Scared. Two week urgent referral

Oneglassisnotenough · 2023-05-11T00:33:11+00:00

I can’t sleep for worry. I have severe anxiety as it is. I have been referred for the urgent two week cancer pathway. Have had symptoms for a while and an internal scan has found something that doesn’t look good on my ovary. Got to have blood tests for tumour markers on Friday. Dr sounded very serious when she called me today and apologised for telling me over the phone but due to the urgency she said that she had to. I’m seeing her tomorrow. Please can someone hold my hand.

Groutyonehereagain · 11/05/2023 01:41

I’m an ovarian cancer survivor, it’s now ten years since I had a 10cm x 6cm tumour removed along with a full hysterectomy.

The waiting is the worst part. Try and keep busy and do some nice things. If you’re not sleeping, ask the GP for help. The time will pass and you will be seen. You might need more tests to find out what is wrong. Most ovarian cysts are harmless but it’s good that they are checking for you. My blood test, the CA-125 was normal, it’s not a reliable test for cancer.

You will get through this. I thought I wouldn’t cope but we find strength we didn’t know we have. 🌻

Original poster

Oneglassisnotenough · 11/05/2023 01:47

Bless you , thank you for replying. Great to hear that you are doing so well 💕

I have two cysts - one on each side . One she says is looking normal . It’s the other one that’s not: I’m sure she mentioned the words solid and irregular but it was all a bit of a blur.

I am very scared and will ask lots of questions tomorrow.

Thank you so much for replying x

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Groutyonehereagain · 11/05/2023 02:24

You are very welcome. My GP was brilliant and very supportive. I have everything crossed for you. Do let me know how you get on. 🌻

Beautifulsunflowers · 11/05/2023 02:44

While you’re awake and worrying write down a list of questions to ask at your appointment tomorrow. Will you be going alone or is there someone you can take with you?
Wishing you all the very best x

Toastandmarmiteandtea · 11/05/2023 06:18

I had an identical experience last year which turned out to not even be my ovary in the end - was my tube. I was told following a scan that my cyst looked worrying with solid matter. Was referred on two week pathway with a high ca125 test and symptoms. The consultant was fee less concerned though and then following an mri, confirmed it was unlikely to be anything to worry about. Surgery confirmed this. Lots of complex cysts can appear worrying with worrying features and the gp will have to refer on two week wait. I understand your worry though. I was beside myself.

WorriedMillie · 11/05/2023 06:21

Hand hold, OP, keep reaching out for support xx

Original poster

Oneglassisnotenough · 11/05/2023 07:15

Thank you for all your replies. Keep crying and slept no more than for two hours last night. I’ve looked at Google which I know is not the best idea in such situations but from what I have looked at it’s all saying surgery is likely. Perhaps even a hysterectomy .

Oh my . I feel sick. I have two children and how am I meant to get the little one to school.

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Beautifulsunflowers · 11/05/2023 07:21

Knowledge is power! You will know more after your appointment and can then plan. What time is it? Try and keep busy until then.
Do you have someone who can go with you?
KEEP AWAY FROM DR GOOGLE!!!!! I know this is easier said than done and I’d be the first person looking up all the possible scenarios! but at the moment that’s all they are - possible scenarios. Nothing is definite yet so try and stay calm, one step at a time.
I hope you have real life support x

AGreatUsername · 11/05/2023 07:34

Hi @Oneglassisnotenough , I am also an OC survivor, I was diagnosed last year with 2 tumours, 1 on each ovary. Those words “it doesn’t look good” were the exact words my sonographer said to me during my first ultrasound and I remember just feeling my world fall down.

Big hand hold for you, please post on the cancer support thread within this sub if you’d like. We support people with a possible diagnosis as well as an official one.

It may well be something benign still, or a borderline. But if it’s not, this is the worst bit. This waiting and fear. If they believe it to be possibly cancer they will move fast so be prepared, I had multiple scans, bloods, drains within 3 days of the first scan. If you want a chat feel free to PM me or as I said post on the support thread. (If you haven’t already. I haven’t looked this morning yet!)

MissSmiley · 11/05/2023 07:49

Oneglassisnotenough · 11/05/2023 07:15

Thank you for all your replies. Keep crying and slept no more than for two hours last night. I’ve looked at Google which I know is not the best idea in such situations but from what I have looked at it’s all saying surgery is likely. Perhaps even a hysterectomy .

Oh my . I feel sick. I have two children and how am I meant to get the little one to school.

Hopefully everything will be fine, it's good they're checking. IF you need surgery you'll have time to find a way to get your children to school. Are you married? I'm a single mum to five teenagers and I had cancer last year followed by a big operation (in hospital for five weeks) and everyone was really helpful, my brother who has a big job, a younger family and lives 4 hours away even offered to care for me when I came home, people really stepped up, I never realised I had so many good friends. My ex moved into my house while I was in hospital and kept the kids normal routine. His partner helped loads too. You'll manage IF it comes to that. You're in the worst not knowing stage. I know it's difficult waiting to find out if anything is wrong but you'll get there, it's ok to feel wobbly with the uncertainty. Keep posting

Original poster

Oneglassisnotenough · 11/05/2023 18:07

Thank you for your replies everyone.

Saw the Dr today. It’s a mass and not a cyst. one side is a cyst and identifiable and no cause for concern. The other is the concern and the reason for the urgency. I’ve got to have the Tumour markers blood tests tomorrow.

