My Ovacome
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Please help a very and stressed momma out. Ovarian cancer?

Hi, I’m new to all this and don’t know where to turn anymore. I had a baby in September via-c-section and had my tubes clipped during the procedure. Well the next month I had pain like around my appendix or ovary area went in to ER and was told nothin wrong all normal just an umbilical hernia with fatty tissue. December had heavy period and pelvic pain, January I’ve been in and out ER and obgyn over 10 times we’ve done 4 tranvaginal ultrasounds and 3 ct scan done of abdomen, 2 ultrasound of abdominal area. All normal ovary is seen and normal size no cyst nothing just hernia. Well got lots of symptoms, decreased appetite, frequent urinating, and uti symptoms. Had colonoscopy and endoscopy and all normal. My doctors are telling me I have postpartum depression and lots of anxiety and the pain I feel is adhesions. Oh and I have back pains but they say I’m morbid obese so that’s that. Over 10 doctors have said this. Do you think I should keep pushing for more answers cause everything I read says people get misdiagnosed and to be my best advocate for myself. Or do I believe these doctors. The only thing that freaked me out more is my last ultrasound said no significant free fluid. That made me scared. My ob says that’s normal. please please give me your opinions. I need to hear from someone outside my circle and what should I do Next? I’m afraid of ovarian cancer which is seems to be all the symptoms.

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Hi there and welcome.

Your doctors would have done a CA125 blood test. 0-35 is the normal range. It can be raised for other reasons rather than Ovarian. It can also be within the normal range and a woman can still have Ovarian. They might have carried out an HE4 test too. I’d check with your doctor to see if they have the CA125 result.

You do have some of the symptoms of Ovarian. These can be due to other conditions as you’ve found out.

Ovarian predominantly affects older women after the menopause although some younger women do get it. So you’d be in the minority if you do have it due to your age.

The next thing is that Ovarian is a relatively uncommon cancer. Most local doctors only see one case every five years on average.

So it’s highly likely you don’t have Ovarian.

The only way to know for definite is to physically have a look by laparoscopy. I doubt your doctors would do that as there’s nothing to indicate you should have one.

Do get your CA125 result. Also, you could show the doctor a list of symptoms you have by using Ovacome’s symptom tracker. Just show it from your phone.

ovacome.org.uk/campaigning-...

If you still feel unheard, I’d suggest you call Ovacome’s helpline on Monday.

Wishing you well.

Xx

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Hi, thank you. My obgyn docotrs 3 different ones don’t want to do the CA125 because it can give false positive due to other issues. They have done numerous other test on my ovaries which all came back normal. I have been actually feeling pretty well lately but I don’t want to jinx myself. Does symptoms usually come and go or is it consistent?

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Hi.. it’s normally consistent but I’m no expert. Xx

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Ask you doctors about the ROKA Test developed in Great Britain, based on 15 year study with more than 100K women. More accurate at detecting OvCa, without all the false Positives and false Negatives of the CA-125.

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I would gently urge caution in giving such advice- the ROCA test still uses CA125, but with an algorithm to follow an individual's trend so this can still be affected by factors identified by the ObGyn Drs involved. ROCA is intended to be a screening tool rather than one-off diagnostic. In the Uk, it is only available privately & the UKT/FOCCS studies arel still ongoing.

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I understand that it is still used as a diagnostic test, but in the first 15 years of trials in the UK, it detected twice as many cases of OvCa at Stage i or II as the CA125 alone, without all the false results.

Unfortunately for women in the US, our Federal Drug Administration turned thumbs down on it, after 46 state medical boards had given approval. At least it is available in Canada and the UK.

Until their is an effective test that is available for all, this is an advancement over the CA125 alone. It proved most effective when administered three time per year to spot changes.

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As you know, here in the UK we have a very different health care system and here it is not available under NICE/NHS. I think that is important to note as otherwise it gives the impression that it is been routinely used here. The huge numbers were due to it being a massive trial. There were many promising results though and hopes were very high.... my understanding is that there may be further results to come as data is still being reviewed. Anna OvacomeSupport may be best able to give the most current update

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ovarian.org.uk/news-and-blo...

This makes clear why it was suspended.

The UKCTOCCS trial used the CA 125 test as part of the surveillance of a very large population of women over a long period of time. ROCA developed not as a diagnostic tool, but as a risk assessment tool.

