Waiting for diagnosis and worried

ccarson01

I'm 27 and have been having concerning symptoms for several months that doctors think might be ovarian cancer. I'm waiting for my CA125 results, but I would appreciate hearing if anyone else had similar symptoms that led to their diagnosis. It's been a stressful process getting to the bottom of what's going on, especially during COVID, so I truly appreciate this community and your support. 

Starting two and a half months ago, out of the blue I started feeling distention and pressure in my lower abdomen-it feels like I'm laying on a balloon when I'm on my stomach. I also started having GI symptoms including daily acid reflux, constipation, bloating, as well as frequent urination. Daily fiber supplements and probiotics eventually helped with constipation, but didn't help any other symptoms. Eventually the frequent urination and urinary urgency became much worse and didn't improve after being treated for a presumed UTI. The urine culture came back negative for bacteria, and follow-up tests of metabolic function, thyroid, and other urine abnormalities were also negative although I did have low vitamin D. At this point the abdominal swelling became even more pronounced and I was up 2 pant sizes even though I was losing some weight (about 3lb in the last month) and was noticeably losing fat in other areas of my body including going down a bra size. I also started having both sharp pain and muscle spasm-like pain in my abdomen, especially on the left side. Recently, I've also had a very small appetite and get full very quickly after starting to eat, which I'm sure is partially responsible for continuing to lose weight. 

My general doctor referred me to the OBGYN to follow up, and thankfully they saw me even though they were only seeing current obstetric clients because of COVID. I had an ultrasound and they found a 3cm complex cyst on my left ovary. The doctor said my uterus seemed fine in the ultrasound, but it was enlarged when she examined it. She seemed quite concerned by this but didn't really explain why. I would guess this is the lower abdomen distention I've been feeling, but it still seems surprising that and the small cyst alone would cause my abdomen to be so large. The doctor seemed confused both that the uterine distension didn't show up in the ultrasound and that such a small cyst would cause that and the uterine distention and other symptoms I've been experiencing. 

It's frustrating that I still have more questions than answers at this point. Currently, my doctor decided to wait for the CA125 results and have a follow-up ultrasound in a month to see if there have been any changes. At first she had wanted to put me on a different birth control pill with a higher level of estrogen, but after feeling how distended my uterus was, she decided to follow-up more quickly but not start any medical interventions (again, I didn't get much explanation of her reasoning). Also knowing that CA125 tests have so many false negatives, I'm concerned that if it's negative, she'll just want to continue monitoring the cyst without intervening even though my symptoms have been so impairing.

I'd appreciate hearing about any similar experiences or any advice you have for what helped you get answers. Thanks in advance!

Floridafan

I'm not sure if this helps,

I'm not sure if this helps, but I was diagnosed with ovarian cancer last November. The only sympton I had in common with what you've mentioned was the small appetite. Also I had fibroid tumors 33 years ago, and had a myomectomy for them. I was able to conceive and birth 2 healthy children after that. Your symptoms to me sound more like what some peope experience with fibroids, especially the enlarged uterus.I'm not a doctor or any kind of expert on this - just sharing what I've experienced. I know that not knowing is extremely stressful, and this Covid situation only adds to that, but please try to take it all one day at a time.

ccarson01

Floridafan said:

I'm not sure if this helps,

I'm not sure if this helps, but I was diagnosed with ovarian cancer last November. The only sympton I had in common with what you've mentioned was the small appetite. Also I had fibroid tumors 33 years ago, and had a myomectomy for them. I was able to conceive and birth 2 healthy children after that. Your symptoms to me sound more like what some peope experience with fibroids, especially the enlarged uterus.I'm not a doctor or any kind of expert on this - just sharing what I've experienced. I know that not knowing is extremely stressful, and this Covid situation only adds to that, but please try to take it all one day at a time.

Thanks for your reply! I

Thanks for your reply! I agree, some things still don't add up. Doctors have told me  they don't think it's fibroids since I'm not having irregular periods, and if anything they've been lighter than usual lately. Also, I don't think they saw any other abnormalities on the ultrasound besides the ovarian cyst. Fibroids should show up, right?

ccarson01

Update

I wanted to give an update. My CA125 came back not elevated, but after requesting a copy of the ultrasound I found out my doctor misread the size of the cyst. Rather than being "ovary-sized" like she told me, it is 18cm!! I'm horrified but glad I have some answers.

