I have loved following your Substack and journey and followed up on many of your wonderful book recommendations! I lived in Paris eons ago for a few years and still miss it (though glad to be Stateside during these heat waves). There's so much about your writing I have appreciated! But let me simply say I hope you will send that doctor in London the letter he deserves. I am furious on your behalf. I started a letter this summer to a doctor who missed a serious cancer for three years, making its 'cure' impossibly difficult. I understand that anger, and it seems many here do, too. I am determined to let her know how much harm her negligence did. ❤️🩹
Thank you, Elline! I appreciate your words. And your presence here. I think I will write to that medical practice. I am sorry about your own medical disaster and glad you are letting the doctor know how much harm they did. I hope you are healthier now? xoxo
You are hilarious and lovely. "But maybe the stuck emotions are joy and Zenlike calm! In which case, I want them." Alternative care people love talking about blockages. This fellow would do well to read your posts here. Still, how great that soins palliatifs is showing up in these ways! Maybe they can send a real acupuncturist next time. And that effing London doctor. For god's sake, really? (Maybe the stuck emotions also include rage at that nitwit). We readers, and your family and friends, see and hear your emotions, and we know that we are all selective in how and when we express them ourselves. And a 13 km hike? And such an in-touch, with-it kid to boot? It's crazy how so many things are true at once: love, rage, pain, illness, joy, and plums.
Thank you, Charles! I appreciate your comments. And I am glad that the palliative care people are looking after me. I think I will write to the London doctor... I hope all is well with you!
I am so glad you are getting the blood test done. It's such an easy way to screen. May you never have elevated tumor markers! I hope you have fully recovered from your breast cancer. And thank you again for reading Liminal and your presence here in the comments. I am always so happy to hear from you. I admire you greatly. xoxo
That you are recommending books to us, so generous it makes me want to cry which is a bit of a relief, but not much, from the rage I feel at your diagnosis and it's unnecessary lateness. You are extraordinary, a plum fairy among us, I'm glad I stumbled across your magic.
I’ve been listening to the audio book of Atmosphere for a few months. My attention span is minute these days, and I’m working on so many projects at once, that I forget to get back to it. I am, however, loving every minute of it, not just because I studied astrophysics in Rome and almost went in that direction, but because these outstanding female characters are fighting the patriarchy every step of the way, and because the writing is fluid, and some is so brilliant that I have to go back and listen to a particular sentence several times to let it fully permeate and inspire.
As to your rage, you’re certainly entitled above all. Women’s symptoms are so blatantly overlooked and chalked up to hysteria the world over, even by female doctors. It’s maddening. That being said, my father also got a very delayed diagnosis for his cancer, despite consistently requesting he be scanned for it. I think that every aspect of the medical systems in most countries has much tweaking to do. Why something so necessary, has to be so unnecessarily complicated, so political, and so archaic, is beyond. This is why concierge medicine is taking over. Unfortunately, only the über rich can afford it, so we’re back to square one for most.
Lastly, I just want to add that you are so very brave, and that your emotional states transformed into your writing, convey as much. I hope the very ritual of it soothes the soul as much as possible.
Thank you! I am so glad you are enjoying Atmosphere. I too love the female characters and their passion for science. I don't feel very brave most of the time. I am just fumbling my way through the best way I know how. As we all do. Thank you for being here! xo
Jennifer, thank you for sharing this information about the blood test and symptoms. I'm angry for you. But grateful you are still here and blessing us with your stories.
Jennifer, have you approached or considered approaching the Guardian, BBC, or others with this story? They've run a number of news stories lately (tho never enough!) re: doctors dismissing symptoms or not following up enough especially re: prostate and bowel cancer, and also cancers in young people. The point of said news stories being to raise awareness among people – as you have don here re: the blood test – as well as raising awareness among doctors and nurses. I was misdiagnosed when I was about 30, a doctor who said a mole on my calf could be removed for cosmetic purposes, but didn't merit a biopsy. I was preparing to be interviewed for a job teaching English in Korea, with my then-fiance. But then there came a series of kinda wild coincidences and serendipity - via other artists, writers, bookstores, and magazines! – most notably, my then-fiance's mom was a paralegal working on a case for a family with a young woman of 21 dying of melanoma (a mole on her back) because she had been misdiagnosed. I went straight back to get my mole checked again just weeks later, and fortunately, this time, three doctors looked at it and immediately had it biopsied. It was stage 2 malignant melanoma. Now there is much more awareness of skin cancer, but the doctor I first saw said I was 'a worrier.' Your story is so important! On a completely different note, I'm reading The Ambassador's Wife! Sending hugs and good wishes.
