Scary week lots of questions.

[Melliebean]

Hi I am new here. I searched out a forum because I have had one scary week and still have about five days in front of me hard telling how much longer. I was wondering if anyone can help me?

I went to my family doctor Friday because I noticed that I possibly had a small umbilical hernia sticking out of my belly button. When I was there she seemed really concered and sent me directly to the ER to make sure that it wasn't incarcerated. Well my trip to the ER took about nine hours I did have a small hernia, nothing major mainly fatty tissues. In the process of looking it over though they did a cat scan. i wasn't prepared for the doctor to come in and tell me that I had a ten centimeter mass, scattered swollen lymph nodes and and swollen blood vessels in my abdomen.

I looked at him and told him about my history. That I have a long history with ovarian cysts and that is probably just that. And they I have lived with them on and off since I was 16. Im 39 now. He said we were going to do a ultrasound and find out more. He sent the nurse in and she told me the doctor thinks you don't understand what he is saying. I told her yes I understand, but with my history of cysts, and the fact that I have had them before and a mass in the same spot that just dissappeared I wasn't going to work myself up. After that I had the ultrasound, being a larger woman sometimes I have a few tests that come back where they really couldn't see as well as they would like, so that was really no help.

The doctor came in released me and told me to go to my family doctor Tuesday. For some reason the nurse gave me all of my test results for me to take to my DR in case the computers were down and she told me to sit down and read them carefully when I wasn't stressed out.

So when I got home. The CT scan said I had very dialated ovarian veins, Large collateral vessels seen within the abdomen, Prominent scattered lymph nodes. Collateral vessels are seen within that soft tissues of the abdominal wall. No Free air, 8.9 by 6.6 by 9.4 cm left pelvic mass. There is a moderate amount of loculated fluid seen around the mass. All my other organs say things like unremarkable or normal. At the end it says something like Impression:1 Left sided pelvic mass suspisious for malignancy with surrounding loculated fluid, 2Dialated Ovarian Veins, Large collateral vessels.

Ok so I got this home read this. I understood a little more what he was trying to tell me but I don't understand what exactly makes this more suspisious than other cysts i've ever had, or the pelvic mass I had four years ago that just dissappeared. Has anyone see any of those terms before. Its all so scary.

So I got back into my family doctor Tuesday she seemed to be as confused as me. And she pulled the test result from 2008. I did have a mass then same size same place not suspisious and she couldn't really tell me what was different. She ordered two MRI's and I was able to get them down Tue and Wed. One Pelvic one Abdomen.
I heard back from her office today. The MRI's did confirm what the CT said the Mass is there, the blood vessels swollen the nurse said but It didn't mention the lymph nodes. The nurse told me not to stress, lots of conditions can cause this. I have a gyno appt Tuesday, she told me I would probably need a biopsy. And that is where I stand so confused. Trying to remember that this is maybe a scare maybe not. I guess mainly I am trying to see if any of these words jump out at anyone, or the experience. Thanks for taking the time to read. Im up late, scared and just needed somewhere to ask some questions.

[ireneo]

Thinking of you today. Wishing/praying for good news and a successful surgery.

[Melliebean]

(Sorry cut off)
As long as the surgery goes ok and everything goes ok I can deal with that. I hope your appt goes well on the first.

[Melliebean]

Yes we will. I feel silly because now I am more scared about the surgery than I was about the mass. But I know that is just my nerves. I have to work through the final chapter in my fertility issues as well, but as long as the surgery g

[ireneo]

That's pretty soon. At least you don't have to wait 4-6 weeks like so often happens. On the first I have an appt. too with a urologist to get the results of some tests I've had. What a day we'll have together. LOL  When we get good news (fingers crossed) we'll celebrate.

[Melliebean]

Got my surgery date for Oct 1 so moving right along. Nerves kicking in but it will be ok.

[Melliebean]

Thanks Ireneo I will. I remember exactly what happened now back in 2008 2009 with my mass because of something the DR and the nurse said to me today. Back in 2008 in the hospital they said I had a ten cm mass. When I went to the gyno she had ultrasound results from before I left the hospital. She told me I didn't have a mass but I had a 3 cm cyst on my left ovary. She put me on the pill to shrink it and scheduled me another ultra sound in january. That Is the one that didn't turn out. So she scheduled one at the hospital and that's the one that I didn't have done. So the dr today had mentioned that it has grown and I was like hmmm. Because I remembered it being the same size as the one from 2008. Then I was sitting here puzzled by it tonight and I remembered what happened.
So the DR yesterday had the paperwork that said I had a 3cm cyst in 2009.
No wonder he thought it grew.
When actually this one is the same size as what they said I had originally. It took the nurse mentioning a cyst in 2009 and the DR saying it grew to jog my memory.if its the same one I am not sure why I ever had an ultrasound that said it wasn't there. Unless the first one didn't turn out well as well.

