CA 125 level -- Symptoms?? 21yrs old

Mikabee

Hi, I'm new to this web..I'm 21 yr old.I'm 'currently' not diagnosed with OC; however, I was hospitalized twice this year because of extreme abdominal pain (this has actually been going for 3-4years but i received little help with the excuse that "I'm too young") and I recently received news that my CA 125 level was 300 -- i have a 8cm ovarian cyst that doubled in size from mid March. I was supposed to get cyst removal surgery by my OB, but now he is warry that it might be cancerous. Unfortunately my insurance company doesnt have a contracted Onc/Cancer specialist so i havent talked to anyone else..

All i know is that I do not have endometriosis and fibroids were not seen. OB said he's not sure what else would elevate my CA 125 level.. and that he isnt going to take a risk on me for the surgery..and that I'd need to speak to a cancer specialist(which i do not have yet-- working on it).

 

Background:

Mom & only Aunt were diagnosed with Triple Negative Breast Cancer (both at 45 yr. Old)

Mom had endometriosis and cyst -- hysterectomy at 37 yr old (ER procedure)

1 of my sisters tested positive for BRCA1, the other has not been tested

( i, myself, have not yet gotten a genetic test)

 

My symptoms for the past 4 yrs:

Very poor appetite

Extreme abdominal pain-- becoming immobile + shortness of breath 

Nausea/Vomiting 

Cold sweat & Hot flashes

Muscle spasms

Irregular bowel movements with severe abdominal pain

Stomach soreness

Daily cramps (600- 800mg ibuprofen at a time for lessen pain)

Lower back pain

Regular menstrual flow for 2-3 days, cycles are regular

 

Added pain to daily cramps after activities. I use to play court & beach volleyball 5 days a week, yoga (3×) then I stopped after it added to my cramps..I continued doing archery just twice a week and went on 'strenuous' hikes, and backpacked since it was pretty much standing and walking...during one of my hikes I started experiencing signs of menstrual cramps-- where all my Symptoms are combined and i become immobile -- after this Advil doesnt help me, so I stopped hiking and all in fear of being stuck in the woods/ mountains...So I don't feel as motivated, in general, anymore.

 

**Has anyone experienced these symptoms??!**

What should I expect when i do have surgeries /treatment and recovery? (I'm also a full-time student)

What was your CA 125 level when diagnosed and age??

 

 

 

I would really like to be mentally prepared and to explore my options as much as i can!

Thank you!!

 

 

LorettaMarshall

Mikabee~U need to be pro-active-Find a gyn/onc

 

 

Good morning Mikabee

 

Since I have a doctor’s appt. this morning, I’m not able to write my usual long letter.  However, I would say, depending on where you live, find the best gynecologic oncologist that you can and then pursue getting an appointment with them.  Your symptoms are too many to be ignored.  With the history on your family’s side, you need to be tested.  Insurance companies can give special referrals for patients to go to other specialists when there are none in their area that can address your needs.  You deserve a specialist.  Even if it is “only a cyst?”, possibilities of more complications are present, and I would persevere &  find the best doctor now.  My conversion chart shows 8 centimeters when converted to inches is 8cm= 3⁵⁄₃₂inches.  That would be enough to alarm me if I were you.  You are right to be concerned.  

And don't bother trying to be "prepared" for an Ovarian Cancer DX.  That's a place that you don't want to go unless you have to.  With proper testing, a correct diagnosis can be reached and it may not include cancer at all.  The first "stopping off place" would be the gynecologic oncologist who has been especially trained to diagnose female reproductive problems.  Then you can educate yourself quickly once you find out exactly what the problems are.  

 Do you know a good nurse that can help you get started in the right direction?  Doctors can’t judge “from the outside” what’s going on “inside” our bodies. Surely your OB knows a good specialist, if not in your local vicinity, someone well qualified SOMEWHERE!

