Cancer scares have a way of dulling your ability to think of witty headlines
January 7, 2010 8:23 AM Subscribe
Mom has ovarian mass but the doc has ordered a CT scan and a follow up with an oncologist. She's alone and I'm on the other side of the country, a blubbering mess with the words CANCER screaming in my head. Any insight would be much appreciated.
My mom has had a gynecological exam, and an ultrasound, where they found a fibroid (for which she apparently will need surgery) and an ovarian mass.
The mass is apparently around 2mm and is fluid filled. I know that benign cysts are pretty common in women, but the doctor has ordered a CT scan and a follow up with a gynecological oncologist. The word oncologist scares the living shit out of me. And as far as I can tell, a CT scan is only ordered when cancer is suspected and thought to have spread, and they need to assess the extent of this spread.
Background: My mom is 52, has given birth once, and has had an IUD for most of her life. She's had spottiness lately (over the last 3 months or so) but we just assumed it was because she's hitting menopause. Also, she's had heavy bleeding for years, but that's been chalked up to the IUD by her last gyno (but my dad never let her go to the doctor so this is the first gyno exam she's had in almost 10 years.)
I guess I'm wondering if the CT is standard for when a woman is going to get surgery (I thought they would just try to get the fibroid and then biopsy the ovarian mass,) or if I should really brace myself for something worse. Also I thought mass and cyst were interchangeable terms, but is it something I should be worried about?
I know you are not my doctor, my mom's doctor, a gyno-onc, etc. But if you have something to share, experiences, or hell, even support, it would be greatly appreciated. We've only got each other and I haven't been able to stop crying for the last...day, or so. It'd be nice to hear some other stories (that aren't on the ovarian cancer boards) or input to get some perspective.
My mom has had a gynecological exam, and an ultrasound, where they found a fibroid (for which she apparently will need surgery) and an ovarian mass.
The mass is apparently around 2mm and is fluid filled. I know that benign cysts are pretty common in women, but the doctor has ordered a CT scan and a follow up with a gynecological oncologist. The word oncologist scares the living shit out of me. And as far as I can tell, a CT scan is only ordered when cancer is suspected and thought to have spread, and they need to assess the extent of this spread.
Background: My mom is 52, has given birth once, and has had an IUD for most of her life. She's had spottiness lately (over the last 3 months or so) but we just assumed it was because she's hitting menopause. Also, she's had heavy bleeding for years, but that's been chalked up to the IUD by her last gyno (but my dad never let her go to the doctor so this is the first gyno exam she's had in almost 10 years.)
I guess I'm wondering if the CT is standard for when a woman is going to get surgery (I thought they would just try to get the fibroid and then biopsy the ovarian mass,) or if I should really brace myself for something worse. Also I thought mass and cyst were interchangeable terms, but is it something I should be worried about?
I know you are not my doctor, my mom's doctor, a gyno-onc, etc. But if you have something to share, experiences, or hell, even support, it would be greatly appreciated. We've only got each other and I haven't been able to stop crying for the last...day, or so. It'd be nice to hear some other stories (that aren't on the ovarian cancer boards) or input to get some perspective.
It's not the same, but it might help you to know that I have a grandmother and an aunt that both had breast cancer and both beat it. Plus, my aunt was happy to get a free boob-job after her double-mastectomy.
posted by InsanePenguin at 8:41 AM on January 7, 2010
posted by InsanePenguin at 8:41 AM on January 7, 2010
And as far as I can tell, a CT scan is only ordered when cancer is suspected and thought to have spread
I don't think this is necessarily the case (I know two people who had CT scans for ovarian cysts who do not have cancer) and I wouldn't take "they ordered a CT scan" as indication that therefore your mom must have cancer.
Obviously the doctor is concerned about this possibility. Note: it is still a possibility, not a diagnosis. Don't get ahead of yourself and assume diagnosis. If your mom does get a cancer diagnosis, don't get ahead of yourself and assume prognosis. I say this not because of "positive thinking" blah-blah, but because it is easier to make good decisions when you're going on the basis of information rather than fear.
