I am 44 years old and had a hysterectomy 2 1/2 years ago, leaving my ovaries. I have been having frequent urination symptons, so I went to a urologist who did an u/s and they foud a large septated cystic structure in the region of the right adnexa presumably representing an enlarged ovary with multiple septated cysts. this measures 11.6 cmin length and 10.9 cm in AP diameter x 8.9 cm in widthe. There is good through transmission. No internal echoes to suggest internal debris are seen. I have to wait several days to do a follow up CT scan and see my ob/gyn. Should I be concerned, givent it baseball size that this will be cancerous?
Raven Lady thanks for sharing your experience and support. This site is a godsend. It is really important to share these REAL experiences with each other as relying on purely clinical conjencture leaves with less than a warm and fuzzy. I will continue to post. I will have the CT scan tomorrow and will certain post the result to share and discuss. I hope I have them by Tuesday morning, August 1st.
Hey ladies! I am new to the forum and also have a large complex cyst. I was feeling pretty depressed before I found this forum...so thanks again for everything. I am still shocked at how many women get these cysts. I was pretty clueless to it all and still feel that way most days. I've learned so much here. I have my Pelvic MRI on Wed and a possible abdomen MRI Fri. My gyn onc never ordered the CA 125 test. Should I be concerned? My surgery to remove my 12cm "alien" is 8/22. ....Lori
Size is no indication of anything, mine was the size of a pumkin on steroids and was benign. My surgeon did tell me that in my case due to its size, had it been malignant, it would have spread to my whole body and id be kicking up daises BUT Nat had one the same size that only had an .8mm malignancy so there is no pattern, not really!
However regardless of size and all other characteristics 99 percent are benign. So many people come on this site trying to second guess with thier US reports with lots of jargon they dont understand. Mine had cancer written on it with black effing markeing pen when I think back! Septations ascites elevated ca 125, wasnt dermoid! Was still benign (mucinous cystadenoma) Its a horrible waiting game but you just cant second guess or read between the lines I am sorry but you cant!
Thank Anna for the comments. I am thrilled you received good news. The waiting is so-o-o-o hard. I used to consider myself a patient person, but no more! I assume 'pumpkin' your must have also been complex structure in nature? Did you also have an elevated CA-125? I am going for that blood test tomorrow along with the CT Scan. I know I will freak out if it is over 30, but it sounds like you are saying that it can be higher than 30 and still be ok given that it is a septated cyst. I am keeping my hopes on the fact that it mentions 'good through transmission and no internal debris', which I interpret to mean solid masses. Since it says cyst and not a tumor on the US, I guess that is better I think... anyway, as with all of you the next three days will be very long and the wait to get this 'thing' out of me seems unbearable. Thanks again for your reply!
Hi again of course I have time there is always time to help others on this forum :)
Mine was removed by laparotomy, recovery time is 6+ weeks im in week 3/4. I am thee most stuborn wench on the planet so I was well ahead of the suggested do's and dont's (I was bridesmaid at my brothers wedding day before yesterday was out all day stood up for hours didnt get home till late) but 'BUT' the 'lifting' advice I follow to the latter. DO NOT LIFT! I had a gyn who frankly in England is so efficent he is as good as any onc.