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 

P.S.  I'm now back from the doctor.  This time it is a "plantar fibroma".  That's an inflammation in the arch area of my left foot.  Oh to have all problems so simple.  I told the podiatrist that I was a terminal cancer patient, and that anything less than cancer wasn't really a "problem."  I can live with "sore feet!"  He smiled and said, "You have a good spirit."  And really on a scale of one to ten, ten being cancer, we learn to "live with it", but at least we're living!  When we let "fear" overtake us, our imagination runs wild, so I ask the Lord to give me the ability to focus on what's happening today, and not live tomorrow or next week with things I haven't really faced YET.  So everyday I ask the Lord to increase my faith and give me the strength to cope with the problems I face that day.  The prayer of serenity certainly is appropriate.  

Serenity Prayer – Full Version (composed in 1940s)

God grant me the serenity 
To accept the things I cannot change; 
Courage to change the things I can; 
And wisdom to know the difference. 

Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 
Taking, as He did, this sinful world 
As it is, not as I would have it; 
Trusting that He will make all things right 
If I surrender to His Will; 
So that I may be reasonably happy in this life 
And supremely happy with Him 
Forever and ever in the next. 
Amen.

Shortened Version 

God grant us the serenity to accept the things we cannot change,
the courage to change the things we can,
and the wisdom to know the difference. 

Mikabee

LorettaMarshall said:

Mikabee~U need to be pro-active-Find a gyn/onc

 

 

Good morning Mikabee

 

Since I have a doctor’s appt. this morning, I’m not able to write my usual long letter.  However, I would say, depending on where you live, find the best gynecologic oncologist that you can and then pursue getting an appointment with them.  Your symptoms are too many to be ignored.  With the history on your family’s side, you need to be tested.  Insurance companies can give special referrals for patients to go to other specialists when there are none in their area that can address your needs.  You deserve a specialist.  Even if it is “only a cyst?”, possibilities of more complications are present, and I would persevere &  find the best doctor now.  My conversion chart shows 8 centimeters when converted to inches is 8cm= 3⁵⁄₃₂inches.  That would be enough to alarm me if I were you.  You are right to be concerned.  

And don't bother trying to be "prepared" for an Ovarian Cancer DX.  That's a place that you don't want to go unless you have to.  With proper testing, a correct diagnosis can be reached and it may not include cancer at all.  The first "stopping off place" would be the gynecologic oncologist who has been especially trained to diagnose female reproductive problems.  Then you can educate yourself quickly once you find out exactly what the problems are.  

 Do you know a good nurse that can help you get started in the right direction?  Doctors can’t judge “from the outside” what’s going on “inside” our bodies. Surely your OB knows a good specialist, if not in your local vicinity, someone well qualified SOMEWHERE!

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

 

P.S.  I'm now back from the doctor.  This time it is a "plantar fibroma".  That's an inflammation in the arch area of my left foot.  Oh to have all problems so simple.  I told the podiatrist that I was a terminal cancer patient, and that anything less than cancer wasn't really a "problem."  I can live with "sore feet!"  He smiled and said, "You have a good spirit."  And really on a scale of one to ten, ten being cancer, we learn to "live with it", but at least we're living!  When we let "fear" overtake us, our imagination runs wild, so I ask the Lord to give me the ability to focus on what's happening today, and not live tomorrow or next week with things I haven't really faced YET.  So everyday I ask the Lord to increase my faith and give me the strength to cope with the problems I face that day.  The prayer of serenity certainly is appropriate.  

Serenity Prayer – Full Version (composed in 1940s)

God grant me the serenity 
To accept the things I cannot change; 
Courage to change the things I can; 
And wisdom to know the difference. 

Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 
Taking, as He did, this sinful world 
As it is, not as I would have it; 
Trusting that He will make all things right 
If I surrender to His Will; 
So that I may be reasonably happy in this life 
And supremely happy with Him 
Forever and ever in the next. 
Amen.

Shortened Version 

God grant us the serenity to accept the things we cannot change,
the courage to change the things we can,
and the wisdom to know the difference. 

Hi Loretta,

Hi Loretta,

Thank you for responding to my post. My sister is an RN and has been helping me through my follow-ups after being hospitalized 2 weeks ago. However i really haven't had any help besides pain killers in the hospital, being told my CA 125 level is abnormal and that other factors of elevators were not seen (such as endometriosis, fibroids, etc.)-- leaving the rest of the information to be discussed with a Cancer Specialist. My insurance really reaaaally sucks and doesnt have a contracted specialist -- this is the only thing ive been waiting on. I really believe i will only get the surgery done if I'm admitted to the ER (like my mom, who got a hysterectomy) because my aunt has also been searching for a wiling specialist for months -- we have the same insurance. Not sure what to expect of any procedures. Just concerned for my overall health and my ability to bare children in the future.

