My Ovacome
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Recent diagnosis Low Grade stage 3 serous carcinoma OC

I have recently been diagnosed and have just had my total hysterectomy and debulking surgery and have been told I will start Chemo in 2 weeks time. I am confused as I have also read that low grade is less responsive and am dreading all the side effects. I feel I really need to connect with others in a similar situation. I am 50 and didn't have a lot of symptoms so it's all still such a shock. My OC was found incidentally through surgery for fibroid removal. I am struggling with maintaining a positive attitude and have found myself getting v weepy during the day. Feel like I really need support from this website.

Amanda

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Hi Amanda ...

I'm sorry you're going through this.

Being diagnosed with cancer is very hard and you may be going through a range of emotions. Getting your head round it all is like feeling through a fog when you're not even on the highway. There are so many things to understand and the uncertainty can leave you unsure about what the future holds.

Although you might not have thought about things yet, when Ovarian is diagnosed through an incidental finding during surgery, it's much easier physically on the patient. Many women are put through a very distressing experience at A and E with either fluid in the pleura of the lung or fluid in the abdomen. It's very debilitating.

You're at a point now where you're getting a treatment plan. Low grade doesn't usually respond well to treatment but that doesn't mean to say treatment doesn't help. Many women faced with this cunning little adversary become despondent at having to go through chemotherapy for little effect. A lot of women do, however, get stable disease which they don't realise is a good outcome for low grade disease.

M. D. Anderson in Texas is the world hub for low grade Ovarian. They're working on MEK inhibitors and other treatments. They also advocate the use of hormone treatments like Tamoxifen to inhibit growth.

I had double agent carboplatin in 2011. Taxol has unwanted side effects long term sometimes like neuropathy and my doctor thought that since Taxol is the 10% boost, I might save this drug for later treatments since there are few treatment options.

The disease was on my liver, in my lung and across my abdomen. I had a partial response to chemo. At diagnosis, I had three and a half litres of fluid drained from my abdomen. The rest was in pockets.

I had a large necrotic tumour removed in 2013 and told I was advanced progressive. I was also told that they'd hold off treatment for a few months until I got symptoms which basically meant abdominal fluid build up. I was referred for bowel and pain management. The fluid hasn't shown up as yet.

It's not an easy disease to understand and I don't understand it myself really but it's now November 2017 and I'm still here. That's six years and eight months.

Sue xx

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Hi I’m a recently disglow grade too I’m on hormone blocks. Sorry I don’t know a great deal x

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Hi Amanda

You sound like me five months ago! I also have stage three low grade, diagnosed in Spring this year. I did three rounds of chemo and scans were stable with no disease seen so came of chemo and did a hormone blocker letrozole. The word coming out now is to do chemo for low grade, MD Anderson follows that protocol. The letrozole has really good feedback. I’m on it with some joint pain but manageable.

Chemo wasn’t as bad as feared. They have good anti nausea drugs and I only got sick first round. It does make you awfully tired and you may have joint pain. But normally only for the first 3-5 days.

Your worry is totally understandable and it’s all I ever thought about in the beginning. But now I Am cramming as much as possible into life. In a strange way this diagnosis really made me reevaluate my life, eating, friendships, work etc.

Feel free to pm me if you’d like to chat further. Us low graders need to stick together! There’s a great low grade Facebook group as well,

Hugs

Babbey

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Hi Amanda

I was diagnosed low grade 3b 3 years ago at age 39. I had debulking surgery but no other treatment. Surgery did not quite get all of the tumours due to where they were though it was considered to be a successful surgery (difficult to explain why but I do agree that it was a successful surgery). However, at that time, for me personally, the oncology team recommended no chemo. I did think about it a lot and I agreed with them.

I had already prepared my head for chemo as pre-surgery we knew that the cancer was all over the abdomen, but we didn't know it was low grade until after surgery. I asked a lot of questions around the possible treatment and we went into a lot of detail as to why the 'watch and wait' protocol was the most appropriate for me.

Over the last three years I have thought about it and wondered occasionally what would have happened under a different protocol. Of course that is something I will never know. No two people are the same even with a similar diagnosis. One of the lasting memories of my discussions is the oncologist saying "we don't know how your tumours will behave" and I think that is true. Hindsight can't even tell me whether I chose the right treatment strategy or not!

Chatting to people on here and in other forums we seem to have all taken the route that seemed best for us. Some have gone with chemo and found it to be beneficial. Some have gone with meds such as letrozole and found it to be beneficial. I haven't met many people like me who have not had anything other than surgery, though there are others who have gone down that route. I feel that I am doing ok. I had my check up last week and there was no indication of anything to worry about currently.

I had discussions with my oncologist last year about letrozole and she agreed that of all the potential treatments that would be the one that she would recommend for me if I wanted to start it. I actually decided again not to take treatment at that point as I felt stable (and still do this year). However, I think I read something about letrozole being of most benefit when started straight after surgery (though there may be other evidence now or someone taking it could comment further on that).

