those who follow ovarian cancer news..

[SparklyUnicorn]

There have been some articles floating around lately.  Talk about useless.  My mother died from ovarian cancer.  The evening news teased about "breakthroughs".  There are no breakthroughs.  Basically it was just determined that ovarian cancer is not just one disease and research into the disease is severely lacking.  Nothing new there. 

 

Not helpful.

 

If you have a family history, are you doing any extra testing?  I was offered some testing options, but the false positives are so high I decided against it. 

[texasmama]

I am supporting a young lady with ovarian cancer right now.  She is 19 with a type of germ cell cancer and lymph node involvement.  Because of her, I have had to learn a lot about ovarian cancer and had no idea that there were so many types or that some of them (like the one she has) have a very high cure rate.  

 

I don't have anything terribly helpful to say, but I wanted to respond.

[goldberry]

This will sound totally stupid, but I thought for years that pap tests screened for ovarian cancer.  I had no idea that had nothing to do with it.  I always thought, oh I'm safe because I get my pap tests.

[Halftime Hope]

So, from your experience, what is a good resource for self-educating?  I'm glad to hear that some kinds of ovarian cancer are very curable, because I thought based on all the "they say..." out there, that ovarian cancer was pretty much a death sentence.

 

Hugs, Sparkly and Tex!  Thank you for sharing.

[Spryte]

I'm glad to hear that some types have a high cure rate.

 

Sparkly, what are the screening tests they offered you?

Edited March 3, 2016 by Spryte

[texasmama]

The type that young women tend to get (germ cell cancers) has an 87% five year survival rate even at stage 3C with lymph node involvement, as is the case with the young lady I know.

 

When I heard she had ovarian cancer, I thought of Gilda Radner and mentally was attending her funeral.  This is not at all the case, though.  I think the general public doesn't really know about these types because they are rarer, 5% or so of all ovarian cancers.  

 

I was present at the initial oncology appointment, and the doctor said that this is not necessarily a genetic cancer.  Grandma and both great-grandmas have had breast cancer - on the maternal side, around the age of 50, which speaks to a BRCA gene involvement (potentially) and the doc wanted grandma tested for those genes.  This family has two other older daughters, and no testing was recommended for them at this point.

[VaKim]

Mine was not genetic as far as I know. Nobody else in the family had ever been diagnosed with it anyway. Mine was found when the doctor thought I might have appendicitis and ordered a CT scan. It turned out to be cancer, but at borderline stage. My doctor removed everything in there, including my appendix and I didn't need any further treatment. It has been 4 years. All this to say that, no, it is not necessarily a death sentence (though I thought so when I first heard the diagnosis). Not sure what kind of testing would even show such a thing, unless you had regular scans, which is not healthy either and can even cause cancer. 

[historically accurate]

The type that young women tend to get (germ cell cancers) has an 87% five year survival rate even at stage 3C with lymph node involvement, as is the case with the young lady I know.

 

When I heard she had ovarian cancer, I thought of Gilda Radner and mentally was attending her funeral.  This is not at all the case, though.  I think the general public doesn't really know about these types because they are rarer, 5% or so of all ovarian cancers.  

 

I was present at the initial oncology appointment, and the doctor said that this is not necessarily a genetic cancer.  Grandma and both great-grandmas have had breast cancer - on the maternal side, around the age of 50, which speaks to a BRCA gene involvement (potentially) and the doc wanted grandma tested for those genes.  This family has two other older daughters, and no testing was recommended for them at this point.

If Grandma does test positive for BRCA, it's not extremely expensive to test further members of the family. Once the gene is known, they can test for just that mutation. 

 

I'm BRCA 1+, and it cost my mom either $300 or $500 to get tested for my gene mutation (although insurance paid since I was undergoing treatment). My panel was something like $3000 because they tested for all the mutations.

