Recurrence Symptoms

asuprpixie

I will be going for my CA125 test next month. I have been NED for a little over 3 years now. I was initially diagnosed as Stage IIIC OVCA. I am still nervous every three months even after all of these years. As the time nears, I suddenly start feeling sick. I feel nauseated, bloated, fatigued, etc...I know these are more than likely symptoms of STRESS! M

I have read on here a lot of women who have had recurrence after either months or years of having NED. I haven't really read where there were symptoms that triggered their concern. It seems it is usually during a routine checkup (CA125, PET/CT). It seems like the women who have symptoms and are fearful (myself included) tend to be okay, and the women who are going for their routine tests are not...

My question is this: What are the actual symptoms of recurrence?

Hissy_Fitz

I have know women who
I have know women who recurred and were "fearful", like you, almost on a daily basis and women who truly thought they would never recur. I don't really think there is a connection been how much you worry about it, and whether you will recur or not.

There is a woman in a local group I used to belong to who is over 10 years post-op and has never had a recurrence. When her doctor told her she could come in just once a year instead of every 6 months, she begged him to keep her on the old schedule. She could not hardly stand to wait 6 months between labs/scans. A year would have made her twice as anxious.

I have been NED for about 19 months and my doctor's standard is every 3 months, for CA125, and once a year for CT scan, but he lets me do labs every other month, just to humor me a bit.

I am the world's worst. I once called my family together and told them I was about 90% certain that I was having a recurrence. I had symptoms (or so I thought). After everything was all said and done, I was diagnosed with a hiatial hernia (pain just below my sternum) and a UTI (urinary urgency). If you find a cure (other than drugs) for worry wart-ism, please share!

Carlene

asuprpixie

Hissy_Fitz said:

I have know women who
I have know women who recurred and were "fearful", like you, almost on a daily basis and women who truly thought they would never recur. I don't really think there is a connection been how much you worry about it, and whether you will recur or not.

There is a woman in a local group I used to belong to who is over 10 years post-op and has never had a recurrence. When her doctor told her she could come in just once a year instead of every 6 months, she begged him to keep her on the old schedule. She could not hardly stand to wait 6 months between labs/scans. A year would have made her twice as anxious.

I have been NED for about 19 months and my doctor's standard is every 3 months, for CA125, and once a year for CT scan, but he lets me do labs every other month, just to humor me a bit.

I am the world's worst. I once called my family together and told them I was about 90% certain that I was having a recurrence. I had symptoms (or so I thought). After everything was all said and done, I was diagnosed with a hiatial hernia (pain just below my sternum) and a UTI (urinary urgency). If you find a cure (other than drugs) for worry wart-ism, please share!

Carlene

Worry Wart-ism
Whew! I am happy to know that I am not the only worry wart. I have gone through a lot of your posts. Thank you for being a voice in the OVCA community. I am curious as to what are the true symptoms of recurrence. I am 'assuming' they are the same as the initial symptoms. My problem is that my symptoms never went away because I do have IBS too.

I have my blood work done every 3 months. My oncologist is trying to encourage me to bump it up, but I refuse. That is another question: Can recurrence happen within 3 months time? I am truly clueless when it comes to recurrence.

kikz

asuprpixie said:

Worry Wart-ism
Whew! I am happy to know that I am not the only worry wart. I have gone through a lot of your posts. Thank you for being a voice in the OVCA community. I am curious as to what are the true symptoms of recurrence. I am 'assuming' they are the same as the initial symptoms. My problem is that my symptoms never went away because I do have IBS too.

I have my blood work done every 3 months. My oncologist is trying to encourage me to bump it up, but I refuse. That is another question: Can recurrence happen within 3 months time? I am truly clueless when it comes to recurrence.