[ireneo]

I'm glad he was able to talk to you and not just at you. It sounds like he was very helpful, explained things and is ready to make things better, not just wait and see.

When I had my surgery they told me they would do it laparascopically but if they found anything suspicious, they would open me up to make sure they cleaned up in there. Better to do it then than have to go back. Mine turned out very good and I needed no further treatment. Here's hoping yours goes just as well. Please keep us posted.

[Melliebean]

He said he also thinks it may be the same one from four years ago.

[Melliebean]

Thanks Ireneo it went okay. Now I am waiting back to hear when my surgery will be. I have to have the mass removed and a full hysterectomy. Hopefully knock on wood with the da vinci system. The doctor was a very nice man, he put me at ease. He said same as gyno that he doesn't think it is cancer but he can't say it is not either. My ca-125 results were in today and that is 56. But since I am younger and not had menapause that can mean nothing is what he told me. So now I just wait to find out Thursday or Friday when the surgery is. If I don't hear from them by Monday of next week I am supposed to call, He said what any of them has found worrisome pretty much is probably the fluid in there. I really feel even more at ease today. Knowing that he is going in wanting to use the da Vinci puts my mind at ease as well. As long as I don't have to sit around and worry about being cut on. This way well at least if he has to cut me I won't know till its over. Just depends on my scarring from gallbladder surgery, prior cyct removal and the mass.

[ireneo]

Thinking of you. Hope you can get some sleep tonight. Tomorrow will be an interesting day.

[Melliebean]

Thanks. Two more sleeps (nights) then my appt.

[ireneo]

That's fine. That's what the forum is for. It is a bit confusing but we can't go back and sort it out. Right now keep moving forward with the gyn/onc and get some answers about what's happening in there. Maybe the old cyst did burst, maybe it didn't. In either case, you have something cooking in there and it needs to go.

When I was a teen I had lots of cyst problems and period irregularity. I was also put on BC pills to fix things. It helped a bit but not completely.

Hope you start to get some answers on Tuesday. The doctor may want to do a couple more tests, maybe not. Just want you to know everyone is here to cheer you on, hold your hand and/or listen to you rant if you need to.

[Melliebean]

Thanks for listening to me ramble it means a lot.

[Melliebean]

Also at the time I was placed back on birthcontrol because of period irregularities and to treat any possible cysts. Which is what has always been done to treat them from time to time. I would usually stay on them to regulate until they ran out and then go back off of them. Mainy because I have never had children and I thought maybe in the back of my mind a miricale would happen. Now that I am facing a hysterectomy that miracle is never going to happen. But it is more okay now I am thirty-nine and my husband and I are both set in our ways.

[Melliebean]

Now at the same time with everything that was going on with my husband and the daze I was in I am wondering if I just didn't tell myself it was gone. But I swear one of those tests said it wasn't there and thats what the doctor told me back then. I am very confused over it.

[Melliebean]

Back in 2008 was a very confusing time. I was hospitilaized for 6 days because one night all of a sudden I swelled up. I have always had a bit of swelling but out of now where my leg swelled so big I could hardly walk. They admitted me and during that time running a bunch of tests they found a mass back then same place same size. The cause for my swelling was never determined the Dr. called it lymphedema but we never found the cause. I had to go to lymphedema wrap therapy and I am still on the lasix and potasium and neurotin for neuropathy from where my leg and foot finally burst in a few places to release some of the fluid. Well after I was home I followed up with the gyno. She ran an ultrasound and told me it was no longer there. Then another one was scheduled to make sure it was gone and when I had this one the results didn't really come out because of my body size. I had one more scheduled and my husband the end of January was in a bad firetruck wreck was in the hospital a month the nursing home a month and then the whole year with therapy and my third ultrasound appt went out the window. I think because of my history with cysts I wasn't concered at the time, just like I tried to tell the ER doc. In 2001 during the course of an exploratory lap to check for some fertility issues I had several benign cysts removed. I was just so used to having cysts come and go it just didn't really phase me I don't think. Ive dealt with it since I was sixteen. So back them I swear she told me it was no longer there. But when I was in here office she told me no it never was gone. That made no since to me because I know she told me it wasn't or I would have been more concerned. I mean I thought maybe that was the reason for all of my swelling. So she is saying it could be a Tubo Ovarian Abcess that has been inside of me for four years. But honestly ive never had any ven diseases to cause PID and Ive been married ten years.