This is awfully hard stuff, I know. I am sorry that you and your mom are going through all of this. My hope is that she is getting good care and that, if this does turn out to be cancer, that she has a good response to treatment and a healthy 50-year remission!
Anecdata point: my husband's boss was diagnosed with Stage Four ovarian cancer at around the same age as your mom. She had a very tough year with chemo, but six years later she's still in remission, healthy and active and working full-time and making art on the side and traveling with her lovely wife.
posted by Sidhedevil at 8:43 AM on January 7, 2010 [2 favorites]
I don't think this is necessarily the case (I know two people who had CT scans for ovarian cysts who do not have cancer) and I wouldn't take "they ordered a CT scan" as indication that therefore your mom must have cancer.
Obviously the doctor is concerned about this possibility. Note: it is still a possibility, not a diagnosis. Don't get ahead of yourself and assume diagnosis. If your mom does get a cancer diagnosis, don't get ahead of yourself and assume prognosis. I say this not because of "positive thinking" blah-blah, but because it is easier to make good decisions when you're going on the basis of information rather than fear.
This is awfully hard stuff, I know. I am sorry that you and your mom are going through all of this. My hope is that she is getting good care and that, if this does turn out to be cancer, that she has a good response to treatment and a healthy 50-year remission!
Anecdata point: my husband's boss was diagnosed with Stage Four ovarian cancer at around the same age as your mom. She had a very tough year with chemo, but six years later she's still in remission, healthy and active and working full-time and making art on the side and traveling with her lovely wife.
posted by Sidhedevil at 8:43 AM on January 7, 2010 [2 favorites]
This part sucks, but you’re going to have to take a deep breath and just wait. Nothing’s happened yet. She might have cancer, she might not. It might be easily treatable, it might not. You just don’t know, and there’s not much you can do until you do know-except be there for your parents. This is incredibly scary for them, too, and I think they’d probably appreciate your support right now.
Personal experience that may or may not help you: My father was diagnosed with stage IV colon cancer two years ago. It was a week of more tests and more bad news that ended with ‘it hasn’t reached his brain yet’. He’s still living, working, and joking about his lost weekends in chemotherapy. So it might also be helpful to remember that even the worst outcome isn’t necessarily as bad as it seems at the time.
posted by dinty_moore at 9:23 AM on January 7, 2010
Personal experience that may or may not help you: My father was diagnosed with stage IV colon cancer two years ago. It was a week of more tests and more bad news that ended with ‘it hasn’t reached his brain yet’. He’s still living, working, and joking about his lost weekends in chemotherapy. So it might also be helpful to remember that even the worst outcome isn’t necessarily as bad as it seems at the time.
posted by dinty_moore at 9:23 AM on January 7, 2010
Here are a few random stats that may help ease your mind a tiny bit in case it is cancer: It has been shown that there is a correlation between younger age and better survival of ovarian cancer, and your mom is definitely at the low end of the age range. Survival is also better when the patient is being followed by a gynecologic oncologist specifically, so it's good that your mom is going to see one. (I can provide citations for these if you want.)
Also I thought mass and cyst were interchangeable terms, but is it something I should be worried about?
A "cyst" is generally a walled-off, fluid-filled area (think tiny, thick-walled water balloon), whereas "mass" can refer to almost any kind of piece of tissue that doesn't look right. So a cyst is a kind of mass, but a mass is not necessarily a cyst. Neither is necessarily cancer.
I guess I'm wondering if the CT is standard for when a woman is going to get surgery
In cases of possible ovarian cancer, a CT scan may be used to help visualize the rest of the abdomen, particularly the lymph nodes, to help determine what the surgeon should look at while he or she is working. I've heard of CT scans also being used to get a better picture of fibroids before surgery, though I have no idea whether this is common.
