmente le llamo  “Pétalos de Flor de Lis”. Dibuja donde irá situado el pezón teniendo en cuenta el de la otra mama, a continuación realizo unos cortes dibujando tres pétalos superiores que recordaban a los de la  flor de lis y a continuación tenso el hilo hasta que formaron un pezón. Ahora, no solo vuelvo a ser yo misma, sino que incluso me siento mejor que antes. El trauma de sentirme mutilada ha desaparecido, no me importa tanto si alguna de las cicatrices se nota un poquito ¿Quién no tiene alguna? . Psíquicamente estoy más fuerte y afronto mejor los problemas, porque no tengo un daño interno que me vaya debilitando. Y físicamente estoy ¡perfecta!. Lo mejor  fue conocer a mi cirujano, que me informo en todo momento eliminando mis dudas, mis miedos y llenándome de optimismo hacia la reconstrucción. El ha sido quien ha hecho posible que mi sueño se realizase. Si quieres contactar conmigo puedes hacerlo en:   picam5@hotmail.com . Mi nombre es Berna Si quieres contactar con el cirujano su nombre y mail es: Dr. Masià  jmasia@santpau.es Jamie In December, 2005, Ductal Carcinoma In Situ was found in my left breast.  Although surprised because 13 years had elapsed since my first cancer (well beyond “cured”), my strongest emotion was annoyance.  The previous 18 months had been devoted to caring for my dying father, then my widowed mother; by comparison the cancer was just a royal pain.  For the first go-round with cancer I had taken the conservative path of lumpectomy with radiation, which ultimately failed me, so this time I was aggressive.  I knew I would have a bilateral mastectomy with reconstruction; I just needed to learn how it could be done, and by whom.  Research led me to Dr. Gabriel M. Kind in San Francisco, who has performed the DIEP surgery since 1998.  He explained the various options, but I easily chose the DIEP procedure and scheduled it for February 6.  By the way, it is my understanding that state law in California now requires insurance to pay for all reconstruction. Surgery went without a hitch and finished in about 10 hours, however soon afterward the left breast looked bad, so they returned me to surgery and discovered that a vein had closed (probably weakened by the previous radiation) and caused a thrombosis.  Dr. Kind took a vein from my ankle and reconnected the blood supply between the mammary vessel and the flap.  He saved the flap, but the breast had doubled in size with clogged blood, so he had to leave the wound open to heal.  It looked nasty, but didn’t hurt more than the right breast, and eventually healed.  It did require an extra revision surgery to reduce the size for symmetry, after which I had two lovely C cups, with nipples and areola to follow. I can happily report that advancements in pain management made it so that I did not feel the 180 degree abdominal incision for five days—they achieved this by inserting catheters filled with topical painkillers directly into the incision.  By the time the catheters were empty I could easily avoid pain by moving cautiously. The other pleasant surprise was the absence of pain when they removed drainage tubes (past experience had me dreading this).  A new material for the tubing does not adhere to internal tissue, so it doesn’t feel like your insides are ripping out when the tubes are removed.  What an improvement!  Except for the extreme nausea in the hospital, the physical suffering was surprisingly easy.  I did have a hard time with swelling—not the lymphedema that makes the arms blow up to twice their size, but all through my ribcage and around all of the scars.  Dr. Kind referred me to a physical therapist in San Francisco who specializes in post-mastectomy lymph drainage.  Her name is Julie Wong, and she is a breast cancer survivor also.   Although she did not require a mastectomy, she did experience stubborn swelling and could find no help until she located a specialist in Washington who gave her relief.  Julie took his training and now passes the gift on to the rest of us.  She calls me her poster child because my case was so difficult and the results were so good. On the other hand the emotional aftermath was almost unbearable.  I am not a stranger to depression and anxiety—I have experienced both, plus I am a psychotherapist and work with sufferers every day.  Were this not true I would have thought I was going insane when flashbacks to childhood abuse suddenly erupted weeks after the surgery.  While I could not prevent or stop it, at least I understood what was happening to me, and had resources for coping with it.  I became miserably dependent on my doctor (he has the patience of Job and very good boundaries). I also had the good sense to call my own therapist to begin the hard work of healing wounds I did not know were there.             What an ordeal.  I was so overwhelmed for a time that I missed work for two months beyond the post surgery period.   Once I stabilized and returned to work, dealing with the PTSD (Post Traumatic Stress Disorder) still required intensive therapy, sweat and tears (no more blood!), but did not sideline me completely again.  Twelve months and a thousand deaths later I have emerged from the “valley of the shadow of death” stronger and healthier than before, both physically and mentally.   Neither recovery is automatic; both require patience and effort, but the fruit of the labor is beyond measure.  There are losses with the gains.  I love my flat tummy and perky breasts. And my bikinis!   But I miss the sensitivity of my nipples, a very important erogenous zone.  My husband and I are exploring other “zones” for intimacy.  It’s not a tragedy, but it is a loss.   But even more I love the emotional freedom gained through this “severe mercy.”  It has been a journey I would never have signed up for, but I would not trade for anything.  My experience is probably not typical, but my prayer is that another DIEP sister will find something in my story that helps her make sense of her own.  I sign off with my motto: “I am alive, and I have cleavage.”  Jamie DIEPcomfort@yahoo.com