I was diagnosed on 17th December 2019 with Low Grade Ovarian Cancer - Hormone Therapy has been my suggested treatment moving forward for the next 3 months. I have been told my cancer is chemo resistant.
I was first diagnosed in 2011 at age 17 with Stage 3b high end borderline tumour of ovaries. ( my blog has all this info from 2011) Treatment I had was TAH+BSO + Supracolicc omentectomy and excision falciform ligament and liver capsule and diaphragmatic deposits.
I was having MRI scans every 6 months until 2014 and was feeling pretty well from 2011-2014. I had started experiencing pains in my tummy and I had CT Pet scans which showed further evidence of High Grade Borderline serous tumour that had returned to my vaginal wall. I had more surgery January 2015 and doctors confirmed there had been a slight interval reduction in the size of the vaginal vault nodule. other wise stable.
I have since then been having MRI scan yearly. Which have show no evidence of anything but this nodule. I really felt in myself something was not right from July time this year where I had serious stomach pains and every time I ate something It would hurt i would feel bloated and my bowels just didn't feel great. I then experience some quite heavy bleeding and took myself to A&E in Bristol.
I have since august had many CT/Pet MRI scans - my new Gynaecologist recommended surgery as my bowel could be stuck and they are going to go in to remove this nodule on vaginal wall.
I was booked in for surgery 10th December 2019 - I have fully recovered and feeling well in myself still pains in my stomach when I eat but otherwise I feel okay.
Upon my results I was diagnosed with Low Grade Ovarian Cancer - my surgeon did not remove this other (borderline?) nodule on vaginal wall as she said she found different disease (low grade) on my bowel/colon and many deposits spread in this area. Diagnoses was ( more disease than anticipated) As low grade I understand its chemo resistant I have been doing lots of research and found Trametinib could be an option for me but we cant access this via NHS.
I have been meaning to get back on here for a while. I have recently joined a group on Facebook for ladies with this rare sub type of ovarian cancer. I am starting treatment tomorrow I Believe also looking to use RSO oil along side Letrozole for treatment on going for the next 3 months.
Jasmine x
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Jasmine_Rose
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Thank you for your post. I'm sure our kind and knowledgeable members will respond to you soon.
I just wanted to let you know about the last edition of our magazine which had a lot of information about low grade in it. You can read and download a copy here: ovacome.org.uk/Handlers/Dow...
Also, our Younger Women's support group runs on the first Wednesday of every month, 6-8pm. The next meeting is 5 February. Its an online support group which we conduct via videocall, so you can dial in and take part wherever is convenient for you. If you were interested, please email me at support@ovacome.org.uk as I send out the dial-in details to whoever has signed up, on the morning of the group.
If there is anything we can help with, please do get in touch with us.
Sorry to hear of this. I think there are a number of people on this site taking Letrozole. I’ve been taking it since May 2017. I find it quite easy treatment, though I get some tiredness, which they tell me could be due to the Letrozole. I hope it works well for you. Di
I had a few hot flushes at first, but it wasn’t really troublesome. Haven’t noticed any for quite a while. I also have a rare ovarian cancer, gct, which doesn’t respond well to chemo. For me, I feel Letrozole has been the best treatment I’ve tried, other than surgery. Di
Hi Jasmine, I also have a rare OC, Granulosa Cell Tumour which is also chemo and treatment resistant. I first took Letrozole during 2013-2014. At first the hot flushes are tough. Wear layers so you can peel off when you need to and wrap back up when it’s over! Consider reducing alcohol intake as that induces more flushes.
Over time, joint pain can be an issue but if you are only trying it for 3 months then you may not have an issue. Other issues are disturbed sleep patterns, and vaginal dryness. I am actually on Letrozole again since Oct 2018 and have found the hot flushes are not such an issue - maybe because I am older!! Joint pain and sleep disturbance is still an issue but manageable. Good luck - I hope you find it helpful in managing your disease.
Hello Jasmine_Rose... I’m sorry I haven’t seen your post before today.
Firstly, I’m so sorry to read your story and what you’ve been through.
I’m also Low Grade Serous OC so understand what this means. I was diagnosed in 2014 with Borderline Ovarian Tumours and within a year I had more surgery and was diagnosed with Low Grade. I had chemo back then because there wasn’t so much known about this rare disease but you’re right in that this disease is essentially chemo resistant.
Hormone therapy has proven to be extremely effective for most of us including me. After several recurrences I’ve gone back to a hormone blocker called Exemestane (I’ve had Letrozole previously which stabilised me but I developed breast cancer completely unrelated to ovarian disease so needed a different hormone blocker). Exemestane has reduced my CA125 cancer marker from 200 to 98 within 6 months so it is working again for me.
One thing I will say to you is that with Low Grade you have time to consider your options so don’t feel you need to rush at anything. Please don’t panic. Maybe start the hormone treatment for now to see how you go with it and whilst you’re on it start to look ahead of what next. That’s what I do because I like to be one step ahead and have a plan.
Trametanib is another drug which has shown great success in the recent LOGS trial. This was headed up in the U.K. by Professor Gourley in Edinburgh. Trametanib is not available on NHS yet but Ovacome are working hard with Prof Gourley to change this. If you find you do need something else in the future and Trametanib is still not available then your oncologist can request an Individual Funding Request for it (IFR). Ovacome support line can talk you through this and can offer advice re the process and what current best practice is in terms of treating Low Grade.
I’m glad you found the FB support group. I’m an Admin in there (Diane Evans-Wood) . It’s a brilliant group to be part of but it is worldwide and sometimes it can be frustrating as ladies share what they are having but differs in U.K. . In America Professor Gershenson is the Low Grade guru at MD Anderson who Prof Gourley worked closely with on the LOGS trial.
If you search Low Grade Ovarian Cancer in this forum you should find previous posts about Low Grade including mine. If I can be of any help please let me know. Sending you lots of love and hugs, Diane xxx
Hi Dianne, Thank you for your reply. Sorry to hear your story and what you have gone through over the last 6 years. I am glad letrozole worked well for you to begin with. I am hoping that I will see some reductions within these first 3 months.
I feel I am little bit in a rush as he has said without treatment I have around a year left before It got real bad and 20 years with treatment at this moment in time. I am starting letrozole this week tomorrow I grab my prescription. I have just ordered some RSO oil which I am hoping both together will help massively.
My Gyne Onco in Bristol has put in an application for funding for the Trametinib so I have my fingers and toes crossed - I will also try again with my Gyne Onco in Cambridge as I will be heading home home for my treatment until I am well enough. He will also be giving me a second opinion. I am focusing on getting healthy I have got vegetarian and trying to drink plenty of water. I looking to start yoga and gym to keep myself busy as mentally I don't think I could be back in work right now.
Thank you for your advise and kind words. Having support from you and the other ladies has really helped me a lot already. I will keep updating as soon as I know. Also my CA125 ON 18th Dec was at 156, I just had some bloods taken on the 8th ( after stopping the Cilest pill I was taking to help with my bones and heart and overall [protection has been feeding the tumours ) on the 1st I stopped taking this which had been feeding the cancer as it was a estrogen pill :/. But my levels were down to 149 from 156 so I am hoping that's something. Its a bit of weird time as I am waiting for my hospital stuff to be transferred but I have so much to sort before I go back to Cambridge its crazy!
Thinking of you Jasmine_Rose .. it sounds as though you are doing everything you possibly can. Well done to you for having so much insight and making sure you keep busy.
Keep us updated ... you’re never alone in any of this. Lots of love , Diane xxx
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