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enlarged, irregular mass with CA 125 of 49 oh God, PLEASE HELP
My right ovary has a large mass, 7 x 5 x 8 cm and has irregular shape to it. My doctor is worried so I've had a total hysterectomy scheduled for next week. However, he did say that it could be benign entrometroma (sp sorry) or a cystadenoma as well. My CA is 49 and was also taken on the first day of my period. There's no fluid in my abdoman and the weirdest part is that the urinary frequency that brought me there has stopped. I know we won't what I'm dealing with until biopsy but can ANYONE out there tell me if they've had a similar situation. I'm prepared for cancer but darn it, I've had three children and am only 39 with no family history. Please, help me ease my mind for the next 5 days.
This is difficult for me...never having looked on this site. I have extremely heavy periods & now having eventually gone to my doctor have been to hospital for an internal examaination ( very painful!! not sure why as had cervial exams before!). I then had to have a scan done (tummy & internal). They found a 'fatty mass' (their words) & had to have an MRI done. I received a letter from the consultant & he had requested a CA 125 to be done with the blood test. I am puzzled, what does it all mean?
Hi Pebbles, my mass was found on a Friday and my doctor had my hysterectomy scheduled before I arrived on Monday for results. In less than one week everything was out. Thankfully, I had an endometrioma (my doc thought was cancer) but the waiting almost did me in. I can't imagine waiting 6 weeks. Good luck hun and let us know how things are going.
To all of you who had surgery, may I ask how long you had to wait to have yours scheduled? I also have a mass about 9.7cm (about the size of a grapefruit), and by obgyn is unsure of what type of mass it is (endometrioma, cyst, or dermoid). Of course, since Cancer cannot be ruled out until a biopsy is performed, I feel I cannot wait 6 weeks for surgery.
How long did you ladies have to wait?
How long did you ladies have to wait?
Dear new friends,
I just saw the oncologist today and he did a complete exam. He was wonderful and has the best reputation in Austin. He said that this 13 cm irregular mass (I was confused on how big it is) does look suspicious but he feels its probably a benign tumor. He's giving it 30 percent cancer, 70 percent benign. All this due to lack of family history, only slightly elevated CA level, and the way it felt when he palpated it. He said it feels mobile and is a great sign. He hopes to remove only that ovary and the uterus leaving one ovary for hormones. Thank you all for getting me through the weekend and I'll let you know the outcome after surgery on Wednedsay. Needless to say, I'm more relaxed and able to handle my situation much better now that I've seen a specialist. THank you all....you were angels. Good luck to all us of!!!
I just saw the oncologist today and he did a complete exam. He was wonderful and has the best reputation in Austin. He said that this 13 cm irregular mass (I was confused on how big it is) does look suspicious but he feels its probably a benign tumor. He's giving it 30 percent cancer, 70 percent benign. All this due to lack of family history, only slightly elevated CA level, and the way it felt when he palpated it. He said it feels mobile and is a great sign. He hopes to remove only that ovary and the uterus leaving one ovary for hormones. Thank you all for getting me through the weekend and I'll let you know the outcome after surgery on Wednedsay. Needless to say, I'm more relaxed and able to handle my situation much better now that I've seen a specialist. THank you all....you were angels. Good luck to all us of!!!
Hi Irish...no sweetie, you are not alone. I'm right here worried with you. All I can think about is not being there for my children and being in pain if I die. You and I have to keep our spirits up. I see my ob oncologist tomorrow and feel so torn about what he'll say. I'm afraid to hear what he really thinks but need to meet him in case he can ease my mind. I've never had such a fast education as I have this week and honeslty, I just keep praying I wake up from this nightmare. Good luck and let us know how things go. I am praying for you and me right this minute.
Hi Lizza, MickeyVicki, et al...Many of my symptoms are similar to Lizza's--I have adnexal masses on both my ovaries, one 5 x6 cm, the other 3 x 4, with a CA 125 level of 72. I'm 42 and have had 3 kids, with no other gyn problems until now.I see the gyn-onc on Tuesday, Feb 1 in North Atlanta. My complex cysts are described as septated/hemorragic. I am really concerned, too, but realize that until I see the oncologist and they probably do surgery, I can't know what I'm dealing with. It truly helps to know there are others out there and I am not alone. Thanks for lending your stories!
