Symptoms, Scared, MRI

Firefly6128

I have sharp, stabbing, take me down to the ground pain that started 2 months ago in my left hip. I have Lupus SLE and told my Rheumatologist about the pain. She ordered an xray. The pain got so bad, I went to Urgent Care. They took an xray, it was normal. Doctor thought it was Bursitis. My Rheum and PCP disagreed. Got an MRI, shows prominent left adnexal cyst (though incompletely characterized) measuring 61 x 48 x 55mm. Seeing GYN in a week and a half. Had thyroid cancer previously. Ovarian cancer on both sides of the family. Also, thank God I had a copy of the MRI because my Rheumatologist only told me about small tears in my labrum and suggested PT and I said what about that cyst on the MRI?!

When the pain hits, it's a 10/10 pain. I had a few episodes where I looked 6 or 7 months pregnant. I can't get to the bathroom fast enough to pee and I pee often. Constipation and Diarrhea. Back pain started in January, severe hip pain started in May. Not much of an appetite lately. More tired. I'm 48, still have my monthly periods and although I've been pregnant, I've never had children. I'm scared.

Why wouldn't the MRI address if it's benign or malignant? Anyone know?

Firefly6128

Also, it noted daughter cyst with it.

thatblondegirl

Hi, Firefly

I’m so sorry you’re in so much pain. Your post has a lot of questions..so I’ll tell you what I think I know. I don’t want to write a book, so I’ll try to be succinct! I’m a visitor from the Uterine Board. I was diagnosed August 2020 Stage II Fallopian Tube cancer, with secondary peritoneal, pelvis only. (I also had a small ovarian cyst, which was benign.) I’m 15 mths post-chemo and doing great!

So…to the best of my knowledge..

A cyst is fluid, not tumor, so it’s could easily be benign.. Cysts could cause all your symptoms if big enough, or pushing on other organs…like your bladder. Did anyone say anything about ascites?

Yes, MRI’s don’t show benign or malignant. On a PET Scan cancer cells literally light up like Christmas.

You can click on my screen name and read my story. You’ll deduce that I wouldn’t let a regular GYN do my surgery if I were you. If there’s ANY chance you have cancer, you need a GYN ONC to do surgery, to avoid what happened to me.

With your family history, and the fact that you’ve never carried a child (sadly, me either, and turns out that gives you an increased risk for GYN cancers. It has to do with overall fewer menstral cycles in your lifetime), I think you should have genetic testing for the BRCA genes to assess your risk.

Insist on a CA125 test. A simple blood test used for ovarian cancer diagnosis and monitoring. It’s not a good indicator for some (like, me), but can be a good indicator for others.

Your symptoms COULD mean cancer, but try not to panic until there’s a real reason! Many, many GYN problems are NOT cancer.

Other unsolicited pieces of advice… Fight for urgency. No one will be in a hurry, but you. Insist on answers to your questions. Don’t be afraid of second opinions.

I’m hoping for the best for you! Please come back and give us updates.

😎, A

Firefly6128

https://csn.cancer.org/discussion/comment/1698307#Comment_1698307

Hi That Blonde Girl,

Thank you for taking to the time and effort to respond to me. I greatly appreciate your insight and shared knowledge.

I'm so terribly sorry for everything that you've gone through. Going through a cancer diagnosis is already so much and you had a cat and mouse game about something so serious with your health with that Gynecologist. I hate when the medical community fails us. I've actually read so many similar stories, unfortunately, of not being taken seriously and lack of sense of urgency. I have had to be a big health advocate for myself, as well. Being sick and fighting for yourself at the same time is truly disheartening. I do wish I could see a specialist prior to a regular OB/GYN. I don't want anything missed or pushed aside. I cannot decide if I should go to the ER or not. I've been waiting for my PCP to call me back about explaining the results since Rheumatology didn't really... but I haven't heard from him, which is odd because his communication is always excellent. I've been his patient for 20 years. I was hoping for better direction from him. I'm not sure what to do next. Feel lost and a bit alone.

Firefly6128

@thatblondegirl Btw, congratulations on your remission!!!

thatblondegirl

Dear Firefly,

Thank you so much for your kind words! And you’re very welcome for any help I can provide! When I was first diagnosed, I found this site and learned so much! The ovarian board is usually pretty quiet, but I check it regularly. The uterine board ladies invited and welcomed me to their board. They have been a godsend! It meant so much to me to have a source of real women with experience (and hope!!), who could answer my questions and offer love and support.

As to GYN, I think you have to see one to get a referral to a GYN/ONC. Not for insurance purposes, but because they are so specialized they’re not available on every corner. They’re ubiquitous where I live, but that’s not true everywhere. GYN is fine for certain things, so my advice about them is mostly about not letting one do a surgery.

I just don’t know what to tell you to do about your pain. I feel so bad for you! At least if you go to the ER they might be able to get you some temporary relief. I don’t know how much experience you have with ER’s, but expect that you might have to be patient in getting them to believe that you’re not some drug addict just trying to get a “fix.” They see that so much, that you can’t really blame them for being leery of it.

