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bosberg
Posts: 19
Joined: Aug 2013

I'm new to this site, found it while researching for answers to better understand the tests my dr is ordering and what he is telling me.

Basically I am at the point of having a ca125 test done. He says it's just a precaution and that he thinks that the 'complex' cyst I have is probably benign.

He said if my numbers come back good then I can take a wait and see approach but if the cyst bothers me physically he would remove it. So nothing to worry about right?

 

Why I am worried- upon researching I have found various opinions on if the ca125 is accurate in diagnosis. If numbers are low, I could still have cancer depending on other criteria.  If they are high, it does not mean I have cancer.. am I understanding this right? Not sure I understand how this is a useful test...

In the beginning 16 months ago I had unusual bleeding, upon testing found precancer cells. Had ablation and repeated checkups. That part has been fine, at that time I then had my first ultrasound. The first one was a base ultrasound  showed a cyst on the right and left ovary but very small. Most recent ultra sound showed no cyst on the right but increased growth in the 'complex cyst' on the left which is why he is ordering the ca125.  I also have had pain in my right ovary area which has been diagnosed as low back pain, (pain has steadily been getting worse over the course of several yrs) only that one area, so I worry that is somehow related to my ovaries yet the dr tells me no, it's just low back pain. Back pain dr said my discs are fine and that I just need to excercise. I am 42, 5'3 and 130 lbs. I am fit.  I'm just saying that I am not sure either dr is right and since I have ovary issues and am being tested for ca125 I'm worried the pain I've been feeling is from the ovaries afterall. How do I get through to my dr that I feel  this pain could somehow be related and take a bigger look?  

So basically now I am trying to figure out what is generally done if a ca125 numbers come back not in favor of the person. My dr never stated other than whether they are good or not I could opt to have surgergical removal.  Also, I am fatigued easy though I am fit. I feel my lymph nodes throbbing at times. I've discussed this w/ my dr. I don't want to be dramatic but I don't want him to just brush things off easily either. 

Any insight or advice is appreciated. I get the lab done this week, but the dr said it would be 10 days before he'd be able to let me know the results.

 

 

 

Kaleena's picture
Kaleena
Posts: 1196
Joined: Nov 2009

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
Posts: 19
Joined: Aug 2013

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 :)

poopergirl14052's picture
poopergirl14052
Posts: 1161
Joined: Nov 2010

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 

lovesanimals's picture
lovesanimals
Posts: 1264
Joined: Sep 2011

I agree with Kathy and Val to get a second opinion.  You are entitled to answers that satisfy and make sense to you.  Being told that your pain is "probably a back issue" sounds vague and not satisfying.  I too agree that you should request a CT scan. Get a CA 125 too with the understanding that it can be high for non-cancerous reasons and it can be in the normal range even if you do have cancer.  I'm hoping and praying that you do not have cancer.  We do not want you joining our "club"!

Please keeps us posted.

Take care,

Kelly

bosberg
Posts: 19
Joined: Aug 2013

just wanted to say thank & I am taking advice to heart and will seek out a second opinion. I will let ya"ll know how I turn out. very informative discussion board here!sorry for typos I'm on a tablet that doesn't get - along with me, can barely see what I'm typing lol

mamajc
Posts: 22
Joined: Jun 2013

I agree with Val. I would get a second opinion by a gynecological oncologist who has a proven track record and experience with gynecological cancers. I would request a cat scan. I wish I had pushed for a cat scan early in my care. I also wished I had gone to a specialist early on also. I think my cancer would have been easier to treat six months earlier. Good luck!

wholfmeister's picture
wholfmeister
Posts: 260
Joined: Dec 2012

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.

mopar
Posts: 1950
Joined: May 2003

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

 

bosberg
Posts: 19
Joined: Aug 2013

To be honest, he told me the test took a couple days to get back but that he was going on vacation and would not be able to let me know the results once they were in until he was back the end of August, roughly ten days from this week. 

