Symptoms unspecified, waiting for diagnosis

Loo2590

Been having stomach issues since early last year. 54 post menopausal on HRT, no history of cancer in family, smoker. Also had to constantly pee, not like a UTI, but I really had to pee all the time. Had to wake up in the middle of night at least once.

Went to Gyno last March, pap smear fine,, no UTI, examine fine, she blew it off. Stomach was upset more than not.No constipation, occasionally the runs,but lots of uncomfortable feeling in my lower intestines (or so I thought). And my poo began to have a yellow tinge more than not, like 90% of the time. Went through colonoscopy and upper GI all clear. I have palmoplantar psoriasis, which I haven't had an outbreak since 2012. That started to flare up in December and has gotten progressively worse. Then weight gain bloating and pressure in abdomen. Next I started to have what feel like those mild period cramps and pressure and squeezing in left ovary. Also random shooting nerve pain all around my privates including my butt, comes and goes quickly. My stomach feels full all the time.No bleeding, no painful sex.

Went for my yearly in March with gyno and doctor same day. Gyno did examine and said my uterus was enlarged and then she started pushing and and felt pain. She said I need and ultrasound. Went to Doctor same day, told her what happened she felt around my abdomen and said "this doesn't feel right" and ordered a boatload of blood work and abdominal ultrasound.

Bloodwork back last week ( saw the results before seeing my doctor) liver function is way off, glucose is high ( not diabetic ). Had abdominal ultrasound on Monday ( haven't heard results yet) Pelic ultrasound was Thursday. Found two large masses on left ovary. On so large she couldn't see other side. Schedule an MRI for 4-12. She did the CA 125 test and called yesterday with results. Said number was very high and is referring me to a oncologist. Also I had called my doctors office after my pelvic scan and told them her and they Gynocologist need to talk to each other and get on the same page.

So I know. What I don't know is staging but my liver numbers are worrying me ( and the yellow poo) my appetite has decreased. And it seems like everything I eat doesn't digest all the way. I'm worried that its metastasis to my liver.

Waiting now for oncologist appt. and MRI. The actual worse part right now is comforting other people, keeping them positive, even though I know its not good but can't tell them that.

NoTimeForCancer

Oh Loo, I am a visitor from the Uterine page but feel we gyn sisters have to hang together. I am sure it is overwhelming, and I understand you are trying to comfort the ones you love who are stressing out, please focus on yourself. I would suggest seeing if there are any cancelations so you can get the MRI earlier - as my mom would tell me, "what's the worse they are going to tell you?"

Find a gynecologic oncologist who specializes in below the belt cancer and start demanding answers. Unfortunately, you will need to be your own advocate here. Hugs dear one.

MCavelli

So agree —- caretaking others’ need for positivity and hope is such a burden. Can’t help but feel that you’re letting them down. Not sure what the answer to that might be. I only know that I need a space where I can voice MY feelings and concerns without that sense of burden/responsibility. My main reason for checking out support groups.

As for diagnosis and staging, I find it best not to guess. I know so little, and don’t know so much, for me the guessing is an exercise in self-terrorism. And knowing doesn’t really change the outcome, so I’m trying to learn how to live with patience and uncertainty. My attempts to get around them only make things much scarier, without any discernible benefit. That being said, the waiting and uncertainty can be sheer agony, I know. At least you’re now getting proper medical attention. I lost a year to downplaying of symptoms by medical providers and pandemic-related delays in accessing needed services. All water under the bridge, as I now see it.

At IIIC, my CA125 was also very high Fortunately, it’s come down quickly with chemo . One more cycle, then hopefully off to surgery (although there’s much to potentially dread about that, as well; but trying to steer clear of that!)

wishing you well

Loo2590

Thanks girls for the response. I listed symptoms so detailed because I didn't realize GI problems could actually be pointing to your girly parts. When the GI stuff came back clear, I just wrote it off as getting older and needing to loose weight. My stomach was extended because of that. I should have pushed but I didn't know.