Here's the thing, though: your mom's doctor knows why the CT was ordered, even though you and your mom don't, so it is unneccessarily stressful for you to be guessing about it. The doctor won't tell you (due to patient privacy and HIPAA regulations), but your mom should definitely know the purpose of any procedure she is to undergo. It's part of informed consent, and part of learning to be an advocate for herself in the healthcare system. Your mom has every right to call the doctor to find out what the CT is looking for. If she doesn't want to do it, ask her if she will sign a release form so they can talk to you over the phone about it.
Honestly though, trying to guess whether this is cancer based off internet information about what tests have been ordered is probably just going to drive you crazy. I can absolutely relate to the need to do something and know all the facts when life feels this out of control, but I would encourage you to focus on the one thing you really can control in this situation: letting your mom know how much you love her during a time of stress, whether or not this turns out to be cancer. As you're finding out, even just a "scare" is incredibly difficult to deal with, so be there for her through the process.
Good luck to you, your mom, and your whole family. I'll be thinking of you.
posted by vytae at 9:23 AM on January 7, 2010 [1 favorite]
Also I thought mass and cyst were interchangeable terms, but is it something I should be worried about?
A "cyst" is generally a walled-off, fluid-filled area (think tiny, thick-walled water balloon), whereas "mass" can refer to almost any kind of piece of tissue that doesn't look right. So a cyst is a kind of mass, but a mass is not necessarily a cyst. Neither is necessarily cancer.
I guess I'm wondering if the CT is standard for when a woman is going to get surgery
In cases of possible ovarian cancer, a CT scan may be used to help visualize the rest of the abdomen, particularly the lymph nodes, to help determine what the surgeon should look at while he or she is working. I've heard of CT scans also being used to get a better picture of fibroids before surgery, though I have no idea whether this is common.
Here's the thing, though: your mom's doctor knows why the CT was ordered, even though you and your mom don't, so it is unneccessarily stressful for you to be guessing about it. The doctor won't tell you (due to patient privacy and HIPAA regulations), but your mom should definitely know the purpose of any procedure she is to undergo. It's part of informed consent, and part of learning to be an advocate for herself in the healthcare system. Your mom has every right to call the doctor to find out what the CT is looking for. If she doesn't want to do it, ask her if she will sign a release form so they can talk to you over the phone about it.
Honestly though, trying to guess whether this is cancer based off internet information about what tests have been ordered is probably just going to drive you crazy. I can absolutely relate to the need to do something and know all the facts when life feels this out of control, but I would encourage you to focus on the one thing you really can control in this situation: letting your mom know how much you love her during a time of stress, whether or not this turns out to be cancer. As you're finding out, even just a "scare" is incredibly difficult to deal with, so be there for her through the process.
Good luck to you, your mom, and your whole family. I'll be thinking of you.
posted by vytae at 9:23 AM on January 7, 2010 [1 favorite]
A few years back, I had the same first steps as your mother (concerning the ovarian mass): a mass appeared on ultrasound, then they put me through an MRI (I think it is the same as the CT scan) to check what the mass was doing. What they found was that that cyst was drawing blood, so they scheduled me for laparoscopic surgery.
What they explained to me was that they would take the cyst out, analyse it during surgery, then a) if the cyst was benign, do nothing else or b) if the cyst was what they call border-line (not cancerous but it could turn that way), they would remove the ovary. Their main reason for removing the ovary being that a cyst is the only reliable symptom for ovarian cancer and they could not risk missing a few 'border-line' cells and leave them there, where they could turn into cancerous cells and do unnoticeable damage.
Luckily, at the age of your mom, another desired pregnancy is unlikely; but be prepared that they may err on the side of caution and remove her ovary.
The surgery is full anesthesia, so not without risks, but if it goes that way she will have only 3 tiny scars (search for laparoscopy). The recovery for that kind of surgery is quick provided she doesn't try to move too much for a few days.