America, that's a good idea. I did write one essay about screening and ovarian cancer, which was published in the Kenyon Review. But it's paywalled. Would love to write something for a newspaper. I will try to get to that. I certainly have a lot of material! I am so glad you had your mole re-examined. Patients really must be assertive with their doctors, no matter how annoyed they get. We know our bodies. We know when something is wrong. And I'm thrilled you're reading The Ambassador's Wife! xo
Jennifer, not to litter your inbox with comments, but just want to say I'm so glad that you've had the essay in the Kenyon Review! It was actually a literary magazine that put me on the road to seeing a doctor: I was living in Denver but went up to Boulder for a day, and went into Boulder Bookstore to find a copy of Glimmer Train, as I wanted to submit a story there. I opened the cover, and saw that the issue was dedicated to a friend of the editors, and he'd died at 36 of melanoma. It said: "If you have a mole that looks strange, don't wait: Get it checked." I had no idea how dangerous skin cancer could be, or a mole. The coincidences and serendipity went on from there. As for your story, I do think it would be so good for it to be in BBC, Guardian, etc., but it was a lit mag – like Kenyon Review – that quite literally maybe saved me.
Absolutely true re prostate and other cancers (as a prostate cancer survivor myself, so far). Not to mention other illnesses or conditions. I've had to advocate for myself numerous times for tests - and have provided doctors with information of which they were not aware, or discounted - and much of it is because docs can be overwhelmed with information and are just not up to date on it. In fact, if you know your body, and you know how to wield the internet, the much discounted "Dr. Google" (or now, Dr. Claude or Dr. ChatGPT) frankly can diagnose and propose treatments better than one's own doctor. (My experience, anyway). It's so important, at this stage in the availability of information, to advocate for oneself if at all possible ... even when we are feeling sick and incapable, and wishing that the effing doctor could just take care of us.
Yes. It's tempting to just passively accept what every doctor says, because it's exhausting to be alert all the time and to advocate for oneself. But as you said we know our own bodies better than anyone. Glad you have survived your cancer!
It IS a tragedy that women aren’t diagnosed earlier. No, more than that, it’s a crime. I was diagnosed thanks to a series of random happenings. First, I had a pain; many women don’t. Then, I uncharacteristically went to the doctor; THEN, in the lottery of HMO urgent care, I drew an older doctor, a woman, who listened with curiosity and didn’t just send me home with a Tylenol.
The surgeon I drew at this HMO was highly skilled. He saved my life. But I loathed him and I’m pretty sure he loathed me.
I’ve forgotten the details of our CA-125 conversation (mine, when they finally took one, was 880). But I remember his telling me that they don’t do the test because it only uncovers cancer 30% of the time. The rest of the time, it indicates other problems in the body cavity, and expensive testing is needed in order to reveal what’s what.
I remember saying, “So we 30% are expendable?” I stared at him until he finally said “yes.”
Can it possibly be true, this memory?
If not entirely, then close to true.
This cancer in its symptoms sounds like old-fashioned female trouble. Bloating, fatigue, frequent urination: all sound like the old indications of weakness, lassitude, hysteria—difficulties we are used to concealing because we fear they will make us seem weak.
About that I can speak only for myself; I’m sure many women, most women, are better at reading their own bodies than I was.
But I do wonder now: how many doctors who pooh-poohed the concerns of their patients, how many who said “There, there, dear” and sent those women home, how many of those doctors have blood on their hands?
I would love to send you some photos of an art-and-storytelling experience I designed along with an artist friend in L.A. We applied the ancient art of mask-making to the problem of living with fear.