Yes my ca 125 was elevated and dont be surprised if yours is slightly because of the sheer size. I know how awfull the wait is I honestly do. From my original dx to my path results was over 2 months and would have been 3 had I not rang threatening to burn the hossy down if they didnt give me them! If there is anything else you want to know just ask there are no taboo subjects here
Hi Lori and welcome to the forum! The CA125 is not without its faults and your ONC may not order one for a cyst he/she knows is not going anywhere and will be removed. The CA125 is an excellent tool for the ONCs to see if chemo is kicking in as it should. I a GYN does it pre-op, which is indeed often, it is because they want it as a factor in deciding if surgery is the appropriate treatment route. At 12cm, surgery is the route, make no mistake! So will it be a laporotomy or a laproscopy? I'd guess laparotomy given the size but they seem to be able to remove even the large ones these days via lap! Geyying close Lori, hang in there! MV
Hi D and welcome to the Forum,
I think Anna still holds the title for largest "alien" removed! I had two smaller B9 cysts (they were actually tumors but are always referred to masses or cysts pre-biopsy, what they call them now means nothing D) Also be advised, based on years of statistics and Data, the ONC/GYNs at a global conference this past spring increased a normal CA125 limit to 65. Keep in mind that a CA125 level can elevate due to things other than OvCa. I had a laparotomy as well and cannot add anything there as Anna-Marie covered that pretty well. My surgery was not done by an Onc but I was not as educated then as I am now thanks to this site and these incredible women. I simply knew then that I was gambling. If the frozen biopsy they did while I was in surgery had come back showing OvCa, the Doc would have simply closed me up instead of doing the proper debulking and staging an ONC would do as a matter of course. It would have meant a second suurgery to do so. That is what we call the "Peek & Schriek" technique, Milashka coined that! Describes this less than ideal surgical plan to a tee! I got lucky but don't recommend the gamble I took to anyone. Dian always reminds us we only get one chance to get it right! Truer words were never spoken! It is hard to avoid but if you are feeling unnerved or worried, please drop by as we have all endured the dreadful W&W! We are your Cysters and we will wait with you! MV
It so great to get your smiling messages! THANKS! I agree with you, you really need to aggressively self manage this. Based on everyone's feedback I already know the safest thing to do is have my baseball size complex syst removed by a gyn/onc. I have wrestled up a few good names of ones in the St. Louis area and I am planning to have the report faxed to their group's office, so it will be waiting when I register as a new patiend.
May I ask how old you are? I am 44 and dont have a clue if I am in menopause or not. My primary care ran the test last thursday, so perhaps I will get those results soon too.
Pumpkin size, huh? I dont know how you didnt completedly lose it waiting the several weeks to have it removed. I am just hoping my CT scan tomorrow shows indications of thin septated walls, etc. I know it is septated, but the US said it had good through tramsission. I hope yours had all those characteristics too which leads me to believe there is hope for mine.
Good Luck with your surgery August 22nd!. I hope my sureger will scheduled by then too. Please keep me posted of your progress as I am a few stages behind you. I get my CT scans today (just about to start drining the barium (yek!) I feel like you, I am so shocked about how much of this occurs for women. Too bad we couldnt devise a pill to reduce or eliminate cystic growth, we'd be rich!
I am going to call an gyn/onc today because whatever it is (cancerous or not) at 11cm, it needs to come out! Good Luck!
I just completed my CT a few hours ago and fortunately I have the privilege of already seeing the radiology report. It showed a 10cm serous cystdanoma, so that sounded to me to be less threatening than other possible diagnosis. I was worried about the kidney spots they saw in the US but those also looked to be a calcified cyst and very tinal renal cyst. All other organs looked pretty good to go. I wont see my OB/GYN until Wednesday,but from everything everyone else has been through, I think this is pretty good news, right???? (granted I know I need to see the pathology report)
I don't go for my MRI till Wed. I hope I get some answers as quickly as you did. I had to look up the Serous Cystdanoma but from what I found I didn't read anything scary. My doc didn't have me get a CT scan so we'll see. I will certainly keep you updated. Wednesday will be a busy day for both of us! Hang in there till then. Be Positive! Lori
Thanks to both of you! Laparotomy for me because of the size. I talked to a friend of mine who had this done. She told me about the surgery and recovery as best she could as it was for her. She was probably my age when she did it (34) so it was helpful to talk about it. She said to get up and walk around as soon as you feel up to it. I've heard this helps with the gas...yippee. But it helped me to hear I should be able to walk even if it is slowly before I leave the hospital. This was also good to hear because I already need to arrange child care for my 2 & 1 year old I didn't want to have to need a mommysitter to help me pee! She said you sleep a lot the first week. By the end of the 3rd week she was back to work but advised me she shouldn't have done this. For me not lifting my kids will be hard emotional and physically...but I know it's important to do it right the first time. I can't afford any setbacks. I am keeping a positive outlook on it and honestly what freaks me out the most is the thought of coming out of anesthesia...I always puke. I hate that feeling of knowing I am awake but can't move! Then when I do move I puke. I will tell all this to my anesthesiologist of course and hopefully this time will be different. After today the countdown is on. The cyst is pushing somewhere near my kidney or bladder (I tried to absorb as much as I could from the doc but missed this part exactly) so I feel like I have to pee constantly! Today I shuffled the kids as fast as we could through the food store and back. I just hope it doesn't get worse as the day gets closer. Other than that and being a little tired I feel fine. Me too...no symptoms no pain...I guess that's good. Thanks for letting me chatter on...I'll be back to update after my MRI. Lori
Hi again Lori, (one more glass of barium and less than 2 hours until CT scan). I HATE that feeling of having to constantly pee. That will be the hardest part of waiting for surgery. I am sick of having it press against my bladder. Lori, I guess your doctor isnt too worried about it being cancerous if they scheduled a month out. I guess that is good news... Do you remember what kind of results or diagnosis you received with your CT scan?