I don’t know what to think really. I keep alternating between feeling okay to then sheer panic and feeling absolutely overwhelmed.
I suffer with an anxiety disorder as well so that is adding into the mix.

Please can I have a few more handholds. They mean a lot 💕

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Crikeyalmighty · 11/05/2023 18:13

@Oneglassisnotenough I'm hand holding xx I've had a ton of tests in last 6 months and every time I feel exactly like you are doing now. The GP said to me - at least you are in the system, once you are then action can be taken.

AGreatUsername · 11/05/2023 18:16

@Oneglassisnotenough handhold here. So you’ve likely been referred to gynae oncology and as you’ve already had a scan they may discuss that before seeing you or may like to repeat the scan themselves or get a CT scan for more detail. I had my 2ww because I was tested for CA125 due to bloating , ultrasound in gynae onc and then a CT to give them a good picture of what was going on.

Don’t be afraid to chase a bit, asking to be put on the cancellation list etc. Hurry this along if you can so you can get an answer. If they suspect cancer it is very likely you’d have a total hysterectomy, I’m not sure how old you are but I had mine last year at 36 and it was really not that bad. If you would like to chat the offer of a PM is always open.

Original poster

Oneglassisnotenough · 11/05/2023 18:59

Thank you . I am really quite worried . I appreciate your support everyone x

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Original poster

Oneglassisnotenough · 12/05/2023 06:53

I slept a little better last night ( had some diazepam) . My anxiety has been utterly horrendous. I have severe and diagnosed anxiety and can’t even work with it.
I told a friend what was going on last night and felt like she was dismissive- as though it’s the anxiety talking and I am making it up. It hurt but I picked myself up and carried on.

Saw the Dr yesterday and I asked lots of questions. She showed me the report of the ultrasound from the senior radiographer. Report is a code 5 and is being treated as urgent.

It is a complex mass and is very suspicious hence the urgency . I don’t think it is actually on the ovary - but next to it from what I can make out from the Doctor.

The Dr was very nice and said it wasn’t anything I had done. That is a worry I have had : what if I have caused it through my own worry and poor mental health.

Today I have the tumour marker tests and then wait for the call for the gynaecologist appointment. I don’t know if it is a gynaecologist oncologist but I am worried .

The Dr said it is likely I will have a CT and / or MRI and then a multi disciplinary team will likely meet to discuss treatment. I suspect it’ll be removed .

Feel really anxious and quite upset this morning.

I am nearly 48, peri menopausal and what worries me a lot is my grandmother had breast cancer and possibly ovarian cancer and passed away in her forties.

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AGreatUsername · 12/05/2023 14:21

I highly recommend contacting your local Maggies for support if needed. Also Macmillan do a phone line and webchat too.

If it IS cancer, treatment has come on a lot in recent years for ovarian. There are many treatment lines available. The process is unpleasant and jaw droppingly frightening but there are many many women who have beaten OC or are living with it in an almost completely normal way. Do not look at the stats online, these are all out of date and not helpful as they just cause fear. Have they told you when your CA125 results will be back?

Original poster

Oneglassisnotenough · 12/05/2023 14:24

AGreatUsername · 12/05/2023 14:21

I highly recommend contacting your local Maggies for support if needed. Also Macmillan do a phone line and webchat too.

If it IS cancer, treatment has come on a lot in recent years for ovarian. There are many treatment lines available. The process is unpleasant and jaw droppingly frightening but there are many many women who have beaten OC or are living with it in an almost completely normal way. Do not look at the stats online, these are all out of date and not helpful as they just cause fear. Have they told you when your CA125 results will be back?

Thank you for the reassurance 💕
Just had my bloods for tumour markers and promptly burst into tears when I entered the room.
Had a call this morning from the hospital and they’re seeing me on Tuesday.

I feel really shaky.
Thank you for all the replies and handholds.
Means a lot x

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TokyoSushi · 12/05/2023 14:24

Oh goodness OP, that all sounds very stressful. Hope that you're on the road to getting sorted very soon.

Original poster

Oneglassisnotenough · 13/05/2023 20:28

Bump

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Mrsphilmiller · 13/05/2023 20:34

How are you OP?

Original poster

Oneglassisnotenough · 13/05/2023 20:46

Mrsphilmiller · 13/05/2023 20:34

How are you OP?

I feel quite sick. Not sure if it’s genuine as in whether it’s with worry or actual nausea.
I have the hospital appointment on Tuesday. Hopefully cancer marker results will be back by Monday.
It honestly doesn’t feel real and I keep alternating between “ no, it’s not cancer… it can’t be” to “ you are kidding me. What do I do now “ .

I am so worried .

It doesn’t look great does it.

Thank you for asking me how I am.

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Robotik · 13/05/2023 20:51

I have everything crossed for you that you get some good news x

lightlypoached · 13/05/2023 20:54

Hello OP. Just popping in for a handhold.

Dont really know what to say but just to let you know you're not alone x

Original poster

Oneglassisnotenough · 13/05/2023 20:54

Robotik · 13/05/2023 20:51

I have everything crossed for you that you get some good news x

Thank you x

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nowtygaffer · 13/05/2023 20:56

Thinking of you OP.

I had cyst removed and ovaries removed last year. I remember the horrible wait for my CA125 blood test. It was over my son's 18th birthday so felt like I was putting a brave face on for everyone else!

I really hope everything goes OK for you. x