Scared and in holding pattern.: I recently went... - My Ovacome

My Ovacome

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Scared and in holding pattern.

sandybaskets123 profile image
17 Replies

I recently went for annual check up and during my pelvic exam my doctor felt something. He said he felt a fibroid. He was pretty certain and said I would need a hysterectomy. I went for my ultrasound and the doctor said it looked like it was detached from the uterus. They think it's on the ovary. He referred me to a gynecologist oncologist for my hysterectomy next week. I'm scared and frozen. My Ct 125 is 93 but all my other blood work was fine. He said anything like if it was a pendunctulated fibroid could raise it. He said it was a little concerning. There is some kind of mass in there and it needs to come out. Tomorrow is my cat scan and next week the hysterectomy. I'm scared. Worried about Malignancy. He gave me all scenarios. Any advice would be helpful

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sandybaskets123
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Katmal-UK profile image
Katmal-UK

Hi Sandy. Your fear is fear of the unknown. The positive is that your dr is acting very quickly and that's good. I would say that the hysterectomy is not as bad as you may be imagining and one bit of advice is do not google. All you will do is scare yourself more. Google isn't going to tell you what the drs may or may not find. Unfortunately you will need to wait until after the op to discover exactly what is going on. I sincerely hope that this is a fibroid xx sending you a big hug xx please feel free to ask questions. xx Kathy xx

Lyndy profile image
Lyndy

Hello....sorry to hear you are in this position. You don't know, your medical team don't know and you have to wait and wait for test results. I am afraid it is pretty standard but you should be reassured that your team are on it and with any luck they will rule out OC and find out what's going on for you. Meanwhile if you can take it one day at a time, focus on enjoyable distractions and let them do their work. Best of luck!

Cropcrop profile image
Cropcrop

I do so understand you being scared. Like Kathy says, the operation, whilst a big one, isn't as bad as you may think and I agree don't use doctor google, he's not very good and can lead you into all sorts of scenarios that don't apply to you and scare you unnecessarily. Your doctor has acted really quickly and positively and this can only be a good thing, there are many ladies here who wish they'd had such speedy action from their doctors.

The fibroid, if that is what it is, can raise your CA125 so at this stage don't read too much into it.

Good luck with your surgery, once it's done you will know what's going on in there and it can then be acted on accordingly if needed. I really hope it is just a fibroid for you.

If you need any help or advice re the surgery or anything else feel free to ask away, no question is too small or silly. Take lots of care and try not to overthink this situation until you know what it actually is. Big hugs and lots of love ❤️ xx Jane

sandybaskets123 profile image
sandybaskets123

I appreciate your responses. My mind races and I go right to the worst case scenario the doctor mentioned. I know it's their job to tell you but being attached to the ovary concerning. Thank you

Jessica-DianeB profile image
Jessica-DianeB

It's a very worrying time. Unfortunately worrying won't change the results, however once you get them, if you happen to be facing cancer, you will be in a better position than you are now. so many cancers going undetected. It sounds like you are in good hands currently.

Thank goodness for your annual check up.

Please come on here whenever you need advice, always someone to help, but truly wishing your will not be in the club! xx

Marieloiuse profile image
Marieloiuse

Hi Sandy.

We have all been in the horrible limbo you are in at the moment. You are suddenly projected onto this sort of unreal twilight world of huge anxiety. Awful, awful and very lonely. But you mention your growth was picked up on an annual check up. So I imagine you've not any symptoms? Also you are being treated quickly so hopefully you will hear very soon that all is well. My initial diagnosis was 'Fibroid?' and when other sinister possibilities were mentioned I had never wished so hard for anything in my life as that fibroid! Mine did turn out to be OC stage 1 (No further treatment) and that was in 1988. I am extremely fortunate, I know. Take heart; if yours is similar (fingers crossed it's not) then it could be at a very early stage. My stage 1 did give me symptoms and I presume you're symptom free so a good sign

.Wishing you all the very best.

