I’m super anxious. I was referred to cancer pathway after few issues on my ultrasound including I’ve been bleeding heavy, bloating, losing weight rapidly etc. On ultrasound there was enlarged right ovary with a lesion with own blood flow. There was pelvic fluid etc and my linning was 20cm. When I saw gynaecologist last week she said at my age (33) she said ovarian cancer was rare, but was more concerned with thickness of my linning. I had biopsy done I think of my linning and bloods taken (CA125 was fine at time of ultrasound).She said I needed an ultrasound (6 weeks from my last one which is next week) and MRI which will get an appointment for then see her for a review. I got an appointment to see her for the end of month but awaiting scans etc. I got a letter for follow up appointment at the end of the month. Anyways, I’ve just had a call and she wants to see me on Monday. Woman on phone couldn’t tell me much but I’m little concerned. I’m not sure if this is good or bad thing? Should I take someone?
SHOULD I BE WORRIED? : I’m super anxious. I was... - My Ovacome
SHOULD I BE WORRIED?
Hello 👋 I’m so sorry you’re going through this horrible time. All of the appointments and the waiting and the scans/tests and everything. If you’re anything like me my mind just couldn’t settle. It’s so hard. Everyone is different with how we manage stuff but if taking someone with you is helpful for you I definitely would. I’ve been by myself to all of my appointments because that works for me but in the waiting rooms there are more often than not people with partners or friends for support even for routine appointments.
Until your appointment on Monday just get through the weekend one day/hour/minute at a time. If you’re not in too much pain or anything maybe try and arrange to do a couple of things each day - just popping out for a coffee or something or for a walk, anything to have something to do to pass a bit of time.
I found watching exciting films helped me - I wasn’t good with anything too emotional which is usually my kind of thing, but I weirdly remember watched all of the Jurassic World films and getting some respite from my whirring brain even if it was only an hour and a half or so (and a new crush on Chris Pratt!!)
Sending lots of love and wishing you well.Take care and do what you need to do.
Beth x
Well said OrdinarySoul. I do the same - I keep my husband out of all my appointments . I can then choose which questions to ask and more importantly - which questions NOT to ask. That way I can process in bite sized chunks. I started treatment during Covid but even now I rarely see partners etc with any of our fellow fighters!My binge watch is BelowDeck or any moving wallpaper which is light - I can doze off and wake up and restart without spoiling the storyline.
I hope, Nattalhee, that you are lucky and never have to draw on the strength and resilience you can gain from OrdinarySoul and others through this forum.
Good luck Terri
Thank you. I went today, and she said did I have someone with me and for them to come to room. There was a cancer specialist sat in room too.
Basically said biopsy had come back with some concerning things including abnormal cells from small sample taken. She said could be endometrial cancer but I need MRI to check to see if low grade / contained etc. Best case is it’s precancerous cells and likely endometriosis. I need to consider future plans which maybe more biopsies and having hysterectomy but will need to discuss due to having heart condition etc. she said when MRI comes back then she’s speaking to MDT teams about next steps / action plan then will see her.
In meantime I have specialist nurses contact details if need to speak about it or have any questions.
My heads abit of a mess, a lot to taken in at the moment. X
Hi again, sounds like a big day. Hope you’re okay. It’s so hard to process everything, for me it comes and goes in waves - some days I seem okay and then it can really knock me off my feet. Take care of yourself, do stuff that you know works for you - try and take one step at a time but it’s hard to do that when you’re brain is shooting off in so many directions and possibilities xx
Hello Nattahlee
If you can, take someone with you. I had brain freeze at my appointments.
Please do not Google your symptoms. I was told not to, I was an idiot and ignored the advice.
Please let us know how you get on.
Love and hugs.
Beth x
Thank you. I went today, and she said did I have someone with me and for them to come to room. There was a cancer specialist sat in room too.
Basically said biopsy had come back with some concerning things including abnormal cells from small sample taken. She said could be endometrial cancer but I need MRI to check to see if low grade / contained etc. Best case is it’s precancerous cells and likely endometriosis. I need to consider future plans which maybe more biopsies and having hysterectomy but will need to discuss due to having heart condition etc. she said when MRI comes back then she’s speaking to MDT teams about next steps / action plan then will see her.
In meantime I have specialist nurses contact details if need to speak about it or have any questions.
My heads abit of a mess, a lot to taken in at the moment. X
Hi
I was the same when I was first told it was highly likely it was cancer but not confirmed. I had to wait 3 months for confirmation. Yes, your mind will be working overtime going through all sorts of situations. It is awful having to wait. I was self diagnosing 🤦. Please ring the specialist nurse, they would rather you speak to them than worry yourself sick of what could be.
