Hello. I’ve recently been provisionally diagnosed with stage 1 ovarian cancer (low grade). It looks to be contained within the ovary.
I’ve been told they now need to check for microscopic spread. How likely is it that it’ll stay at stage 1? I can’t find anyone else with stage 1 low grade (maybe as low grade is rare).
I’m so anxious I can’t sleep or eat at the moment ☹️ I just want some hope whilst I wait.
Hello, you don’t say which diagnostics you have had but I am guessing you have had a CT scan?
I think your team must be pretty confident that the cancer is contained within the ovary otherwise they would have qualified this statement.
They are being careful to check and check again.
I know being diagnosed with cancer is very scary and doesn’t feel lucky at all but you have an early stage diagnosis and that is so good-OC is generally diagnosed too late.
Try if you can to take this good news to heart, get some support for your anxiety and take care of yourself by eating and drinking whatever you can. You are going to need your strength for the future xx
Thank you so much for your reply and kind words. Sorry, I should have said, I have had my ovary and tumour removed and biopsied & a CT scan. I’m now waiting for a hysterectomy.
well done you for presenting and getting diagnosed at such an early stage. Waiting for any results is difficult but it is out of your hands unfortunately. I would keep in touch with your surgeon’s secretary if it takes more than a few weeks. Fingers crossed for you. F x
Have you spoken to Ovacome? They gave great advice/knowledge.
I haven’t. Thanks for your reply. I’ll contact them on Monday.
I agree with Motiva Ovacome would be great to speak to. They even have a newly diagnosed group who will also have been recently diagnosed. ovacome.org.uk/event/newly-... and they have a rarer cancers group which included people with low grade I know scary but you've got this. Sounds like there's a plan in place. How are they wanting to check the spread? Important questions when it comes to plans is to ask what are the risks if i do the plan, what are the risks if i do nothing, also what other alternatives are there. Also for each how it might impact your quality of life including longer term (surgeons generally just concentrate on risks of surgery rather than longer QofL or risks from having g it). Then I'd research all you can to make sure any decisions are right for you.x
Thanks Notage. I previously had borderline tumours so have been monitored as kept my ovaries originally. I’m now waiting for a hysterectomy & surgical menopause which sounds delightful 😔 I presume they’ll check areas for microscopic disease at that point to confirm the stage. Thanks for the info. I’ll look into that now. I saw Ovacome do a zoom meeting for rarer ones but I don’t know if I am brave enough yet! X
I don't think they'd see microscopic disease until they do pathology after they've taken things out in op. I think that is the difficulty they can only visually check so why some of the higher staged have maintenance therapy just in case some cells left. I'd say ita generally less likely though it is so much of an issue if all was contained in the ovary from original op. Do please join some of the Ovacome sessions even if the gentle exercise ones etc as I'm sure you will enjoy them. The rarer cancer forum is also very friendly. You can also join Ovacome for free as a member so you'll be kept up to date.x
oh yes, sorry, I meant after they’ve had a good inspection of what they’ve taken out. I just wondered how often the stage changed/microscopic disease was found but I know I’m asking an impossible question. Thank you, I’ll definitely have a look into it. I appreciate your reply xx
I was diagnosed with 1st stage last May . Had a radical hysterectomy and they decided I did not need chemo. The. PET was clear. CT and blood work every 3 months
Have been fairly well with the good lords grace so far . The last CA 125 did come high but the CT and PET were clear
Have my fingers crossed for my next 3 month
Just stay positive and focus on happy moments. Live life to the fullest one day at a time
Thank you. I hope everything goes ok for you too.
I had stage 1 ovarian and endometrial and had a full hysterectomy without chemo. About 18 months later we found it spread to my liver because CA125 was climbing though still “normal”. Doctors said this doesn’t usually happen but it did. It was extremely scary and frustrating. I needed 8 rounds of chemo and HIPEC surgery but I’m now 1 year post chemo and 1.5 years post surgery. I still worry a lot and recently insisted on a scan and happy to say all is clear. Trust your gut and get checked out. I’m here to say that stage 1 can spread, though it’s unusual. One of my doctors reassured me by saying that just because it’s rare doesn’t mean they don’t know how to treat it. Wishing you the best. 🙌
Thank you for the reply. Sorry to hear that. I hope you are getting along ok now.
Snooklover, sorry to hear about your journey but glad you’re well now. What was the hystology of the endometrial and ovarian cancer? Endometrioid? Did the cyst or ovary rupture upon removal in the 1st surgery or it was taken intact? Thanks!
Hi. There are other people with low grade who you can connect with. If you’re on FB there are a couple of groups on there, both friendly and supportive. Ovacome have a link on their website.
There’s also an international charity called cureourovariancancer with lots of info specific to low grade OC.
The OC community as a whole is a lovely supportive place.
Thank you. I’ve recently joined the page. The community do seem so lovely and keen to help. I’ve had to mute the group temporarily as to be honest it completely scared me 😔
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