Needing all the help I can get - complex ovarian cyst
Hello! Thank you in advance for any help you can give me. I'm terrified right now. I had a borderline tumor removed from my left ovary during c-section 18 months ago. Since then, the left ovary has been watched, with no reoccurence. However, soon after c-section, the right ovary developed a complex mass. Had MRI, they said "hemmoraghic cyst" and it always has been VERY painful in front of my pelvis, so since you think of OC as being the "silent killer", I found solace in that pain. I have been going to a top notch cancer clinic in Seattle, Washington, and monitored via ultra sound every 3-5 months for the past 18 months.
Here is the terrifying part: I was seen in January, no change to "cyst" in right ovary. I go back in in June, and it has grown 1cm, and my fallopian tube is enlarged. For the past two months I have had back pain on the right side, and gas, bloating, I feel like I am pregnant, breast tenderness. (Not pregnant and currently mid cycle).
I am TERRIFIED! I read about Ovarian Cancer going from stage I to stage IV in a matter of months with some people. My gyn/onc will not see me until June 21st. I have begged to get in earlier, and they said no.
My CA-125 was only taken once in January of this year and it was 20. Then it was taken again in June and it was still 20. That seems like the high end of normal, doesn't it?
Was I right to just "watch it" when I had pain and there was no change in the cyst over a year? Why the rapid growth in six months, is this invasive cancer moving to my fallopian tube? I have three young children. Please help.
Thank you for your response. They pretty much make it impossible to talk to the doctor, I've requested and emailed the appointment gal who passed on my email, and the doctor did say instead of the six week apt, she would see me in two weeks. To me, that is not good enough.
Is there anything in my story that anyone relates to and can give me something positive to think about? I am falling apart, and I wonder why I hear of these stories about people being rushed in to surgery the next day, and I'm supposed to be at a top cancer care clinic, and I fell really put off.
Did anyone have symptoms like mine, and have a good outcome? What does the pain mean? I always felt it was a good thing. The borderline tumor never caused any pain, it was only because I was pregnant that it was discovered.
Thank you for taking the time to help me, I have noone to talk to right now.
Hi, I had your symptoms and my cyst turned out to be a benign serous cystadenoma. The amount that your cyst "grew" really isn't very much in 6 months. Your CA125 number sounds good. As far as the fallopian tube being enlarged, the cyst can do that. Mine was swollen like a balloon and still all was benign. I wouldn't panic.
Keep posting, there is so much knowledge to be had from the wonderful women on this forum.
Linda, your post has stopped me (at least for now) from a two day out of control spiral downward, tears, hysteria, writing goodbye letters to my kids.
Please, tell me more. The more positive, the better! Is 1cm growth, with the expanded fallopian tube, AND the back ache, intense pain, bloated feeling like I am pregnant, breast tenderness, etc., the same as you had?
While I have you here, do you recommend a full hysterectomy at age 39? Did you have one? I have the left ovary that has a 15% chance of a reoccurence of that "borderline tumor" and now the right ovary that has God knows what on it.
Yet, I feel like having a hysterectomy can cause so many problems too. How does anyone decide?
I wonder about sex life, moods, hormones, how is it on HRT and no ovaries at age 39?
THANK YOU for talking to me!!!
I think the "growth" is minimal and I wouldn't focus on it. Was it done by the same ultrasound tech on the same machine? Sometimes numbers even vary. They checked mine in Feb. and told me mine had shrunk 1cm, and then in March it was back to the original size. When I questioned the doctor she basically said that measurements are not always "precise". So, in reality, mine probably didn't ever shrink at all!
You could try calling again tomorrow and asking to speak directly to one of the nurse practitioners instead of just the receptionist. Maybe if you tell her how concerned you are, they will work you in. Or just show up there. I know that sounds nuts, but I have done it.
Remember 99% of ovarian cysts are benign. I know how stressful this is, but try to relax as best you can. We are all here for you.
Pam, I just read your note, thank you! Wow, what an ordeal you have been through. I'm very upset that my doctor won't call me, I don't understand it. I'm not a hypochondriac, I've had no problem waiting 18 months while there was no change, now the change comes with intense symptoms the past two months. Isn't it standard of care to take someone in to surgery right away when the fallopian tube looks like it is being involved? How can they wait two weeks, then surgery calendar will likely be additional waiting.