This is from the UKCTOCS website:

Women were randomly allocated to one of three groups (i) control (C ) - no screening (ii) multimodal screening (MMS) - annual blood test for serum CA125 measurement. The results were interpreted using the ‘Risk of Ovarian Cancer Algorithm’, with transvaginal ultrasound as a second line test in case of abnormality (iii) ultrasound screening (USS) – annual and second line tests were transvaginal scans.

and this from the ROCA one

therocatest.co.uk/roca-test...

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Hi, it is true that sometimes people get misdiagnosed and have to really push and advocate for themselves to get the right diagnostic tests. It sounds like you've done really well to push for quite extensive testing.

Its important to remember that whilst there are women who've had real struggles to get the right diagnosis, there will be many people who also have the common symtoms but dont have ovarian cancer.

You may find keeping a symptom diary helpful (there are a number of them online) and perhaps your GP can help to go through the various reports etc. look at options and answer your questions. As you're probably aware, there are blood tests (ca125etc) and it may be appropriate and useful to arrange to have these repeated at intervals to ensure ongoing appropriate monitoring?

Pain from adhesions, recurrent utis & hernias can all be incredibly debilitating and anxiety/depression especially so. Getting some support and treatment for these is important & could be also seen as part of being a good self-advocate....

I'm afraid, noone here can tell you definitively that you don't/do have Ovca... we can though offer support & friendship and wish you hope and strength, Sx

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Thank you I appreciate that. I definitely need the friendship and just to let it out at times. Yes I’ve been sent to therapy and actually been feeling better and think it helped a lot. I thought I had lost of appetite well after my depression has been under control I’ve seem to get that back. My docotrs all said they will let me have transvaginal ultrasound every 2 months to stay on top of it. Does that seem good enough?

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It seems like you have pretty thorough medical support. Keep working with them & hopefully things will continue to improve for you, best wishes Sx

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Hello,

You've been given some really good advice here. The CA-125 results can help to put your mind at rest. As I read your post, you've had several doctors say the same thing while you're in ER, but can you get a second opinion under different circumstances (ie not in ER).

Do call Ovacome's Help Line. Take good care of yourself (and maybe you need some help with caring for the baby? Have you had any time to yourself?)

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I’ve had 6 doctors outside the ER. 3 obgyn and 3 primary care providers for numerous opinions. My husband stays home with my as we have FMLA to care for me so he takes care of the kids while I take care myself. I’ve gotten so much better lately but there’s always that voice in the back that keeps me worried about OC. I don’t know why I make myself like this.

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You imply that you have a range of other health issues which may be affecting how you feel. If doctors are telling you you're morbidly obese, that's pretty serious. Surgical recovery takes a long time, and even years after, you can get strange twinges in the area. You mention other issues which might interfere with the accuracy of the CA125 test (from my understanding, the discussion here about false negatives and false positives is rather over-stated, and probably irrelevant as they clearly have looked very closely at you in the same exclusion based diagnostic pathway we all underwent. And they are planning on continuing to keep a close eye on you).

I wonder whether the focus on OC is a way of avoiding thinking about the other issues?

I know it sounds odd to wonder about that, but sometimes it's easier for us to worry about things we can't do much about, rather than those we can perhaps? But it can eat us up.

I'm very pleased to hear you feel you've got better recently. My very best wishes for this continuing.

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My stepdaughter had a baby in September as well. She suffered a bit of post partum depression. I just thinking you may be a candidate for that as well. If you have had all the tests being strong and an advocate for yourself, then rest assured you are doing the right thing. If there is follow up in two months then just go with that. I would advise you to talk to a counselor to help you to get a handle on all your anxieties. I am not saying that you don’t have medical issues but trying a holistic approach which is healing mind and body would be a good way of coping with all the stuff that is going on in your life. Good luck.

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I'm afraid I'm at a bit of a loss on what to say as just about everything seems to have been checked. I would ask for a CA125 blood test that seems to be the norm. I do think from what you say that the pain is probably due to something else and you're so young but it never hurts to check. I personally didn't have any symptoms whatsoever and my cancer was discovered purely by mistake. I was very lucky.

I wish you luck and let us know what you decide and how you get on.

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Hi guys, so after severe pelvic pain my obgyn did another TVUS and now he found a 2.5x1.8x1.9 complex cyst. Now I’m petrified. I’m referred out to an oncologist because I’m tired of hearing him say let’s wait and see in 3 months. So I demanded a referral and I meet with obgyn-oncologist on next Tuesday. I read up on him and his specialty is in uterine and I Arian . I think he said he even wrote a book on it. Praying for him to help me get to the bottom of this. Did anyone have a complex cyst before?

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