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Confused

Lissafer
Posts: 1
Joined: Jul 2004

I haven't been diagnosed yet but I do have some questions and was wondering if you guys could help me. I am 26 years old and recently went in to the ER with pain in my sides...they did an ultrasound and found 2 cysts on my right ovary and alot on my left ovary with a nodule there as well. I had follow up care with my PCP and she said (and I quote) "Well, if you were 50, I would be opening you up and doing tests to see if you have cancer, but you are not 50 and cant get ovarian cancer" I know I probably need a second opinion but what questions should I ask and what should I do, I have been studying ovarian cancer and have all of the "symptoms" such as fullness after eating, pain, upset stomache, diharrea, etc what questions should I ask my gyn?

Thanks for the help in advance

mopar
Posts: 1950
Joined: May 2003

I'm so sorry your doctor has left you hanging like that. There is no 'set age' to get cancer. I don't want to scare you, but I agree that a second opinion is in order. I had no symptoms whatsoever and just needed to have a uterine fibroid removed, when mine was discovered. I thank God for that. Did you doctor do a CA125 blood test? Although it is just a cancer antigen screening, it is a useful tool along with symptomology and other factors. Any history in your family? Even your Dad or his side is a factor. My mom was recently diagnosed with colon cancer that has spread. She tested positive for the gene that causes colon cancer, and now I found out that the gene is also responsible for ovarian cancer. At first, I had no family history, but now I do. You will also find many young people on this site. I have concerns about my three daughters. The oldest suffers from endometriosis as I did. This can also be a precurser to cancer, so we watch her closely. She is only 23 years old.

Anyway, I strongly suggest another opinion. Take all your test results with you. Ask for a CA125. Gather up your family history, no matter how insignificant it seems. A CT scan or sometimes a PET scan could be more conclusive. Otherwise, going in to get a biopsy might be recommended. Please don't hesitate. And keep us informed.

Your in my prayers! God bless.

Monika

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

I would imagine you are confused and a little bit frightened. You do really need to stay proactive and ask for a CA125 test and probably a CTscan. Usually looking at the cyst they can tell by it's makeup if it's just a fluid filled cyst or tumorous cyst. My sister in law deals with cysts on her ovaries and feels the fullness and pressure until they burst and I guess when they burst it is painfull for her but then gives her relieve. So your Dr may be correct as the radiologist is the one giving her your ultrasound tests results but a second opinion or pressing your Dr is always a good idea. Until you feel comfortable and reassured that it is not cancer.

Let us know what the outcome. My prayers are with you.

Bonnie Rose

groundeffect
Posts: 651
Joined: Mar 2003

My doctors told me I was "young" to have OVCA when I was 48, so that should tell you about the age prejudice with ovarian cancer. A woman who comes to the support group I belong to was diagnosed in her 20's, and it was a fairly advanced stage. I have met a number of women who were diagnosed when they were under fifty. Gilda Radner was 40 (after not feeling well for a couple of years), and Patsy Ramsey (Jon Benet's mother) was 37 when she was diagnosed. They were both in advanced stages. The key to a good outcome is getting it in an early stage!

I suppose what you should do is, if you're not comfortable with your doctor referring you to someone else (or don't want to ask them), call your insurance carrier and see what they say about getting a second opinion. I had all of the tests that should have disclosed something such as cysts, but the only thing that showed was fibroid tumors, which I had before. My initial diagnosis was for uterine cancer - my ob/gyn did a mini-biopsy of my uterus. I didn't have a CA 125 test until after the hysterectomy uncovered ovarian cancer.

Don't panic, but don't take the word of one doctor, especially if they're saying you're "too young" for ovarian cancer. Ask your insurer about what you should do about a second opinion. There's an "Ask a Nurse" phone line in the city that I live that would advise you on such a matter, too.

Best of luck, and I hope your investigation works out in a positive way for you.

gorget
Posts: 23
Joined: Feb 2004

Hi Lissafer,
There is no age for cancer of any type. My first battle with OVCA was at age 23 - you are just a few years older than that. You definitely need a second opinion, preferably by an oncologist gynocoligist. A CT scan is also in order. You need to be proactive in your care, as the others have suggested, but do not rest on the opinion of this one doctor. You need to see an onco/gyno for sure.
This time around I am 42 with a second type of OVCA, which was discovered with a CA125 (after ~3-4 weeks of discomfort, fullness after eating, etc.) I am stage 3B in remission now. This needs to be caught early so that you don't have to go through the harsh, lengthy chemo treatments I went through (11 of them! I only had 3 in 1985!).
So, get your doc to refer you to an onco/gyn, or pester your insurance company to let you see one - it is very important that you get an opinion from the right doc. My sister recently had surgery for similar issues you had (cysts and nodules) and thankfully it all came back as non-cancerous, but she had to see an onco and have surgery to get the cysts biopsied to be sure.
We are all thinking of you as we've all been in your shoes. Push for the proper care and opinions and make it happen.
Be well.

juneaugirl
Posts: 12
Joined: Aug 2004

You need to find a doctor who is better informed will not blow you off. There is no "age limit" for cancer. I am under 50 and had ovarian cancer. Fortunately both my family doctor and my GYN took my ovarian cysts very seriously and my cancer was found in stage 1. Keep in mind that everyone does not not present with an elevated CA125. Mine wasn't. You may want to ask your GYN to refer you to a GYN oncologist so that he can check you out. I know you are only 26 but if the subject of removing your ovaries comes up, please consider it. I know you probably want children but being alive and able to adopt a child is better than having a child and not living to raise him. My prayers are with you.

GailEllen's picture
GailEllen
Posts: 3
Joined: Jul 2004

How smart you are to be seeking some input. If your "gut" is telling you to keep seeking, listen to it! MRI is actually more definitive for abdominal abnormalities than CT. I strongly suggest you be examined by an OBGYN who specializes in ovarian cancer--they have the best hands. Bring and keep a copy of your medical records. Ca125 can be false positive so the most definitive test for you will be a good specialist's examination, History & Physical and MRI. Best wishes, you are in my prayers!

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