 

 

[SparklyUnicorn]

This will sound totally stupid, but I thought for years that pap tests screened for ovarian cancer.  I had no idea that had nothing to do with it.  I always thought, oh I'm safe because I get my pap tests.

 

No.  In fact my mother never skipped her paps.  It was not discovered until it was too late.  The doctor could feel the tumors at that point. 

[SparklyUnicorn]

So, from your experience, what is a good resource for self-educating?  I'm glad to hear that some kinds of ovarian cancer are very curable, because I thought based on all the "they say..." out there, that ovarian cancer was pretty much a death sentence.

 

Hugs, Sparkly and Tex!  Thank you for sharing.

 

Some are curable, but some basically are not.  The chances of living for 5 years with some types is less than 50%. 

[SparklyUnicorn]

Mine was not genetic as far as I know. Nobody else in the family had ever been diagnosed with it anyway. Mine was found when the doctor thought I might have appendicitis and ordered a CT scan. It turned out to be cancer, but at borderline stage. My doctor removed everything in there, including my appendix and I didn't need any further treatment. It has been 4 years. All this to say that, no, it is not necessarily a death sentence (though I thought so when I first heard the diagnosis). Not sure what kind of testing would even show such a thing, unless you had regular scans, which is not healthy either and can even cause cancer. 

 

So glad to read this. 

 

Nobody else in my family has had it either.  I read that while there is an increased chance with a family member having it, there is no known cause and no gene that has been isolated as a cause. 

[SparklyUnicorn]

I'm glad to hear that some types have a high cure rate.

 

Sparkly, what are the screening tests they offered you?

 

They can do the types of blood tests they do on those with cancer to check t-cell counts.  This is not very useful though because there is a high rate of false positives.

 

I've had some periodic ultrasounds.  I just don't know if they can see much on an ultrasound though.  And I think that once they see something it's quite serious. 

 

One doctor suggested having my ovaries removed when I turned 40.  I'm 41 now.  I have no intentions of doing this.  For one thing it likely would not help.  The type my mother had was cancer that would have grown in that area irregardless of whether or not her ovaries were there.  Also, I have to wonder if in fact the cancer originated in her ovaries or was just related to her ovaries.  Her official cause of death was actually COPD.  She had issues with her lungs long before that.  She also had a laundry list of health conditions.  I have had none of those conditions.  My sister, younger than me, does though. 

 

I guess I do not see the point.  There is a program at UCONN where you can have them do every test known to man.  All kinds of scans, etc.  But no thank you.  I don't want to go through all of that.  I don't think the risk is high enough. 

 

But yes I do perk up when I hear these news stories.  It would be good if they could come up with some sort of test. 

[SparklyUnicorn]

My mother was part of the studies they have done.  She had several interviews asking her every question known to man.  They hint at a few ideas, but they really don't seem all that convincing to me.  Stuff like supposedly your chances are lower if you took birth control and had a tubal. My mother had both.  The rate is lower with fewer kids.  She only had 2.  There have been some hints that talc might be a culprit.  Interestingly my mother used talc down there like it was going out of style.  (maybe TMI...LOL).  Except with that there is no evidence that talc can make it's way up there and reach the ovaries.  And then I have to wonder why my mother used it so much.  Like maybe there was some symptom that compelled her to use it (like to mask an odor).  I've never used powder down there.  Seems like a very odd thing to do.

 

 

[VaKim]

My mother was part of the studies they have done.  She had several interviews asking her every question known to man.  They hint at a few ideas, but they really don't seem all that convincing to me.  Stuff like supposedly your chances are lower if you took birth control and had a tubal. My mother had both.  The rate is lower with fewer kids.  She only had 2.  There have been some hints that talc might be a culprit.  Interestingly my mother used talc down there like it was going out of style.  (maybe TMI...LOL).  Except with that there is no evidence that talc can make it's way up there and reach the ovaries.  And then I have to wonder why my mother used it so much.  Like maybe there was some symptom that compelled her to use it (like to mask an odor).  I've never used powder down there.  Seems like a very odd thing to do.