The outer covering of a normal ovary is smooth, like the texture of a boiled egg once the shell is removed. In fact, a normal ovary reminds me of a small boiled egg. My guess is that your doctor means the outer covering is not smooth but has a rough, dimpled texture, and is also possibly not white but more of a mottled color. Like I mentioned, part of my left ovary was a bluish-grey color.
But texture and color in and of itself means nothing. For example, somewhere on the internet I located pictures of a cystadenoma (those are benign) and a cystadenocarcinoma (those are malignant, and I hope I spelled that correctly!) These two ugly tumors look very much alike - solid, rough and dimpled with blotches of tan and brown colors - yet one is cancerous and the other is not. And both of them can cause elevated CA-125 levels. That is why a biopsy under microscope is necessary for any determination to be made, and thus why surgery is necessary. Your doctor will not know anything for certain until those cells are put under the microscope. It is very frustrating, isn't it??!! I hated that, the fact I was going into surgery not knowing what my doctor would or would not find.
But texture and color in and of itself means nothing. For example, somewhere on the internet I located pictures of a cystadenoma (those are benign) and a cystadenocarcinoma (those are malignant, and I hope I spelled that correctly!) These two ugly tumors look very much alike - solid, rough and dimpled with blotches of tan and brown colors - yet one is cancerous and the other is not. And both of them can cause elevated CA-125 levels. That is why a biopsy under microscope is necessary for any determination to be made, and thus why surgery is necessary. Your doctor will not know anything for certain until those cells are put under the microscope. It is very frustrating, isn't it??!! I hated that, the fact I was going into surgery not knowing what my doctor would or would not find.
Hi guys...
Thank you all for trying to help me not worry. I'm now taking a mild sedative to help me not worry and its helping a bit. I have one more question. My doctor just told me yesterday that this growth really makes her nervous because it has a MOTH EATEN appearence and is so irregular. Have any of you heard that too? I just keep getting mixed signals. I called the Ovarian Cancer center and they said that most normally when there is even the slightest bit of cancer present you will have a reading of over 100 on your CA. Mine is 49. Then, I read on other postings that there has been cancer under 100. Ya'll, I'm just such a wreck. I can't imagine waking up after being cut from stem to stern to hear, you have cancer and its spread. I don't know how you survived all of this as I feel like I'm sinking. I too have lost 10 pounds in 5 days but am forcing myself to eat. Please keep the postings coming....you guys are all I have who know how I feel. My friends and family just can't relate. Thank you all.
Thank you all for trying to help me not worry. I'm now taking a mild sedative to help me not worry and its helping a bit. I have one more question. My doctor just told me yesterday that this growth really makes her nervous because it has a MOTH EATEN appearence and is so irregular. Have any of you heard that too? I just keep getting mixed signals. I called the Ovarian Cancer center and they said that most normally when there is even the slightest bit of cancer present you will have a reading of over 100 on your CA. Mine is 49. Then, I read on other postings that there has been cancer under 100. Ya'll, I'm just such a wreck. I can't imagine waking up after being cut from stem to stern to hear, you have cancer and its spread. I don't know how you survived all of this as I feel like I'm sinking. I too have lost 10 pounds in 5 days but am forcing myself to eat. Please keep the postings coming....you guys are all I have who know how I feel. My friends and family just can't relate. Thank you all.
Mick, you are really encouraging me. I'm online now due to gastric pain, couldn't sleep. I've eaten very little this past week so that could be it. Lately, I too have noticed more gas but not especially constipation so that is encouraging. At least the urinary frequency has stopped. ONE THING I AM CONFUSED ON...my doc said she's worried because this thing isn't smooth. Does that mean its bumpy or is it just another way of saying irregular. It's irregular in shape with a bumpy look to it? THATS the part that has me nuts (and that moth eaten comment). Yea, I know, I'm trying to calm down as I know we won't know until a biopsy is done. Everyone keeps telling me to stay off the internet but its due to the internet that I feel educated. Not only that, but I found you. :o) Some moments I'm convinced I have cancer and then later think, but how? Three kids, a CA below 100, only 39 and no risk factors except starting my period at 11. Again, I know, no way to tell right? A friend of mine summed it up today when she said OVC just didn't read the text books so it could know how to act. It seems like a **** shoot. IF you don't mind, send me a post from time to time....you really do cheer me and I appreciate your time, very much.
