Did you have warning signs before being diagnosed or was it found incidentally?

starrynight5626

I am a post-menopausal 52 y/o and a mass on my ovary was found incidentally when I was sent for a CT scan after a visit to urgent care for stomach pain. The pain ended up being diverticulitis, but a fibroid and mass showed up on the scan. They couldn't be sure it was a mass so went for an ultrasound and they still weren't sure.

Went for an MRI in late June and it showed it to be a 3.2 cm endometrioma along with a 1.5 cm pedunculated cyst. The OB/GYN I saw the week after the MRI said they could do a laparoscopy and take it out as that's the only way to tell what it is or she said, since I don't have any pain or symptoms (the only pain was when I was diagnosed with diverticulitis) and she believes a low chance for cancer, that it could be monitored by getting an ultrasound in 3 months and then again 6 months after that and see if it grows. If it grows, then have the surgery, but if it stays the same or shrinks then we can discontinue monitoring it after a year.

I opted for doing the ultrasounds. My 3 month one is coming up in a couple of weeks. If it's the same size (between the ultrasound, CT and MRI the mass was measured between 3.2 and 3.6cm), I am unsure what to do. I've read so many stories online about people who had no symptoms but when they had surgery they found they were riddled with masses.

I am not sure if I should just go ahead with the laparoscopy regardless so I don't have to keep wondering or just monitor it.

I am curious to find out how people on here were diagnosed and if they had any symptoms prior.

beth2924

Starrynight5626,

I went in for bleeding after menopause, my pcp scheduled an ultra sound that found a "cyst" in my left ovary. Which prompted an appointment for a biopsy. Results came back with "abnormal" cells (not cancer but could become cancer). Since I was 60 the suggestion was a hysterectomy for endometriosis. Lab report after surgery came back with both ovarian and uterine cancers.

I can't help with you with the surgery or not question, that has to be your call. I asked my doctor what she would recommend if it were her mother. Then we talked about why. Ultimately it comes down to the value of peace of mind versus recovery from a potentially unnecessary surgery. Don't forget to talk to your insurance too, it should be the case, but often finances influence our decisions.

In my case, since the offending lady parts were gone before we even knew about the cancers, my prognosis is good. We are doing six rounds of chemo to "clean up cells that may have spilled during the surgery".

Beth

starrynight5626

Thanks for responding. So other than some bleeding you had no signs? No pain or anything? I'm glad your prognosis is good!

Insurance isn't an issue for me as it's covered. From what I've read online, the recovery time from a laparoscopy is a week or two. I can work from home if I need to so that's not an issue. I just have a hard time justifying a surgery if the doctors don't seem to think it could be cancer. I realize they don't know 100% until they take it out but I just dont' know. I guess I can sit here and fret about it or I can get it done and know for sure.

beth2924

https://csn.cancer.org/discussion/comment/1717967#Comment_1717967

Starrynight,

In my case, it was just bleeding. In fact, I wasn't even going to mention it to my doctor. I started spotting on a Friday. I had what I thought was a follow-up for a cough the following Monday, but the appointment was actually my annual well-check-up visit. She asked about doing a pap (I'm 60). I told her about the spotting and she scheduled the ultrasound. We shouldn't ever spot after menopause. At the time of the surgery, everyone involved thought it was just endometriosis. Even when they were inside removing the uterus, ovaries etc. the doctor didn't see anything that looked like cancer.

I am not saying it's the right choice for you, but for me, it was the best choice, even though we didn't know it then. Whether it's right for you depends on so much- your age, medical history, general health, etc. My best advice it to ask lots of questions and get a second opinion. Either way, it's a big decision, the better informed you are the better.

Best luck to you,

Beth

Isabellemorna

For me, I thought it was gas. It would come and go. Then, I would bloat up. An acquaintance suggested it was gallbladder or appendicitis. I'm terrified of needles and hospitals and it took me 4 attempts before I finally made it to the ER. A triage nurse told me to "go to ER right now!!!

I started spotting, and it got worse. I was diagnosed at the ER. Doctor said that I had a "Huge Cancerous Blob" . The radiologist report said it was a very large pelvic mass that obscured the uterus and ovaries. Possibly cancerous. ER doctor gave me a follow-up oncologist that was very far away, and never answered the phone. Also, no voicemail. I found my own gynocolo oncologist, and left a message to have my results sent in and had an an appointment that Monday. I was shocked that when I arrived, all my results had been sent in and the doctor had already looked them over. The only information I found before I got there, was that if there's Cancer, that if you have "Everything removed" then that's the end of it, right then and there. Otherwise, the parts you didn't remove might possibly develop cancer later on and require another surgery later on. Well. If I had to have surgery, I wanted her to take everything at once. I wanted to be done with it, and not be worried about it again. Like I said, I'm terrified of needles and hospitals, and this way I also avoided all the biopsies and other tests, and didn't want to take a chance on a future surgery. When I got there and she said I had to have surgery, I told her fine. Remove everything. I don't want to chance future surgeries, and have to stress out and get checked all the time, etc. she was pleased about that. She didn't have to waste time with a gazillion tests, and long discussions about it with me. I certainly didn't want to hear about all the little holes taking bits out for testing etc. she did say that it was a very large pelvic mass and it wrapped around the front and back side of my uterus and ovaries, and would've been a major mess to try sorting it out. She would've sent me upstairs to get ready, but I had an infection going on so she let me finish off my antibiotics. I didn't see her but once, briefly after surgery where she told me they sent it to the lab for testing to see what had cancer and what didn't etc...... ?? Does it even matter? It's out. Not my problem anymore, right?! ????? She didn't have time to explain anything further, and was off and gone, and I haven't seen her since then. She was supposed to come see me a couple more times, but she never came back.

