Reporting Death by Treatment

I am so very that you have lost such dear people in your life. I doubt anyone that died from treatment or overtreatment has that listed as cause of death. That's just my opinion.

Hi, Tamoxifen nearly killed me in four months. I am one of the 2.9% of women that have a hepatotoxic response. You hear about the 5% that get uterine cancer but not the smaller fraction that it nearly kills. In my case I was grade 3 obese (260lbs and 6ft tall) going into BC. I had a mildly fatty liver but all liver enzymes were normal. I had surgery and radiation with Tamox overlapping the radiation. I went from a normal functioning liver to stage 4 decompensated cirrhosis in just less than four months. I now need a transplant and that is another trip in frustration. In March (surgery date) I will be two years out but you need to be 5 years out to receive a transplant (medical ethics.) My liver will at best hang on until I am three years out at which point my doctor says 'we will have a conversation.' Both of my sons are a match thankfully as with a history of cancer I cannot receive a cadaver liver. This topic is great as my breast cancer was the best case scenario in the sense that it had not spread and was contained to the breast with an Onco of 17 but the cure nearly killed me and might yet succeed. I am angry. My transplant doctor that is monitoring me is angry too as he says more women are going into breast cancer obese (I can give you many excuses like menopause which was a ride and caring for a Mum with dementia, and a demanding job, and a sweet tooth, and a husband with lung disease and on and on) but my doctor feels that it should be standard protocol to ultrasound overweight women for the first 6 months every two months when starting Tamox then every 6 month thereafter. But my Onco says they don't want to scare women off of the treatment. I would have liked to have been informed. Mine was acute onset with ascites (fluid in the abdomen that had to be drained--not fun, and hepatic encephalopathy where ammonia not broken down by my liver crosses the blood brain barrier and you go loopy, and jaundice. The texture of my liver also changed and is now covered in nodules. It also gives me an annual 20% chance of hepatic carcinoma. Yipee! So the bottom line is---I SHOULD HAVE BEEN GIVEN THE CHOICE TO HAVE MADE AN INFORMED CHOICE.

Cheers, Liz

Thank you for not sugar coating my reality. It sucks. I should add that approximately 40% of women on Tamoxifen will get a fatty liver and not necessarily from obesity. Tamoxifen can induce a fatty liver but when given to women with an already fatty liver it can race you to the finish line for liver disease. I realize that it has saved so many lives but all of the risks should be disclosed from the outset. I am doing everything I can to hold on--I have lost 100lbs, 1000mg/day of sodium and not a gram more, fluid restriction to 1 litre/day, I take the meds, I am tolerating Letrozole well for the BC, I drink this vile protein powder daily as malnutrition due to malabsorption is a thing with a broken liver and it also helps to fight muscle wasting, I suffer the debilitating cramps you get with liver failure and all because I wasn't monitored for liver function decline. So pissed off. I was given a bottle of Tamoxifen and told see you in 6 months. I called the clinic and said I'm getting sicker and was told the side effects would settle down. I called again when my belly started to swell and was told Tamoxifen can cause abdomen bloat. I called again when I just felt awful and was told to call my family doctor as I might be suffering depression. I have been left feeling like I wasn't worth the effort. Now, however, they have rolled out the red carpet for me and nothing is too much to ask. Too little too late. I just need to hang on. I just pray the BC doesn't return as then I am well and truly fucked as my damaged liver can't tolerate chemo. And also, if the BC returns I can't have a transplant. The super stupid cherry on the cake is if I do get liver cancer that is not mets from the original BC I can have a transplant but if I have mets from BC I get a palliative ride to death and no transplant. So I pray I stay well enough for a transplant, get it, the breast cancer never returns and I live a well life. Here's hoping anyway.

Cheers, Liz

i haven been taking tamoxifen for 4 years. my liver blood work has been up and down. Just got my results today and they are higher than ever. I had my surgery 4 years ago diagnosed with dcis stage 0 breast cancer. Did radiation. Is anybody else having the same problems. i have joint pain all over. please help.

Fernanda08, my fatty liver showed up on my latest CT scan, but my bloodwork has been okay. Not sure if this is normal. Heck, I don't know what anything normal is at this point!