My doctor's diagnosis on the sheet that I took to the surgery center for my pre-operative bloodwork read, "complex solid tumor." Sounded frightening to me, especially since she and I had been discussing my mass in terms of it being a "cyst" or a "cyst with solid components." Complex is a term used to describe cysts that have walls or solid components to them, as opposed to simple cysts which are merely filled with fluid. My doctor felt that I had either an endometrioma or a dermoid cyst and said that would be determined in surgery. Then, to make matters worse as far as my state of mind went, pre-op bloodwork came back with an abnormal reading for one component of my liver function! I was just sure that I had cancer and that it had spread to my liver!!
I am not familiar with the description of "moth eaten." I know there is a type of cyst that has a rough, blotchy appearance on the outer covering. I think it is a type of functional cyst but I cannot recall exactly which it is because my brain is on strike this morning! On the photographs taken at my surgery, I noticed that where the endometrioma was attached to my ovary, the covering of the ovary appeared to be roughly stretched and was greyish-blue. My ovary was at least twice the size of my right (normal) ovary and looked almost like a smashed boiled egg. It was obviously 'diseased.'
I am not familiar with the description of "moth eaten." I know there is a type of cyst that has a rough, blotchy appearance on the outer covering. I think it is a type of functional cyst but I cannot recall exactly which it is because my brain is on strike this morning! On the photographs taken at my surgery, I noticed that where the endometrioma was attached to my ovary, the covering of the ovary appeared to be roughly stretched and was greyish-blue. My ovary was at least twice the size of my right (normal) ovary and looked almost like a smashed boiled egg. It was obviously 'diseased.'
Thank you darlin...thank you talking me down and helping me to see what the positives could be. Not that I'm happy you (and others) went through this but if not for your stories, I might be really over the edge. I one more question. I read in someone else's posting that a Stage II, Grade III is worse than a Stage III, Grade I. What the heck are grades? And, how could that be worse? Do you have any idea? Thank you for being out there and taking time for me.
Stage and grades are used by the doctors to define the cancer. Stage refers to the spread of the disease: the spread is greater the higher the number. Stage I (lowest spread) generally refers to cancer confined to one organ of the body while Stage IV (highest spread) means cancer metastasis to other organs of the body. Grade refers to the aggressiveness of the cancer. Grade 1 cancers tend to spread very slowly while Grade 3 cancers tend to spread quickly. Of course, the prognosis for these cancers can be greatly affected by the quality of the surgery to remove as much of the cancer as possible (thus the reason we are so big on advising women to seek the surgical service of an oncology professional!!) and the body's reaction and ability to tolerate treatments of chemotherapy and/or radiation.
We are having nasty wintry weather today, so I have nothing better to do than play around with your symptoms on the search engine, and I have come up with another possible scenario for your condition. In addition to an endometrioma, a cystadenoma, or maybe even a dermoid cyst, you might have a Sertoli-Leydig tumor, also called androblastoma. This type of tumor has...a moth eaten appearance. According to most of the websites, these tumors are classified as being of low malignant potential, the treatment of choice is to simply remove the tumor (no chemo or rad), and the chance of recurrence or metastasis is less than 5%. There was a greater chance that my left ovary's endometrioma would be malignant than this type of tumor.
You are going to know so much about ovaries, cyst, tumors, benign conditions, and cancers by the time that you get to the oncologist office that the doctor will think that you are a nurse!
We are having nasty wintry weather today, so I have nothing better to do than play around with your symptoms on the search engine, and I have come up with another possible scenario for your condition. In addition to an endometrioma, a cystadenoma, or maybe even a dermoid cyst, you might have a Sertoli-Leydig tumor, also called androblastoma. This type of tumor has...a moth eaten appearance. According to most of the websites, these tumors are classified as being of low malignant potential, the treatment of choice is to simply remove the tumor (no chemo or rad), and the chance of recurrence or metastasis is less than 5%. There was a greater chance that my left ovary's endometrioma would be malignant than this type of tumor.
You are going to know so much about ovaries, cyst, tumors, benign conditions, and cancers by the time that you get to the oncologist office that the doctor will think that you are a nurse!
No, the endometriosis does not show up on the ultrasound. As far as I know, every woman in my family has endometriosis. They all suffered from symptoms of the condition; some had horrible symptoms including pain, bloating, cramps, intestinal distress, bladder distress, and heavy menstrual bleeding. I never had any of those symptoms, not even mild symptoms, and nothing that my doctors have found during routine exams indicated that I would have endometriosis.