I am so glad that you were lucky with your treatment! And that you got an effective surgeon even if he was loathsome as a human. I have had the same conversation you have had about screening. They tell me that sometimes other things cause elevated CA125. But I imagine it is also good to have those other things diagnosed! And yes, doctors clearly think we are expendable because they refuse to order the blood test that could save us because of the expense of scans. Frankly, every woman I have met with a high CA125 had ovarian cancer. I think 30 percent sounds pretty low. I was absolutely treated as if I were just a hysterical, hypochondriacal woman. None of these doctors are held to account, I think. I really must write a letter. Thank you for always being here. Love, Jennifer
After my mother got Stage 3 ovarian cancer with a grapefruit-sized tumor 20 years ago (and she's still alive!), my sisters and I all started getting regular C-125 tests. Then we began getting our ovaries and Fallopian tubes (me and another sister) and just tubes (youngest sister, after having two children) removed for prevention. And I'm adamant about ultrasounds etc... DEMAND YOUR RIGHTS TO HEALTH CARE, ladies!!
The weird thing about having my ovaries out is that now apparently I have no testosterone in my system. Who knew that T was made by ovaries? And we all need testosterone. I can't take estrogen (alas) because of a tiny DCIS breast cancer six years ago (hadn't spread), which means I get to enjoy all the impacts of having no estrogen (fatigue, skin laxity, the rest)... but a specialist hormonal gynecologist in Paris has started me a tiny bit of testosterone, a fraction of what a man would take, to mitigate some of the no-estrogen symptoms, interestingly. Just started so no big results yet.
On a happier note, so glad you read and loved Yara Zgheib's novel NO LIGHT TO LAND ON. I too loved it!!!
I am so glad you and your sisters are looking after yourselves and getting ovaries and fallopain tubes removed. It's such critical prevention! I am also glad (and amazed) that your mother survived and is still alive! I still owe you a birthday coffee! Hope to see you soon. xoJennifer
I will ask for that blood test. Also...I'm currently listening to the podcast--so amazing to hear your voice!!! I don't think I have actually heard you for like...idk 25 years? More? xox
Do I sound the same? So strange to think that. You're so vivid in my mind it's crazy that it's been that long since we've seen each other. Thank you for listening to the podcast. And glad you plan to be screened! If you can't come to Paris for a visit, maybe we could have a Zoom call one time? And then I could hear your voice too! xo
Jennifer, you're a hero from a family of heroes. I just need to say that "...so we kind of got him into the aisle where I just sat on him ...” is the best line I've read so far this week.
Glad you're hiking and the weather is good.
Break a leg, Theadora!
Sending much love and a cool breeze from the Jersey shore!
I'm not sure how medicine works where you developed your symptoms, but I've never heard of a physician having to pay for a diagnostic test. In some systems, the doctor might have to fight an insurance company to get an expensive test for a patient, but the CA125 test should not be one of those tests, especially with symptoms. Routine blood test, ordered without any special preparation. Usually processed at a local lab or possibly one level higher.
Oh, the physician never has to pay! But in London, where I was treated on the National Health Service, they are very concerned with the price of extra tests. The CA125 test is not expensive alone, but they worry about all the scans the already strained health service would have to provide as a result of high CA125s.
My mother was also stage three when she was finally diagnosed in California and had been complaining for years of the symptoms Jennifer describes in this post. Whatever the reason, doctors on both sides of the Atlantic do NOT think to order the tests quickly enough.
Absolutely true, Clara! Almost no doctor ever orders the test in time to save women with ovarian cancer. How is your mother? I hope she is now well. Thank you for reading Liminal and adding your voice here.
Thanks for your warm welcome Jennifer. I read The Ambassadors this summer (picked it up at an AAWE event) and I loved it! Then I found out about your illness through an AAWE communication which led me to your Substack.
Unfortunately Mom passed away in 2022 from complications brought on by the cancer. i had enough time to fly from Paris to Sacramento to be with her for two months before she died and we had lots of hugs and kisses. I imagine your daughter will have time to come to you.
Thanks for sharing your story here. It’s important to get the message out about Ovarian cancer and the experience of living with cancer.