For what information it may give you, my cyst was over 5mm, and I lost an ovary. This is obviously anecdotal and hopefully nothing is very wrong with your mother.
posted by tweemy at 9:24 AM on January 7, 2010
What they explained to me was that they would take the cyst out, analyse it during surgery, then a) if the cyst was benign, do nothing else or b) if the cyst was what they call border-line (not cancerous but it could turn that way), they would remove the ovary. Their main reason for removing the ovary being that a cyst is the only reliable symptom for ovarian cancer and they could not risk missing a few 'border-line' cells and leave them there, where they could turn into cancerous cells and do unnoticeable damage.
Luckily, at the age of your mom, another desired pregnancy is unlikely; but be prepared that they may err on the side of caution and remove her ovary.
The surgery is full anesthesia, so not without risks, but if it goes that way she will have only 3 tiny scars (search for laparoscopy). The recovery for that kind of surgery is quick provided she doesn't try to move too much for a few days.
For what information it may give you, my cyst was over 5mm, and I lost an ovary. This is obviously anecdotal and hopefully nothing is very wrong with your mother.
posted by tweemy at 9:24 AM on January 7, 2010
Also I thought mass and cyst were interchangeable terms, but is it something I should be worried about?
I have polycystic ovaries, so they are always covered in cysts. However, last year, during a routine ultrasound, they discovered a mass. After many tests, the mass turned out to be nothing, but if it looks weird at all, they need to check it out. It might be nothing, or it might be something, but checking it out in and of itself doesn't suggest anything bad.
posted by crankylex at 9:25 AM on January 7, 2010
I have polycystic ovaries, so they are always covered in cysts. However, last year, during a routine ultrasound, they discovered a mass. After many tests, the mass turned out to be nothing, but if it looks weird at all, they need to check it out. It might be nothing, or it might be something, but checking it out in and of itself doesn't suggest anything bad.
posted by crankylex at 9:25 AM on January 7, 2010
IANAD.
What is her CA 125 number?
If there is a concern that the mass may be an ovarian tumor, the doctor should have immediately ordered a blood test to detect and measure the CA 125 protein marker. This is a standard diagnostic test for ovarian cancer which detects a biomarker present in higher elevations in tumor cells.
Please note that the CA 125 test is not a perfect diagnostic tool. False positives and negatives have been known to happen. If your mom gets a positive, unless it is extremely high, they will most likely confirm by running the test again. But I firmly believe it's important to have the test done. Oncologists treating two of my friends with ovarian cancer use it on a regular basis to determine whether their chemotherapy regimens are working. It was also instrumental in determining their initial diagnoses.
As I said, I'm not a doctor. But if hers did not order the CA125 test, you can and should ask why.
Normal range for CA 125 is between 0 and 35. Slight elevations above 35 may require monitoring or further diagnostic testing. Greater elevations (70+) may indicate something is wrong. The higher the number, the more likely there is a problem.
My understanding is that CT (and depending on the type and position of a mass, possibly an MRI) scans are now becoming common when an ovarian cyst or a mass has been found. When the results of an ultrasound or x-ray are inconclusive, then a doctor may turn to a scan technique that provides higher resolution and a more comprehensive way to see the entire abdomen. A CT or MRI is typically the best way to determine what's going on other than surgery. This is normal, and not an indication that she has cancer. If I were you, I would consider the test a precautionary measure until you have an alternate diagnosis.
Good luck to you all. I know it's impossible not to worry, so I won't urge you to.... butI hope that this is nothing and she's going to be just fine.
posted by zarq at 9:26 AM on January 7, 2010 [3 favorites]
What is her CA 125 number?
If there is a concern that the mass may be an ovarian tumor, the doctor should have immediately ordered a blood test to detect and measure the CA 125 protein marker. This is a standard diagnostic test for ovarian cancer which detects a biomarker present in higher elevations in tumor cells.
Please note that the CA 125 test is not a perfect diagnostic tool. False positives and negatives have been known to happen. If your mom gets a positive, unless it is extremely high, they will most likely confirm by running the test again. But I firmly believe it's important to have the test done. Oncologists treating two of my friends with ovarian cancer use it on a regular basis to determine whether their chemotherapy regimens are working. It was also instrumental in determining their initial diagnoses.