My husband had tonsil cancer in 2019. He got through the horrible treatment barely. I really got to be careful with him, don't want to cause stress and a recurrence.

My gynecologist referred me to a gyno oncologist, who was her teacher. Expecting them to call for an appointment tomorrow. I just know how it goes because of my husband. It was scan, doctor, scan, biopsy and the next thing you know they are starting chemo. Only at that point did they say cancer. Everyone kept beating around the bush and we were shocked!

I prefer to be prepared for the worst, no surprises. I do have a question for anyone out there who has been through this. It seems the standard treatment is 3 rounds of chemo then surgery then chemo again. I don't get it. If they are taking everything out why bother with trying to shrink it first? Just get it out.

MCavelli

In my case, the cancer tissue is diffuse and may be adhering to my colon. If they can reduce the cancerous tissue chemically, there is less bowel to resect surgically. In my case, I will have completed at least six cycles of chemo before surgery.

thatblondegirl

Hi, Loo

I’m so sorry you’re having to go through all the waiting and anxiety. Like NTFC, I’m a visitor from the uterine board.

I think MC is right about the chemo-radiation-chemo routine …having to do with making surgery more successful with least amount of damage.

Sadly, exactly what’s happened to you is why so many women are diagnosed at later stages. Symptoms take forever to show up and then it’s easy to confuse them with something else. The only symptom I had was a little post-menopausal bleeding, which got me to a GYN very quickly, and as it turned out it was a benign fibroid in my uterus causing the problem….not the cancer found in and around my Fallopian tube…and elsewhere!

Here’s something I tell myself to remind me not to worry….We live north of Houston. We hadn’t been here 6 months when an idiot rear-ended my husband at 95mph on the interstate. After two 360 spins and bouncing off the concrete median twice his large SUV was totaled. Unbelievably….He was FINE! My point…the likelihood of me dying in a car accident within 10 miles of my home is much, much greater than my cancer coming back and killing me! And I can’t ….and don’t!… sit on the couch and worry about it!

Please take care of yourself and try not to worry too much without more information. We’ll be here for you.

⭕️⭕️, A

Loo2590

Thanks for the input girls. I'm in Dallas. Fortunately like Houston we have alot of good cancer centers. That is really scary about your husband's accident. Houston is crazy busy. Always have anxiety driving through on the way to the coast.

thatblondegirl

Yes! The first time I ever drove in Houston traffic was in 1975 and I thought it was insane! Almost 50 years ago! :))

Glad you’re near good cancer care! Keep us posted as to how you are doing. And don’t hesitate to ask questions!

😎, A

Loo2590

Finally I have my first appointment with gynecologist oncologist tomorrow. Hopefully I will will better have an idea of what exactly is going on. Are they going to go straight into the treatment plan? Even though I haven't had my MRI yet.

thatblondegirl

Loo2590,

I don’t really know what your GO will do or say, of course, but I would think he can’t or won’t do much until he sees the MRI. He needs to see what’s going on, before he can even schedule surgery. It depends on what he thinks your Stage might be and how much of it can be removed with surgery.

The waiting is awful, but I haven’t met anyone in this business who’s in a hurry. You might think…oh, it’s cancer! Hurry!….but I only know one actual person for whom that’s ever happened.

Please try not to be too upset until you have more concrete information. I’ve had my share of CT’s, but I don’t know much about what they look for with an MRI…specifically, because I do know that I’ve also had a PET, and with that thing cancer cells literally light up on the screen like a Christmas tree. I didn’t pay a thing, but I saw the bill was $7000+….which might answer my question!

Let us know what you hear tmo. Prayers to you!

❤️, A

Loo2590

Thanks for the info. I was just curious. I did have an abdominal ultrasound ( besides the pelvic ultrasound) also already that I don't know the results were. I hate wasting time going to appointments with no concrete answers. I'd really they get the info the need first then meet with me. But as you said, insurance has to get their money do I guess I have to put up with it. I don't doubt they will probably do a Pet scan next. I'll update with info as soon as available. Thanks again for the support.