Please Help I am So Scared!!

Endogrl81

Hello to All! I Am new to this forum and searching frantically for answers or help. I am 32 (33 next month), I have had a long history since the age of 17 with severe endometriosis and pelvic adhesive disease as well as autoimmune thyroid disease. I'll try to keep this as condensed as possible . In April I ended up in the ER for a kidney stone,

during the scan they found a large 7cm complex adnexal mass on my left ovary along with small amount of free fluid in my pelvis which was concerning to the ER doc. Fast forward to 3 weeks ago ... i started having severe bloating:distention in my belly to the point of having shortness of breath, have had a low grade fever of around 99.3-99.6 that has been pretty consistent unless I take ibuprofen and it goes down, having off and on again nausea , bad headaches, abdominal and lower back pain, when I eat I get full really fast and having frequent urination. 2 days ago I went bavk to ER because the abdominal swelling and shortness of breath was so bad! They did an ultrasound this time that confirmed

the previous ct scan results, but also showed dilation of left tube with debris in it and also a new 3cm complex cyst that had formed on my right ovary. The radiologist and ER doc are concerned of possible ovarian neoplasm (ovarian cancer !!) I am following up with a gyn but could not get in for an appt for another 2 weeks! I am absolutely going crazy with the worry of if this may be cancer, it runs on my mothers side of the family . Can anyone give me some clarity if my fear is justified,

does this sound like it is a good chance that it is?? Or am I being silly ?? Thanks so much for any help or responses you can give!! I'm feeling so overwhelmed and helpless right now

God Bless

susie92

Neoplasms

Neoplasms can be benign. Did someone actually use the word malignant? Why were they not able to interpret the result..are they leaving it up to the gynecologist? With anyone here, it usually starts with a sonogram, then a cat scan. Are you seeing a gyn oncologist, because if not, you should. They operate based on a cat scan and usually they do a CA-125 blood test. Make sure you get that. Two weeks is a long time to wait and carry around this anxiety. Can you start doing some research and find a gyn oncologist who may be able to see you sooner?

You are not being silly...if it is cancer, you want to catch it early. Please post and let us know what happens and the best of luck to you.

Endogrl81

susie92 said:

Neoplasms

Neoplasms can be benign. Did someone actually use the word malignant? Why were they not able to interpret the result..are they leaving it up to the gynecologist? With anyone here, it usually starts with a sonogram, then a cat scan. Are you seeing a gyn oncologist, because if not, you should. They operate based on a cat scan and usually they do a CA-125 blood test. Make sure you get that. Two weeks is a long time to wait and carry around this anxiety. Can you start doing some research and find a gyn oncologist who may be able to see you sooner?

You are not being silly...if it is cancer, you want to catch it early. Please post and let us know what happens and the best of luck to you.

Thank you for your response ,

Thank you for your response , there was no confirmation as far as benign or malignant ... I was told that a biopsy and CA 125 would be the only way to confirm that and referred to a gyN to do so. Unfortunetly I have not had a gyn visit since my last Lapo surgery for the endo and pelvic adhesive disease, I do not have insurance so this is especially scary because I don't know how I'm going to afford all of this. I chose this specific gyn because one he is the best in this area and two he knows my history because he is the doc that originally diagnosed me with endo and PAD. The not knowing and waiting is absolutely the worst, but I will take you up on advice to look around for a repitable gyn in the area that may be able to see me sooner:) thanks!

wholfmeister

Don't panic

You can't breathe and you are in pain...of course you are not being silly!  You need treatment, but don't panic.  Your symptoms could be many things, including ovarian cancer.  Did no one refer you after your initial scan?!  I suggest you call the GYN office, plead your case for an earlier appointment.  And then research cancer centers in your area...find a GYN-oncologist and get an appointment ASAP. Get your scan and ultrasound results and send those ahead to your appointments.  Do not research ovarian cancer on the internet...you will drive yourself mad.  Two weeks is a long time to be so scared and anxious, but if that is the best you can do, keep busy...and don't panic.

