My story of Uterine Carcinosarcoma diagnosis from the UK
February 14, 2018 at 11:42 AM #4778TeresaParticipant
Hi everyone, my name is Teresa, I am 57 years old and live in London, UK. In April 2017, following an investigation at my local NHS hospital of my Uterus, Ovaries and Cervix, I was told cancer had been identified and I would require a Hysterectomy. As I have private medical insurance, I transferred to the private sector and saw a Gynaecologist who said my surgery was going to be a little more complicated than his expertise allowed and I was quickly referred to Tim Mould, a wonderful surgeon, based at UCLH and the Portland Hospital On April 24th 2017 I underwent a Total Abdominal Hysterectomy with Bilateral Salpingo-Oophorectomy and debulking of all visible disease. Post surgery I was told the operation had been very complex and the disease had been found all around my abdomen. It was at this point both my husband and I had an emotional breakdown and sobbed. However, we are both positive people and agreed to fight this battle together and do whatever it takes to overcome this dreadful cancer. I recovered well from the operation and met with my surgeon Tim Mould 10 days later to discuss the pathology findings and next steps. It was then that I was told the diagnosis was Stage IVb Carcinosarcoma of the Uterus, a rare and aggressive cancer. I still have to laugh at myself when I reflect on that meeting and my nativity and inability to absorb the information I was being given. It took several days for me to truly realise the seriousness of my situation and the enormity of what lay ahead. In mid May I met with Mary McCormack a fantastic Oncologist and began my Chemotherapy treatment of 6 cycles of Carboplatin and Paclitaxel, with the Immunotherapy Drug Bevacizumab (Avastin) added from cycle 2. Now at this point I should say that here in the UK Avastin has not yet been licensed for use within the NHS. I assume this to be in part down to the high cost versus lack of benefits data. UK patients without medical insurance may need assistance to identify access to the drug via a clinical trial or cancer charity funding. I feel extremely lucky that I receive medical insurance as part of my employment benefits. Primary side effects experienced from my treatment have been fatigue, bleeding gums and peripheral neuropathy (tingling/ pins and needles sensation in my hands and feet) but overall I got through my chemo pretty well. In September 2017 I had my first scan since being diagnosed and was pleased to be told that there was no visible disease and the Blood Clot in my lung had dispersed. However, the scan showed I had developed an Umbilical Hernia. Initially my Oncologist was reluctant to refer me for surgery, as continuing the Avastin every 3 weeks was deemed to be a higher priority, but over the next few months the Hernia became more and more troublesome and I experienced several painful strangulation episodes. In Mid December 2017 the Avastin treatment was halted to enable surgery to repair the Hernia, I was very worried at the impact of this but realised serious damage to my intestine had become a significant risk. I took great comfort from my December scan that revealed I continued to be clear of any visible Cancer. On 5th January 2018 I had the necessary surgery and again was fortunate to recover very quickly. I resumed Avastin treatment on 2nd February with much relief. The last year has certainly been a roller-coaster ride, by outward appearances you wouldn’t know anything is wrong with me which I still find bizarre. I am determined to continue enjoying life to the full and doing the things I love. I remain positive and by doing so, believe I can defy the odds of this terrible disease. Finding the GCS project website has been such a morale booster, so much of the available material on Carcinosarcoma is doom and gloom. I now follow with interest the fantastic work being undertaken and take inspiration from reading about the treatment and experiences of others. I hope by sharing my story, it will help others, particularly as medical expertise in the UK is even more limited than the USA. Stay positive ladies !!!!
February 14, 2018 at 12:42 PM #4798Diane RedingtonKeymaster
Thank you so much for sharing your story. I have heard from many women in the UK who struggle to find doctors with GCS expertise and who have access to novel therapies. Your treatment with Carboplatin, Taxol and Avastin is novel. I have been on Avastin for a little over 2 years. It seems to hold a lot of promise. Please keep us in the loop. I am very interested to know how this combination works.
I was diagnosed almost 3 years ago with Stage 4b. I have been on a variety of chemo drugs which have been effective achieving stable disease. The cancer will not go away, so with the drugs, we co-exist. My quality of life is high and this allows me to work to raise money to find cures for all of us struggling with this disease.
Have your doctors talked to you about clinical trials? I am wondering about opportunities for clinical trials in the UK. This is where the cures will be found.
February 16, 2018 at 2:12 PM #4878annParticipant
Thank you for sharing your story! I learn more about this cancer & how to treat it with every share posted!
July 17, 2019 at 3:43 PM #9903Margret RibochParticipant
I’m wondering how you are now. I hope you are fine!
October 12, 2019 at 12:02 PM #9965Charmaine CoimbraParticipant
Dear Teresa, like others with your diagnosis, I would be most interested in hearing how your treatment is going.
Wishing you the best.
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