Sending you love and hugs. We are all here for you.
Beth xx
Hi there. Sorry to hear about where you are at at present. It's entirely natural to feel very anxious. All you can do is try to keep busy if possible and focus on the present. Once Monday arrives, you will be clearer about what is happening then you will be able to process the plan better. If you think taking a family member or friend along to the appointment is helpful, then do that ,and if you can ,prepare a few questions you might want to ask.Positively it looks as if services are responding quickly to whatever information they've gleaned, which is always good.I have an appointment with my oncologist on Monday, which is scary as my cancer has clearly returned, and i will discover the extent of the problem and the plan in more detail then ,so I will be thinking of you, and keeping my fingers crossed that your appointment goes well .X
Thank you. I went today, and she said did I have someone with me and for them to come to room. There was a cancer specialist sat in room too.
Basically said biopsy had come back with some concerning things including abnormal cells from small sample taken. She said could be endometrial cancer but I need MRI to check to see if low grade / contained etc. Best case is it’s precancerous cells and likely endometriosis. I need to consider future plans which maybe more biopsies and having hysterectomy but will need to discuss due to having heart condition etc. she said when MRI comes back then she’s speaking to MDT teams about next steps / action plan then will see her.
In meantime I have specialist nurses contact details if need to speak about it or have any questions.
My heads abit of a mess, a lot to taken in at the moment. X
Having someone to take notes of what doc says can be very helpful as there may be a lot to digest and with me it can go in one ear and out the other. If nothing to digest, then you can celebrate together over a large slice of cake!
Thank you. I went today, and she said did I have someone with me and for them to come to room. There was a cancer specialist sat in room too.
Basically said biopsy had come back with some concerning things including abnormal cells from small sample taken. She said could be endometrial cancer but I need MRI to check to see if low grade / contained etc. Best case is it’s precancerous cells and likely endometriosis. I need to consider future plans which maybe more biopsies and having hysterectomy but will need to discuss due to having heart condition etc. she said when MRI comes back then she’s speaking to MDT teams about next steps / action plan then will see her.
In meantime I have specialist nurses contact details if need to speak about it or have any questions.
My heads abit of a mess, a lot to taken in at the moment. X
Sorry just read this. I was having trouble with the app on my phone. Hope you are doing ok. I can understand it being such a lot to take in. My head is similarly such a mess. Let me know when you know more. It’s so hard dealing with all the uncertainty.
thank you. I have MRI Tuesday and been told by nurse I will be discussed the following week in MDT meeting as they hold them once a week on a Wednesday apparently. So I should fingers crossed find out within the next few weeks & have treatment plan on place.
It’s hard but I find keeping myself busy. I’m going away for a few days after my MRI (had trip booked for few months) so be good to switch off away from everything.
How are you getting on? Have you had any further updates or appointments?
I would advise taking someone with you if possible as it’s hard to remember exactly what is being said when you are feeling so anxious. It’s also an idea to jot down any questions in advance you think you may have in case they aren’t covered during the appointment. I haven’t done it but know someone who asked the consultant if they could record the consultation on their phone to be able to listen to again later. They found that really useful. Wishing you all the very best for the appointment and try to distract yourself and be kind to yourself over the weekend. Xxxx
So sorry you’re going through all this. I’m also 33 and have something on my right ovary, could be a harmless cyst or could be cancer. The waiting is awful and being told that it’s unlikely due to my age is not in the slightest bit reassuring. I’m also really struggling - just can’t get it out of my mind at all and I have no idea how long its going to take to get to a diagnosis. Definitely try and take someone with you to your appointment if you can. Sorry that’s not much help, just didn’t want to not say anything when I know how hard the waiting is.
Please let me know how you get on. Have you seen anyone yet on back of your referral?
I’ve seen the gynaecologist but they can’t say what it is until I have the MRI which is next Friday. Was shocked when they said it’s 7cm big. Waiting is so difficult. Let me know how it goes on Monday.
Thank you. Mine said very unlikely the cyst was cancer and she was more concerned with my linning. The plan was to have another ultrasound as she said cysts etc can change or develop depending on cycle & linning etc. I was due to have MRI then I’d have appointment to follow up on everything to see where go which got appointment through for that end of the month. So little confused why I had call on Friday saying wants to see me Monday which I can’t help but think is something bad. I’m just worrying and the waiting really isn’t helping. I’ve had bloods in general and getting abnormal results like kidneys etc so everything at moment is just a worry.
Please let me know how you get on. Hopefully 🙏🏼 you’ll have your MRI soon
So you’ve not had any extra tests or scans since they last saw you? Hope all is ok 🙏🏻 I also had tumour marker (CA 125 etc.) bloods done this week, think I’ll try and call Monday and see if they will tell me the results of them.