Endogrl81

Endogrl81 said:

Thank you for your response ,

Thank you for your response , there was no confirmation as far as benign or malignant ... I was told that a biopsy and CA 125 would be the only way to confirm that and referred to a gyN to do so. Unfortunetly I have not had a gyn visit since my last Lapo surgery for the endo and pelvic adhesive disease, I do not have insurance so this is especially scary because I don't know how I'm going to afford all of this. I chose this specific gyn because one he is the best in this area and two he knows my history because he is the doc that originally diagnosed me with endo and PAD. The not knowing and waiting is absolutely the worst, but I will take you up on advice to look around for a repitable gyn in the area that may be able to see me sooner:) thanks!

can they tell if it is benign

can they tell if it is benign or malignant through a ct scan? The one I had was a "no contrast" scan... Does that make a difference? Not sure why they didn't take the extra steps to do a PET scan... They just passed me off to a gyn to figure it out. That does not really surprise me though that's our "health"care system. 

kimberly sue 63

It is a concerning situation

It is a concerning situation and bound to cause emotional responses. I know I had diarrhea from nerves for 2 weeks before I had surgery. You could call the gyn and ask to be put on the cancelattion list. also you may want to seek out a gyn/oncologist and make an appoint with them.

 

We are here for your support. Kim

Endogrl81

wholfmeister said:

Don't panic

You can't breathe and you are in pain...of course you are not being silly!  You need treatment, but don't panic.  Your symptoms could be many things, including ovarian cancer.  Did no one refer you after your initial scan?!  I suggest you call the GYN office, plead your case for an earlier appointment.  And then research cancer centers in your area...find a GYN-oncologist and get an appointment ASAP. Get your scan and ultrasound results and send those ahead to your appointments.  Do not research ovarian cancer on the internet...you will drive yourself mad.  Two weeks is a long time to be so scared and anxious, but if that is the best you can do, keep busy...and don't panic.

Thank you so much I'm trying

Thank you so much I'm trying not to lose it completely lol, yes I agree I have to stop googling!!! Yes they did refer me after the first scan but I was unable to afford the cost of a visit and ultrasound until now, i called today to see if I could get in sooner and explained what is going on... The gyn is supposed to be pulling my records and seeing if I can get in sooner but still waiting to hear back from his office ugh the waiting game!

Endogrl81

kimberly sue 63 said:

It is a concerning situation

It is a concerning situation and bound to cause emotional responses. I know I had diarrhea from nerves for 2 weeks before I had surgery. You could call the gyn and ask to be put on the cancelattion list. also you may want to seek out a gyn/oncologist and make an appoint with them.

 

We are here for your support. Kim

Thank you so much Kim !

Thank you so much Kim !

Susan P

Endogrl81 said:

Thank you so much Kim !

Thank you so much Kim !

I'm so scared

Hi & welcome to the best ov ca suppoirt site there is

 

 

Like you - I was pretty sure I had something bad going on & prob OV CA  I just wanted to know & start fighting the beast.

 

" no amount of worry will change anything

the fluid in your abdomen is called ascites & somehow a by product of the cancer in the pelvic cavity  - you can& should have it drained "Paracentheses"

 

My first drain yielded 8 liters -  6-8 qts& a sample was sent to pathology to confirm cancer cells OF COURSE - word "cancer" sends a message of doom -  OVCA is treatable  the chemo is hard but  doable reading on this site was reassuring - to see my treatment was like everyone's - so mygyne/onc must be doing the proper protocol.

 

at this point in the journey you do have a right to be worreied & scared --  just don't make yourself sick over it - it is what it is & you can't change it.

 

Once you know what is going on so you can at least deal with it  head oin  it's the doing nothuing that is the worst.

Learn what you can - ask docs questions.

 

CAUTION:  when googleing for info - don't believe all you read.  use it to learn enough to ask questions come back here & read & read - we aren't medical people - just a groiup of women whi have been on the same journey.

 

 

Best wishes & sending concern your way

 

 

Susan P from Alberta Canada&TX& WY

 

PS  keep us updated so we can get to know you!