I feel your pain very deeply, I was diagnosed with stage 2 LGSOC three years ago, i had very vague symptoms constant weight gain and also gas but nothing
Disturbing till I had very intense pain and nausea diagnosed with diverticulitis but fought for a CT scan prescription to be put in my chart and I went immediately instead of waiting for another round of useless meds. All the others in my support group were diagnosed late due to doctors waiting and sending them away without the bloodwork and I push for vaginal and abdominal ultrasound which is not expensive nor that invasive and can be a starting point. Since the low grade serous is slower growing I am stage 2 not 4. Its so maddening all the beautiful women with this disease that lives could have been saved or extended. Pushing for diagnostics and bloodwork instead of telling us to be more “aware” is the way to go!
Thank you so much for your well wishes, I felt as positive as I could (high recurrent rate on LGSOC and no good chemo) then was diagnosed with a second pretty much worse cancer a year later which no one knows why I got. I am tested every three mos, so exhausting but necessary i guess. Again I had to push to get the second cancer biopsied as my oncologist thought it was a swollen lymph node and wanted to “wait”. I called my surgeon who looked at it and scheduled a biopsy right away. Its just so scary they hold our very lives in our hands with one careless decision.
Absolutely! We must insist on screening. It's just tragic that most of us are diagnosed too late. Even if we know the symptoms, they are similar to symptoms of other illnesses and doctors often dismiss them. I am so glad you are stage 2 and not stage 3 or 4. I am crossing all of my fingers and toes that you survive it and have a long and healthy life ahead of you. Good for you for being assertive with your medical professionals!
I have loved following your Substack and journey and followed up on many of your wonderful book recommendations! I lived in Paris eons ago for a few years and still miss it (though glad to be Stateside during these heat waves). There's so much about your writing I have appreciated! But let me simply say I hope you will send that doctor in London the letter he deserves. I am furious on your behalf. I started a letter this summer to a doctor who missed a serious cancer for three years, making its 'cure' impossibly difficult. I understand that anger, and it seems many here do, too. I am determined to let her know how much harm her negligence did. ❤️🩹
Thank you, Elline! I appreciate your words. And your presence here. I think I will write to that medical practice. I am sorry about your own medical disaster and glad you are letting the doctor know how much harm they did. I hope you are healthier now? xoxo
Thank you so much! I am indeed. Hoping good days ahead for you!
You are hilarious and lovely. "But maybe the stuck emotions are joy and Zenlike calm! In which case, I want them." Alternative care people love talking about blockages. This fellow would do well to read your posts here. Still, how great that soins palliatifs is showing up in these ways! Maybe they can send a real acupuncturist next time. And that effing London doctor. For god's sake, really? (Maybe the stuck emotions also include rage at that nitwit). We readers, and your family and friends, see and hear your emotions, and we know that we are all selective in how and when we express them ourselves. And a 13 km hike? And such an in-touch, with-it kid to boot? It's crazy how so many things are true at once: love, rage, pain, illness, joy, and plums.
Thank you, Charles! I appreciate your comments. And I am glad that the palliative care people are looking after me. I think I will write to the London doctor... I hope all is well with you!
I just had the CA125 marker test for the first time, after 11 years since I was diagnosed with breast cancer. Your words are so so important.
I am so glad you are getting the blood test done. It's such an easy way to screen. May you never have elevated tumor markers! I hope you have fully recovered from your breast cancer. And thank you again for reading Liminal and your presence here in the comments. I am always so happy to hear from you. I admire you greatly. xoxo
That you are recommending books to us, so generous it makes me want to cry which is a bit of a relief, but not much, from the rage I feel at your diagnosis and it's unnecessary lateness. You are extraordinary, a plum fairy among us, I'm glad I stumbled across your magic.
Thank you, Sandra! It's a pleasure! I love talking about books. Thank you for being here, for reading. I am glad that you have stumbled in! xo
I’ve been listening to the audio book of Atmosphere for a few months. My attention span is minute these days, and I’m working on so many projects at once, that I forget to get back to it. I am, however, loving every minute of it, not just because I studied astrophysics in Rome and almost went in that direction, but because these outstanding female characters are fighting the patriarchy every step of the way, and because the writing is fluid, and some is so brilliant that I have to go back and listen to a particular sentence several times to let it fully permeate and inspire.