No I haven’t. I was referred due to my ultrasound. She did a biopsy and some further bloods in my appointment. She was then referring me for MRI and ultrasound then agreement was to see her after. So I’m little concerned about this more and fact I got follow up appointment sent in post. Then I got call Friday afternoon saying she wanted to see me Monday.
This leads me to think something has shown and trying to remain positive. Hopefully 🙏🏼 it’s clear or shows abnormal cells rather than definitely cancer. Everyone around me I’ve told is a little concerned but I’m trying not to overthink
Hi, how did your appointment go? I went to see a different gynaecologist as was really worried after seeing my ultrasound report. He told me I either have borderline tumour or ovarian cancer. He said they won’t know until they remove it. Got CT on Monday and they are going to discuss all my scans on Friday then let me know the plan. It’s all such a shock and suddenly seems so much more serious.
Hi Nattahlee & Hannah
I am so sorry to read your posts, I thought it would be good to share 'our' story
Earlier this year in January my Daughter who is 32, had an 18 pounds ovarian cyst removed from her left ovary (along with her ovary) measuring 45cm x 18 cm x 15cm, it was the largest they had seen in St Marys Manchester. My Daughter had very similar symptoms, swelling, bloating, tiredness etc. The CA125 came back totally normal and she had this taken 6 times from November to January and every time it came back 'normal' the surgeon said at her age and the normal CA125 reading it was a giant ovarian cyst. The cyst was removed successfully in one piece with a laparotomy procedure. We went for the follow up meeting 3 weeks later and when we arrived there were two McMillan nurses in the room along with my Daughters surgeon, my heart broke.... we were told that she had an incredibly rare ovarian cancer, Mucinous ovarian cancer that isnt picked up on the CA125 bloods. 8 months on, she is doing really well, they have found another cyst on her remaining ovary but they are not concerned this time and will monitor it. As you are both similar age, it may help if you look at her story on tiktok, ChanellelMason - chanelle lois
I hope this helps
stay positive and keep talking
sending so much love
Mel x
Hi Nattahlee, like everyone else I’m sorry you are going through this. I may not have read everyone’s thoughts fully, so sorry if I’m repeating someone else’s thoughts. I always made a list of questions for my appointments, having a paper and pencil by the bed as my anxiety was at its worst during the night and I didn’t trust myself to remember things I’d thought of during those early hours when I finally got up and had to get busy with the day. I also think it could be worth ringing Ovacome Support team 0800 008 7054 and using their listening skills to help distill out which questions really do matter to you …. and anyone in your family who have feel support could help at difficult times. Above all, be kind to yourself, Nattahlee which, in my book, means I’m as honest with the joys and despairs equally….and everything else in between. If it is cancer, I’ve found it has made me value life differently. Warmest wishes.
When I have doctor appointments, I put my cell phone in my purse and "video tape" the visit.....it records the conversation and then I have all the information in one video to replay for reference.
Hi ya. Worrying is natural. It’s easy for us to say “don’t worry” but hard to do.
Write down all your questions and jot the answers beside them. I brought my husband (medical background and VERY calm) and he had the list.
HUGE YES TO DONT GOOGLE ANYTHING!!! Seriously. People go through this everyday. You’ll find out what’s going on and what you need to do about it 🤷♀️
G’luck xx
Hi,
It's so hard not to worry but I've found it's best to prepare and be elated it's nothing to worry about rather than unprepared for somthing worse. I was in my late 20s when I was diagnosed with a fairly normal ca125. I was also told it was rare, but 8 years on here i am after the all clear several years ago and annual check ups all good.
So, fingers crossed its nothing serious, but if it is, your not alone and I am proof that it can all be ok x
Hi. It's such a difficult thing waiting for appointments, I hope once you see the oncologist tomorrow you will feel calmer. I would definitely recommend taking someone with you who can note down what they say and if you have any questions write them down beforehand. Sending very best wishes and all fingers crossed for some good news. Xx
Dear Nattahlee,
Do make use of all the support services such as Macmillan and Ovacome and good friends etc to get you through this. It is only natural to feel your head is in a mess. We all do in the limbo period before the plan is settled. You need a lot of emotional support at this time and these services can help. Emma x
Sorry your having to struggle with such overwhelming uncertainties right now.Id certainly agree, as soon as you can ,chase up the Mc Millan nurse ,as I have always found them to be so helpful, and it makes me feel a little better as I feel more in control when i can discuss my fears with professionals. Otherwise the only way i cope is to try to limit my worry times to day light hours, and try to keep busy and get outdoors when possible. It can only work a step at a time. It's so challenging. Thinking of you.xx
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