Hi everyone, 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. I have private medical insurance, so 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. The pre-Op scans also identified a Blood Clot in my lung, thought to have been caused by the Cancer, so I was immediately prescribed a blood thinning drug called Fragmin which I inject on a daily basis. On 24th April 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. During the early days of my diagnosis I searched for information on Carcinosarcoma, sometimes referred to as MMMT, and available treatments. I quickly discovered that due to the rarity of this cancer, treatment information was limited and prognosis was always poor. I then discovered the GCS Project website, based in USA (http://gcsproject.org/) but such a morale booster. I now follow with interest the research being undertaken and take inspiration from reading about the treatment and experience of others. I hope by sharing my story it will help others particularly as medical expertise in the UK is so limited. Good luck to anyone battling this awful disease and do all you can to stay positive ladies!!!
Hello Tis and a very warm welcome to the club no one ever wants to join but are glad they did. It's a very supportive place to be.
I'm sorry to hear about your diagnosis. It must have been a horrendous shock for you and your husband. You've been through a awful lot over the last few months and it's good to hear you've been able to resume the Avastin treatment. Your positivity in the face of such a difficult diagnosis and demanding treatment shines through and I'm sure your story will be a great encouragement to many here. Sending you lots of good wishes as you continue with your treatment x
FormerMember
Hi Tis
Thank you so much for sharing your courageous story and experience in such detail. I am sure it helps many of us here to hear what you have overcome last year. I have a rare uterine cancer too with poor prognosis (USPC)about which very little is known. Like you I feel the US is leaps ahead of what we have to offer here in terms of research and therapies. Why did your oncologist feel the Avastin would be so helpful in your case? Do you have an idea of the cost? How long will you continue on it and are you now in a holding pattern with regular check-ups in the anticipation of a remission? I will take a detailed look at your attachment in a moment - just have to take dogs out for a quick pee.
Thanks again for sharing your hard gained knowledge with those of us who are desperate for better solutions and possibilities.
Thank you so much for your reply and sorry to hear you are also facing difficult challenges.
I think that due to the rarity of the Cancer I have, a well defined gold plated treatment plan, including well researched, effective drugs, simply don’t exist yet. That is partly why I have decided to share my story. Avastin is classified as an immunotherapy drug and in simple terms, aims to stifle, limit, slow down, the cancer cells ability to grow and advance. Collectively these drugs attempt to enable your own immune system, in various ways, to identify cancer cells that would normally be undetectable and prevent them developing. I have copied the extract below from an American website that describes Avastin and how it works.
Avastin® (bevacizumab) is a tumor-starving (anti-angiogenic) therapy. Avastin is designed to block a protein called vascular endothelial growth factor, or VEGF. Normal cells make VEGF, but some cancer cells make too much VEGF. Blocking VEGF may prevent the growth of new blood vessels, including normal blood vessels and blood vessels that feed tumors.
Unlike chemotherapy that attacks the cancer cells, the purpose of Avastin is to block the blood supply that feeds the tumor. This can stop the tumor from growing.
In the USA it has been prescribed to extend life expectancy for several different cancers including ovarian and cervical cancer but it is still early days. As a result there simply isn’t a lot of historical data to gauge success rates and clinical trials are ongoing. The problem in the UK is that it hasn’t been authorised for use in the NHS and so is difficult/expensive to get access to. I did some research on the internet a while back and remember reading that each dose costs approx £650 which is a huge expense when you consider in my case it is administered every 3 weeks. My private medical insurance currently pays out approx £3000 every 3 weeks, which in addition to the Avastin, includes use of the medical facility as a day patient, the cost of my consultant, medical staff who administer the drug and blood tests etc. This would be impossible for most people, including myself, if you were self funding.
I have been treated with Avastin since early June 2017. I am scanned every 3 months to identify any changes. The scans in September and December showed no visible disease and long may it continue. That said, I can’t help but ask very direct questions of my medical team, and expectations have been set that a recurrence of the disease is likely within 18 months. Despite this and the occasional wobble of confidence, I am determined to be a medical miracle and defy the odds. I believe maintaining a positive mindset is absolutely key to staying well for as long as possible. Without exception every medical professional I have met on this journey have told me, that whilst it can’t be proven scientifically, they KNOW it plays a significant part and underpins your treatment.
One of the huge difficulties with these rare cancers is identifying and getting access to a professional with some experience of your particular diagnosis. I feel so lucky to have been referred to Tim Mould. He is 1 of only 2 Dr’s I know of in the UK, the other one is based in Glasgow, Scotland
If you think I can be of any further help, please let me know, meanwhile I wish you well.
Thank you so much for your good wishes, much appreciated. I am very new to posting on Forums but have to say I am finding it quite therapeutic
For those of us battling in unchartered territory with a rare disease, I think it is important to share our experience and knowledge in the hope it may benefit others.
Wishing you every success with your ongoing treatment and staying well.
Thank you - that is very useful. I guess I am preparing for the expected 'return' of my cancer. i am still relatively young (69) and have sufficient savings to get me through old age which will now quite possibly not be needed for that purpose and could be used for newer privately available therapies but as you say the difficulty is finding therapies that are shown to work for my particular rare cancer. I have been very impressed with some patients survival rates (I used to live in the US) and am interesting in finding out as much as possible to be prepared for the next stage. You are fortunate to have found skilled people to give you excellent treatment. I am on the routine pathway at present (surgery, chemo, radio) but an awareness of future options and professionals may be potentially a life saver at some stage.
Let us know how you progress. I hope all goes very well from here on in. You have gone through a lot already.