As to your rage, you’re certainly entitled above all. Women’s symptoms are so blatantly overlooked and chalked up to hysteria the world over, even by female doctors. It’s maddening. That being said, my father also got a very delayed diagnosis for his cancer, despite consistently requesting he be scanned for it. I think that every aspect of the medical systems in most countries has much tweaking to do. Why something so necessary, has to be so unnecessarily complicated, so political, and so archaic, is beyond. This is why concierge medicine is taking over. Unfortunately, only the über rich can afford it, so we’re back to square one for most.
Lastly, I just want to add that you are so very brave, and that your emotional states transformed into your writing, convey as much. I hope the very ritual of it soothes the soul as much as possible.
Thank you! I am so glad you are enjoying Atmosphere. I too love the female characters and their passion for science. I don't feel very brave most of the time. I am just fumbling my way through the best way I know how. As we all do. Thank you for being here! xo
Jennifer, thank you for sharing this information about the blood test and symptoms. I'm angry for you. But grateful you are still here and blessing us with your stories.
Thank you, Lori! I think of you often. And am glad you are here! xo
Jennifer, have you approached or considered approaching the Guardian, BBC, or others with this story? They've run a number of news stories lately (tho never enough!) re: doctors dismissing symptoms or not following up enough especially re: prostate and bowel cancer, and also cancers in young people. The point of said news stories being to raise awareness among people – as you have don here re: the blood test – as well as raising awareness among doctors and nurses. I was misdiagnosed when I was about 30, a doctor who said a mole on my calf could be removed for cosmetic purposes, but didn't merit a biopsy. I was preparing to be interviewed for a job teaching English in Korea, with my then-fiance. But then there came a series of kinda wild coincidences and serendipity - via other artists, writers, bookstores, and magazines! – most notably, my then-fiance's mom was a paralegal working on a case for a family with a young woman of 21 dying of melanoma (a mole on her back) because she had been misdiagnosed. I went straight back to get my mole checked again just weeks later, and fortunately, this time, three doctors looked at it and immediately had it biopsied. It was stage 2 malignant melanoma. Now there is much more awareness of skin cancer, but the doctor I first saw said I was 'a worrier.' Your story is so important! On a completely different note, I'm reading The Ambassador's Wife! Sending hugs and good wishes.
America, that's a good idea. I did write one essay about screening and ovarian cancer, which was published in the Kenyon Review. But it's paywalled. Would love to write something for a newspaper. I will try to get to that. I certainly have a lot of material! I am so glad you had your mole re-examined. Patients really must be assertive with their doctors, no matter how annoyed they get. We know our bodies. We know when something is wrong. And I'm thrilled you're reading The Ambassador's Wife! xo
Jennifer, not to litter your inbox with comments, but just want to say I'm so glad that you've had the essay in the Kenyon Review! It was actually a literary magazine that put me on the road to seeing a doctor: I was living in Denver but went up to Boulder for a day, and went into Boulder Bookstore to find a copy of Glimmer Train, as I wanted to submit a story there. I opened the cover, and saw that the issue was dedicated to a friend of the editors, and he'd died at 36 of melanoma. It said: "If you have a mole that looks strange, don't wait: Get it checked." I had no idea how dangerous skin cancer could be, or a mole. The coincidences and serendipity went on from there. As for your story, I do think it would be so good for it to be in BBC, Guardian, etc., but it was a lit mag – like Kenyon Review – that quite literally maybe saved me.
Absolutely true re prostate and other cancers (as a prostate cancer survivor myself, so far). Not to mention other illnesses or conditions. I've had to advocate for myself numerous times for tests - and have provided doctors with information of which they were not aware, or discounted - and much of it is because docs can be overwhelmed with information and are just not up to date on it. In fact, if you know your body, and you know how to wield the internet, the much discounted "Dr. Google" (or now, Dr. Claude or Dr. ChatGPT) frankly can diagnose and propose treatments better than one's own doctor. (My experience, anyway). It's so important, at this stage in the availability of information, to advocate for oneself if at all possible ... even when we are feeling sick and incapable, and wishing that the effing doctor could just take care of us.
Yes. It's tempting to just passively accept what every doctor says, because it's exhausting to be alert all the time and to advocate for oneself. But as you said we know our own bodies better than anyone. Glad you have survived your cancer!