As I said, I'm not a doctor. But if hers did not order the CA125 test, you can and should ask why.
Normal range for CA 125 is between 0 and 35. Slight elevations above 35 may require monitoring or further diagnostic testing. Greater elevations (70+) may indicate something is wrong. The higher the number, the more likely there is a problem.
My understanding is that CT (and depending on the type and position of a mass, possibly an MRI) scans are now becoming common when an ovarian cyst or a mass has been found. When the results of an ultrasound or x-ray are inconclusive, then a doctor may turn to a scan technique that provides higher resolution and a more comprehensive way to see the entire abdomen. A CT or MRI is typically the best way to determine what's going on other than surgery. This is normal, and not an indication that she has cancer. If I were you, I would consider the test a precautionary measure until you have an alternate diagnosis.
Good luck to you all. I know it's impossible not to worry, so I won't urge you to.... butI hope that this is nothing and she's going to be just fine.
posted by zarq at 9:26 AM on January 7, 2010 [3 favorites]
You just have to keep reminding yourself that you know NOTHING at this stage. This is no time to jump to conclusions. It is totally normal that you are scared but assuming the worst is just going to make you crazy. Do your best to relax... go to yoga... take a lorazepan...go for a long walk.
Once you know something about what's going on with her (and it could be nothing at all! remember that!) then you can better work on how to handle it. But right now you're jumping to conclusions.
As said above, the doctors are being careful. That's great.
posted by miss tea at 9:26 AM on January 7, 2010
Once you know something about what's going on with her (and it could be nothing at all! remember that!) then you can better work on how to handle it. But right now you're jumping to conclusions.
As said above, the doctors are being careful. That's great.
posted by miss tea at 9:26 AM on January 7, 2010
I know it's a very scary time, and it's human nature to assume the worst. But hang in there and don't panic. My best friend (age 49) went through a similar situation this past summer. During a gyno exam, doctor found what he called a "mass" on one of her ovaries. He ordered a CT first; when he couldn't for sure determine what was there from that he did a trans-vaginal ultrasound. In the end it turned out to be a cyst partially surrounded by some scar tissue. Right now he's going to leave it there and just check again in six months to see if it grows, but if it doesn't (and doesn't cause her any pain or other symptoms) he likely won't remove it.
Best of luck to your mom!!
posted by Oriole Adams at 10:11 AM on January 7, 2010
Best of luck to your mom!!
posted by Oriole Adams at 10:11 AM on January 7, 2010
Some of the details of your mom's situation sound a bit off and I wonder if maybe there was a miscommunication along the way that might warrant another visit to the doctor just to get more clarity about things. Beyond that, I can only echo what others have said: while your concern for your mother is obviously well-intentioned, this anxiety is rather premature.
To give you some perspective, perhaps you might be reassured to know some random data about ovarian cysts. In one study1, unilocular cysts were benign in 99.7% of cases and and multilocular cysts were benign in 92% of cases. Moreover, even if a cyst were to be malignant, that doesn't preclude the possibility that surgical resection might be entirely curative, particularly if this was caught early.
posted by drpynchon at 10:33 AM on January 7, 2010
To give you some perspective, perhaps you might be reassured to know some random data about ovarian cysts. In one study1, unilocular cysts were benign in 99.7% of cases and and multilocular cysts were benign in 92% of cases. Moreover, even if a cyst were to be malignant, that doesn't preclude the possibility that surgical resection might be entirely curative, particularly if this was caught early.
posted by drpynchon at 10:33 AM on January 7, 2010
My aunt once had an ovarian cyst that was -- according to my grandmother -- the size of a grapefruit. It was non-cancerous.
posted by the littlest brussels sprout at 10:44 AM on January 7, 2010
posted by the littlest brussels sprout at 10:44 AM on January 7, 2010
My 40-ish wife had a "mango sized" (why are cysts always described in terms of fruit?) cyst and some "plum sized" fibroids on her ovary and uterus. They took the whole ovary to be sure, so now she leans slightly. I am not allowed to call her Starbuck, or to hum the Colonel Bogey March. Happily everything was benign, which is the most usual result and the one I hope for your mom as well.
posted by Iteki at 11:13 AM on January 7, 2010
posted by Iteki at 11:13 AM on January 7, 2010
CT scans are ordered for reasons other than suspected cancer - they are a non-invasive way for a physician to get a better picture of what is going on inside the body. I had a CT scan for a mass on my kidney, which turned out to be a fetal lobulation (totally benign). My doctor didn't think it was cancer from the start, but it was unusual so he wanted a better look at it.