When my doctor got the scope set up inside me for my surgery, she discovered that I had a terrible case of endometriosis in addition to that grapefruit-sized endometrioma. She needed essentially another hour of surgical time to 'zap this spot, that spot, and those adhesions' in an effort to remove as much of my endo as possible after removing the cyst. I was surprised to learn this news after my surgery, and was even more shocked when I saw the photographs.
My symptoms changed too. First I had mild abdominal swelling. Later I noticed that I was more aware of intestinal motion from bowel movements or gases on my right side. Then I missed a monthly cycle. At the end, I was feeling some mild discomfort on my left side and I would become breathless while going for a walk. But I did not have these symptoms at the same time. Most surprising to me is that I never suffered from urinary problems or need to frequently urinate; however, I do have endometriosis on my bladder, with an old adhesion that is two - three inches long and nearly half an inch wide.
When my doctor got the scope set up inside me for my surgery, she discovered that I had a terrible case of endometriosis in addition to that grapefruit-sized endometrioma. She needed essentially another hour of surgical time to 'zap this spot, that spot, and those adhesions' in an effort to remove as much of my endo as possible after removing the cyst. I was surprised to learn this news after my surgery, and was even more shocked when I saw the photographs.
My symptoms changed too. First I had mild abdominal swelling. Later I noticed that I was more aware of intestinal motion from bowel movements or gases on my right side. Then I missed a monthly cycle. At the end, I was feeling some mild discomfort on my left side and I would become breathless while going for a walk. But I did not have these symptoms at the same time. Most surprising to me is that I never suffered from urinary problems or need to frequently urinate; however, I do have endometriosis on my bladder, with an old adhesion that is two - three inches long and nearly half an inch wide.
additional question....my mass is irregular in size with uneven borders (not smooth). Does it mean the same thing? Irregular means not smooth?
Lizza honey, I hate to say it, but no one can tell you what this is until it's biopsied. We've all been in your shoes, nervously waiting. Waiting is the hardest part because once you know, either way, than you can take action. I get real antsy each month just wiating for blood draw results. It drives me absolutely crazy so I try to keep myself as busy as possible. Go shopping, go to the movies, go out with friends. You HAVE to do something to try and relax. You'll know soon enough. Please let us know how it went. I pray for benign results for you. God bless.
Thank you. I'm sure I will be fine once my husband arrives. He temporarily lives and works 1800 miles away and drove through the night to get home to me. He will be here in a few hours. I am better now that I've read the postings, taken a few doses of xanax and am trying to keep busy. On top of all this news taken alone with out my hubby, I've got my period so I'm a little more emotional than usual. All in all, I've gone temporarily crazy but you and everyone have really really helped. Not only that but I am blessed with some really wonderful and special people in my life who make it easier too. One thing I can say about the cancer scare....you realize exactly how lucky and blessed you are when everyone surronds you with love. I pray your counts continue to stay low forever... and thank you again for being a voice of reason. God bless us all.
You are really helping and I'm crying. I just need some positives to get me through the next few days. I've seen two obgyns. Mine who doesn't do surgery said she's holding out hope that its a cystademona. Her partner who may assist the ocologist said could be endometriosis. BOTH say its ugly, irregular, big and alarming. I realize you are not a doctor but you are helping ease my fear. I just need to get through the next few days. I asked my docs if we could do a lap but they said no due to size and spillage if cancer. I can't wait to meet the ocologist Monday.
Also, the weird thing is that urinary frequency and pain brought me to the doc. Now, the freguency is gone but pain comes and goes. He said it maybe from the mass moving off of the bladder and from what I've read, a movable mass is normally benigh. My other ob said it could be fused to my uterus but, my uterus looks clear. Wouldn't they see endometrosis in my uterus IF thats what it is?
Also, the weird thing is that urinary frequency and pain brought me to the doc. Now, the freguency is gone but pain comes and goes. He said it maybe from the mass moving off of the bladder and from what I've read, a movable mass is normally benigh. My other ob said it could be fused to my uterus but, my uterus looks clear. Wouldn't they see endometrosis in my uterus IF thats what it is?
Try not to worry, and you have to eat and keep your strength up for your upcoming surgery. I just had surgery in which my CA 125 was 95, I was so scared!! The cyst was 6cm and on my left ovary. It was benign, but I had horrible endo, so a total hysterectomy was done. I hope all goes well for you..I'll keep you in my prayers. I had a gyno/onco in the operating room and that made me feel much more safe. All biopsys were done right then and there..and it was ruled endo and then the clean up began..endo is a nasty thing to have but at least it's not cancer!!