It IS a tragedy that women aren’t diagnosed earlier. No, more than that, it’s a crime. I was diagnosed thanks to a series of random happenings. First, I had a pain; many women don’t. Then, I uncharacteristically went to the doctor; THEN, in the lottery of HMO urgent care, I drew an older doctor, a woman, who listened with curiosity and didn’t just send me home with a Tylenol.
The surgeon I drew at this HMO was highly skilled. He saved my life. But I loathed him and I’m pretty sure he loathed me.
I’ve forgotten the details of our CA-125 conversation (mine, when they finally took one, was 880). But I remember his telling me that they don’t do the test because it only uncovers cancer 30% of the time. The rest of the time, it indicates other problems in the body cavity, and expensive testing is needed in order to reveal what’s what.
I remember saying, “So we 30% are expendable?” I stared at him until he finally said “yes.”
Can it possibly be true, this memory?
If not entirely, then close to true.
This cancer in its symptoms sounds like old-fashioned female trouble. Bloating, fatigue, frequent urination: all sound like the old indications of weakness, lassitude, hysteria—difficulties we are used to concealing because we fear they will make us seem weak.
About that I can speak only for myself; I’m sure many women, most women, are better at reading their own bodies than I was.
But I do wonder now: how many doctors who pooh-poohed the concerns of their patients, how many who said “There, there, dear” and sent those women home, how many of those doctors have blood on their hands?
And how many of them are ever held to account?
I would love to send you some photos of an art-and-storytelling experience I designed along with an artist friend in L.A. We applied the ancient art of mask-making to the problem of living with fear.
Oooh, that sounds intriguing! You can email me at jfsteil@gmail.com if that works? xoxo
Done!
I am so glad that you were lucky with your treatment! And that you got an effective surgeon even if he was loathsome as a human. I have had the same conversation you have had about screening. They tell me that sometimes other things cause elevated CA125. But I imagine it is also good to have those other things diagnosed! And yes, doctors clearly think we are expendable because they refuse to order the blood test that could save us because of the expense of scans. Frankly, every woman I have met with a high CA125 had ovarian cancer. I think 30 percent sounds pretty low. I was absolutely treated as if I were just a hysterical, hypochondriacal woman. None of these doctors are held to account, I think. I really must write a letter. Thank you for always being here. Love, Jennifer
I lived all Sharyn McCrumb’s Adirondack novels - but especially The Songcatcher.
She seems mostly focused on Appalachia. But if I am missing one that is set in the Adirondacks, please correct me!
I looked up The Songcatcher, but the book description says it's set in the wilderness of North Carolina... will look at her others!
Aargh! I saw the typo as I hit send - and I can’t edit. It was loved, not lived.
After my mother got Stage 3 ovarian cancer with a grapefruit-sized tumor 20 years ago (and she's still alive!), my sisters and I all started getting regular C-125 tests. Then we began getting our ovaries and Fallopian tubes (me and another sister) and just tubes (youngest sister, after having two children) removed for prevention. And I'm adamant about ultrasounds etc... DEMAND YOUR RIGHTS TO HEALTH CARE, ladies!!
The weird thing about having my ovaries out is that now apparently I have no testosterone in my system. Who knew that T was made by ovaries? And we all need testosterone. I can't take estrogen (alas) because of a tiny DCIS breast cancer six years ago (hadn't spread), which means I get to enjoy all the impacts of having no estrogen (fatigue, skin laxity, the rest)... but a specialist hormonal gynecologist in Paris has started me a tiny bit of testosterone, a fraction of what a man would take, to mitigate some of the no-estrogen symptoms, interestingly. Just started so no big results yet.
On a happier note, so glad you read and loved Yara Zgheib's novel NO LIGHT TO LAND ON. I too loved it!!!