[ireneo]

Wait a minute. . . . I was just reading over your first post again. Are you saying you had a large mass (almost 10cm) back in 2008 and the doctor did nothing about it? I find that odd and disturbing. Many if not most doctors will think about surgery on any cyst/mass over 5 cm.

I'm very happy that you're going to see a gyn/onc. I don't want you to have to suffer with this mess much longer. Waiting isn't always the best policy when it comes to our ovaries.

[Melliebean]

I had my appt with the gyno. She is refering me to a Gyno Oncologist and I have my appt Tuesday morning. I was glad it was not a long wait since he is the only one in the area. She said she really doesn't think it is cancer because I had the same thing sort of back in 2008. That is may be the same one and it was maybe never really gone. But it has to come out and it has to be checked to make sure because of all the blood vessels extra vessels and lymph nodes. She said she understand why the ER doc freaked me out, that with just my results and no history any doctor would have immediatly assumed that. But it could be an ovarian abcess, either way I am likely to have a hysterectomy. She said it could be a bad infection because of a tubo ovarian abcess so we just have to see.

[Melliebean]

I did realize though I put non of my symptoms. I thought the bloating in my abdomen was edema just like I get iny legs. I have had bouts of constipation.  I haven't felt fatigue. Only mild pain around and to the left of where the hernia is. Extra long menstral cycle the past three months, but that is another thing I have had all my life and has been cyst related and treated with BC in the past.  As far as risk factors I have had fertility drugs, lupron, I've never had kids. History of breast cancer on my moms side with my grandma, and cervical my grandma dads side. Thanks for listening to me. I really appreciate it. Praying for a positive outcome.

[Melliebean]

And you are right both of you best to be safe. The only thing I am hoping is that the gyno I see Tuesday doesn't try and play the waiting game with BC pills, because with cysts other than the one time I had a bunch removed this is what was done. I've never had a suspicious result before so surely she will be more vigilant than that. If that is the case I will call the one gyno oncologist on my own. So far thankfully I've managed to get a lot done in one week though. Was so glad I didn't have to wait a week for the MRI's.

[Melliebean]

I do know in my area there is only one gyno oncologist. But St Louis is only a little less than two hours away. About nine years ago the gyno I am seeing Tuesday did refer me out to see a fertility specialist, hopefully once she goes over everything it will be the same situation. I don't want to hurt her feelings or anything but I am with you I think I'll request to be referred. Thank you for responding. It is a very stressfully time. I wasn't sure if the feelings I'm feeling was normal. To be so scared of the unknown. I will keep in touch here for sure.

[nyc lady]

The shape of the mass is what they may find as suspicious.  

Take a deep breath.....and keep breathing...of course you are scared.

There is no test for ovarian cancer, they might see things that don't look right on MRIs/CTScans/Sonograms, but, only a biopsy can determine for sure if the mass is malignant or not.

If cancer is suspected, PLEASE, immediately be seen by a GYN/Oncologist.  They have 3 years additional training than OB/Gyns.  Studies have also shown that when surgery is done by a GYN/Oncologist, the life expectancy is longer.   If, and just if, the mass you have is malignant you want the best chance at life.

Let us know how it goes.

[ireneo]

That is a lot to take in. With a history of cysts this might be just another flare up of inflammation and cyst activity. I'm glad your doctor isn't just ignoring it however. She's following through, getting things set up for a probable biopsy. Better to know for sure than to wait and see and guess. The waiting is the hard part.

All of us have been through this waiting game, wondering and worrying. Some have had great news (like me), others not so much. Do you know if an oncologist will be involved. Not that you absolutely have cancer but having an onc deal with this is the best. They can zero in and recognize any potential problems and are prepared to get treatment going if necessary.

Most cysts (over 90%) are benign which is good news. We just have to see what your tests reveal. Please stay in touch with the wonderful women here. They know what you're feeling and have years of experience they can share with you.