Hello. Not posted before and feeling nervous! I was diagnosed in 10/22 with HGSOC stage 3 after only a couple of weeks of symptoms. I am being cared for by an amazing team and after finishing 6 rounds of chemotherapy I had surgery on 24/4/23. Complete faith in my surgeon. At surgery they could not remove a 2cm area in my liver area due to bleeding and close proximity to a large blood vessel. The plan is to start maintenance therapy.
I feel very lucky because I’ve coped well with chemo and I’m recovering well from surgery. My problem is my brain is focusing on that bit that remains and not on the positives. Anyone else had experience with this?
Thank you x
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Hello, welcome to the forum no-one would ever choose to be part of, but now you are here, there are so many people who will share the benefit of their experince.
Mine includes being kind and gentle to your emotional, thinking and physical ups and downs, whilst retaining the feelings of wanting to challenge yourself to move forward and progress. Also, my GP's advice in 2014 after my second occurence (with a prognosis of two years) was "Eat well (i.e. sensibly), exercise well and rest well" and he knew I would find the last the hardest. It took me about two years to shift my energy input into ways of doing work, daily chores and hobbies in a way which was both kind and 'thoughtful/stimulating'. None of us know how long we may live so invest for the best future you can for yourself and those you love having in your life.
Atai's advice of Ovacome's helpline is excellent and also their Support groups, webinars and information sheets. Just dip in and out to suit how you are feeling to this very unwanted and unplanned experience in life.
And finally, so pleased you and your body have coped, and are coping, with chemo and recovery from surgery - these positives are great and to be appreciated and celebrated (I've not learned to add in emojis but if I had you'd have a champagne bottle, streamers and balloons!) Warmest wishes.
Thank you for your wise words. I have asked myself why so much concentration on a negative which was unavoidable when there is so much more to be positive about. 🥂xx
Welcome to this lovely caring group where you can share anything. It helps to realise that you are not alone. Well done on coping so well, I am really pleased for you. The chemo and the surgery are massive hurdles and your body both physically and emotionally has gone through so much.
My OC had spread to the peritoneum and it’s still there…however like you I was started on maintenance therapy, a parp inhibitor called Niraparib. (There are others, your oncologist will know which is best for you. ) I take 3 tablets a day and have done since last June apart from a couple of short breaks. I cope with the side effects like constipation by taking a laxative tablet. Niraparib works to stop the cancer cells reforming and growing. I have just had the CT scans from March 2022 and March 2023 compared and no growth/progression. I was stage 4 grade a when diagnosed with a prognosis of a year in Aug 2021. I’m still here and ok.
Please take heart and focus on the positive. Easy to say I know. Keep talking to your oncology team, they really are caring and ask lots of questions. There’s really good advice in the other posts about eating well, exercise, keeping busy and looking after yourself, rest when you need to. It took me a year before I could manage housework. I have learnt not to stress it. The helpline and various groups plus this one are brilliant. Sending a huge hug. Xxx
Good luck for tomorrow. I found it so positive having a plan. It felt like I had some control. On reflecting on the last 6 months my one piece of advice is not to worry if plans vary over the journey. I found it stressful when chemo got put back for a week due to blood count levels. That has passed now. It’s all in your best interest and confidence in your team is everything. xx
first — hello and welcome to a great site that will help you through .
I had a similar situation but I was left with areas less than 1cm as they were on my small intestine and that couldn’t be removed.
That was back in October 2020 . I have had various treatments but also lived a full and normal life . The best thing is to try not to focus on the bit that was left although it is initially a great worry .
Unfortunately, your brain will now focus on ‘ is that more cancer ‘ I once went for a chemotherapy session with a pain just at the back of my ribs and was convinced it had gone to my lungs. Turned out my bra was too tight 😂 . You will, in time overcome this but it is a natural reaction.
It is a very scary time initially but . Just try to enjoy every day. If you do feel down anytime , just post in this site and lots of us can cheer you up.
Sound advice from all the lovely ladies on here. I had a similar experience, despite ‘optimal’ debulking surgery March 2022 I was left with a 1/2 cm tumour across the ureter. Despite being diagnosed low grade, which is slower growing, I was still fixated on that last remaining bit, our minds do that!!
However, I can honestly say that 1 year on I don’t dwell on that anymore. Since being on Tamoxifen I have seen my CA 125 decrease to well within normal levels, so I focus on that instead. With every hot flush I picture the cancer cells shrivelling. Yes I still get the odd pain that sends me in a spin, but again that’s what our brains focus on.
I read on one of the chats on here of a situation where two ladies had similar diagnoses, but one had Sub - optimal surgery, whereas the other had NED. Both received the similar maintenance regimes. However, the lady who had been NED had a recurrence, while the sub-optimal showed no change. So the whole thing really is a lottery & having remaining visible disease does not necessarily mean a worse prognosis.
Sorry for the long post, but the above storey really helped me, so I hope it can put your mind at ease too. X
Just wanted to say welcome. I'm not surprised you are focusing on what wasn't removed because I do the same. My onc can give me the most positive news and my mind will be trawling his update for a negative aspect to gnaw on.
I imagine the aim of the maintenance drug is at the least, to prevent the area in the liver from growing so it sounds like a positive plan.
Well done for getting this far. It sounds as if there are good plans in place for you. It’s not just you…and it’s completely normal. I’m 20 years post successful surgery and I still think, whenever there’s a new little twinge or something that doesn’t feel quite righ, ‘is that IT back?’
It’s a feeling shared by everyone I’ve met who has had a diagnosis of cancer (that’s quite a few women, as I help out at a support group). We’ve talked about this and worked out a strategy that helps some of our members
:- In your mind’s eye, wrap that fear up in a silk scarf, and pop it in a drawer at the back of your mind. You can come back to it later,. The more you visualise it, the more it helps……some members even write it on a real piece of paper, wrap it up and put the paper in a box on their sideboard. You don’t have to forget it, just leave it for the time being.
Sorry if this sounds slightly batty but it works for some!
Hi. You’ve been given excellent advice here. The biggest challenge of this disease is over your mind and its fears. On the other hand you might do well to get a second opinion at one of the specialist cancer hospitals to see if they’d advise more chemo or radiotherapy. That might help put your mind at rest.
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