Terrified that I might have cancer!

[xsara726]

So I'm 23 years old, about a month ago, shortly after my period ended I was still having cramps and my lower abdomen was distended so I went to my doctor. I had an transvaginal ultrasound done, then about a week later she informed me I had a 4 cm cyst on my left ovary and an 11 cm cyst on my right. She said they appeared to be hemorrhagic/blood filled cysts and they didn't look too suspicious, but suggested I see an obgyn. 3 weeks later I saw an obgyn and after looking at the ultrasounds she said the left cyst appeared to be hemorrhagic but the right one appeared to be a mass so she had me do a CA 125 blood test. That was yesterday, I haven't gotten the results for that yet. She also put me on some birth control, I'm scheduled for another ultrasound on Friday. I don't currently have health insurance so I've been trying to figure out how to get the surgery to remove the cyst/mass.

I'm really worried that the mass is a malignant tumor, I've been obsessing over it and it's driving me insane not knowing if I have cancer or not. I've been feeling okay lately, decent appetite and besides being a little tired and having to pee more frequently I feel fairly normal. I do get occasional dull pains in the area and my stomach is still distended in that area.

I'm not even sure what I'm asking, I guess I just wanted to vent my extreme worry and obsession on this. How common is it for 11cm ovarian masses to be cancerous? I'm so scared :(

[old_before_my_time]

I understand your concerns with having a vertical incision. My friend whose cyst looked suspicious and had a CA125 over 1000 had a bikini incision. My incision was vertical and I realize that probably was not necessary. Frankly, I wish I had been much more assertive and realized the high rate of over-treatment in gynecology. I would have done things very differently and would likely have had a laparoscopy or bikini laparotomy IF I had sought out a surgeon who uses only or mostly organ-sparing procedures. Even more importantly, I would likely still have all my organs. I also wish I had known I was at a teaching hospital before the day of surgery. That would have been a red flag to me. I would hope that any surgeon would treat you better than I was treated especially since you are so young. But please make sure you ask the "right" questions and protect your organs via your surgical consent form. Those forms are usually open ended giving the surgeon sole discretion on what organs are removed.

[HVAC]

The deal with surgery is if they think the tumor may be cancer and may leak they do the long incision or if they do something called debulking where they take everything including the omentum the lining of the organs. The scar is not that bad. My problem with all they took out is my belly looks like a sack of potatoes. It is lumpy but I had the full surgery.

The old theory is that Ovarian Cancer spreads through ascites of fluid in the belly a new theory is the cancer spreads through the blood.

Alex

[xsara726]

HVAC - Thanks for the reply, I'm so sorry for your situation :( It's inspiring that you are able to stay positive through this. The obgyn didn't tell me what my levels actually were, just that they were elevated. I wish I remembered to ask her, when I go to the oncologist tomorrow hopefully he will know.

old_before_my_time - Thank you for the reply, it was encouraging :) I'm really hoping to keep at least one ovary and my uterus seeing as how I still want to have children and will be devastated if I can't.

I did some research on borderline ovarian tumors, I feel a little better knowing the prognosis is better than full malignant tumors but I'm still quite worried because no one knows for sure what it is. I'm hoping to get more information from the oncologist, but I'm sure it can't be diagnosed without surgery so hopefully they can schedule that soon.

I do have another question regarding the surgery; While I'm far more concerned about just getting the mass out and being healthy again (hopefully), I am curious about the chances of getting laparoscopy or bikini line incision for this. I know this is something I will need to ask the doctor to know for sure, but has anyone been successful with getting a laparoscopy or horizontal bikini line incision for borderline tumors or even malignant tumors? Or did the surgeons have to resort to laparotomy? I dread having to have a vertical scar from my bellybutton to bikini line, if that's what they have to do then I'll have to deal with it but I'm hoping to avoid that at all costs.

Thank you so much for the helpful advice!

[old_before_my_time]

I am sorry you are going through this especially at such a young age. As Alex said, if you have no family history, then this is unlikely to be cancer. Due to the size of the one cyst, it is unlikely to shrink and finally resolve on its own. It is best to keep both ovaries (and your uterus of course) so making sure you have a surgeon who does a lot of cystectomies would give you the best possible outcome both for fertility as well as the health-giving functions of the ovaries since they produce hormones into a woman's 80's if they have not been crippled by removal of part of your "reproductive" system.

You cannot count on the CA125 test for diagnosing ovarian cancer. A friend of mine had a large ovarian cyst with a CA125 greater than 1000 and her cyst was benign.

Do some research and make a list of questions for the doctor. Take someone with you to the appointment. Keep us posted and try to stay calm. Although fear is natural, it can make it hard to think clearly and make good decisions.

[HVAC]

Oh won't tell you not to be nervous it is impossible. I have no clue if you have Cancer or not.  I have Ovarian Cancer and I deal with it. I go horse back riding, I train service dogs, I go on vacations, and garden. I got a puppy recently.

When you go to the oncologist take someone who can go in with you. Also if you do not feel good about the Oncologist or you want another opinion do not be afraid to get a second opinion. I did not do either and I wish I had. Each hospital does thing differently and you might like one more than another. I am a strong person I have Multiple Sclerosis and went for that diagnosis by myself but the Oncologist was worse I wish my husband had gone with me. A second opinion never hurts even if you like the doctor.

What was your CA125?  It should be 35 or under but it can be higher from things other than Cancer. With Cancer it can go into the 1000's.

Alex

[xsara726]

Thanks for the reply! got a call from the obgyn this morning and she said I had elavated CA 125 levels so she referred me to gynecological oncologist. She said it's possible it could be a borderline tumor, I believe. Either way I'm completely sick to my stomach and cried after the phone call. I know it's not certain I have cancer right now, I need to wait until an official diagnosis before I really start to worry but just thinking about how bad it'll be if I actually do have cancer. I guess I'll see what happens

[HVAC]

I know you are scare waiting for tests scares anyone. Unless you have ovarian Cancer in your family you have a less than 2% chance it is Ovarian Cancer. Also my doctors have told me it is rare to have Ovarian Cancer on both ovaries. Because Ovarian Cancer is a missed diagnosis your doctors are good to do all the tests. Just because doctors do tests it does not mean it is the worst out come. I have had them think I had Cancer many times when I did not. They looked am jaw and found out in the end it was not Cancer. I had a Breast lump last year where they did 12 Mammogram views and a ultrasound and found no Cancer. They also thought I had a brain condition that was fatal they did a MRI and found they were wrong. Now I do not worry until they tell me to worry.

I am sorry about your insurance situation.

Alex