Ovarian Cancer Support Group

My doctor is Suzanne Bergen at Central DuPage Hospital in Winfield in the western suburbs of Chicago. I realize this might be too far for you but she is fantastic. I was diagnosed in February, she did the surgery and started chemo the week after (stage 3 ovarian). Hopefully, you do not have cancer. I am feeling good, just tired the week after chemo. Two more treatments and then five weeks of radiation. She is a gyn/oncologist.

It is so wonderful taht we are getting increasingly more women coming on here with your concerns.. It means that the message is getting through to women if not to all doctors.. Pleasedo not desist in getting the proper referals and the answers you need.. The chances are hugely in favour of this being other than OC.. as it is a very rare disease and has similar symptoms to so many other and less difficult conditions.

I live in the Uk so can not advise you on doctors in Chicago.. A CA125 blood test is a good way forward.. these are not conclusive or reliable tests in every situation.. but if it comes back high it could encourage your doctor to give you an untra sound scan or better still a CT scan.. Please do not be put off and get the answers you require..

I will be rooting for you that this is one of the many things other than cancer and can be dealt with simply for you.. Either way we are all here for you with any advice or support you want.. please keep us posted.. All the best wishes for you.. Inka xxx

Peg123 & Halli I appreciate your replies. I have not used the internet to diagnose, though it does heighten my concerns. I merely want to know what I have, so I can get help. Without a Dr. diagnosis I have no hope of getting help. I'm so very uncomfortable and my recent concern is my period hasn't come this month, yet I still have discolored vaginal discharge. I've also noticed yet another abnormal bump on my abdomen. My leg has been painful for a week now and I had 4 days of being nauseated, but now just a constant headache. Whatever is going on has now stopped my period and I continue to unbutton my pants even at work.

I thought my previous conization because of abnormal pap would've propelled the Dr. to get me into surgery for the large polyp on my cervix, yet still no return phone call from the Dr. from my 3 phone messages since last Friday. I'm going to a new Gyn Dr. on Tues.

With the recent very bad Gyn Drs. have prompted me to launch a formal complaint with the overseeing Hospital body for this clinic along with the Department of Professional Regulation. The one thing I've learned is Drs. are far too blasé about actual lumps they can feel in ones abdomen. Though my lumps can be felt easily when I'm sitting or standing, they are deeper when I lay down.

Peg123, My insurance won't pay for me to see a gyn/oncologist unless I am diagnosed. This is so insane as I need someone who really knows about benign lumps and things that spread in the abdomen and my leg. Internist wants to find the problem in my blood work-up, though nothing was eyebrow raising from the Gyn blood work-up and Endrochronologist (borderline Thyroid). What I need is someone to biopsy the lump on my leg.

Without a diagnosis is it better for me to see a gyn/oncologist? My mind is racing because of the CT scan that was done and apparently only a hemi-diaphram problem was found. But nothing was mentioned about my left ovarian cyst or the cervical fibroid. I don't know if a cervical polyp should show on CT as well. I've never missed a period and this time my period hasn't come, only continued vaginal discharge that is varies between tan/brown to very dark. Ugh.. while the Drs. dismiss my symptoms and obvious lumps that can be felt, I'm still so very uncomfortable. I tried swimming yesterday and after only 3 lengths in the pool I had to rest and the right side of my neck became more painful. The lumps and pain are truly scaring me.

It doesn't seem to me that you have had your CT scan results properly explained to you. Missing a period is a worrryng symptom and one that you could go back to your doctor about. Fibroids bring simillar symptoms to OC and are far more common. I get the idea that your doctor has ruled out cancer.. great.. but you still need to know what is going on and what can be done about your discomfort.. xxx

Here's a to a resource to find a gynecological oncologist: http://www.wcn.org/ - there's plenty of other information here, too, about women's health issues. I agree with Inka, someone needs to explain what is going on and allow you the opportunity to request a referral. Best wishes, Janet

I've set up another appt. for a gyn tomorrow. Cancer has not been ruled out from any Dr. as no tests have been done to do so. CT report stated normal for organs and only hemi-diaphram problem that could be hernia. I don't know if my scan was accurate, but I will ask the new gyn Dr. tomorrow to view the CD given to me. I just can't wait any longer for the bad Dr. who failed to return my phone calls to schedule the surgical procedure to remove my large cervical polyp and do a D&C.

Laying down was the only way I could get comfortable without feeling the pulling and pressure, but now there is only one position that I can get comfortable in to get to sleep.

With the Dr. tomorrow I will be asking for the CA125 blood test and to see if he can also request another test such as an X-ray, IVP, PET or MRI. I will also ask to have the procedure scheduled ASAP and if he could biopsy my left ovarian cyst and/or the lump on my leg. The only two things so far that have been ruled out with my efforts are: Thyroid disease (just borderline), and Skin trouble.

I'm hoping this new Dr. will have the desire and give an effort of finding out what's going on with me.

Hoping you get to the bottom of what is going on and feel better soon. It is all those unanswered questions that you have and you know you don't feel good. Keep pushing until you know and you are comfortable with your doctor. Keep us posted......
Hugs
Beth

Very best of luck with this and really hoping you get the answers quickly.. Can't help thinking that the CT scan you had done should hold enough information to decide whether a biopsy or further tests are required.. High CA125 + CT scan + palpable masses and symptoms are usually enough to indicate a need for further investigation. xxx

I will be asking the new gyn Dr. today to get me another scan (ie. PET or MRI) and the CA125 blood test as my abdomen is a mess with new bumps, some are a visible ridge. A new one that I found is very tender to touch. Last night was very painful, though my period is 2 weeks late it felt like severe pressure, bloating, constipation, and after taking 4 IBprofin I was able to go to sleep.

My metabolism has always been stuck on high and I've never able to put weight on without great effort of counting my calories for months to gain a couple pounds. Letting the Drs. know that I put weight on seems to counter to their thoughts and beliefs of something serious. I would be satisfied with weight gain, but not like this as I cannot exercise to tone. I'm 69 1/2" inches tall and at the first of the year I weighed in at 148, and my weight hasn't gone down since the first Dr. appt. at the end of March - weight at 162. This is quiet strange as my caloric intake is only around 1000-1300 each day, and missing meals. I get full very quick and I'm eating less frequently. My abdomen is quite distended and still so very uncomfortable.

Last night I also talked with a friends daughter, who is a X-Ray technician, so I'll have her take a look at the CT scan CD that I was given. I also re-read my past Conization results from several years ago and I don't understand why aggressive testing, like the colposcopy that was done on me for the first couple years, wasn't continued as I had told each gyn Dr. of my past condition (severe squamous dysplasia with lymphocytic folicular) and I always mention doing a colposcopy.

IF this new gyn Dr. doesn't follow up with an immediate new scan/test, then I'll contact my neighbors daughter again for her advice on me making a trip to the emergency room and what to say/do to get the attention needed for this. I haven't given up on finding out what's going on, but without a diagnosis I cannot get treated. With pencil to paper, I'm designing my next website with the focus on health.