I'm just so upset about it. If I had more information about why this isn't such an urgent matter, that would help too. No communication and only talking to the "appointment" people is really frustrating.
Thanks for listening!
My regular OB removed the borderline tumor as though it was a cyst, so I have a higher chance of it coming back. She also biopsied the right ovary, which she said had greenish/black stuff on it that she had never seen before. That was not comforting, and I heard her say, "It spurt". Luckily that was found to be normal benign changes with pregnancy. I sit here now and feel like I am falling through the cracks. That this all of a sudden has changed cancerous and nobody is doing anything about it.
I also think CA-125 is rather high at 20, even though "normal". If I had nothing going on, why wouldn't it be 8 or something that most people have when there truly is nothing going on.
Anyone willing to talk to me, please do!
Thank you again!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi, oh, so glad my post helped you at least a little bit :-)
Yes, I had all your symptoms, plus constipation and vaginal spotting for 2 months. They discovered my cyst in January and I had surgery in March to remove it. My gyne said we could wait and watch one more month, but I was so miserably incomfortable and scared that I just wanted it gone.
As far as the hysterectomy goes, I had the left tube and ovary removed. My gyne said the right ovary looked fine, but I have had 2 other cysts and I really debated about having it removed too. I ended up leaving it in because my gyne really recommended it. I'm in peri-menopause, but still having periods and she felt the hormones would benefit me as far as hot flashes etc. It's a tough decision. Since you are only 39. I think you will have to discuss that one with your doctor and weigh the pros and cons.
But, here is what I really think. Your other cyst was borderline...not cancer. You have been watching this one and I cm, is only about 1/2 inch. That isn't a lot of change. The fallopian enlargement is not unusual because these silly cysts hang and twist on the tube.
Hope you feel a little calmer. Keep posting and we will all keep answering. This group is wonderful!
p.s. Your CA125 number is really normal. It may not be an 8 simply because you have a cyst. Having a cyst can elevate it. But, the fact that it was 20 in January and still 20 in June is EXCELLENT. It shows stability and that is also important!
Linda, thank you for your post. Yes, you've helped!!!
The thing is that your cyst was discovered in January and you had surgery in March. It was benign, right? Mine has been there 18 months, one year with no change, including no shrinking, then at some point in the past six months it has grown as I was saying. That growth could be only the last two months.
Don't you think I should be seen and given a surgery date asap?
I'm kicking myself because I could have had the ovary out a year ago. I just thought it reasonable that since there was no change, we could monitor it. I thought no change meant "no cancer" and if it was worrisome, you'd think the doc would say, "this needs to come out now!"
So I am in a panic. I feel like time is of the essence and I don't want to wait. At this cancer center, they have you see nurse practitioners and it is just hard to make contact with the doctor. I was thinking of going and just sitting there all day until they squeezed me in, but I don't want them to be mad at me either.
Hi, Grateful06. I was just reading your thread from early this morning. I am a 33 year old mother of three in the "holy ****, what if" scary as can be stage, too. I cried when I read the part about leaving letters to your children. I did that too! I'm now over a year past the first cyst and not trusting medical people at all these days. I am a nurse and still very confused at the ball dropping going on with me and I am VIGILANT as can be! I send faxes, call, just plain nag. (I was my mom's care taker during her cancer for the two years before she lost her battle in 2004 and learned some squeaky wheel maneuvers myself!) Your hunger for info is well deserved. Just make sure you are taking care of yourself in between. Medicine is grey, not just black and white. Stay informed for yourself, you know your body. I can't say that enough. I just wish I had all the courage and questions in person with them that I have in the middle of the night. No question is a stupid question.
Hi Linda, same tech, same machine. The growth also coincides with two months of intense symptoms. I felt them before I knew there was any growth, so it isn't psychosomatic (which I wouldn't put past me with all this anxiety). I just got back pain, started burping every five minutes (TMI?), even the tech said "there is so much gas in here" and then the feeling like I was pregnant, even some nausea. No fun. I did take a home pregnancy test, just in case. Negative and hubby is a member of the seedless grapes club, so that was not much of a possibility anyway.
I'm an information junkie. I just feel like communication and information are what I need.
If I had a full hysterectomy and all the tissue was healthy and benign, I'd be SOOO sad. However, it would be much worse to not do it, and end up with cancer.