Floridafan

ccarson01 said:

Update

I wanted to give an update. My CA125 came back not elevated, but after requesting a copy of the ultrasound I found out my doctor misread the size of the cyst. Rather than being "ovary-sized" like she told me, it is 18cm!! I'm horrified but glad I have some answers.

I'm so happy that your CA125

I'm so happy that your CA125 came back with good results! Now you can figure out what your next step will be. I strongly urge you to get a second opinion before you consent to any kind of surgery tough. There are many ways to treat fiboids so hysterectomy might not be your only choice. Good luck and keep us posted!

CharityP

a few shared symptoms

I too had some gastric symptoms - which is what brought me to doc in first place. I had a lot of discomfort eating, felt full fast, stomach would empty slowly and I had a hard time burping. Pounding my chest in between bites helped assist burping. In fact, all my symptoms were restricted to between my esophagus and my stomach. But I also began having drenching night sweats (I'm 50, post menopausal) which was alarming. My self-googlnosis was GERD.

Blood panel showed elevated CA 125 and CA 19-9 (I think that's the number..) which led to the CT scan and boom, there is was, a 13 cm cyst. Plus the added bonus of a mass up in my chest (looks to be a benign thymoma). I had lost 20 pounds at this point as well.

My gynocological oncologist didn't think it was cancer. It just wasn't presenting as such and was confident that it was a normal cyst to be monitored for now but would need removal. So i was urgently referred to a thoracic surgeon to invenstigate the chest mass, certain that's where my symtoms were coming from. Nope. Had a PET scan and he determined it's a benign mass, also to be monitored and likely removed later.

Back to the cyst. The only way to biopy my cyst/mass is after removal so I went in for hystorectomy and biopsy. That's when it came back postive for 1A ovarian cancer. So they took out everything (again, Im 50 and past child-bearing age) including my omentum. 

My symptoms have ceased. It is still perplexing to everyone why/how such an early stage presented with any symptoms at all, if that is indeed the case. My wieght is maintaining, my large appetite is back and no burping issues. I ws afraid I might be missing something important related to my stomach and wanted to be sure it was investgated before beginning chemo. Upper endoscopy revealed severe acid reflux damage and small hiatal hernia but nothing serious - whew!

We still don't know why or how a stage 1A cancer would present symptoms so early but I am grateful it led me to catching it so soon! I hope you find some answers! Do lot's of research, ask LOTS of questions, get reffered to specialist if needed - be your best advocate! 

 

annienj

Similar Symptoms
Last year May, I was having bowel issues between evacuation and constipation. Doc said more water and Metamucil. In December last year 2019 was a follow up, and again I mentioned bowel issues. I was also having lower back pain for about two months. Thought it might be my recliner, so bought a new one Jan 2020. Then abdomen started bloating where I couldn't fit in my pants and wanted NOTHING around my waist. Treated with laxative and Advil. Of course googled symptoms thinking maybe IBS and was scheduled for a Gastro appt in May of this year. Well, it got so bad mid April that I thought I was going to burst through my stomach and continued back pain. Requested a televisit with Gastro doc (new one for me down here in DE) end April. He sent me for a CT on my abdomen and blood work but no CA-125. Results were not good for me. Peritoneal carcinomatosis. Biopsy followed - new name Stage IVb ovarian cancer. Port put in for chemo. Then came PET scan and blood work including CA-125. Thought I was going to have cytoreduction surgery with HIPEC. Well, PET showed the spread outside my abdomen. CA-125 was 255. Not a candidate for surgery. I'll be 64 in December. Chemo that started May 14 has shrunk masses in my abdomen, and scatterings outside abdomen have mostly disappeared (unfortunately not all), and CA125 went from 255 to 62 to 47 to 22.

I tell all my female family and friends that if they ever experience similar symptoms, DEMAND an abdominal CT. Don't know if ultrasound is as detailed as CT. Ask your doctor, and when you have more questions, ASK them, and don't stop until you are satisfied. Do get a second opinion. Be your own advocate. My prayer for you is that it is NOT cancer. If it is, hopefully your story will be like Charity P and caught in the early stage. Stay strong.

user2367

i am also not sure if this helps but

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