 

 

 

 

jbeans888

Ok, calm down and take a deep

Ok, calm down and take a deep breath.  Don't worry until you have to worry.  Many many hospitals have charity care for poleople who are uninsured.  When I was dx at 31, I am now 34,  I also had no insurance.  You need to contact the finance department and ask thenm  If it's a university hospital or state hospital then they will most likely have it.  Even some cancer institutes do as well. The key is that you have to ask. They will not just openly say to everyone that yes we offer financial aid.  I did that and it was like a miracle Because I was unemployed at the time as well. Where are you at? In the US?

Endogrl81

Susan P said:

I'm so scared

Hi & welcome to the best ov ca suppoirt site there is

 

 

Like you - I was pretty sure I had something bad going on & prob OV CA  I just wanted to know & start fighting the beast.

 

" no amount of worry will change anything

the fluid in your abdomen is called ascites & somehow a by product of the cancer in the pelvic cavity  - you can& should have it drained "Paracentheses"

 

My first drain yielded 8 liters -  6-8 qts& a sample was sent to pathology to confirm cancer cells OF COURSE - word "cancer" sends a message of doom -  OVCA is treatable  the chemo is hard but  doable reading on this site was reassuring - to see my treatment was like everyone's - so mygyne/onc must be doing the proper protocol.

 

at this point in the journey you do have a right to be worreied & scared --  just don't make yourself sick over it - it is what it is & you can't change it.

 

Once you know what is going on so you can at least deal with it  head oin  it's the doing nothuing that is the worst.

Learn what you can - ask docs questions.

 

CAUTION:  when googleing for info - don't believe all you read.  use it to learn enough to ask questions come back here & read & read - we aren't medical people - just a groiup of women whi have been on the same journey.

 

 

Best wishes & sending concern your way

 

 

Susan P from Alberta Canada&TX& WY

 

PS  keep us updated so we can get to know you!

 

 

 

 

Thank you for the reply:)

Thank you for the reply:)  WOW 8 liters?? That's a lot of fluid! I was told it mine was a "small amount" so not sure what that means. Yes and your right  I am in that "fight" mode and want whatever  it is out of me!! Trying to not get too worked up about it but still doing everything I can to get it taken care of but the docs aren't at the same speed that I am right now lol. I am so happy I found this site and appreciate all of the responses so much! Thank you for the info

Endogrl81

jbeans888 said:

Ok, calm down and take a deep

Ok, calm down and take a deep breath.  Don't worry until you have to worry.  Many many hospitals have charity care for poleople who are uninsured.  When I was dx at 31, I am now 34,  I also had no insurance.  You need to contact the finance department and ask thenm  If it's a university hospital or state hospital then they will most likely have it.  Even some cancer institutes do as well. The key is that you have to ask. They will not just openly say to everyone that yes we offer financial aid.  I did that and it was like a miracle Because I was unemployed at the time as well. Where are you at? In the US?

thank you for the reply And

thank you for the reply And info!! Yes I am looking into a program now for aid at the hospital I went to, so hoping for good news:)) I am in the US. It is hard for people like myself to get assistance with this type of thing here our system I so messed up... I'm a married woman with a husband who owns  a successful construction company , I have no kids and not on welfare  . I have tried to get assistance before and they base it on my husbands income  so apparently we are in  too high of a tax bracket. I could go on and on about the nightmare I've been through trying to get insurance that would cover athe condition I have had since I was  17. but that is a very long story in itself. I  am praying that this program works out:)))  i

Endogrl81

Endogrl81 said:

thank you for the reply And

thank you for the reply And info!! Yes I am looking into a program now for aid at the hospital I went to, so hoping for good news:)) I am in the US. It is hard for people like myself to get assistance with this type of thing here our system I so messed up... I'm a married woman with a husband who owns  a successful construction company , I have no kids and not on welfare  . I have tried to get assistance before and they base it on my husbands income  so apparently we are in  too high of a tax bracket. I could go on and on about the nightmare I've been through trying to get insurance that would cover athe condition I have had since I was  17. but that is a very long story in itself. I  am praying that this program works out:)))  i