Question: Do you know much about borderline cancers? I have seen where they are not benign, not malignant but then I read where they are slow growing, and not receptive to chemotherapy, which makes them very deadly if they change to cancer and do spread.
I think I need to at least go get a copy of my records, I honestly don't even know the size of what is on my right ovary, I'm thinking maybe it was 3cm or so?
Thanks again! I'll be happy to get to the point where I can be on here, experienced, and helping other women. I think this feels like home already. I can't believe they don't just give this website out to women at the clinic, this is more helpful than anything I've come across the past 18 months, including talking with family or my doctor! (Who, by the way, I've only seen face to face twice.)
Pam, what makes you miss your ovaries? Do you feel like the same person without them?
That might make me have them remove the right, and wait on the left if it looks normal. I don't mind doing the "watch every three month" to just eek out another five years.
Like I said, my hormones in balance is really important. Also, at age 39 I am on the onramp to my sexual peak, and that is an important quality of life issue.
Most people don't want to talk about those issues with hysterectomy, my Aunt won't think of telling me about moods, sex life, etc., she just said she probably didn't need a hysterectomy at 40 (she is 72 now) but had it done because of excessive bleeding. She says it was OK, no more info.
Info is power! But I also realize it is hard to share those parts of our lives too.
Breathing a huge sigh of relief . . .I may even turn the computer off tonight and try to clean, and focus on my life here, I've been so consumed I almost forgot to pick up my 7 year old at school. I also have a 4 and an 18 month old, and I just can't afford to fall apart.
But fall apart I have. Thanks again to you both!
OK goodnight you too, and I'll look tomorrow for any more posts, and I am going to MAKE myself chipper up. It is 10pm here, still two hours to do something productive before turning in. I will turn off the computer, that I have compulsively looked up every article on ovarian cancer, of course.
I don't blame you for crying...it is scary stuff. I cried too and was a mess for much of the 2 months I had the cyst. But,look at it this way. It could be that your right ovary is completely fine once they remove the cyst on it, or they may be able to do a cystectomy and save a portion of the ovary. Then maybe they can remove your left ovary (the one they said needs to come out eventually anyway, right?) while in there and still leave you with some hormones?
You could try to see a gyn-onc if you could get in sooner. I think part of the reason your doc isn't getting you in quicker is they aren't very alarmed at your U/S. That is a good sign medically speaking, though more stressful for you.
I hadn't thought of it that way, the appointment gal said, "yes she wants to see you sooner than six weeks, but the first opening is June 21st".
I guess I have to deal with it.
I hadn't thought of actually trusting her, that maybe she isn't as alarmed? I need to think more positively. But I trusted my OB during my c-section, that she could remove the cyst and it wasn't cancerous, yet the way she removed it was not right, and now I have a higher chance of having it return. I sometimes feel like I can't let my guard down and trust my doctors, because you hear of so many horror stories. I know they are human too. I'm afraid to see my doc on June 21st and have her say, "You should have asked to see me sooner!" because that is what happens when you don't directly communicate.
So, I am probably boring you two by now!!
Pam, the nurse practitioner, who is very abrupt, told me the US showed the complex cyst was changing. The fact that it is 1cm bigger and the fallopian tube is enlarged, came from the radiologist during the ultra sound. He said I needed an MRI. The nurse practitioner said, "no, that is just an expensive test and won't tell us anything". the nurse practitioner is very short, I don't feel comfortable telling her anything. I asked her, "What about this intense back pain that started two months ago?" and she said, "Well, have you tried ibuprofen?" after a long pause, kind of sarcastically. Of course I meant it as a question of urgency, like doesn't this suggest malignant ovarian tumor? She is very hard for me to talk to.
I need to be the squeaky wheel and just go sit there all day and ask if I can get squeezed in.
Have you guys ever been really adamant about appointments, etc? It is very unlike me (more meek than a bulldozer, but starting to feel like a friggin' bulldozer!)