I just want to say
I'm glad you came to the board. We love hearing about people who are still NED after a few years. It gives us all hope. I worry too and usually more so right before the CA 125. About a month ago I was sure I had a recurrance. I felt bloated and just kind of weird around my abdomen. I think it was bowel issues. I didn't tell my family because I don't want them to worry unnecessarily. I feel great most of the time and don't want to spend time thinking about the worse case scenario. I have my first appointment with my surgeon since he pronounced me in remission last November. I know he will make me feel good. He tells me the truth but he is also very optimistic.

Karen

lindaprocopio

kikz said:

I just want to say
I'm glad you came to the board. We love hearing about people who are still NED after a few years. It gives us all hope. I worry too and usually more so right before the CA 125. About a month ago I was sure I had a recurrance. I felt bloated and just kind of weird around my abdomen. I think it was bowel issues. I didn't tell my family because I don't want them to worry unnecessarily. I feel great most of the time and don't want to spend time thinking about the worse case scenario. I have my first appointment with my surgeon since he pronounced me in remission last November. I know he will make me feel good. He tells me the truth but he is also very optimistic.

Karen

I never had any symptoms for my recurrences,...none.
I was caught by surprise with each recurrence, discovered on PET scans each time. I didn't even really know where my liver WAS when they diagnosed liver mets; I couldn't feel anything. It is only since I had radioembolism for my liver tumors that I am aware of where my liver is, and it still doesn't hurt. I didn't get the expected liver tumor symptoms until very recently (pale stools, dark urine, yellowed eyeballs) and I have had them for almost a year now.

Now that I am deeper into this journey, the symptoms I was told to watch for are similar to the 7 Warning Signs of Cancer: rapid unexplained weight loss; blood in the urine or stool, constant headaches or dizziness and confusion; a cough that doesn't go away; change in the bowels;.... stuff that would scare anyone into a checkup.

Let me just say that, as a person who has been in almost constant treatment for 3 years, my longing eyes want you ladies in prolonged remission to FORGET ABOUT CANCER and believe in your renewed restored health. I'm sure you want that too. But I can only share that after I finished my 1st line adjuvant chemo and radiation, and was in my first short remission, I believed I was CURED, and the bliss and joy was as breathtaking and intoxicating as being in love. & even though less than 6 months later I had the heartbreak of having my cancer return, that bliss was WELL WORTH the later pain. Please try to believe that you have this beat; I want you all to know that intense joy of a 2nd chance at life and a firm belief that your pre-cancer vibrant health has been restored. Shoot for that ease of mind, at least. I remember dear Nancy saying with such regret, "Had I known remission would be as good as it will ever get, I wouldn't have wasted so much of it worrying". ((((Hugs))))

daisy366

lindaprocopio said:

I never had any symptoms for my recurrences,...none.
I was caught by surprise with each recurrence, discovered on PET scans each time. I didn't even really know where my liver WAS when they diagnosed liver mets; I couldn't feel anything. It is only since I had radioembolism for my liver tumors that I am aware of where my liver is, and it still doesn't hurt. I didn't get the expected liver tumor symptoms until very recently (pale stools, dark urine, yellowed eyeballs) and I have had them for almost a year now.

Now that I am deeper into this journey, the symptoms I was told to watch for are similar to the 7 Warning Signs of Cancer: rapid unexplained weight loss; blood in the urine or stool, constant headaches or dizziness and confusion; a cough that doesn't go away; change in the bowels;.... stuff that would scare anyone into a checkup.

Let me just say that, as a person who has been in almost constant treatment for 3 years, my longing eyes want you ladies in prolonged remission to FORGET ABOUT CANCER and believe in your renewed restored health. I'm sure you want that too. But I can only share that after I finished my 1st line adjuvant chemo and radiation, and was in my first short remission, I believed I was CURED, and the bliss and joy was as breathtaking and intoxicating as being in love. & even though less than 6 months later I had the heartbreak of having my cancer return, that bliss was WELL WORTH the later pain. Please try to believe that you have this beat; I want you all to know that intense joy of a 2nd chance at life and a firm belief that your pre-cancer vibrant health has been restored. Shoot for that ease of mind, at least. I remember dear Nancy saying with such regret, "Had I known remission would be as good as it will ever get, I wouldn't have wasted so much of it worrying". ((((Hugs))))

Hi Ladies.

