Paula¹s Story

In May 2000, at the age of 40, I was diagnosed with Ductal Carcinoma In Situ (DCIS) in the left breast. There was a tumour under the nipple, and evidence of microcalcifications throughout the breast. It was the tumour/lump that prompted me to go to my doctor, and thus to the breast clinic where the diagnosis was made. I opted for mastectomy, due to the scattering of calcification throughout the breast tissue.

On my second visit, my oncologist told me about this procedure called TRAM flap. He said I was an ideal candidate for immediate TRAM Flap reconstruction because of my type of (pre)cancer, my age, my weight, and general health. All I had to do was quit smoking immediately. I had a 3-4 week wait for surgery anyway, as my blood count was so low (8), almost at transfusion level (7). This was due to ongoing (unrelated to the cancer) gynaecological problems over a number of years - which my own doctor had wrongly told me were Œnormal¹ for my age! Ten days after my diagnosis, I was told I needed a hysterectomy. At one point, the mastectomy, reconstruction and hysterectomy were mooted to take place simultaneously, and I became a fully fledged citizen of that twilight zone called 'surgery'.

I quit smoking immediately, and set about doing everything possible to prepare myself for the surgery. I was told I was very, very fortunate to be offered this TRAM procedure, especially the immediate reconstruction¹ option, which meant I would wake up with a new breast after my mastectomy.

Feeling Œlucky¹ (!!) I went to my first appointment with the plastic surgeon. She reiterated what the oncologist had said. She did mention herniation and other complications, but assured me it was a very rare occurrence and that as I was a perfect candidate it was highly unlikely to happen to me. She also told me about other forms of reconstruction, but all the time plugging the TRAM option. I was given a booklet on all forms of reconstruction including TRAM. Immediate reconstruction had only passed the board as an option at this hospital four months previously, so I guess they were keen to do it. I asked the nurses to put me in touch with other women who had undergone TRAM. There was nobody on their books, so I spoke only to a woman who had the latissimus (shoulder) reconstruction. She was very happy with her surgery, and delighted with the aspect of it where she had a breast made of her own tissue rather than an implant.

When I woke from surgery, I was in agony. Not the mastectomy area - I could hardly feel that at all - but the tummy area. A day later, I noticed a bulge on the side where muscle had been harvested. Nobody remarked on it during hospital rounds, and I didn¹t ask. Ten days later I left the hospital. Over the following weeks, the bulge just got bigger and bigger; 'The law of gravity', a second opinion later told me, adding that 'it will only continue to get larger as the bowel over time protrudes more and more'. My oncologist wanted nothing to do with it, and my plastic surgeon was not honest about it. She told me it was ³ no bother ² to fix it. My oncologist said it was "big bother, and not worth it'. I live with it, was his plan of action. I wore uncomfortable binders/corsets. Most of my clothes were uncomfortable. I was still healing from surgery, still in pain. I could only sleep on my back, and thus developed severe back stress and terrible pains on the heels of my feet!! It was hard to sleep at all, and I was exhausted all the time. By day I was very low, very uncomfortable, unwilling to go out as I felt awful and hated the bulge... I became more and more isolated in my life.

Cut to a year later. I now needed an abdominal hysterectomy, and fought long and hard to have the hernia repaired at the same time. This was done. The recovery from the hernia repair was like TRAM all over again; severely painful. I was also so scared. My body was really torn apart, and I joked (black humour) that I was unwittingly having a sex-change. It was no joke at all. It was just awful.

That surgery is now a year ago. The hysterectomy so far is successful. The hernia repair is doing ok, although I bulge a little on the OTHER side now, where I think some stitches ripped internally. My scar is ugly, but improving (I was cut open in the exact same place as TRAM for the second surgeries). I cannot lift much, I cannot stretch far, I cannot stand or walk for as long as I used to (last Friday I stood for too long, and my pubic area went purple and I hurt very badly), I am still numb on my torso-front, my belly button is veering to the left, sports are difficult and I am not allowed to use the equipment at my gym (their insurance), I have to stand up using arm muscles, I have to roll off the bed or else pull myself up by hinging my arm around my knee, I avoid crowds because someone might bang into my tummy (crowed public transport, for example), sit-ups are out of the question, making love cannot be enjoyed with the customary abandon. The list of Œ cannot do anymore¹ is so endless that I¹ll stop there.

I worry about damaging the hernia and needing surgery again, because it is so absolutely awful and also because more surgery will weaken the abdominal area even further. I have dealt with back pain by going to an osteopath, and this worked. I am extremely careful. I avoid getting overtired, as I recognise this makes me less conscientious or aware of potential dangers to the repair area. I damaged it a little again a few weeks ago while I was very tired.

In spite of all of this, I am living quite a full life. A few weeks ago, I climbed 700-800 feet up to a cliff top (I wore clothes that were soft on the tummy area and bought expensive walking/climbing boots to make sure I wouldn¹t slip). I am just back from a trip to the US (I live in Ireland) and the long flights that entailed. I had to ask for help getting my luggage about, particularly getting it off the carrousel. I can now walk at my usual pace (which is very fast) again, even if I need to rest more often. If I am careful, I can clean the house ok. Vacuuming is hard, as is stretching to clean stuff. I try to just take it more slowly and gingerly. I recently repainted two rooms in the house - again, with difficulty - but I did it carefully. I still find that some days are better than others; there are days when my tummy feels much more vulnerable, and on those days, I do as little as possible physically. My work involves sitting at a computer, and sometimes that can be hard over a few hours, but I am glad to be able to work again as for a long time I couldn¹t. I was single when diagnosed, and am now in a new relationship that is both loving and passionate, even if sometimes I have to avoid certain positions recommended by the Kama Sutra!!

To any woman considering this surgery, I can only suggest a categorical PLEASE DO NOT. To me it is barbaric. The statistics on herniation are hard to find, but it seems to be more in the range of 45% than Œrare¹. No woman who has this surgery will ever be able to get about as she once did. If you have small children, you risk never again being able to lift them or sit them comfortably on your knee. If you play sports, you risk never enjoying them again properly. Shortly after I met this new man in my life, we were at a party. For the first time since my surgeries, I danced. It hurt so bad, and I didn¹t want to tell him. These plastic surgeons have no interest whatsoever in the after effects of this surgery on women¹s lives. Perhaps one reason they don¹t tell us, is because they don¹t actually make it their business to know. Shame on them, I say.

I realise that so far I have got off lightly compared to some women, some of whose stories are here. Also, with time I have become accustomed to the limitations this surgery has imposed, and thus my anger - though far from gone - has abated a bit. I have to say that the anger flared up again when I read some of the stories here on this site. There is no way in this world any of us should have had this incomparably negligent surgery where a perfectly functioning part of our bodies is ripped apart without, it appears, any real consideration for the consequences. I am truly sorry to read so many stories here, and even sorrier that they represent only a fraction of the stories out there. If this site helps prevent other women from opting for TRAM, then I feel privileged to be a part of that decision. Thank you.