LorettaMarshall

Mikabee-Does your ins. co. have an "appeals board?"

Hello again Mikabee –

Before I even know who your insurance company is, I must agree that it’s not much of a policy if a woman can’t be referred to an oncologist or a gyn/onc.  You don’t happen to be from California do you?  I remember a lady whose mother was getting awful treatment at the hospital who accepted her insurance.  The poor daughter knew that a hospital nearby could perform the surgery her mother needed.  However, Kaiser Permanente said they didn’t have that kind of surgery performed at the hospital presently caring for her mom.  They refused to give her a special waiver.  She protested.  In the end, Kaiser relented and gave her a referral that allowed her mom to get the surgery she needed.  Just wondering if this was Kaiser.

In any event, I’ve looked on the web and see there are some actions that a patient can take when services are being denied by their insurance company.  So perhaps you can “petition” your own insurance company.  Find out how you can appeal because they cannot provide you with a specialist that could properly diagnose and treat you. Although this reference is for the state of Connecticut, there must be an appeals process for all insurance companies.  So whatever state you are in, it seems you could also find out about the “appeals process” when your insurance company doesn’t provide a specialist that can properly treat you. 

Going into the ER for surgery when you don’t really know what is wrong is the last place you need to be treated.  I know a CA-125 marker can be determined by a blood test, but what other kind of tests did you have that indicated that you had an 8 cm. cyst?  I can’t really fault your OB for not wanting to perform surgery when he isn’t sure what he is “looking for or to fix!”  This is perplexing.  I simply feel helpless to know what to say, and I know you’re feeling helpless.  Seems your aunt isn’t faring any better.  I can only say I feel sorry for you, but simply don’t know what to do to help!  Does your OB have “no connections”?

Loretta

_____________________________________________________________________________________

1.       http://www.ct.gov/cid/lib/cid/External_Appeal_Consumer_Guide.pdf

“Introduction

 This guide is designed to assist consumers who have been denied coverage or reimbursement for services under their health insurance plan. This overview provides information on the appeal process through your insurance company, as well as information on filing for an independent review through the State of Connecticut External Review Program.

 Why was my request denied?

 When you receive a denial notice, your insurance company is required to disclose to you the reason for the denial.  These reasons might include:

 Services are deemed not “medically necessary”

  Services are no longer needed in that health care setting or level of care

 The effectiveness of the health care services has not been proven

  Services are considered experimental/investigational for treatment of this condition

 It is important to understand the reason why your request for services has been denied by your insurance company.  This will enable you to work with your doctor to obtain medical documentation to support your need for these services.

 What are my rights as a consumer if I am denied services?

 If you receive a denial based on the reasons above, you have the right to appeal this decision to your insurance company for another review(s).  

If you are unsuccessful, you have the additional right to have this decision reviewed by an Independent Review Organization which is not connected to your insurance company by applying for the State of Connecticut External Review Program…”

______________________________________________________________________________________   

2.       https://nortonsafe.search.ask.com/web?chn=1000820&doi=2016-09-30&geo=US&guid=333950C0-F332-49D9-8207-443FE0C2AF63&locale=en_US&o=APN11910&p2=^EQ^ch20us^&page=1&prt=NSBU&ver=22.8.0.50&q=Member+Rights+&+Responsibilities&tpr=5&ots=1508185067205

Mikabee--This is an entire page of web sites relative to different insurance companies outlining patient’s rights and responsibilities.  Perhaps if your insurance company is on this page, you might inquire as to how to appeal for help that you are not presently receiving because your insurance company does not have a specialist in their network that can help you.

_______________________________Wish I could do more- sorry!________________

Mikabee

I would say you've done a lot

I would say you've done a lot! Thank you so much, I highly appreciate it!!

Hope the best for you The doctor is right, you do have a great spirit! 

Kaleena

Question

Did you get a Gardisil vaccination by chance?