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Hi Bev, I was diagnosed with uterine cancer in October 2015 and had a total hysterectomy in 2 December 2015. It had spread to the cervix and to a couple of lymph nodes in my abdomen. I had a total of 34 lymph nodes taken out. The pathology was not good as it was an aggressive type and was at a stage 3(1a) or something like that. Everyone was very positive about the prognosis and said that if not for the spread to the lymph node it would be stage 2. But it had spread even though the abdominal wash was clear.
The treatment plan was for 5 weeks of radiotherapy (25sessions) and 6 rounds of weekly chemotherapy (cisplatin). as well as 2 rounds of brachytherapy at the end of the treatment.
The chemo started well enough but I had high temperatures after the 3rd round. After 4 days in hospital, it was decided that it was too dangerous to continue with the chemo. Whether this decision had any bearing on my metastasis we can't tell. But in hospital my blood pressure had fallen to 60/45 and was to be to ICU if my BP didn't get to a safer level soon. Fortunately. It did. I didn't suffer hair loss during this chemo.
Radiation treatment continued. It was particularly difficult as I had to drink and hold 3 cups of water to help my bladder to survive the radiotherapy. At my best I could never retain much in my bladder so was at bursting point all the time. The nurses and technicians all did their best to help.
From memory I think the side effects from radiation started around Week 3 when I had diarrhoea and bleeding with it. Gastro tablets didn't help much and I had 7-9 bouts of diarrhoea a day. One description of the diarrhoea I'll pinch from another forum was it was like delivering a baby through the back passage. I was always in a curled up position on the toilet. This continued until after about the 3rd week after the last radiation, when it eased off.
Fortunately, I didn't really have any side effects from the brachytherapy.
Life continued as normal for a few months, but soon I began to feel a constant ache in my right hip and developed a persistent cough. Didn't take long for the next discovery session to find out my endometrial carcinoma had metastasised to my hip and lungs. Initially, my medical oncologist at the Mater had told me that without treatment I had 6 months. Now almost 6 months later it had metastasised. It was a cruel blow as up till then I had managed to stay positive about my prognosis.
I consulted another medical oncologist at a private hospital and he recommended radiation on the right hip and lungs. So back we went this time for only 5 rounds. I had 6 chemotherapy sessions of carboplatin and p? Spread over 18 weeks. This did cause hair loss. I decided to shave it all off as soon as it started dropping out at about the start of round 2. It affected me more than I thought it would. It was another thing that I was losing apart from my memory.
The last chemotherapy was on 15 December 2016. I had bouts of nausea and extreme fatigue when getting out of bed was a major problem. The physio and nurses advised me to keep active, but that was hard. I attended exercise therapy sessions at P A hospital which always made me feel better, but a bad bout of shingles put an end to that after Christmas.. A suspected bout of pneumonia landed me in isolation ward at hospital again for 4 days.
I'm fortunate that my children are all grown and I just don't know how some cancer patients continue to go back to work as well as look after their young families while suffering all the side effects. It's true that I'm not young and as fit but I can indulge myself in lying in the recliner most days.
A couple of months followed when I felt almost normal. Now in March and April, I'm on a clinical trial of tablets which has similar sideffects to chemo. I don't think I'll last much longer and I've started losing weight though my neutrophils are still at a good level and my white and red blood cells are ok. My CA 125 levels have slipped back to high levels again. I'll try to keep on till the next ctscan in 3.weeks to see if the trial has any effect on the growth of the cancer cells.
I wish all you readers good luck in your battle. Su
Tallypez, it's a huge thing to have a hysterectomy especially at your age. We have to be patient I suppose with people making awkward and thoughtless comments. It took me a while to accept my diagnosis and prognosis and finally the news that my endometrial cancer had metastasised. I really feel for the young who have to go through all the difficult decisions that have to be made. It's hard for family and friends to understand unless they have gone through it themselves. Su