Frustrated & Confused!

[CareRN]

My apologies as this post may be a bit long. I started having issues August/September. Bloating with weight gain, but no changes in eating habits or exercise. From there things have progressed quickly. Bloating has never gone away, some days I look 9 mths pregnant. Bowel changes, eat, but full very quickly. Pain is constant...literally never goes away. Predominantly in right side under rib cage. Dr took one look at me & stated I "present like a woman with OC". CA125 was 12. CT scan showed I have a " dermoid cyst" in both ovaries, 1cm lymph node around my sigmoid colon, multiple cysts in right kidney with decreased GFR, twisted bowel. I think that was it. Family Dr & obgyne state there's no way I could have cancer. Send me for colonscopy to be told I have a twisted bowel & two sessile polyps that were removed. My bloating remais the same, appetite the same, increased urinary frequency sometimes not making it to the washroom, pain that never goes away, abdomen feels like it's in my chest, pain radiating down thighs, aching in lower back. I don't think I'm forgetting anything. I've done every test they've asked with no questions answered. Basically I have complicated IBS with twisted bowel. I've had a twisted bowel my whole life so I refuse to buy that. I also have extreme itching intermittently on my inside thighs which I woke up one morning covered in bruises. I'm slightly anaemic. All my blood counts were on the low end of the spectrum. I know my body & something is not right. Dermoid cysts cannot be confirmed without biopsy...no complex cyst can be confirmed without a biopsy. They say there's no way these cysts are causing problems. I've read 100s of stories where women are told they have simple cysts or complex cysts & end up with OC when then surgeon goes in. All 3 Dr's agree I should have my ovaries removed. I hadn't even asked about that. Eager to remove, but they're not causing my problems!?! I have also said CA125 is not a true indicator of having cancer or not having cancer. I want a gyne / oncologist to remove ovaries. I think it should be someone who knows what they're doing in case those cysts are malignant. And I keep stressing time is of the essence, but no one is listening. I'm happy to admit I was wrong if I am, but what if I'm not!?! This has been a frustrating few mths & I greatly admire everyone's knowledge, support & courage on this site. And on top of all that I'm an RN & they still insist it's just IBS. No answer for the 1cm lymph node around my sigmoid colon. The pain at times is truly unbearable. Any advice would be much appreciated. And I'm sorry this post is so long.

[WorriedHusband]

You should definitely have a gyn Onc do the operation. God forbid If they find something malignant they’d know the best thing to do.

HE4 could be another test with higher sensitivity for OC than CA125.

Good luck!

[CareRN in reply to WorriedHusband]

Thank you! I'm here in Canada & I haven't heard of the HE4, but I will ask about it for sure!

[WorriedHusband in reply to CareRN]

Here is alttle more info onthe test.

HE4 is a marker for earlier detection of ovarian carcinoma. It is over-expressed in patients with ovarian cancers. Normal ovarian tissue has minimal production of HE4. When combined with CA125, HE4 raises the level of sensitivity for the detection of ovarian cancer. HE4 is consistently expressed in patients with ovarian cancer and has demonstrated an increased sensitivity and specificity over that of CA125 alone.

High HE4 with High CA125 would suggest ovarian cancer, whereas an elevated CA125 without an associated elevated HE4 would indicate a benign condition. A raised HE4 and normal CA125 would suggest the presence of either ovarian or possibly other type of cancer (e.g. endometrial). It is promising as a marker for early detection by differentiating women with ovarian cancer from women with benign ovarian conditions. Studies show the benefit of CA125 and HE4 and their combined use as a diagnostic test for discrimination between benign and malignant ovarian tumours (Gynecologic Oncology 117, 440 – 445, 2010).s some info on HE4.

[Sunfleury-UK]

Hi CareRN,

Gosh, you've had a tough time of it and it sounds like your Drs responses are not helping much...

Are you in the UK or elsewhere... it can make a bit of a difference to how health care systems work. Regardless of where you are, you can access the Ovacome helpline, either call or message them. They have so much experience and knowledge.

You are of course right that biopsy is how to get definitive results...& this could be done by removing the cysts or the ovaries and then testing. Which is the best course for you will of course partly depend on your age, family situation etc

I had a cystectomy (age 39) done by Gynycologist... biopsy showed borderline OvCa cells so at that point I was referred to gyny-oncologist and it was with him that I had the full op and this is the key time that having a specialist surgeon can improve outcome (I was grade 1c so fortunately caught at early stage).

Having a normal ca125 is good news but as you are no doubt aware there are a small proportion of false negatives (these are often certain sub-types which can be more common in younger women).

There are some helpful resources on both Ovacome and Target Ovarian Cancer's websites about what to ask of your Dr and they might be worth a look. I do believe strongly that you know your body best and so when you feel something isnt right then its important to keep pushing for answers.... It may well be not OvCa and there will be many many more women whose cysts when removed do prove to be as thought and harmless but their stories are rarely recorded.

Do get in touch with the helpline as I am confident they will advise you best, Sx

[CareRN in reply to Sunfleury-UK]

Thank you so much for all of that informative info & will follow your suggestions. I live in Canada & just turned 50. I was fortunate to have 3 kids so not concerned about ovaries being removed. Had a partial hysterectomy 10 years ago.

[Sunfleury-UK in reply to CareRN]

I'm not sure how it works in Canada, but if your 3 Drs have suggested oophrectomy and you don't have concerns about ovaries being removed then it seems difficult to see why this isn't the best way forward and getting the best surgeon possible to do it (which as Worriedhusband suggests) will be a Gyny-Onc.... is this possible?

Best wishes, SX

[CareRN]

That is exactly what I'm pushing for. He wants the obgyne who has only been practising one year to do the surgery. I realize he's well thought of, but I want the surgeon who knows what to do if my complex cysts turn out to be malignant.

[antheamary]

Hi, i agree with above get an experienced surgeon. Go to a centre of excellence. Dont let them experiment on you. I am fed up with registrars haVing a go at proceedures. I know we all have to learn but sometimes is right to say no.