Yeah, I just saw something the other day about someone winning a lawsuit against a powder company due to getting ovarian cancer.

I never used powder down there at all. I was on birth control pills for years when I was younger. I only had 2 kids, but 4 pregnancies. I did use tampons for years and often wonder if there could be a link there. 

 

Btw, my tumor was the size of an orange, so it did show with the followup ultrasound (the gyn required it after the CT scan). I also had that blood test that they do for cancer (my gyn was nearly positive it wasn't cancer), and the number was around 4000 (normal range is 1-30, I think). My oncologist said he had never seen that high of a result turn out to be borderline stage. So you just never know.

[SparklyUnicorn]

Yeah, I just saw something the other day about someone winning a lawsuit against a powder company due to getting ovarian cancer.

I never used powder down there at all. I was on birth control pills for years when I was younger. I only had 2 kids, but 4 pregnancies. I did use tampons for years and often wonder if there could be a link there. 

 

Btw, my tumor was the size of an orange, so it did show with the followup ultrasound (the gyn required it after the CT scan). I also had that blood test that they do for cancer (my gyn was nearly positive it wasn't cancer), and the number was around 4000 (normal range is 1-30, I think). My oncologist said he had never seen that high of a result turn out to be borderline stage. So you just never know.

 

My mother did have symptoms, but she thought it was in her head.  Of course now it seems so obvious, but the symptoms aren't exactly so strange they couldn't be attributed to something else.  She had very bad lower back pain and a lot of bloating.  I mean bloating that was so crazy her stomach swelled like she was pregnant.  But she also had diabetes so that could happen with diabetes too.

Edited March 3, 2016 by SparklyUnicorn

[VaKim]

My mother did have symptoms, but she thought it was in her head.  Of course now it seems so obvious, but the symptoms aren't exactly so strange they couldn't be attributed to something else.  She has very bad lower back pain and a lot of bloating.  I mean bloating that was so crazy her stomach swelled like she was pregnant.  But she also had diabetes so that could happen with diabetes too.

I have heard that about diabetes (my aunt and fil have it). 

 

I didn't really have any typical symptoms. The reason I went to the doctor was because suddenly, every time I would eat, even the tiniest amount (like a Hershey kiss) I would feel stuffed. Maybe that was bloating? But it didn't show outwardly at all. Not sure why the doc thought it was my appendix, but glad he insisted on the scan to check it out! He practically had to beg me to get it because we had no insurance and I was afraid I couldn't afford it.

 

I had always had horrible, painful, gross periods though, from the time I first started. Not sure that had anything to do with it.  

[SharonM]

There have been some articles floating around lately.  Talk about useless.  My mother died from ovarian cancer.  The evening news teased about "breakthroughs".  There are no breakthroughs.  Basically it was just determined that ovarian cancer is not just one disease and research into the disease is severely lacking.  Nothing new there. 

 

Not helpful.

 

If you have a family history, are you doing any extra testing?  I was offered some testing options, but the false positives are so high I decided against it.

have a strong family history for ovarian and uterine cancers. Basically the only women who live past 50 are the ones who had everything removed. So I did. Best thing I ever did. Couldn't afford testing got rid of the cause. Now I worry about books.

[SparklyUnicorn]

have a strong family history for ovarian and uterine cancers. Basically the only women who live past 50 are the ones who had everything removed. So I did. Best thing I ever did. Couldn't afford testing got rid of the cause. Now I worry about books.

 

Years ago my aunt had a friend who did something like this.  Every woman in her family had breast cancer so she had her breasts removed.  I wonder how she made out.  Nice lady, but yes that was hard to have to go to those extremes to try to avoid it.

 

There isn't any sort of history of any of this in my family.  It really seems like a fluke or caused by something that just isn't the type of thing that gets passed down. 