And here it is, Saturday night, and you can’t hope to hear anything from either of your doctor’s until Monday. You might consider showing up at your PCP’s office the minute they’re open on Monday and demand to be seen. Long story…from over 20+ years ago…another miserable GYN. I was going through menopause, had been on an estrogen/progesterone pill, and he says, “I’m going to give you this knew drug and it will be better!” Stupid me…I went along with it. It was another 3+ weeks until my next appointment. I was furious by then! When I finally saw him, I told him, “I’ve been calling this office multiple times per week for THREE weeks, CRYING, begging for someone to help me! That new drug is horrible and if I keep taking it, NO ONE who’s ever loved me still will!” My emotions had been all over the place for weeks! Nightmare!! He was so mad….at his staff….and he said to me, “ Don’t EVER let that happen again! You have a problem, you come right up here, announce to the lady out front you’re coming in, and you come right back here and I’ll see you!!” I’ve never had to do what he suggested, anywhere…. but I’ve never forgotten that it’s a viable option! You’re experienced with advocating for yourself! Go for it!

I’ll be thinking of you. Let me know how you are,

Hugs ⭕️⭕️⭕️, A

Firefly6128

https://csn.cancer.org/discussion/comment/1698322#Comment_1698322

Good Morning That Blonde Girl,

Thank you again for your support and understanding. I understand exactly where you are coming from when we are just given medicine (new) and just left to deal with severe side effects and needing that phone call/visit. It's very difficult to deal with! I almost wish doctors still made "house visits." I'm too sick to come to you, please come to my home and help me. You are strong and a survivor in many ways. And, an encouragement to others. Thank you for paying it forward :)

Well, I have some updates to report. On Saturday evening, I did up going to the ER. I was a little concerned that I would be "brushed off" or not understood. Luckily, I got a great nurse and a kind and compassionate woman ER Physician. I was sent for an US of the pelvis and internally. There is a lot on the report but the biggest things are that it mentioned that I have a 6cm Endometrioma and another 2cm cyst (unsure what type) within that same ovary.

I find this interesting, because as I mentioned, I am 48 years old and have never been diagnosed with Endometriosis, never had a lot of the symptoms and pap smears have been negative my entire life. From my understanding, this is stage 3 or 4 of Endometriosis.

I then contacted my PCP twice on Monday, by MyChart message and by phone. It's now Tuesday (today) and I was getting really irritated. I felt so sick lately with nausea and other GI symptoms and just plain horrible. I contacted the general OBGYN's office, as well. They had no openings before my appt next Wednesday. I was feeling defeated.

Miraculously, I received a phone call from the RN at my PCP's office. She totally apologized for the delay. She went on to say that my doctor reviewed the MRI and thinks I should see Ortho for the small tears in my hip. I immediately said that I ended up at the ER on Saturday night and had an ultrasound. Can my doctor please review it and I feel so sick. She also said, "What would you like for him to do?" I was like, I would like his opinion and direction. I cannot get into a regular OBGYN for another week plus and per the ER doctor, I am most likely going to need this removed. So, she called me back soon after with a referral to an OBGYN Oncologist! I called them and the patient advisor took all of the info and told me that the nurse will review and call me back to ask more questions and set up an appointment. The nurse called, asked zero questions and set up an appointment for next Thursday.

I mean, "Hallelujah!" All of that just to get an appointment. This process really needs to change. I feel like so many people have nightmare stories. I do wish they did a CT scan, because I read that the ultrasound is around 75% correct. Although, I also read that removing it and sending it to biopsy is really the only true result.

Btw, how many doctors are going to miss this prominent cyst?

Thank you for reading my book, lol. I appreciate your support. It's easy to feel alone.

Sincerely,

Firefly, OOO

thatblondegirl

Dear Firefly,

Thank you for appreciating my help! Especially because this board is so quiet, I really do want to try to help when I can!

WOW! A lot has happened…and you’re headed in the right direction! I’m glad you went to the ER and they were good to you. Thank goodness! And your PCP getting you an appointment with the GYNONC is amazing! Good for you fighting for treatment! I’m relieved that a lot of your pain is probably associated with your hip. Now, don’t be surprised if they seem to proceed in slow motion at the ONC’s office. A LOT of GYN cancers are pretty slow growing and a few weeks won’t change much in the big scheme of things. It matters a LOT to you, but remember this is what they do every day, and their refusal to panic probably is the best thing for you emotionally!

When you go to that appointment, take someone with you if you can. The second set of ears are really good to have. I always took a list of questions. I know they thought, “Oh…..here we go! She’s got her list!” Try to find out who to ask for when you call with other questions. And then try to write down the answers as soon as you can after the appointment. It’s so much information, and I don’t know about you, but my short-term memory is horrible when I’m under stress! You can read threads on these boards about good questions to ask…through all parts of the process. Remember, you don’t have cancer until they SAY you do! Try not to worry about what hasn’t happened! Be sure to ask about the CA125.

As to the endometriosis, I had it for years…and so much of it that I never could conceive…well, it was one of the reasons… but I was always completely without symptoms, so that does happen.

I will be anxious to hear how you are and how your appointment goes. Keeping you in my prayers.

❤️, A