Catherine x

sandybaskets123 profile image
sandybaskets123 in reply to Marieloiuse

Hi Catherine. Thank you for responding. What kind of symptoms did you have. My stomach is only bulging for the past 2 months and my annual was Aug 3. I'm so afraid. I have 3 children and the limbo is driving me crazy. ❤️

Marieloiuse profile image
Marieloiuse in reply to sandybaskets123

Hi Sandy.

My main symptom was needing to pee a lot more frequently. I also had a hard bulge to the left hand side of my stomach.

Unbelievably the mass ( or suspected fibroid) I hadn't noticed til it was pointed out to me by my GP when I went with with symptoms. I just thought I had some sort of urine infection! To be thrust into the world of OC was utterly horrifying as you know, particularly when you have young children. After that visit to my GP I could really feel the mass especially first thing in the morning when my bladder was full. I also had a couple of periods in between periods which were mucousy. Looking back I realize I was very very tired which I just put down to having 2 young boys (5 and 2) but I hadn't noticed this either.

My tumour was large (something like 18x15cm) but hadn't spread which indicated no further treatment.

But I recall those few weeks as the worst of my life and I wouldn't wish them on anyone. The thoughts I used to have about the boys......unbearable.

I can't say don't worry as it's impossible not to. My mind was all over the place. Sometimes it helped to try and convince myself that this was just a fibroid so just enjoy the late summer (it was this time of year) but then the dark thoughts would come back.

Also even if all is well you still need to think of the implications of having a hysterectomy. It is a big operation and you really will have to take it easy afterwards. You will need help so I hope you will be able to get things in place beforehand. You don't say how old the children are but if they are very young then you will obviously need help with the school run etc. If you do have a hysterectomy you will be amazed at his debilitating initially and you really do have to look heed the medics.

Everything crossed for you.

Love Catherine.x

sandybaskets123 profile image
sandybaskets123 in reply to Marieloiuse

Hi the peeing is my problem and there is also a hard lump. I never felt it. It is big too. I have 8 year old twins. I'm pastenopause so that's a bit scary too. I'm hoping for the best but I'm convinced of the worse. I guess I will know next week. Action is fast.

Marieloiuse profile image
Marieloiuse in reply to sandybaskets123

From what I've picked up over the years I would say the large tumours tend to have grown quickly (mine apparently took about 3 months) and can be borderline or stage 1. I think they can get very big before causing serious problems. Also OC initial symptoms are bloating and similar to IBS. My symptoms weren't like that. I had no bowel problems.

Have you considered phoning any of the help lines? They may be able to give you a better perspective on what's happening.

I really feel for you having to endure the wait. But hopefully you will be celebrating good news very soon.

I hope you can find some enjoyment in the BH weekend.

Catherine x

sandybaskets123 profile image
sandybaskets123 in reply to Marieloiuse

Thank you! I'm praying for a positive outcome. It's hard. My ct125 was 93. Do you remember what yours was?

Marieloiuse profile image
Marieloiuse in reply to sandybaskets123

PS. Just looked it up and see it's outside the normal range but as some have mentioned on here lots of things can elevate it including a fibroid. X

sandybaskets123 profile image
sandybaskets123 in reply to Marieloiuse

Yes. Dr said he's seen it in the 1000s but still concerning. My other labs were great. Thanks for letting me talk to you.

Marieloiuse profile image
Marieloiuse in reply to sandybaskets123

You are more than welcome any time. Will be thinking of you next week. Keep us posted.x

Marieloiuse profile image
Marieloiuse

Ooh I don't even know if it was measured pre-op (and I wouldnt have known to ask being unaware of Ca125 at the time) but I expect it was as it was always measured in subsequent laparasopocies(?) and check ups. Is yours within the normal range?

sandybaskets123 profile image
sandybaskets123

Just heard from my doctor about my ct scan. The tumor is encapsulated and no lymph nodes or other organs are effected. There is some fluid but he said its better because no lymph nodes are involved. Staging or if its benign will be done during surgery.

Lorrainecd888 profile image
Lorrainecd888

I'm sorry your going through this and I hope things improve soon

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