Apologize for all the typos

Apologize for all the typos lol harder to type on my phone lol;p

Endogrl81

Endogrl81 said:

Apologize for all the typos

Apologize for all the typos lol harder to type on my phone lol;p

I also wanted to add that the

I also wanted to add that the large mass contains a blood supply as well, four years ago I had a laporscopy for the endo and that is when I found out that the disease was so severe at stage 4 endo and pelvic adhesion had incased my uterus , tubes , ovaries and had then attached them all to my pelvic wall, both my tubes are clubbed/closed and fill with endo and adhesion and has also spread to my bladder and part of intestines. Although the surgeon during the procedure tried to "clean up" and detach what he could for whatever reason he left alot of things "undone" due to how much adhesion was in there. Also the mass I that was found in ct scan was actually found back then during procedure at the time it was only about 2.5cm and they didn't even take a biopsy, they left it in there , I was told to remove it would have meant remove most of or most likely all of my reproductive organs and he was not comfortable doing that without me having knowledge of it as well as the fact that I don't have any children and he wanted me to be able to go to a fertility specialist and see what my options were before he removed everything . I was told that under any other circumstance an emergency hysto would have been done due to the severity of the disease and damage it has cause. So long story short that mass has now grown to 7cm and radiologist and doctor now is concerned of it being ovarian cancer with the recent ct scan and ultrasound findings and symptoms. I am quite upset that if this turns out to be the "c" word that the doctors left that mass in me without even testing it back then! It would take me weeks to go through the roller coaster I have been through when it comes to my disease and I fertility problems ive been suffering from since I was a teenager.

FightingSpirit

Endogrl81 said:

I also wanted to add that the

I also wanted to add that the large mass contains a blood supply as well, four years ago I had a laporscopy for the endo and that is when I found out that the disease was so severe at stage 4 endo and pelvic adhesion had incased my uterus , tubes , ovaries and had then attached them all to my pelvic wall, both my tubes are clubbed/closed and fill with endo and adhesion and has also spread to my bladder and part of intestines. Although the surgeon during the procedure tried to "clean up" and detach what he could for whatever reason he left alot of things "undone" due to how much adhesion was in there. Also the mass I that was found in ct scan was actually found back then during procedure at the time it was only about 2.5cm and they didn't even take a biopsy, they left it in there , I was told to remove it would have meant remove most of or most likely all of my reproductive organs and he was not comfortable doing that without me having knowledge of it as well as the fact that I don't have any children and he wanted me to be able to go to a fertility specialist and see what my options were before he removed everything . I was told that under any other circumstance an emergency hysto would have been done due to the severity of the disease and damage it has cause. So long story short that mass has now grown to 7cm and radiologist and doctor now is concerned of it being ovarian cancer with the recent ct scan and ultrasound findings and symptoms. I am quite upset that if this turns out to be the "c" word that the doctors left that mass in me without even testing it back then! It would take me weeks to go through the roller coaster I have been through when it comes to my disease and I fertility problems ive been suffering from since I was a teenager.

Don't Panic

My sister had the same symptoms, except the fluid build-up, and it turned out to be a complex cyst causing all of her problems.  I know it's easier said than done, but don't claim this disease until you have to.  Can you go to another doctor sooner for diagnosis and then transfer to your doctor of choice if needed?

Hope this all ends well for you.

Endogrl81

FightingSpirit said:

Don't Panic

My sister had the same symptoms, except the fluid build-up, and it turned out to be a complex cyst causing all of her problems.  I know it's easier said than done, but don't claim this disease until you have to.  Can you go to another doctor sooner for diagnosis and then transfer to your doctor of choice if needed?

Hope this all ends well for you.