I did not fully realize what this test was for until after the conversation and told him I'd come in for it and wait for his return. Had I realized what it was, I don't think I would have said that and I would have asked that another dr contact me w/ the results. Now I've had it done but will wonder from this week to the first week of Sept. since he is back that last week of Aug and I suspect will not call immediately. ....  I don't mean to be critical but now I wonder why he didn't just wait to tell me to have the test AFTER he was back so he could give me results as soon as they were in rather than say this and leave me wondering. 

So for now I just try not to worry about it & go about my normal routine but I can't seem to not wonder what the results are.  Human nature being what it is.

I have reread my ultrasound and it states at the end that the reader of my ultrasound recommends a ct scan but the dr never mentioned ct scan possiblility. I definately have things to discuss with him when I speak to him. 

 

I'm already planning on requesting a second opinion at a Mayo affliated clinic (current clinic is an Allina based) but feel I should a) see what ca test is b) see if he orders a ct scan 

 

Kaleena's picture
Kaleena
Posts: 1196
Joined: Nov 2009

Bosberg,

Although you said you would wait until your doctor comes back, you can still always call his office and speak to the physician in charge while he/she is gone or the Nurse Practioner and ask for the results.   I have called several times for my results.  Don't feel bad about calling.   You have the right to know.   If they do get annoyed by you asking for your results, then I would definitely seek another practioner.  The worse they could say is you have to wait, but be sure you ask for the physician in charge or the nurse practioner because the regular staff probably won't be able to tell you due to privacy issues.

Further, I am glad your are considering getting a second opinion at Mayo clinic.  

Kathy

P.S.   Every time I have had some type of procedure done, my doctor went on vacation! What is with that? lol

pattysoo's picture
pattysoo
Posts: 173
Joined: Oct 2010

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. 

Pattyn
Posts: 45
Joined: Feb 2012

I will tell you that I was told something similar....."let's do the CA 125 and if it is in the normal range then we will take the cyst and be done."My number was 21.9- well....I decided to go to a gyn/onc and he said lets take out both ovaries and tubes and test them. Come to find out I had cancer and we had to go back in and do a radical hysterectomy. This probably saved my life. Just sayin.......see an expert and check everything .

 

bosberg
Posts: 19
Joined: Aug 2013

I called the nurse practioner as you all told me to, she told me my ca125 came back normal with 28.5.

She said he had also ordered a different test and that one's results are not back yet.  He never told me what other test he may be ordering. I wondered why they needed two vials of blood for one test the day they took my blood. 

Anyway- the number still concerns me simply because I know how I am feeling and others have stated this does not neccessarily mean I am in the clear.  When dr comes back to the office, I will ask for a ct scan, hope he orders it for me, thinking since whomever read my ultrasound suggested that as next step, would be more likely that he will order one for me.

Does a ct scan show cancer better than an mri or are they the same? Medical stuff seems confusing to me.

 

poopergirl14052's picture
poopergirl14052
Posts: 1161
Joined: Nov 2010

Will show cancer...good luck..Val 

abrub's picture
abrub
Posts: 1533
Joined: Mar 2010

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
Posts: 19
Joined: Aug 2013

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?

Alexandra's picture
Alexandra
Posts: 1245
Joined: Jul 2012

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
Posts: 19
Joined: Aug 2013

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.  

janeaden
Posts: 1
Joined: Aug 2013

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!

bosberg
Posts: 19
Joined: Aug 2013

Today my dr called me. He has gone ahead and ordered me an MRI. I asked him if I could have a CT scan instead to better identify any cancererous tissues and he said that MRI would be safer for me due to it not needing radiation vs the ct so they do mri's.

My question is this: if it were you, would you try to get in at the clinic you want to go to for a second opinion at this point, before an mri and ask for a ct scan? Would you get the mri and then go for the second opinion? I am not sure if the mri does not show cancer clearly why pay for it if I can get a ct somewhere else?

Again, at this point I am dealing with a gyn. dr only and not a gyn/onc. I am not sure if I can get in w/ a gyn/onc w/out further proof or maybe they would take me w/ all my symptoms thus far. Have any of you had any problems originally getting w/ a gyn/onc. ?

What questions did you ask before going w/ the one you did or were you just 'assigned' a gyn/onc at what ever hospital/clinic you were at?