[Ausmumof3]

I heard a radio interview with a lady who is heavily involved in raising awareness for ovarian cancer. She identified the issues you basically raised. - that there is no reliable testing that doesn't yield a high rate of false positives. Also most of the symptoms are similar to symptoms lots of people experience in the time of life when the cancer is common anyway. Her main advice was to be aware of any changes in your body and if they don't resolve within a short time (weeks) go and get things looked into.

[texasmama]

The young lady with stage 3 ovarian cancer had a clean CT scan and blood work (don't know what type) that gave no indication of her illness. It was caught when the tumor grew to softball size and caused her pain and UTIs. She then had a sonogram.

[SparklyUnicorn]

The young lady with stage 3 ovarian cancer had a clean CT scan and blood work (don't know what type) that gave no indication of her illness. It was caught when the tumor grew to softball size and caused her pain and UTIs. She then had a sonogram.

 

Yeah that's why I don't even see the point of the ultrasounds.  They won't see it until it is big.  I used to do them and I'd be freaked out.  Then I'd be worried waiting for results.  Half the time they didn't even call me back or I'd go to a follow up and they'd wonder why I was there.  They didn't seem to get that I was worried about this.  It was very insensitive.  And then if they are not really all that helpful why put myself through that?   I stopped doing them. 

[VaKim]

The young lady with stage 3 ovarian cancer had a clean CT scan and blood work (don't know what type) that gave no indication of her illness. It was caught when the tumor grew to softball size and caused her pain and UTIs. She then had a sonogram.

That was about the size of mine. Apparently, size has nothing to do with stage either. No consistency.

[SparklyUnicorn]

That was about the size of mine. Apparently, size has nothing to do with stage either. No consistency.

 

My mother's were not huge, but there were many of them. 

[Liz CA]

1. Have you established a baseline CA 125 level?

2. There are ovarian cancers that thrive on hormonal imbalance. Make sure your estrogen and progesterone are in balance. Do saliva tests versus blood tests.

3. Eat healthy - I know many people don't believe it makes much of a difference but why take the risk when it's something so easily done?

 

Do some research on preventative substances - many are still in the research stages but things like increased ginger root consumption and fermented vegetables cannot hurt even it it turns out it does not play as big a factor as hoped for.

If you are so anxious about it that it drives you crazy and you have all the children you are going to have, you could have an oophorectomy which is just removal of ovaries - however it would plunge you into menopause. This can be counteracted with estrogen and prog supplementation but depending on how young you are may be too much too soon.

Edited March 4, 2016 by Liz CA

[Liz CA]

My mother's were not huge, but there were many of them. 

 

Size has nothing to do with stage or grade of aggressiveness. Spread usually increases the staging to a higher number. Including spread to lymph nodes.

[texasmama]

Size has nothing to do with stage or grade of aggressiveness. Spread usually increases the staging to a higher number. Including spread to lymph nodes.

Yes.  My young friend was considered stage 1C until she had a positive lymph node biopsy, which put her at stage 3C.  I fully believe she will have a complete recovery, and the doctor is attempting to preserve her fertility, as she has one remaining ovary.

[Laurie4b]

My mother was part of the studies they have done.  She had several interviews asking her every question known to man.  They hint at a few ideas, but they really don't seem all that convincing to me.  Stuff like supposedly your chances are lower if you took birth control and had a tubal. My mother had both.  The rate is lower with fewer kids.  She only had 2.  There have been some hints that talc might be a culprit.  Interestingly my mother used talc down there like it was going out of style.  (maybe TMI...LOL).  Except with that there is no evidence that talc can make it's way up there and reach the ovaries.  And then I have to wonder why my mother used it so much.  Like maybe there was some symptom that compelled her to use it (like to mask an odor).  I've never used powder down there.  Seems like a very odd thing to do.

 

It was routine personal hygiene for a certain generation. 