I wish you the very best and keep me posted. I cant imagine having two small ones but you are younger than me so that will help you handle it. I have an 11, 13 and 15 year old and I consider myself a young 44, so hang in there and let me know if you can feed me any more info on your cyst results. Sounds like from the size at least, ours are pretty similar....
I had the epidural with the sedative and highly recommend it! No nausia and I was totally out. Wouldn't have general again if the epidural is an option! Ask your Dr. who will probably tell you to ask the Anisthesiologist (SP), I was glad I asked ahead of time! MV
This is my first post. I am a 47 mom of 4 (oldest 12 yo, youngest 4 yrs.) I just found this site after searching for information and maybe answers.
Here are my symptions:
1. Heavy uncomfortable-painful cycles (never had them before)
2. Being tired all the time
3. Not feeling myself, the blood flow in my body feeling a little achey in my arms at times.
4. Finding out I'm slightly anemic
I have high blood pressure since the birth of our 6 yo.(which I'm medicated for) and I take asprin everyday (heart disease runs in my family). I do not smoke. I also take a multi-vitamin everyday.
I've already tried to put my health first but when my cycles changed about a year ago, I thought it was just pre-meno with hormonal changes because this is what happened with my girlfriend. I was mistaken. When I talked to her today she said she did not have the severe fatigue or discomfort I have. So it is a hard pill to swallow not seeing the doctor about it earlier because it was not normal for me.
I requested and just received a faxed copy of my ultrasound of my stomach and vagina after my girlfriend (a doctor) wanted to see my blood test results. I'm glad I did because I also requested my ultrasounds and while it shows fibroid tumors (which I knew about) it also showed a complex cyst in my right ovary measuring 2.6 x 2.0 x 1.7 cm with thin separation and low-level echos.
I had went to see the doctor for my annual and found that my blood was low, so I had to go back for another test (which was still low even after taking Iron supplement). He said my second test showed that the slight anemia was not iron related. I then mentioned to my primary doctor that my cycles have been really heavy and crampy(which is new to me.) I'm also told him that I'm tired all the time which prompted him to order the ultrasound.
With the second anemic blood test result he requested me to send in the stool sample thingy. (I'm not really worried about that since I get regular colonoscopies). The next step is to keep my ob visit the end of the month and see what's next.
The good thing is that when I go to the OB with the ultrasound results in hand and hopefully he can tell me what he thinks we should do or may repeat the test for changes. I do think I will get a second opinion if I'm not comfortable with what he says as far as treatment goes.
What symptions brought you guys to have your self checked out by a doctor?