Thank you for your response ,

Thank you for your response , yes I am staying positive and hoping that this all just has to do with the endo I have although still a big problem that has to be addressed definitely easier to swallow than a cancer diagnoses. I think anytime the "c" word is a probability it is a very scary thing to go through. Regardless whatever is going on it has to come out for sure and a long needed hystorectomy is in my future. This has been such a tough year as my best friend was diagnosed with cervical cancer and has had a very difficult time, I have been so consumed with being there with her every step of her journey and fight I never ever thought about the possibility that I would be facing something like this now. so right now I am especially sensitive to this and very scared. Since I have yet to hear back from my gyn ( hoping to today), I  am going to look into finding another doc in the mean time:)

neelcancer

Endogrl81 said:

Thank you for your response ,

Thank you for your response , yes I am staying positive and hoping that this all just has to do with the endo I have although still a big problem that has to be addressed definitely easier to swallow than a cancer diagnoses. I think anytime the "c" word is a probability it is a very scary thing to go through. Regardless whatever is going on it has to come out for sure and a long needed hystorectomy is in my future. This has been such a tough year as my best friend was diagnosed with cervical cancer and has had a very difficult time, I have been so consumed with being there with her every step of her journey and fight I never ever thought about the possibility that I would be facing something like this now. so right now I am especially sensitive to this and very scared. Since I have yet to hear back from my gyn ( hoping to today), I  am going to look into finding another doc in the mean time:)

Don't Afraid, Stay positive

Hi Friend, I'm not cancer doctor, but I can share my views as I have seen many cases. So staying positive and maintaing a healthy lifestyles are the main things which can help you. Till you get another best doctor try to increase immunity power of your body by eating fruits and foods which contain anti-oxidants in rich amount. It will keep you healthy.

Endogrl81

neelcancer said:

Don't Afraid, Stay positive

Hi Friend, I'm not cancer doctor, but I can share my views as I have seen many cases. So staying positive and maintaing a healthy lifestyles are the main things which can help you. Till you get another best doctor try to increase immunity power of your body by eating fruits and foods which contain anti-oxidants in rich amount. It will keep you healthy.

Thank you

Thank you:) luckily i have always lived a healthy lifestyle and it is very important to me. Exercise and a healthy organic/natural eating regimen is a daily must for myself and hoping that it is reflective in a positive outcome of

all this. That also poses a question I have about how do some people in this forum feel about holistic treatment as opposed to traditional if this were to turn out to be the "c" word .... I have always said that if faced with something like this I would never do radiation and chemo, I am open minded to everyone's personal choice only we can decide what is right for us:) 

mopar

Endogrl81 said:

Thank you

Thank you:) luckily i have always lived a healthy lifestyle and it is very important to me. Exercise and a healthy organic/natural eating regimen is a daily must for myself and hoping that it is reflective in a positive outcome of

all this. That also poses a question I have about how do some people in this forum feel about holistic treatment as opposed to traditional if this were to turn out to be the "c" word .... I have always said that if faced with something like this I would never do radiation and chemo, I am open minded to everyone's personal choice only we can decide what is right for us:) 

PRAYERS & (((HUGS)))

I agree with all the other laides - don't panic.  Speaking from personal experience, I also had endometriosis, and it is such an invasive disease that can certainly mimic cancer or other conditions.  Having said that, given your family history it is best to seek out a gynecologic oncologist.  There certainly is no way to determine malignancy without surgery and pathology.  And a gyn/onc tends to be much more thorough, at least mine was extraordinarily thorough, and for that I am eternally grateful.

I applaud you for your continued healthy approach.  We have always been holistically-minded as well.  While it doesn't mean nothing will ever happen to you, I firmly believe it minimizes your chances, and gives you a much better chance in the presence of disease.  My dear, sweet husband searched high and low for wheat grass when I first had to go through chemotherapy (which I chose because the tumor had ruptured during removal and spilled into my system).  This was in 2000, and wheat grass was not as easy to find.  We juiced it, along with other ingredients, and I drank it daily.  Sure tasted like I was drinking my front yard!   But I believe it was instrumental in getting me through it all, as well as the other part of my regimine.  

So, let us know what you find out.  Either way, I'd love to share our routines, as I'm always open to learning more - there's always so much to learn!  Till then, sending lots of prayers your way.  Continue your exercise when possible, it will help relieve stress and keep you strong, no matter what lies ahead.

(((HUGS)))

Monika