[itsheresomewhere]

My mother was part of the studies they have done. She had several interviews asking her every question known to man. They hint at a few ideas, but they really don't seem all that convincing to me. Stuff like supposedly your chances are lower if you took birth control and had a tubal. My mother had both. The rate is lower with fewer kids. She only had 2. There have been some hints that talc might be a culprit. Interestingly my mother used talc down there like it was going out of style. (maybe TMI...LOL). Except with that there is no evidence that talc can make it's way up there and reach the ovaries. And then I have to wonder why my mother used it so much. Like maybe there was some symptom that compelled her to use it (like to mask an odor). I've never used powder down there. Seems like a very odd thing to do.

The UK has been checking the talc connection since 1971. I know they were finding it in some tumors. The research on it is fascinating.

[NoPlaceLikeHome]

Yeah that's why I don't even see the point of the ultrasounds.  They won't see it until it is big.  I used to do them and I'd be freaked out.  Then I'd be worried waiting for results.  Half the time they didn't even call me back or I'd go to a follow up and they'd wonder why I was there.  They didn't seem to get that I was worried about this.  It was very insensitive.  And then if they are not really all that helpful why put myself through that?   I stopped doing them. 

But is that true? I thought that transvaginal ultrasounds could pick up on it early since they do visualize the ovaries or am I wrong?

[mom2att]

My mom lived with ovarian cancer for 7 years. She died in 2014. She did have the genetic screening because she had already had breast cancer 20 years earlier, and her sister died from breast cancer. She was BRCA-2 positive. So my sisters and I were tested. They both have the gene mutation, I do not. They have both had a mastectomy and an oophorectomy. My mom's breast cancer was diagnosed at age 50, and my aunt died at about age 50. My sisters were around that age when they found they had the gene mutation, so they weren't taking any chances.

 

Yes I did read several articles about the recent "research," which didn't say much of anything at all. I do have to say that finding out I did not carry the gene mutation was like winning the lottery. It was worth the few hundred dollars to do the test.

 

 

[texasmama]

But is that true? I thought that transvaginal ultrasounds could pick up on it early since they do visualize the ovaries or am I wrong?

These can pick up masses/tumors, but these must be removed in order to test them for cancer.  Uterine masses are not biopsied through the abdomen, according to the oncologist, because they do not want to drag a needle with cancer cells throughout the abdomen if it does turn out to be malignant.  Many women have ovarian cysts/masses/tumors, and most of them aren't cancerous.  I am not an expert in this area, but I would imagine that it would be similar to the false positives of mammograms in which women undergo medical procedures and emotional stress and most of the time, nothing serious is found.

[Reefgazer]

This was me; I had a mass on my ovary that kept changing, so they took it out through an abdominal incision (the ovary was pulled out through an enclosed "baggie" so as not to seed the abdomen with cancer cells if it was positive).  It was negative, but you're right about it putting you through the wringer - I was reading and researching and preparing for the worst.  Mine was located near a blood vessel, which made it difficult to biopsy and easier to just remove.

These can pick up masses/tumors, but these must be removed in order to test them for cancer.  Uterine masses are not biopsied through the abdomen, according to the oncologist, because they do not want to drag a needle with cancer cells throughout the abdomen if it does turn out to be malignant.  Many women have ovarian cysts/masses/tumors, and most of them aren't cancerous.  I am not an expert in this area, but I would imagine that it would be similar to the false positives of mammograms in which women undergo medical procedures and emotional stress and most of the time, nothing serious is found.

 

[SparklyUnicorn]

Size has nothing to do with stage or grade of aggressiveness. Spread usually increases the staging to a higher number. Including spread to lymph nodes.

 

Oh yeah I know. Just saying that probably not until the point it was bad and spread they may not have seen it on an ultrasound. 

 

She had so many they could feel them during the pelvic exam. 

