Just after some advice or reassurance. - My Ovacome

My Ovacome

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Just after some advice or reassurance.

Sophali31 profile image
19 Replies

Iv been having wierd pains and a few symptoms for a while , I managed to get the doctors to send me for a us pelvic scan . The scan came back abnormal yesterday and I have a solid mass with a blood supply on the right ovary. I'm having blood tests today and a ct next week. Naturally I'm in panic mode, I can't eat , I don't know how people wait like this. I should mention I'm only 35 , I have 3 children. What should I expect? what's the chances it isn't cancer?! Is cancer? .. can anyone share any similar stories? Thank you

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Sophali31
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19 Replies
Lyndy2 profile image
Lyndy2

I really feel for you! It’s horrible having to wait… you will feel much better once you know one way or the other.

Your medical team really are doing their best for you, even though it feels like torture at the moment.

If it were cancer, the quicker you are diagnosed and on to treatment the better.

Fingers crossed it’s not that at all xx

Sophali31 profile image
Sophali31 in reply toLyndy2

Thank you so much for your reply. I am trying not to think the worst, but struggling. Reassuring to have some one reply. I should have my blood tests back today, I am debating waiting until Monday to open as I'm sure theyl cause more panic and i may not understand them. Trying to behave normally around the kids is proving difficult. I appreciate the support. Thank you again x

Trickysite profile image
Trickysite

dear Sophali31, until they tell you it is OC, it is not OC. It could be a cyst. If it should turn out to be OC, doctors now view it as a chronic disease to be managed. We are all rooting for you. Emma xx

Sophali31 profile image
Sophali31 in reply toTrickysite

Hi , thank you for that, I will repeat that to myself over and over. Do they? That's reassuring. I think once I know either way I'll feel more in control , iv been trying to get them to listen for a long time and I'm so scared it's been left too late. I keep going on google which i know is so stupid but it just tells me theres no cure. Thank you for your reply x

Trickysite profile image
Trickysite in reply toSophali31

oh, never look at Dr Google is the mantra on this website. He is always out of date. So cross him off your hit list. All I wrote is true. I must say, personally, I never look at the doctor's results and comments as I am no medic and would not know how to interpret them. But other ladies have a different attitude and it is a personal decision as to whether you read them or not. in the meantime, keep repeating, as you said, and it is almost never too late to be actively treated. I am stage 4b but living a good life!

Katmal-UK profile image
Katmal-UK

Hi. Waiting is the worst part because of the fear of the unknown. Once you know what you are dealing with then you can deal with whatever. You probably feel you can’t deal with worst case scenario but you will be stronger than you think you can be. As for the now, the waiting, keep in mind that worrying won’t change a thing just ruin the here and now. Try to keep yourself busy (can’t imagine that will be difficult with 3 beautiful children). Once you have had your blood test and CT scan then if it is cancer you will be fast tracked for treatment, whether that be possible surgery (nowhere near as bad as you would imagine) or chemo and surgery. It sounds scary, it feels scary but trust me it’s doable and I speak from experience as a wimp. I have everything crossed for good results for you. Btw stay off Google, full of outdated stats and Dr Google won’t tell you what will happen, you are you. Sending you a big virtual hug. Please do let us know how you get on, we are all here for you. Kathy xx

Sophali31 profile image
Sophali31 in reply toKatmal-UK

This is the loveliest message thank you, I'm so grateful people have replied. I'm just in panic mode and I cannot pull myself out of it. I feel more positive today, but still struggling to eat, in and out of tears. Im just scared but you are right there is no point in worrying until I know. I am trying my best . I will keep this thread updated if that's possible. Again thank you so much for your reply.

Bluetilly profile image
Bluetilly

Dear Sophali31

The waiting really is the hardest time ... and all of us in this chat have been there! Once you know, even if it's not the best news, you will manage better because you will have a treatment plan and things will move fast. Let yourself have a good cry if you need to, but then stand up and face the future with hope and courage because it is NOT the end of the road. There are lots of possible treatments and new ones coming up all the time and you will be in excellent hands with your oncology team. Please please don't google OC as there is much misinformation out there, and also outdated material. Trust your oncology team and ignore the internet ... and those people whose grandma had it years ago! Big hugs and God bless

Bluetilly

Sophali31 profile image
Sophali31 in reply toBluetilly

Thank you , so much. I think that's why I came here, I needed to speak to someone that knows how I feel right now. Honestly all of this makes me feel so much more hopefull. I appreciate it so much. I just need to know now. Thanks for your positivity.

Hi, I too was diagnosed via a routine check with a mass on my ovary, I was fast tracked through and operated on within 4 weeks of diagnosis I too went on Dr Google and completely messed up my mental health. Please stay away from any search engines about OC, as the other ladies have said they are out of date and statistically give you all the bad news not the successful ones.

Everyone is different, it could just be a cyst, but if it is OC then please dont worry as they will sort it immediately.

Can totally sympathise with you as I didnt sleep, eat, focus even hold a conversation with people while I was waiting my results. Struggled with everything.

