Aubrey

Elevated marker levels 

Hello, I am new to this platform, so I’m sorry if I accidentally offended somebody by my choice of words. I’m sorry in advance; this might be too long for some to read. I am 29F and have been trying to conceive for 2.5 years now. Initial ultrasounds and CA-19 and hormone tests started about 1 year ago, which showed no major concerns. According to CD2 and CA-125 blood tests, all hormones were normal, and ultrasound showed healthy multiple-growing follicles. No extra mass and no ovarian cancer at the time.

I have always had regular 28-day cycles plus minus 1-2 days, so I never thought anything was out of order in the system. However, when I started to try and conceive, it didn’t go as planned, hence the initial ultrasounds and blood tests. Fast-forward to multiple assisted cycles later. I had an ultrasound this month, which showed a cyst. The doctors then had me do a bunch of blood tests.

A 3.5cm cyst in my right ovary

According to the ultrasound technician, this was just a simple cyst that could happen to anyone during the cycle, so there was not much to worry about. However, the gynaecologist wanted blood tests to rule out anything major regarding the cyst.

Some blood exams that I got were CD2, FSH, LH, Prolactin and CA-125. Everything else was within the normal range, while CA-125 was 112, which is quite high since the normal limit is 35. I have health anxiety, so as expected, I got really worried and started to research CA-125, which in turn made me more worried. I have never had a diagnosis with endometriosis, and I don’t have any signs of it either. My menstrual pain is not minimal, but it is not chronic or severe enough to make me think about endometriosis.

So my question is, what are the chances that this might be cancer? Or can I have endometriosis without the expected signs and symptoms? The gynaecologist has told me to wait 1 month and repeat the CA-125 test and ultrasound to see if either elevates further. But I, having health anxiety, am not satisfied with the waiting. I feel like it will eat me alive. My gynaecologist says fertility drugs can cause a cyst to develop, but what are the chances that it can be cancer?

Please, anyone with some insight regarding this, please help. I am not looking for answers; I want to know the experiences of other individuals with similar conditions.

Zoey

CA-125 and CA-19-9 elevated?? I have not had a lap yet, but doctors have found what they initially suspected to be 2 endometriomas on each ovary measuring around 5-6cm each via abdominal ultrasound in January. Fast forward to a month later, I ended up in the ER because of awful period pain (intense cramps, nausea, belching, blacking out from pain, etc.) that caused consistent abdominal pain for 2-3 weeks after my period ended. I only went to the ER because I was worried that a cyst had ruptured or caused ovarian torsion due to the lingering pain after my period had ended. The ER doctors did a transvaginal ultrasound (my first time having one done), and in their report, they wrote.

” Normal ovaries are not separately identified. Large cysts or one large septated cyst are seen anterior to the uterus. Overall, this measures 10.3 x 8.9 x 8.9 cm. There may be some vascularity in the walls. ”

My endo specialist had me do blood tests for ovarian organ cancer due to the ER doctor’s suspecting vascularity. When my blood test results returned, my CA-125 was 730 u/mL, and my CA 19-9 was 285 u/mL. My endo specialist is now transferring me to a gyno-oncologist. I am completely losing her as my doctor since she won’t do surgery on me if they suspect cancer.

I am only 19

So I know ovarian disease is pretty rare for my age, but these elevated CA-19 levels are concerning me. So, I am posting here hoping to receive good advice on what I should do. I am in college far away from home, too. I am so sad that I must balance this medical stuff with school. My endo CA-19 specialist was planning to perform my lap to remove what we suspected to be ovarian endometriomas during my summer break since there was no urgency for surgery to be done while I was in college. But now they are worrying about whether I have CA-125 cancer instead of endometriosis. I don’t know what to expect or how to deal with this.

Linda

The Unexpected News

I found out that I have high ca125 two weeks before moving into my dorm first year. It was tough; I thought all my hard work would be postponed due to this. You do everything right. Get good grades and hours spent towards extracurriculars and clubs. I was on the drill team then, so I was constantly moving. I made good decisions about my friends: no drugs or alcohol, no smoking. Then it hits you like a truck that none of mattered when faced with possible death by your cells.

The First Signs

I just had bad pelvic pain when I went to bed. It happened two nights in a row. The second night, I woke up to unbearable pain that left me in tears. I stressed my mother to take me to the ER, and it unfolded within 7 days of going to the ER. Scans, bloodwork, surgery then chemo started two weeks into college. I had just turned 18 a month prior, so I took the load of my appointments. And I became my health advocate; I had to. I had a lot of willpower and determination to do so and be strong.

I had never been to the gynaecologist, let alone have my blood taken for CA-125 levels before all of this.

The Move and Support System

We moved my CA-19 doctors near my school, 4 hours away from my hometown. It was heartbreaking for my family, but I’m so thankful for the support system I had. My mom drove down for all of my chemo appointments so she could support me in my chemo treatments and going to college. Bless her heart. She sacrificed everything for me to feel as comfortable and happy as I could be. Tons of family members were upset my mother would ever allow me to move away from home during this, but my mother just wanted me to feel as normal as possible, and I did too.

I didn’t have much of a social life during my first year of college, but I had my partner, now of 5 years, by my side the entire time. Three months, three rounds. One week on chemo monday through Friday, then two weeks in between, I would receive chemo once a week. My mother would drive up for one day and leave the next for the in-between.

Personal Growth and Reflection

I learned a lot about myself; I was forced by CA-19 results to grow up and start my life’s path. Forced to face the harsh reality of cancer. I felt lost, and my religious beliefs became quickly irrelevant. I’ve spent a lot of time thinking and internally working on myself. I’m now way more mature, calm, patient, resilient, reliable and understanding of others’ lives. Life is priceless, and I will never take moments of chance for granted, nor will my friends and family. After all that and the possibility of reoccurrence, I would never trade that experience for the world.

I was bitter for the first year of CA125 related cancer. And I quickly picked myself up and started to reflect. Making sure I was taking everything this gave me and funnelling it for good. I miss the little girl I was before, who lived with very little worries, but the universe had plans, and this is how it played out. I feel I’m here to serve a purpose and change lives daily, and I’m still alive to do that.

P.S. now I suffer from acid reflux after chemo ;( not fun, hate it. Gerd is so uncomfortable.