This is my first post here. I have UPSC, uterine papillary serous carcinoma (like Linda P), which acts like ovarian so I guess I am a relative of sorts.

My gyn/onc told me that I would be the best predictor of recurrence. He told me to be cognizant of any CHANGES that last 2 weeks or more - pain, etc. - and bring these to his attention.

I actually found the mets in my supraclavicular lymph nodes - a lump above my clavicle. Biopsy confirmed recurrence of UPSC.

Like Linda, this sneaky b-----d which I call Chester, attacked me without any symptoms before I had acute attack, hospitalization, and diagnosis 3 years ago.

I would encourage you to BELIEVE you are still NED (rather than torture yourself with worry) and enjoy every second of NED. Though I still get knots in my stomach every 3 months I don't monitor my CA125 - I've asked my doc to do that so that I can remain blissfully ignorant until I need to take some action. Watching those numbers fluctuate is unnecessary stress.

Wishing all of you peace, love, and joy each day. Mary Ann

Hissy_Fitz

Hissy_Fitz said:

I have know women who
I have know women who recurred and were "fearful", like you, almost on a daily basis and women who truly thought they would never recur. I don't really think there is a connection been how much you worry about it, and whether you will recur or not.

There is a woman in a local group I used to belong to who is over 10 years post-op and has never had a recurrence. When her doctor told her she could come in just once a year instead of every 6 months, she begged him to keep her on the old schedule. She could not hardly stand to wait 6 months between labs/scans. A year would have made her twice as anxious.

I have been NED for about 19 months and my doctor's standard is every 3 months, for CA125, and once a year for CT scan, but he lets me do labs every other month, just to humor me a bit.

I am the world's worst. I once called my family together and told them I was about 90% certain that I was having a recurrence. I had symptoms (or so I thought). After everything was all said and done, I was diagnosed with a hiatial hernia (pain just below my sternum) and a UTI (urinary urgency). If you find a cure (other than drugs) for worry wart-ism, please share!

Carlene

Sorry I didn't answer your
Sorry I didn't answer your question. I haven't had a recurrence but like you, I would have assumed the symptoms would be pretty much the same as the original diagnosis. And for me, that would NONE, until I was late stage.

Carlene

dreamer007

Hissy_Fitz said:

Sorry I didn't answer your
Sorry I didn't answer your question. I haven't had a recurrence but like you, I would have assumed the symptoms would be pretty much the same as the original diagnosis. And for me, that would NONE, until I was late stage.

Carlene

went to see the onc doc last tuesday, expecting to be setting up a chemo date, and
what meds would be administered, but that did not happen
right now my ca125 is 262... 'getting there' but not in need of chemo just yet

he gave 3 choices, which are chemo, lupron, or post chemo meds
wondering if anyone has experience with lupron??????
from what i have read online, the side effects are intense... im worried about migraines
from the lupron, which most people seem to experience...that, and hot flashes

before i jump in the lupron pool, i want to know as much as possible, from those who
have taken the shots... i would be getting them one time per month

it felt like the onc doc was annoyed and being condescending to me, when he
EMPHASIZED that all treatments have side effects... he seemed to imply that i
did not understand that, or was questioning my fortitude, and ability to suck it up

i have some severe gastro problems with arimidex, plus bone pain, and feeling
really weird--not sure if anxiety is the proper word-- kind of borderline psychosis
i do have IBS and Diverticulosis, cant really tolerate chemicals in food or meds,
so i have figured out a protocol to live with this, in order to avoid surgery
the past two weeks have been a struggle, because i have had to go thru root canal
surgery, which includes chemicals in the oral cavity, as well as antibiotics in the tooth
i have been fighting migraines almost everyday since this, and waking up earlier
unable to get back to sleep...i know this is a temp situation, so i do my best to
get thru it

these decisions are not easy, and time is always a factor with cancer... its difficult
to make the choice of which poison is going to be the least crappy to deal with
i do feel a little guilt about not taking the arimidex everyday, but its too late to go
back and change that... told my counselor, i kind of feel like im on death row
sometimes

dreamer

carolenk

daisy366 said:

Hi Ladies.