I am so glad you and your sisters are looking after yourselves and getting ovaries and fallopain tubes removed. It's such critical prevention! I am also glad (and amazed) that your mother survived and is still alive! I still owe you a birthday coffee! Hope to see you soon. xoJennifer
I will ask for that blood test. Also...I'm currently listening to the podcast--so amazing to hear your voice!!! I don't think I have actually heard you for like...idk 25 years? More? xox
Do I sound the same? So strange to think that. You're so vivid in my mind it's crazy that it's been that long since we've seen each other. Thank you for listening to the podcast. And glad you plan to be screened! If you can't come to Paris for a visit, maybe we could have a Zoom call one time? And then I could hear your voice too! xo
Jennifer, you're a hero from a family of heroes. I just need to say that "...so we kind of got him into the aisle where I just sat on him ...” is the best line I've read so far this week.
Glad you're hiking and the weather is good.
Break a leg, Theadora!
Sending much love and a cool breeze from the Jersey shore!
Thank you, Louis! It's cooler here now, thankfully. And I am calmer. Well, at least some of the time. Glad you are here and reading. Love from Paris!
I'm not sure how medicine works where you developed your symptoms, but I've never heard of a physician having to pay for a diagnostic test. In some systems, the doctor might have to fight an insurance company to get an expensive test for a patient, but the CA125 test should not be one of those tests, especially with symptoms. Routine blood test, ordered without any special preparation. Usually processed at a local lab or possibly one level higher.
Oh, the physician never has to pay! But in London, where I was treated on the National Health Service, they are very concerned with the price of extra tests. The CA125 test is not expensive alone, but they worry about all the scans the already strained health service would have to provide as a result of high CA125s.
My mother was also stage three when she was finally diagnosed in California and had been complaining for years of the symptoms Jennifer describes in this post. Whatever the reason, doctors on both sides of the Atlantic do NOT think to order the tests quickly enough.
Absolutely true, Clara! Almost no doctor ever orders the test in time to save women with ovarian cancer. How is your mother? I hope she is now well. Thank you for reading Liminal and adding your voice here.
Thanks for your warm welcome Jennifer. I read The Ambassadors this summer (picked it up at an AAWE event) and I loved it! Then I found out about your illness through an AAWE communication which led me to your Substack.
Unfortunately Mom passed away in 2022 from complications brought on by the cancer. i had enough time to fly from Paris to Sacramento to be with her for two months before she died and we had lots of hugs and kisses. I imagine your daughter will have time to come to you.
Thanks for sharing your story here. It’s important to get the message out about Ovarian cancer and the experience of living with cancer.
I am so sorry you lost your mom to this disease. But glad you were able to have time with her. Hope to see you in Paris one day!
I love that you can hike like that.
What a fuck××g injustice that the medical world does not take women's health and pain seriously.
Thank you for the book suggestions. I just put the astronaut book on hold via Libby.
Here's a hug from Vancouver Island. Xoxo
I feel your pain very deeply, I was diagnosed with stage 2 LGSOC three years ago, i had very vague symptoms constant weight gain and also gas but nothing
Disturbing till I had very intense pain and nausea diagnosed with diverticulitis but fought for a CT scan prescription to be put in my chart and I went immediately instead of waiting for another round of useless meds. All the others in my support group were diagnosed late due to doctors waiting and sending them away without the bloodwork and I push for vaginal and abdominal ultrasound which is not expensive nor that invasive and can be a starting point. Since the low grade serous is slower growing I am stage 2 not 4. Its so maddening all the beautiful women with this disease that lives could have been saved or extended. Pushing for diagnostics and bloodwork instead of telling us to be more “aware” is the way to go!
Thank you so much for your well wishes, I felt as positive as I could (high recurrent rate on LGSOC and no good chemo) then was diagnosed with a second pretty much worse cancer a year later which no one knows why I got. I am tested every three mos, so exhausting but necessary i guess. Again I had to push to get the second cancer biopsied as my oncologist thought it was a swollen lymph node and wanted to “wait”. I called my surgeon who looked at it and scheduled a biopsy right away. Its just so scary they hold our very lives in our hands with one careless decision.
Absolutely! We must insist on screening. It's just tragic that most of us are diagnosed too late. Even if we know the symptoms, they are similar to symptoms of other illnesses and doctors often dismiss them. I am so glad you are stage 2 and not stage 3 or 4. I am crossing all of my fingers and toes that you survive it and have a long and healthy life ahead of you. Good for you for being assertive with your medical professionals!