I would never try to encourage you down a particular treatment route as it has to be whatever you feel is right for you. I have commented on this thread because you may find that with low grade there are differences in treatment strategies and you may come across them. I don't know if this is partly due to the protocols in place at the time we were each diagnosed or geography. It's probably due to a mixture of different things.

It is a bittersweet situation to be in when diagnosed with low grade I think. It does take a while to get your head around it and to explain to other people what it means. There is a particular perception around cancer and treatment. I find I end up with a barrage of questions as people can't understand why I'm walking around knowing I have OC tumours but I'm not having treatment, but I'm ski-ing, walking the dog, doing yoga, etc.

Trying to stay positive and feeling weepy are entirely normal and understandable. Allow yourself moments to feel weepy. A good cry is incredibly therapeutic. Apparently sad tears have more stress hormones in them and are the body's way of excreting excess stress hormones to help you to feel better! A good cry occasionally is expected. It's only an issue if it becomes excessive, but really in the weeks after a shock cancer diagnosis let's be honest it is expected.

I know there are other low graders in this forum and they may share their experiences with you too.

X

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Thank-you so much for this reply it really really helped me today xx

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Kat fish what a lovely response!:))

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Hi Amanda. Do you mind if I ask you if the hysterectomy was as bad as you thought it might be. I have a 13cm mass on my ovary and have to have hysterectomy. In my 60s no family or support. i'm so sorry to hear what you're going through. a big hug. Daisykin

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The pain was managed very well and there is a lot of support in the hospital - u will be well looked after. Good luck with it x

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Hi Amanda

I was diagnosed in August 2015 with low grade 3a, hysterectomy (ovaries/fallopian tubes/omentum) followed by 6 Carbo/taxol - as a preventative as had positive micro cells after washings.

The chemo was tiring but no sickness, had leg pains for 2/3 days after each session but wasn’t horrendous - take all the drugs they give you as they help. Listen to your body and don’t feel guilty if you just want to sit and watch TV all day.

Used the cold cap so didn’t lose all my hair, it thinned but used hair fibres so wasn’t obvious. You will be entitled to a wig which was of good quality.

You will be weepy you have just been given a life changing diagnosis but 2 years on I am walking with a spring in my step again and feel well.

Your head never leaves you though, you will wake up with the thoughts every day, it is always there especially when you want to plan something for the future but you have to put those thoughts in the filing cabinet and get on with living.

Your life has changed but not ended.

I am here if you want to talk further.

Bev xx

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Hi Amanda. I too have low grade serous 3c. Diagnosed in January last year, and had surgery in Feb, where all visible tumours were removed, at the expense of getting a stoma, as my bowel had stuck to a tumour. I then had 6 rounds of carbo/taxol and my CA125 went from 900 at the start of chemo to 50 at the end with clear CT scan. In February this year it went up to 200, and as I'd had a few bouts of sickness, my oncologist started me on chemo again, this time carbo/caelyx. Again I responded and level went back down to 50, and has stayed around that, though a small lesion shows on CT, but isn't growing. I've now been on Niraparib for a month, with the aim of maintaining stability. I consider myself to have a good quality of life - living with OC, not dying from it. Please don't automatically

assume you won't respond to treatment, everyone's different. It's not curable, but it is treatable. It's all very scary, and you will have bad days, but you'll also have good ones, and we're here to support you all the way.

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Being diagnosed with OC is a shock, & it does take time to get your head round it, & you can fell you're on a rollercoaster ride of emotions. When I had my initial surgery, I couldn't think about life beyond my next appointment at first, My ovarian cancer is GCT, which, like your cancer, has a reputation for not responding very well to chemo, but the oncologists can't tell in advance which treatments will work best for which individuals. We are all different. My cancer recurred after a couple of years, & I needed more surgery. I remember being very weepy at first. But I found that as I recovered physically from the effects of the surgery, my mood improved, & I gradually began to cope better. I was told that I could also be prescribed antidepressants for a while if I felt I needed them. The thought of starting chemo for the first time is scary, but you may find you cope better than you think you will. And chemo nurses are usually very approachable, knowledgeable & friendly. Di

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PS I was diagnosed early 2008, so it will soon be 10 years. Di

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I️ was diagnosed in July 24 of this year with stage 2 low grade serous. After having my hysterectomy and removal of tubes, ovaries, uterus, omentum and cervix ... I am now on Letrozole. Having my first scans early January. Hang in there and really take one day at a time as it is very overwhelming when first diagnosed. There are different opinions for treatments, as this cancer for now is not curable, but it is my understanding that they are working on new treatments targeting low graders.

Sending you good energy and virtual hugs and here you have a great group of ladies that you can share all your feelings and emotions and journey always with open arms.🦋🦋💗💗

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