[texasmama]

The oncologist told the young lady I know that her tumor had been growing for about ten years.  She is only 19.  It took that long to get to the point that it caused enough discomfort to be discovered.  Even then, it was a family doc ordering an ultrasound that did it.  This young lady had never been to a gynecologist prior to this.  She is quite slim yet did not feel it through her abdomen even though it was large.  Her primary symptom, before the pain right before it was discovered, was frequent urination.  She had been getting up multiple times every night.  She and her mom thought she had a UTI.  When that was negative at a family doctor appointment, she was sent for an ultrasound.

[SparklyUnicorn]

1. Have you established a baseline CA 125 level?

2. There are some that thrive on hormonal imbalance. Make sure your estrogen and progesterone are in balance. Do saliva tests versus blood tests.

3. Eat healthy - I know many people don't believe it makes much of a difference but why take the risk when it's something so easily done?

 

Do some research on preventative substances - many are still in the research stages but things like increased ginger root consumption and fermented vegetables cannot hurt even it it turns out it does not play as big a factor as hoped for.

If you are so anxious about it that it drives you crazy and you have all the children you are going to have, you could have an oophorectomy which is just removal of ovaries - however it would plunge you into menopause. This can be counteracted with estrogen and prog supplementation but depending on how young you are may be too much too soon.

 

I'm really not worried about it.  I see no point in worrying. 

 

See I don't want to take hormones.  My mother took hormones.  How do I know that couldn't be part of it?  KWIM?  No thank you.  Plus I've taken birth control and cannot tolerate the hormones.  Makes me very sick to my stomach.  I don't want surgery for that.  I still think my risk is low enough where I'm willing to take my chances. 

 

I actually do eat stuff like fermented vegetables.  My health overall is a lot better than my mothers.  Her health was very poor in general. 

[SparklyUnicorn]

The oncologist told the young lady I know that her tumor had been growing for about ten years.  She is only 19.  It took that long to get to the point that it caused enough discomfort to be discovered.  Even then, it was a family doc ordering an ultrasound that did it.  This young lady had never been to a gynecologist prior to this.  She is quite slim yet did not feel it through her abdomen even though it was large.  Her primary symptom, before the pain right before it was discovered, was frequent urination.  She had been getting up multiple times every night.  She and her mom thought she had a UTI.  When that was negative at a family doctor appointment, she was sent for an ultrasound.

 

Yeah this sounds like a very different type than what my mother had.  My mother's was fast growing and very aggressive.  She had a lot of symptoms, but she figured it was in her head.  Plus with her health as bad as it was, it was hard to know if it was something new or just her health in general.

[texasmama]

Yeah this sounds like a very different type than what my mother had.  My mother's was fast growing and very aggressive.  She had a lot of symptoms, but she figured it was in her head.  Plus with her health as bad as it was, it was hard to know if it was something new or just her health in general.

Yes, your mother probably had an epithelial cancer.  Young people tend to get germ cell tumors.  Before this was made personal in my life, I had no idea that young ladies got ovarian cancer or that there were so many types.  

 

And, because I have not said it yet,  :grouphug: for losing your mother to cancer.

[SparklyUnicorn]

Yes, your mother probably had an epithelial cancer.  Young people tend to get germ cell tumors.  Before this was made personal in my life, I had no idea that young ladies got ovarian cancer or that there were so many types.  

 

And, because I have not said it yet,  :grouphug: for losing your mother to cancer.

 

It's not raw.  She died about 13 years ago.  If I'm sad at all at this point it's mostly about the fact my older kid doesn't remember her at all.  He remembered her for a few years when he was little and would talk about her, but no not now.  I suppose that's better for him.

[texasmama]

It's not raw.  She died about 13 years ago.  If I'm sad at all at this point it's mostly about the fact my older kid doesn't remember her at all.  He remembered her for a few years when he was little and would talk about her, but no not now.  I suppose that's better for him.

My mom died almost 10 years ago so I understand that well.  My kids missed out.