New member and searching for answers

Go with your instincts.  If you are not getting the answers or the appropriate tests, it won't hurt to get a second opinion.   

I was 44 years old when I started to have problems.  Back pain (mainly left back ovary which became sciatic pain and down my left leg).    Went to my regular PC who didn't see or feel anything was wrong but ordered that I have a colonoscopy.  I finally had it done a couple of months later - it was good.   Pain worsening to the point that I am starting off my day with pain pills.   Decided to see my gyne.   He didn't seem to be too concerned and ordered an vaginal ultrasound.   It didn't show much except a tilted uterus and my left ovary was deep set.   Pain bad now.   Gyne decides to do a laparoscopy.   Didn't see much except my severe endometriosis which he said I had for years but that there was so much scarring that he couldn't even move my uterus.  Suggested total hysterectomy.   I ask him if I needed any scans or anything.  He said no that it would just show the scarring.    But before he would do surgery I would have to take Lupron for six months to help "soften" the adhesions to make the surgery a little be easier for him.    By this time, I am now 45 years old.  Had my hysterectomy.  Went back for my check-up and was told that they found cancer in my uterus and my left ovary.   Had to undergo another surgery a month later for staging (which at that time didn't find anything further) - staged at Grade 2, Stage 3a endometrial adenocarcinoma. but treated as ovarian because they couldn't find the oringination of the cancer and had to rule out MMMT.

I feel that if a scan was done prior to my hysterectomy, it could have saved me an additional surgery.   I did not have a CA125 done, however, after my second surgery it was only a 21 so I don't know if that is an indicator for me.

Further with them finding precancerous cells, why not take a look with a scan?    You might have to fight the insurance companies though for it.   Therefore, you may want to find a gyne/oncologist for a second opinion (which you probably can do since you did have the precancerous cells, etc.)

But in any event, I just hope it is just nothing but nerves and whatnot.    

My best to you,

Kathy

P.S.   I am now 53 years old and go every six months for check-ups.

bosberg said:

You left back pain sounds

You left back pain sounds similar to mine but mine is on the right. I've had sciatica to but only on the right side, which is why I went to a dr dealing w/ back pain specifically.

I've always been told I'm young and fit and have nothing to worry about yet the symptoms just seem to get worse. It was not until I had several months of unusual vaginal bleeding that I went in finally b/c I was so tired of the run around by the drs.  

Last week was my check up, when my dr did the pelvic exam and pressed on the right ovary it hurt awful, I am so surprised that they did not find a cyst on the right side and instead on the left. The right side is where my pain is stemming from. The left doesn't hurt. I did ask him if there was anyway the left cyst could be causing this pain on the right and he said there can be deferred pain or something like that but that is probably not what I am feeling. He said it's probably just a back issue.

 

The ultrasound results state something about a inverted uterus as well and something about possible edometriosis. He didn't comment much on those so I have not thought much of it.

I've never been recommended to get a colonospy.(sp?)
I think I will see what comes of the ca125 and also  go for a second opinion. 

Thanks for the advice

Find a Gyn/ Oncologist and get another opinion. You will be better off. She will probably order a Ct scan first..then Ca-125. Blood test just gives them baseline and sometimes not a good indicator . Best of luck...I pray you do not have cancer. Stay strong..Val 

I was sure I responded to you, but I don't see it.  In short, I wanted to say also to get a second opinion.  But also, don't get too worried - there are so many things that can cause these symptoms.  I had endometriosis and believe me, it can be debilitating.  So, hang in there and let us know what you find out.  Till then. . .

(((HUGS))) & Prayers

Monika

You have understood the prompting by several ladies who replied to you to see a gynecological oncologist for that second opinion, right? Please insist. Then you'll be less likely to get a run-around and a quicker answer to your problem. It is probably nothing to worry about, but you could find a way to cure the problem and prevent future risk. Your physician's nurse or PA should be able to relay test results to you if you don't feel like waiting. But waiting is ok too. CA125 can be elevated for other reasons besides cancer and it would be a shame to get a scary answer without the doctor there to explain. 

Find the best Gyno-oncologist in your area.

There is no reason it should take 10 days for lab results unless you live in the extreme boonies and the sample is going by snail mail to a lab in Outer Mongolia.  My doctor has my lab results the next day, including CT scan reports.

I'm hoping only the best for you.  You deserve answers.

I had normal CA125 and Ca19-9 when I had a questionable ovarian cyst.  My surgeon wanted to do a hysterectomy, but assured me that he felt quite certain that nothing more than fibroids would be found.  However, I had a tumor encompassing my ovary, a tumor that had originated in the appendix, and therefore did not affect the "Female" tumor markers.  Thus I awoke to learn I had metastatic appendix cancer.

Many women who have appendix cancer are initially misdiagnosed with ovarian cancer, as that is where the tumor is commonly found.  If treated for ovarian cancer, they receive the wrong class of chemo, and the wrong treatment all together.   I was fortunate in that the origin of my tumor was correctly identified, and I was properly treated.

Note, however, that appendix cancer is very uncommon.  However, if there is a question going on, there is no harm in an additional blood test.  A CT scan should also show if there is anything untoward going on.

bosberg said:

he4

I received an email today from my clinic telling me my HE4 test came back @ 57 and is normal.  Have any of you had a number in the normal range for this vtest and still found you had a cancerous mass?

I never had HE4 test done. My ONC monitors CA125 only. It's good news that both your markers came back normal.

CT scan is a better screening tool for abdominal cancers than MRI.

bosberg said:

Thank you. I have learned so

Thank you. I have learned so much with this forum and through this experience of being tested. I am still awaiting my dr to return from vacation and hoping for a ct to rule it out for once and all. The dr filling in called me the other day, after he found out the nurse gave me my results.   I was told either he could do a larposcopy or Dr OnVacation can open me up surgically and remove the mass. I guess the way of doing it is up to me?  One is more invasive than the other. IF I choose to remove it. It sounds like they would have to take my whole ovary out due to it's location.  At this point, I am wondering how I would feel ok not removing it and always wondering if it's developed further or if something was missed.  But I will have to ask about the two procedures, it seems to me that if done laposcopy how can they remove an entire ovary? 

I hope to find out more from my Dr when he returns.

Before I do any of that, I plan to seek the second opinion at clinic B. 

Regardless of how I turn out, I have new awareness for OVC and would like to do something to help be supportive to OVC survivors, basically I feel all I can do is donate money towards the research or a place that offers treatments.  

I had an ultrasound after having back pain. I thought it was my kidneys. My kidneys were fine but they found a mass on my right ovary. My CA 125 was only 22. My Ob/Gyn was still worried it may be malignant and sent me for a CT scan and to a OB/GYN Oncologist. Because of my CA level my oncologist was very sure that it was a benign mass. He gave me the option of waiting 3 months and doing another ultrsound but said since I was having back pain he recommended maybe just going ahead with the surgery. He did robotic surgery 3 weeks later. It was aggressive cancer (grade 3) but stage 1C. I am now going through Chemo. My oncoloigst stated if I had wait we would have been looking at a completely different scenerio in 6 months. I tell my story not to worry you but this is your life and your body. If you feel something is not right, make them check it out. Its better to find nothing then to wait until its too late. I wish you the best!