This is my first post here. I have UPSC, uterine papillary serous carcinoma (like Linda P), which acts like ovarian so I guess I am a relative of sorts.

My gyn/onc told me that I would be the best predictor of recurrence. He told me to be cognizant of any CHANGES that last 2 weeks or more - pain, etc. - and bring these to his attention.

I actually found the mets in my supraclavicular lymph nodes - a lump above my clavicle. Biopsy confirmed recurrence of UPSC.

Like Linda, this sneaky b-----d which I call Chester, attacked me without any symptoms before I had acute attack, hospitalization, and diagnosis 3 years ago.

I would encourage you to BELIEVE you are still NED (rather than torture yourself with worry) and enjoy every second of NED. Though I still get knots in my stomach every 3 months I don't monitor my CA125 - I've asked my doc to do that so that I can remain blissfully ignorant until I need to take some action. Watching those numbers fluctuate is unnecessary stress.

Wishing all of you peace, love, and joy each day. Mary Ann

Welcome!
Mary Ann

Welcome to the ovarian board. UPSC is kinda rare isn't it? I've got papillary serous ovarian cancer that moved really fast before my firstline chemo--now it's kind of smoldering. I was never in remission but feel as good as if I was. Now I have to decide what to do next as my CA-125 is almost 300. The oncolgist reminded me today what I already knew--that I'm never gonna understand everything about this cancer!

Thanks for sharing your thoughts here.

Hissy_Fitz

dreamer007 said:

went to see the onc doc last tuesday, expecting to be setting up a chemo date, and
what meds would be administered, but that did not happen
right now my ca125 is 262... 'getting there' but not in need of chemo just yet

he gave 3 choices, which are chemo, lupron, or post chemo meds
wondering if anyone has experience with lupron??????
from what i have read online, the side effects are intense... im worried about migraines
from the lupron, which most people seem to experience...that, and hot flashes

before i jump in the lupron pool, i want to know as much as possible, from those who
have taken the shots... i would be getting them one time per month

it felt like the onc doc was annoyed and being condescending to me, when he
EMPHASIZED that all treatments have side effects... he seemed to imply that i
did not understand that, or was questioning my fortitude, and ability to suck it up

i have some severe gastro problems with arimidex, plus bone pain, and feeling
really weird--not sure if anxiety is the proper word-- kind of borderline psychosis
i do have IBS and Diverticulosis, cant really tolerate chemicals in food or meds,
so i have figured out a protocol to live with this, in order to avoid surgery
the past two weeks have been a struggle, because i have had to go thru root canal
surgery, which includes chemicals in the oral cavity, as well as antibiotics in the tooth
i have been fighting migraines almost everyday since this, and waking up earlier
unable to get back to sleep...i know this is a temp situation, so i do my best to
get thru it

these decisions are not easy, and time is always a factor with cancer... its difficult
to make the choice of which poison is going to be the least crappy to deal with
i do feel a little guilt about not taking the arimidex everyday, but its too late to go
back and change that... told my counselor, i kind of feel like im on death row
sometimes

dreamer

Dreamer...
At least he left
Dreamer...

At least he left the choice up to you. That is HUGE, in my opinion.

I know nothing about Lupron but I would research like crazy, if I were you.

What chemo does he suggest?

And why do you have to wait, if your CA125 is already 200+?

Carlene

dreamer007

Hissy_Fitz said:

Dreamer...
At least he left
Dreamer...

At least he left the choice up to you. That is HUGE, in my opinion.

I know nothing about Lupron but I would research like crazy, if I were you.

What chemo does he suggest?

And why do you have to wait, if your CA125 is already 200+?