Watch funny films, comedies and avoid any depressing news as this will bring your mental health down, talk to your friends and chat here whenever you can

Take care and wish you all the best xx

Sophali31 profile image
Sophali31 in reply to

Hey, how are you now? .. I know cysts are a possibility, and also benign masses. I read the report on my doctors app and it had cancer alert in capital letters and other things that I immediately googled which obviously wernt great. Whilst I know it's great its flagged like that and as urgent it has probably scared me far too much. Yes that's where I'm at , feel like a robot. Thank you for the msg and the support. I really appreciate it.

in reply toSophali31

Hi, I was very lucky. Was cancer but stage 1 found early. Big debulking op and 6 rounds of chemo to make sure all cancer zapped. My health now is amazing.. no more symptoms, lost 3 stone in weight and my vitality and flexibility has returned. I'm half way through my chemo and my CA125 is now 12.7 normal range.As soon as I got my treatment plan from the hospital my attitude and mental health changed for the best.

My first letter to tell me I had a cyst came with a rapid access clinic leaflet which highlighted cancer...very scary to read but lucky that we are treated very quickly.

Please try not to worry until you get your ct scan,

Always here if you need to chat.

Xxx

Tealgirl7 profile image
Tealgirl7

I totally understand your frustration. I was an operating room nurse and very aware of things that can happen. I was ill for a year before my family doctor even ordered some significant testing. I was diagnosed 17 years ago with 4th stage hcoc. I had just had my first two grandchildren in the last month. They are now 17 years old and I am enjoying my life. Even the worst diagnosis which I had is not a death sentence. The waiting is still horrible as I go through that with testing still. The device not to read anything on the internet is very good. Enjoy each day and fingers crossed. Sending hugs

Goodgirl98 profile image
Goodgirl98 in reply toTealgirl7

wow, your story is so encouraging and inspiring to hear. I have two teens and my prayer everyday is to see them as happy adults and to play with my grandkids!

AuntyOrange profile image
AuntyOrange

Hi. You are in a horrible place right now, understandably but please don't bury yourself before you get all the facts. Whether or not it's cancer, there are always options. I was diagnosed with stage 4 oc in 2015 & as someone else here said, the Drs now treat it as a chronic disease not a death sentence. Surround yourself with people who will support you if the news is not so good and who will celebrate with you if the new is good. Tell your children that mummy is a bit stressed at the moment & needs lots of hugs. Hugs are so important right now. We're all here for you. xxx

Sophali31 profile image
Sophali31 in reply toAuntyOrange

Hi, just hearing people say it's not a death sentence is so relieving. I feel like I've always heard ovarian cancer to be just that. I have the best husband and family. It's the wait as people have said , it's very very hard. My bloods would be back by now but I don't have the guts to call , I figured they'd be the same in a few days when I go for the ct scan. I'm functioning better today but I cannot eat, sick with worry , thank you for your reply xx

Goodgirl98 profile image
Goodgirl98

I will pray that it is just a cyst and nothing more. Waiting to hear your update 🤞

Allotmenthappy profile image
Allotmenthappy

Must echo what others have said. The waiting was the worst for me. Once I had my diagnosis (stage 3/4) 5 years ago, everything started happening - chemo, surgery, chemo etc. I've had to repeat that but I know the oncology team have my back. I'm currently in between treatments on no drugs and feel pretty good. For me, the panic subsided a lot when I knew what was going on. Also, unstressful distractions, which may be a big ask with three children (!) like listening to really gentle outdated comedy (P G Wodehouse stories highly recommended) on earbuds when the anxiety kicked in in the middle of the night - eventually they became like a sleeping pill as soon as I pressed Start. And I blogged to keep family and friends informed without having to tell everyone everything over and over. Hope some of that helps you and wishing you all the very best.

Sophali31 profile image
Sophali31

Little update- I had my ca 125 level back at 20 which is within normal range. I saw a consultant today, was expecting a ct but didnt happen. He said its not a cyst . The good things - it's small in size and my ovary is enlarged but only slightly. The fluid around the ovary looks fine and there is no loose fluid in my stomach. The not so great things , its has a large blood supply in and around, I need an mri to look at the ovary better , followed by a ct to check for spread. I asked I it could be benign after alot of cancer talk and he said it could be. He is suspecting a germcell tumor?! I had bloods taken again for tumor markers in other areas and the germcell test. Is this all standard procedure? I can't say I feel any better , but the procedure is looking to be. Confirm if it is cancer, check it hasn't spread, remove 1 or both ovaries if it hasn't. Full hysterectomy, lymph nodes removal etc if it has. He said that is often enough if it is caught early enough to deal with the germcell cancer and that I most likely wouldn't need chemo unless it had spread. Now I have another within 2 week wait for mri , and I should know more in 3 weeks he said. Again , not feeling great, no even on the wait part to find out if it even is cancer. I do think from the way he spoke that he thinks it is. the next few weeks will be a struggle but I am managing slightly better than I was. I hope you're all OK xx

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