I'm not trying to scare you, but I had a complex ovarian cyst that turned out to be a rare form of ovarian cancer -- a germ cell cancer called dysgerminoma and choriocarcinoma. My CA-125 was normal because the tumor marker (blood test) for germ cell cancer is Beta HCG -- the pregnancy hormone. If you are scared, don't give up until someone gives you help. My OB/GYN said I "sure as shirley didn't have cancer." He operated on me to remove what he said was a benign mass (10 cm) and burst that mass and spread it all over my abdomen. Two weeks after that surgery, I had a lot of abdomenal (abdominal) pain, bloating and could feel something growing in my lower abdomenal (abdominal) area. My OB/GYN's response was: "You're just anxious because you have cancer. I'll prescribe an anti-anxiety drug for you." He nearly killed me with his arrogance. I finally got into the GYN/ONC five weeks after the first surgery. By then the cancer had spread all over my abdomen -- into my colon, appendix and even on my heart. I went into chemo compromised, had kidney failure after the third round, went into shock and ended up at 90 pounds when they were done with me (I'm five foot seven inches tall). I've been in remission for 2 1/2 years now but I'm permanently disabled from the effects of chemo. Follow your instincts. Mine were right on. Even if yours or not, it's better to be safe than sorry. I wish you the best in your treatment and with your children. My three children (I was 45 when diagnosed) are glad I'm still here. Me too.
Blonde . . .I have a question . . because I am obsessive about this (I said I wasn't going to turn the computer on and here I am again!), your post does worry me, but could really help me if I have the same thing that you do.
I have severe signs of pregnancy right now, and have for the last month or so. My other symptoms of pain have increased over the last two months.
Could my "cyst/tumor" be secreting this pregnancy hormone and making me feel pregnant?
A home pregnancy test was negative.
At least if this was looked in to, they could remove it hopefully without bursting it, and causing those problems. Although I have to say, my original OB who was also very arrogant and blew off all my "what if it is cancer?" concerns, said "it spurt" as she biopsied the right ovary, it had greenish blackish stuff covering it. Now, when this was sent to pathology, they said it was benign "disiduos" (sp?) changes commonly seen in pregnancy. Now, can I trust that pathology report, who knows? It would be awful if for 18 months, that "spurt" was really cancerous and has been taking hold in my body.
If something that awful happened, I'd have to give up, I mean what are the odds?
The biggest lesson I take from your story, is to stick with a gyn/onc. I just chose to believe my OB that it was a regular cyst (the borderline tumor) and let her "shell it" and the way she did it, doubled my chance of it returning. (still is relatively low at 15%)
I feel very confused, sometimes angry, and am so mad that I cannot just talk to my doctor. June 21st cannot come soon enough.
Please describe your symptoms, and let me know if there is a blood test to identify the cancer you had, would it be a regular pregnancy blood test? I think it odd that you wrote this tonight, and here I feel totally pregnant (achy back, bloated, very tender breasts).
Let me know and thank you for your time. Your cancer was obviously receptive to chemotherapy, right? What was your treatment that healed you? Also, why do people say remission and not "cure" . . .is it because you just don't know for sure?
I have too many questions. Take care and thank you!
Was reading your info, it stinks how tough it is to just gt basic info sometimes fromyour doctor. I have a complex cyst that is growing and have become inreasingly concerned after actually picking up copies of the records for myself. My sister last year had an ovary removed with a complex cys which turned out to have a broderline tumore in it. She had the CA125 & it was normal, it supposedly is not a good indicator of early ovarian cancer. It an also be easily elevated by cysts or endometriosis. She was sent to a gyn/oncologist who felt they got everything because the tumor was encapsulated so he did not recommend hysterectomy. To be safe he did another CAT scan & within a month of previous surgery she had another cyst. She was told it's fine we'll watch & wait. She was too scared & instead opted for complete hysterectomy (she's 40, they found another borderline tumor which then needed no treatment but had she waited!! Anyway she has convined me, along with others on this forum to have my cystremoved. I ended up calling her gyn/oncologist and just scheduled an appt. I would recommend you do the same with your history. Chances are you're probably fine but it's better to have the gyn/oncologist do the surgery just in case so that the surg. is handled properly & he can see first hand what's going on. If you need to have a referral for your insurance call your primary doc.
Pam and Linda, you are on the top of my holiday list. You are so awesome. Really, I feel so much better. I just have not been able to stop crying, and maybe because I am a control freak to some extent (aren't we all?), I just can't take not knowing and not having the ability to be seen right away, and I just see myself dead and leaving my children. My husband happens to be away right now, will be back next Wednesday, so that is hard on me, nobody to talk to.
I really appreciate the information about the STABILITY of the test meaning something.