As Sidhedevil mentioned, don't assume diagnosis or prognosis at this point. It could just be a cyst. If it is cancer, treatment is very advanced now, and she will have options. I know it's very difficult not to immediately jump to the worst-case scenario in your mind, but when you don't even have a diagnosis yet, I've found it's usually best to try not to do that and wait until the diagnosis is given.
As another personal anecdote, my father was diagnosed with Stage IV colon cancer a year ago and after he was given a very poor prognosis, responded incredibly well to chemotherapy and is now thriving.
posted by bedhead at 11:17 AM on January 7, 2010
As Sidhedevil mentioned, don't assume diagnosis or prognosis at this point. It could just be a cyst. If it is cancer, treatment is very advanced now, and she will have options. I know it's very difficult not to immediately jump to the worst-case scenario in your mind, but when you don't even have a diagnosis yet, I've found it's usually best to try not to do that and wait until the diagnosis is given.
As another personal anecdote, my father was diagnosed with Stage IV colon cancer a year ago and after he was given a very poor prognosis, responded incredibly well to chemotherapy and is now thriving.
posted by bedhead at 11:17 AM on January 7, 2010
My mom is a breast cancer survivor and recently had a recurrence which resulted in a mastectomy. After that procedure they ran a CT scan and then a PET scan which showed activity in the ovaries where they removed another tumor. Since your mom has no history of cancer or other indicators I'm guessing that's why they didn't recommend a PET scan which I would take as a good sign. BTW my mom is doing great now. Good luck to your mom!
posted by white_devil at 11:32 AM on January 7, 2010
posted by white_devil at 11:32 AM on January 7, 2010
(why are cysts always described in terms of fruit?)
Fetuses, masses and internal growths are typically compared in size to fruits and vegetables because we find them easy to visualize.
posted by zarq at 12:00 PM on January 7, 2010
Fetuses, masses and internal growths are typically compared in size to fruits and vegetables because we find them easy to visualize.
posted by zarq at 12:00 PM on January 7, 2010
Response by poster: I know that my anxiety seems fairly overblown but I thank you all for your support - I think the fact that its been so long since my mom has been to a doc + the gyno she saw being fairly brusque (she told my mom, apparently, that it could just be a cyst or it could be early stage cancer. How she figured this out from an ultrasound I'm not sure) = some confusion and a lot of worry on my part. My mother's command of English isn't so great and I think she was just too frightened to ask the gyno any further questions when the word cancer came up and she was brushed off so easily. The sequence of events and follow-up tests seems abnormal to me and thus the freaking out.
Anyways, I just wanted to say: I've learned a lot of things on Metafilter - how to deal with crushes and broken hearts, how to snake a drain, how to stretch out my shoulder, and now, how to feel supported from people I've never met before. Thanks, everyone.
posted by Eudaimonia at 2:00 PM on January 7, 2010
Anyways, I just wanted to say: I've learned a lot of things on Metafilter - how to deal with crushes and broken hearts, how to snake a drain, how to stretch out my shoulder, and now, how to feel supported from people I've never met before. Thanks, everyone.
posted by Eudaimonia at 2:00 PM on January 7, 2010
This thread is closed to new comments.
Even if it is cancerous, treatments these days are pretty successful - I was really impressed when I recently helped a close friend through a mastectomy, chemo, etc. for breast cancer; a year later, I kid you not, she took a six-week hike through spain. Seven years later and she's still tiptop.
posted by Billegible at 8:33 AM on January 7, 2010