Carlene

Carlene,

i have searched online quite a bit the last few days, called ACS, and talked to a few
pharmacists... waiting for
a highly recommended pharmacist to return to work next week, in order to pick his brain

the doctor didnt say what chemo meds, but his nurse has told me doxil, or topotecan...
but i know i have to confirm with the onc doc...not sure if carbo would be included

i think he is trying to keep me away from chemo, cuz it really does take a toll on the body,
and i have the added problem of a very sensitive gastro system, and sensitivities
to chemicals, additives, and that junk in foods and meds...the past two weeks have
been bad enuf with the recurrence, and root canal surgery --antibiotics and some
chemicals had to be used, which throws my body off, and affects my mood

what he told me is if i do the lupron, i see him a month later, and will def have another
ca125 test before i see him, then see if the lupron stabilizes me


dreamer

kayandok

dreamer007 said:

Carlene,

i have searched online quite a bit the last few days, called ACS, and talked to a few
pharmacists... waiting for
a highly recommended pharmacist to return to work next week, in order to pick his brain

the doctor didnt say what chemo meds, but his nurse has told me doxil, or topotecan...
but i know i have to confirm with the onc doc...not sure if carbo would be included

i think he is trying to keep me away from chemo, cuz it really does take a toll on the body,
and i have the added problem of a very sensitive gastro system, and sensitivities
to chemicals, additives, and that junk in foods and meds...the past two weeks have
been bad enuf with the recurrence, and root canal surgery --antibiotics and some
chemicals had to be used, which throws my body off, and affects my mood

what he told me is if i do the lupron, i see him a month later, and will def have another
ca125 test before i see him, then see if the lupron stabilizes me


dreamer

I did have lupron
for 3 months, after doxil. My CA125 was not normal, but I needed a chemo break. It did hold the number steady. I had no side effects whatsoever. In fact I felt great, and was glad that I could have a 3 month break!

I just had a chemo assay and tomaxafin and femara were good for me, so I might try one of those in the future. I have never heard of anyone else using lupron. My doctor recommended it because he had some success with it. I'm just wondering if al the anti-estrogen meds are really all one and the same, just different brands.


Take care,
Kathleen

kayandok

I recurred after being NED for 8 months. I had no symptoms, but was getting my CA125 checked monthly, so I watched my number creep up. When it reached 75, I got a scan and recurrence was confirmed. And I really did believe I was NOT going to recur!

If worry is in the DNA of your personality, not much you can do. A cancer diagnosis is not going to change that. So, just accept that beautiful worrier, and take the best care of her that you can!

Hugs,
kathleen

Lighthouse_7

kayandok said:

I recurred after being NED for 8 months. I had no symptoms, but was getting my CA125 checked monthly, so I watched my number creep up. When it reached 75, I got a scan and recurrence was confirmed. And I really did believe I was NOT going to recur!

If worry is in the DNA of your personality, not much you can do. A cancer diagnosis is not going to change that. So, just accept that beautiful worrier, and take the best care of her that you can!

Hugs,
kathleen

Just wanted to tell you
that I'm thinking of you and hope for the best.
I can't help you with your question, as you know, but if
thoughts, prayers and wishes count......then I can help.
Hugs,
Wanda

Susan53

lindaprocopio said:

I never had any symptoms for my recurrences,...none.
I was caught by surprise with each recurrence, discovered on PET scans each time. I didn't even really know where my liver WAS when they diagnosed liver mets; I couldn't feel anything. It is only since I had radioembolism for my liver tumors that I am aware of where my liver is, and it still doesn't hurt. I didn't get the expected liver tumor symptoms until very recently (pale stools, dark urine, yellowed eyeballs) and I have had them for almost a year now.

Now that I am deeper into this journey, the symptoms I was told to watch for are similar to the 7 Warning Signs of Cancer: rapid unexplained weight loss; blood in the urine or stool, constant headaches or dizziness and confusion; a cough that doesn't go away; change in the bowels;.... stuff that would scare anyone into a checkup.