I'm wondering Pam, if having lost your ovaries has impacted your quality of life from a hormonal basis? Sex life, mood swings, depression, etc?
I tried birth control pills years ago and they made me very depressed, stopped that right away. I'm a very happy person usually. Then this third pregnancy (maybe because a girl?) just made me feel psychotic. I realize for me that my hormone balance is really important.
This is such a hard choice, I have the one left ovary that the OB said would need to come out within two years to be safe, and then now the right ovary with something in it, causing severe symptoms and growing.
Question: Since it was stable all year (not growing) doesn't this mean it wasn't cancer then? Maybe it has changed, but doesn't cancer, by definition, grow? That is why I always felt safe about "watching it".
Second question: (or tenth? I've lost count) . . .should I just find any gyn/onc in the area and try to be seen before June 21st?
Thank you again!!!!!!!!!!!!!!!!!!!
HI, PLEASE give me any information you can. Let me give you a bit of history- 1997 uterus removed due to prolapse after 3 vaginal births both ovaries/tubes left intact, only 27 ob/gyn didn't want to put me on HRT due being "so young". Not one single problem until December 2004 when a large left adnexal mass was found by coincidence on CT Scan. (I am a ER nurse and had sudden severe right lower guadrant abdominal pain while at work, I ended up being a patient instead of the nurse. CT was done looking for a kidney stone on the right. The dr on duty trying to be funny while I was on IV and pain meds came to my bedside and told me "you don't have a kidney stone but you are growing an alien". He then walked out of the room, didn't even tell my husband I needed to see my ob/gyn. Just told me as I was leaving I must have passed a stone and go home and "enjoy the pain meds". When I woke up later and thought back to what he had said, it didn't make sense. I called the radiology report line, listened to my CT report, that is how I found out I had a left adnexal mass. I had a left ovary removed 6 wks later, jan 2005. Patho report was cystadenoma. All was well once again until dec 2005 when I had right lower quad abdominal pain again, Transvag US showed large ovarian cyst on the right. Laproscopic surg done once again to remove those cysts and part of my ovary. Again, the ob/gyn didn't want to remove the ovary b/c of my age. Everything has been good, even went back for pelvic exam. NOTHING was palpated. Told to come back in a year.)Here is the lastest development and why I am here today:
In early may (yes just a few weeks after pelvic exam in april) I began having this vague pain when I stood in my right hip and lower back. Sometimes it would be so sharp, I would hate to stand up from a sitting position and the nagging low back pain kept me from sleeping much at night. I self diagnosed a back strain due to all the patient lifting etc. I would take motrin 800 mg several times a day and benadryl at night to help me sleep. The pain has since moved around to include the rlq. On the hope I had a UTI, I had a UA done at work 2 wks ago. I prayed I needed antibiotics, I didn't need them, UA was clear. I then walked around to the radiology dept had a friend do a "quick look" on ultrasound. We found a 7cm x 4.5 cm ovarian cyst with septation. I paged my ob/gyn, took the liberty to order myself a transvag US. Ob/gyn returned the call, told me to be in his office the next day at noon. We talked about how this was most likely another cyst, no big deal, and that we would most likely "do something about it" in aug. The next day I had my transvag US, radiologist report dx was Cystadenoma or other neoplastic process. That was when I got upset. Up until then I was trying to put up the strong front. When I was examined at the office, I tried to kid around with the dr. and asked, So, are we taking it out tomorrow? He replied, No but we aren't waiting til august either. My ob/gyn did not "like" the way it felt, also said the report of the US wasn't what he had hoped for. I asked him did he feel it would be cancer, his response was he didn't know until he got in there and the path was done.
Has anyone ever had this before? Could it be another cystadenoma? On US it is fluid filled and solid/semi solid structures in it. Also, are benign tumors fast growing or slow growing. You probly figure I should know since I am a nurse. I am ER, this is not my specialty. I haven't asked many questions at work of the drs. I have been doing a great act of not being scared. I have looked the net over and all I find on complex ovarian cyst/mass is cancer. I am despartely scared, I am only 37. We have 3 kids, 18, 17 and 12. I do not want to leave my husband or kids. I am probly worrying to much. I have had one hell of a year. First the ovarian NON cancerous tumor on the left then worst of all, while at work last march my Momma was brought in to me in full cardiac arrest. PLEASE, tell me any information you can.
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