So.... Now here I am, trying to see if I can get any information about What could possibly be wrong if something they took out had cancer, and if so, what kind of chemo, or other stuff might be required in my future...?? I don't really want to Google search it because I run into all these "I'm about to die" stories. So. Does anyone have any information about a possible follow up treatment plan? I heard they have pills, and different types of holistic care available. Chemotherapy takes a lot out of a person.

beth2924

You definitely should have the results from the tests on what they removed. If the doctor you saw isn't getting back to you see if someone else in the practice is available, or get a referral for another doctor and have the results sent to that person and have them explain everything to you. You have a right to know. If the doctor is at a bigger practice or a hospital there may be a patient advocate you could contact. In my case, the mass wasn't all that big, but the adhesions from a previous surgery and the endometriosis tied everything together. There was no way to get the ovary out without rupturing it, which could have spilled cancer cells in my abdomen. Also, the uterine cancer had eaten through the uterine wall, so we have no idea how long those cells were being released into my abdomen. Six rounds of chemo was recommended to be sure we killed any cells left behind. The odds of one or both coming back are 50/50, so we watch it carefully.

Beth

Jojo62

I have so much to say. I have had hip and back pain for over 1.5 years. I had MRI and saw many Drs. None could find a reason for my pain. Just that I’m 62 and probably degenerative changes. Pain continued. No bleeding but issues with bowels. Fast forward 11/24. Stomach pains so I went to ER. They did CT and saw tumor on my ovary. Same side as pain hip back. Told me to go to OB ASAP. I did. They did biopsy no good result. Did a D&C and decided I need a complete open hysterectomy. Stromal Sex Cord Ca. Very rare . My case sent to the tumor board today and they decided on hormonal therapy vs Chemo. Not feeling really confident in this decision after all that has happened. I joined this group to see if others are experiencing the same. Thank you for listening. ❤️

beth2924

I have no experience with your diagnosis, and even if I did every case is unique. I can share strategies. Ask lots of questions. Make sure you know all the options and why the recommendations being made are the best choice for you- your doctor should be able to lay out all options and explain why they have suggested what they did for you. I can't emphasize FOR YOU enough. Your cancer, your life choices, your treatment plan, your level of comfort with the plan.

cmtucker15

I am sorry for your frustrating visits and missed diagnoses. I also have a history of diverticulitis and know of the pain involved. Thus, when faced with new gyn symptoms, they seemed innocuous. My first symptoms were easily explained as the beginning of menopause and thus somewhat ignored. The strangest and most confusing symptom was what I thought was bladder leakage. The fluid was tested and tested for months, as my doctors tried to figure it out. Finally, a local (Detroit) gynecologist said this was a symptom of fallopian tube cancer, but that she didn't think I had that - I never heard from her again. The symptom lasted almost a year and finally stopped after my first round of chemo, as the "leakage" was cancer cells. Luckily, I was able to get in to see a fabulous gynecologist in Cadillac, MI, who ran several tests and referred me to a gyn onc physician in Traverse City, MI. My advice is to listen to your body and trust your instincts/worries. If your care team is not listening to you, find another team. They also should be able to run other tests before the hysterectomy. The ones that pointed to cancer for me were: CA-125 blood test; an endometrial biopsy; and a CT scan.

starrynight5626

https://csn.cancer.org/discussion/comment/1720224#Comment_1720224

Hi there. So when you say bladder leakage, do you mean like thinking you are done peeing and then when you get up more urine comes out? Or do you just mean in general walking around and then you have the leakage?

I've had the issue for the past year or two of me getting up in the middle of the night with, not a strong urge, but knowing that if I don't go pee that I'm not going back to sleep. When I get out of bed (possibly TMI, but I sleep in the nude) and make my way to the bathroom, I feel a trickle of pee coming down my leg. I have no sensation of peeing until I feel that wetness. Then in the morning I can see a small trail of pee to the bathroom. I don't know if that's just aging or something more.

I saw my GP for my annual exam last month and asked her her opinion of what I should do about the cyst. Unfortunately I didn't even think to bring up the bladder thing with her. She said she would opt for just monitoring it since my CA125 was good and I don't have any other symptoms. I have my 3 month (well actually 4 month since I had to push it back a bit) pelvic US in two weeks. I'm sure there probably won't be anything alarming there either. It will be 1 year in April and at that point if nothing has gotten larger and no other symptoms appear, then they will stop monitoring it. I'm not sure how I feel about that.

cmtucker15

It took me months to sleuth out the timing of the leakage. At first, I thought it accompanied the urge to pee, but actually not. I read a book on the feminist's approach to menopause and made my way to the incontinence section and then was sure it was a UTI. When I was tested for the UTI, it was negative, but they found another bacterial infection and sent me to pelvic floor PT. I went on multiple rounds of antibiotics to no avail. Once my pelvic floor muscles were strong (6 weeks of PT), I still had leakage, so that's when I thought to use a tampon, and lo and behold, the leakage stopped! So we knew that it was not urine, even though it looked like urine, and the other tests came next. My pelvic ultrasound revealed a cyst and a degenerating fibroid, and there was no specific concern for cancer at the time.