I noticed your earlier post, on your doctor giving you a "40% cancer versus 60% benign" estimate on your condition. Statistics are odd things. Statistics serve their purpose when looking at a large, "overall" picture; when dealing with an individual case, statistics are not very useful or reliable. I can relate to your current state of mind, because I went through the same thing. I was worried sick (I lost nearly 10 pounds in a week, which made me even more fearful that I had cancer!) The statistics that I read on my condition made me even more fearful. I found a medical website geared to doctors that referenced data on ovaries and cysts, comparing diagnoses such as cyst or tumor size, composition like simple or complex, ovarian involvement and size, and other such information. The site then assigned a value to the diagnosis and provided statistics on the probability that the cyst or tumor would be malignant. According to the chart, my specific information assigned me a probability of 79% of finding malignancy!! Yes, seventy-nine percent chance of having cancer. Well, it was benign anyway, and I suffered a great deal of worry for nothing. My doctor told me she was confident my mass would be benign and based her decision on her surgical experiences, but she flatly refused to assign any specific probabilities to my situation; in hindsight I can understand why.
Dear all...
Have I mentioned that I love you? I've had the worst four days: no eating, no sleeping, diarrhea and a total wreck. I've done the absolute worst thing...tryed to find the appearance of my ovary on the internet. BAD IDEA..mine looks moth eaten and is not smooth. Its also large. Thank you ALL for being angels from out of no where. All I want to do is be here for my children. Thank you for trying to ease my fears. oxoxo to all of you.
Have I mentioned that I love you? I've had the worst four days: no eating, no sleeping, diarrhea and a total wreck. I've done the absolute worst thing...tryed to find the appearance of my ovary on the internet. BAD IDEA..mine looks moth eaten and is not smooth. Its also large. Thank you ALL for being angels from out of no where. All I want to do is be here for my children. Thank you for trying to ease my fears. oxoxo to all of you.
Last December 15, I had an endometrioma the size of a grapefruit removed, along with my left ovary and the fallopian tube. The ovary was enlarged and also had an irregular shape (as did the fallopian tube) because of the endometrioma. I have seen the photographs taken during my surgery, and I am amazed that I was not doubled over in pain from that cyst.
An endometrioma is a cyst filled with old endometrial tissue - essentially blood. My CA-125 level was only 23. However, Karinc, who often posts on this thread, had the very same condition and surgery as I did, yet her CA-125 was 99. My doctor showed me the parameters for my CA-125II test, and it read that up to 35 is considered normal, and over 100 is indicative of malignancy. Many things, such as an infection or endometriosis (which we learned during surgery that I have, although I have never had symptoms of it) can elevated the CA-125 level.
My surgery was performed by my regular gyn doctor, BUT she is a specialist at "complicated surgeries". The surgery was done by laparascope. However, we had the agreement that in the event cancer was discovered, then she would proceed with the larger laparotomy surgery so that as much of the cancer as possible could be removed. The first thing that I did when I woke up in the recovery room was feel my abdomen to count how many and the size of my incisions.
An endometrioma is a cyst filled with old endometrial tissue - essentially blood. My CA-125 level was only 23. However, Karinc, who often posts on this thread, had the very same condition and surgery as I did, yet her CA-125 was 99. My doctor showed me the parameters for my CA-125II test, and it read that up to 35 is considered normal, and over 100 is indicative of malignancy. Many things, such as an infection or endometriosis (which we learned during surgery that I have, although I have never had symptoms of it) can elevated the CA-125 level.
My surgery was performed by my regular gyn doctor, BUT she is a specialist at "complicated surgeries". The surgery was done by laparascope. However, we had the agreement that in the event cancer was discovered, then she would proceed with the larger laparotomy surgery so that as much of the cancer as possible could be removed. The first thing that I did when I woke up in the recovery room was feel my abdomen to count how many and the size of my incisions.
Just to give you one more positive thing to hold onto, my friend went into surgery fully expecting to be diagnosed with late stage ovarian cancer. Her CA at the time was in the 700's. She came out with endometreosis, same nasty surgery, very different outcome. There is always HOPE. I'm glad to read your doctor is being very cautious, good for you. Again, please be sure to have a gyn/onc standing by. God Bless.
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