Let me just say that, as a person who has been in almost constant treatment for 3 years, my longing eyes want you ladies in prolonged remission to FORGET ABOUT CANCER and believe in your renewed restored health. I'm sure you want that too. But I can only share that after I finished my 1st line adjuvant chemo and radiation, and was in my first short remission, I believed I was CURED, and the bliss and joy was as breathtaking and intoxicating as being in love. & even though less than 6 months later I had the heartbreak of having my cancer return, that bliss was WELL WORTH the later pain. Please try to believe that you have this beat; I want you all to know that intense joy of a 2nd chance at life and a firm belief that your pre-cancer vibrant health has been restored. Shoot for that ease of mind, at least. I remember dear Nancy saying with such regret, "Had I known remission would be as good as it will ever get, I wouldn't have wasted so much of it worrying". ((((Hugs))))

thanks Linda
Linda you hit it on the head about worrying about recurrance. I have been worrying so much that I finally made an appointment with a counselor and I have had 2 meetings with her so far. I think she is taking me on the right path although it may be slow but i think she is helping me with the weapons that I need to lesson my worries. Linda I will work with your words about believing that I am cured and enjoy life to the fullest. I will try to remember what Nancy said with such regret, "Had I known remission would be as good as it will ever get, I wouldn't have wasted so much of it worrying.) I also have to remember that God was on my journey during treatment with me at every stage. There were times that he had to push me and also pick me up and carry me. NOW I HAVE TO REMEMBER THIS (DON'T WORRY ABOUT TOMORROW, GOD IS ALREADY THERE) Hugs to everyone of my teal sisters

Tethys41

dreamer007 said:

Carlene,

i have searched online quite a bit the last few days, called ACS, and talked to a few
pharmacists... waiting for
a highly recommended pharmacist to return to work next week, in order to pick his brain

the doctor didnt say what chemo meds, but his nurse has told me doxil, or topotecan...
but i know i have to confirm with the onc doc...not sure if carbo would be included

i think he is trying to keep me away from chemo, cuz it really does take a toll on the body,
and i have the added problem of a very sensitive gastro system, and sensitivities
to chemicals, additives, and that junk in foods and meds...the past two weeks have
been bad enuf with the recurrence, and root canal surgery --antibiotics and some
chemicals had to be used, which throws my body off, and affects my mood

what he told me is if i do the lupron, i see him a month later, and will def have another
ca125 test before i see him, then see if the lupron stabilizes me


dreamer

Lupron
I was on Lupron about 9 years ago for treatment of endometriosis. Essentially, it put me into temporary menopause, so that the hormones would no longer aggravate the condition. I think the hot flash side effects you are hearing about are related to the temporary menopause it produces in pre-menopausal women. Since, I'm assuming, you have been put into surgical menopause, the hot flahes should not be any more severe than what you are currenly experiencing, if any. It has been awhile since I was receiving the injections, but I don't recall any severe side effects.

LaundryQueen

asuprpixie said:

Worry Wart-ism
Whew! I am happy to know that I am not the only worry wart. I have gone through a lot of your posts. Thank you for being a voice in the OVCA community. I am curious as to what are the true symptoms of recurrence. I am 'assuming' they are the same as the initial symptoms. My problem is that my symptoms never went away because I do have IBS too.

I have my blood work done every 3 months. My oncologist is trying to encourage me to bump it up, but I refuse. That is another question: Can recurrence happen within 3 months time? I am truly clueless when it comes to recurrence.

How soon should treatment for recurrence begin?
asuprpixie: I'm thinking that if you DO have a recurrence, knowing your CA-125 is elevated one or two months sooner isn't going to make much of a difference. I'm saying this based on the results of the United Kingdom research looking at ovarian cancer survivors who were having their first recurrence. Half the women went on chemotherapy when the CA-125 was 70 or more. The other half were not treated until they were symptomatic. When the study was completed, the outcome was the same. There was no advantage to getting into treatment earlier.

My interpretation of that research is that the current treatment for OVCA totally SUCKS!