The symptons that sent me to the doctor were frequent urination. I started with a trip to my primary care who in turn referred me to a urologis who did an external ultrasound and found that even though my bladder was empty, there was a very large (ended up being 14.3 x 10.8 x 5.5) complex cyst. I then went to my obn/gyn and to a onc/gyn after reading all the good advice on this site. I had surgery (oophorectomy and laporotamy) and I was diagnosed with a benign serous cystadenoma. I could not believe I had something as large as a grapefruit inside me and only had symptons of bladder pressure. I am petite in size, and thought I was gaining a bit of weight too fast, but heck, I am almost 45 and just thought it was old age. ALWAYS LISTEN VERY CLOSELY TO YOUR BODY!!! I am feeling very blessed to have had such a talented onc/gyn take it out. She is a Washington University Professor in St. Louis because you cant be too careful. any ovarian neoplasm, no matter what the size has the risk of turning out cancerous, even thought most are benign. Good Good Luck!
I also think your daughter will be just fine, especially if the clinicians you are seeking advice from are erroring on the side of caution by seeing an onc/gyn. Please keep us posted, tell her to try not to worry too much. The odds are most definitely in her favor!
Thank goodness I found this site. I have a 25 year old daughter who has 2 large cysts, one is 9 cm and one is 15 cm. She has krones also and so is used to abdominal pain, so she's just been ignoring and extra discomfort she's been feeling lately. My 70 year old mother is loosing her fight with ovarian cancer so you can just imagine how terrified I was when my daughter came up with some large masses in the abdominal cavity this week. We live and die by my mother's CA125 counts so I'm very relieved to know ahead of time that they aren't an indication of cancer in somebody my daughters age. I was very concerned becaue they scheduled her with and OB/Oncologist, I didn't understand why an oncologist unless the suspected cancer, from reading your posts that seems to be the normal way to procede. I also read it's VERY RARE for someone under 35 to get ovarian cancer. Maybe I can finally eat something for the 1st time in 3 days. I't been wonderful to read real storys and not just read medical terminology. Thanks for all your posts and I'm sure my daughter is going to be just fine.
My daughter (16) was just diagnosed with a huge ovarian cyst. They are saying surgical procedure won't be for 3-4 weeks. We're petrified this may burst prior to surgery, has anyone had any experience with this and should I be pushing the doctors to operate sooner.
I have a 30 cm ovarian mass which is being surgically removed on 9/18 in NYC. Dr. thinks it's a cystadenoma but there are no guarantees. I have 2 small children and am just beside myself with the waiting. They will do a frozen section so when i wake up I hope to hear the good news that it is indeed benign. Good Luck to everyone out there...God Bless
I'm in the same boat as you--the only difference is that mine is smaller at 8cm. I'm having my surgery on Long Island on 9/17. I've got my fingers crossed for you that everything is benign. I've learned from reading this site that most are--let's hope we're both in the majority. Please let us know how your surgery goes.
p.s. I agree---the waiting is the worst! I'm soooo ready to have this over and done with.
Last Nov had rectal bleeding which took me to the ER. Turned out to be pressure from a 16 x 10 cm septated complex Left ovarian cyst. The paperwork they gave me to go the surgical appt they made for me (4 days later, BTW) said...rule out Carcinoma.
Long story short, i had what turned out to be a 20 x 10 cm. ovarian cyst removed. normal CA125.
This thing was so big I had to have ureterolysis on both sides. It was stuck to the left pelvic side wall.
No cancer. Darn thing was BIG though and I didn't know it because I have/had a high pain threshold. I had run in a marathon six months earlier.
PS: They were thinking this was cancer because of how it looked on CT. It was not.
the only reason it started causing me trouble was the urinary and bowel pressure, and then of course, i started looking a little bit pregnant.
i don't want to blow smoke in anyone's face but ......i also wanted to show some hopeful outcomes.
Don't let your surgeon progress your diet too quickly postoperatively. I did not eat solids for three days and it helped.
Take the pain patch if offered at anesthesia, it helps a great deal.
make sure everyone gloves up all the time when touching you; if possible check out rate of hospital acquired infections at the hospital you go to.
Get the best surgeon you can. I saw a doc named Nick Spirtos who is a women's cancer and pelvic reconstructive surgeon. Phenomenal doc in Las Vegas. He was a saint and I love him. of course prior to the knowledge it was benign, i focused on him being a cancer doc but after i was glad someone that good was involved.
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