Thank you for your opinion

Alexandra's picture
Alexandra
Posts: 1245
Joined: Jul 2012

I recently had a conversation with GYN-ONC (Dr. Les Levine @ Princess Margaret Hospital) about CT vs. MRI. In terms of radiation an abdominal/pelvic CT is the equivalent of 400 X-Ray's and yes, it is more harmful than MRI; but one CT scan is not Chernobyl and not gonna kill you. In his opinion CT is a better diagnostic tool for abdominal issues. They limit it for very young patients or for someone with existing bone marrow defficiencies.

My regular ONC at Odette Cancer Center does not do regular CT scans, she only monitors CA-125. Ovarian patients at Princess Margaret get regular (every 3 months) CT scans for several years as part of their follow-up. There is really no rule on how often to get CT scan. Back in April I asked my GP for a CT scan. 2 weeks ago I had another CT scan ordered by the doctor running a drug trial. It came back positive for several new peritoneal nodes while my CA125 stays normal.

I am in Toronto, Canada and we don't have much choice selecting oncologists. It's one of the side effects of the free healthcare. We pretty much have to stick with the one we got referred to. I believe that in the USA you can shop around within your network as long as your insurance covers it.

mamajc
Posts: 22
Joined: Jun 2013

I don't understand why your doctor is ordering a MRI for you. If you look online for diagnostic tests for ovarian cancer (American Cancer Society), MRIs are rarely used. It doesn't make sense; what specifically is he looking for?

Could it be that your health insurance is refusing to authorize a catscan? Maybe it would be a good idea to review your policy. I would also find out if you need a referral to a specialist like a gynecological oncologist. I would also find out who is in network for your insurance and then google reviews about them. If you live in a city, you may be able to find a list of "Best Doctor's ". 

Joan

 

bosberg
Posts: 19
Joined: Aug 2013

He is trying to determine if what's on my ovary could be cancerous.

I also have fibroids in my uterus and I don't know if that is also a concern or not.  The radiologist that read my ultrasound recommended next step as mri for me to determine a closer look. My dr  tells me he doubts I would be cancerous since my he4 and caa125 came back low and wanted more of a wait and see approach. That scares me.   I asked him what the next step is  and that I was not comfortable w/ waiting to see if the tumors grow more or go away on their own (afterall they've not gone away in the  past 16 months and in fact, are bigger now, why wait anymore?)   and he said he could order a mri if I was concerned. Of course I am concerned!  So I at that point brought up ct scans instead. He said no, he's ordering the mri. He said they are as good as ct scan for this type thing which contradicts what I'm reading here and elsewhere on the internet and told him that. He then said this is the way they do it at this facility and it was non negotiable. 

I am pretty sure insurance is not preventing him from ordering a ct scan. 

I think rather than have the mri, I should start my request at a clinic w/ a gyn/onc. and see if they would order a ct scan for me.

Wish me luck.

I find the health care in my area very frustrating.   I've gone in over the course of 2 yrs w/ symptoms and been told I feel this way for various reasons. It became undeniabley clear it's not from  stress, depression or any of the other various things they told me it is when I started having unusual bleeding and unexplainable pain  which is in the end, what is causing the gyno to take a deeper look.  

bosberg
Posts: 19
Joined: Aug 2013

I can get a second opinion at the other clinic but I can't get in w/ a gyn/onc until I am for sure diagnosed w/ cancer. Until then, I am put w/ a regular gyno.

So I do understand why this is their policy but they said they to would have their gyno do the initial surgery and send for biopsy. If positive at that point go to a gyn/onc.

So, I'm disappointed b/c I had hoped a gyn/onc would be the one to do the surgery/ biopsy and see what it looks like in there. I guess since my numbers were low, they all think my mass is most likely benign.

Regardless, I have set up an apt. w/ the other clinic to get the second opinion on it all.  I am still on the fence on having the mri. It is Wed. now and I have one day to decide if I should get it or wait. If I wait maybe the next dr would order one or order a ct scan. Or maybe tell me non of it's neccessary. Not sure what to think. I just feel if a mri doesn't show beginning stages of cancer then why do it, I would think if anything, I would be in the beginning stages.. confused.. 

 

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