Im in the waiting phase, and Im terrified.

RandoSchmando Member Posts: 4 *

Im new here, so I apologies if this isnt how things are done. But I really need some help from anyone who is willing to listen. Please excuse the text wall.

So, a little background information ( sorry for the information overload): 1) I got my first period when I was about 9 (early periods are common in my family)...2) my grandmother was diagnosed with ovarian cancer about 6-7 years ago (still fighting and thriving!), and so many people in my family have various types of cancer...3)after about a year of begging my mom to take me to the doctor because of extreme pain on the right side of my hip and my grandmothers (then) recent diagnosis I found out I had bilateral ovarian cysts at the age of 15-ish. The doctor tried to convince me that it was my anxiety producing symptoms and I was being attention seeking, but an ultrasound showed several large cysts on both ovaries with one on my right ovary already at the 5cm mark...4) When I was 18 I moved out to live with my now fiance who took me to the ER due to a spike in the pain and it was discovered that while most of the cysts went away two were still with me: one 6-ish cm (left ovary) and one 7-ish cm (right ovary)... 5) My right ovary has always been my more painful side, my periods have always been excruciating, any cramping during my periods causes me to collapse where I am standing and keeps me down anywhere between 30 mins to an hour until the cramps subside, and my periods are sometimes irregular where (sorry for the TMI) my pads will stay completely clean but when I go to the bathroom clumps of blood will come out and be on the toilet paper.. Like it refuses to come out normally and only in clumps, but then other periods are completely normal (Ive been having this issue for probably 7 years now)... 6) I do not bleed after sex but I have had one occasion where I spotted for a few days nowhere near when my period was meant to start and it has seemed to I guess kickstart my period a few times.

Where Im at right now: I am now 20. My fiance proposed to me in april of 2022, and we plan to elope on the same day in 2023. My in-laws bought 20 acres of land where we're in the process of building our houses on (about to start in december), and we really want to try to have kids (goal of 4! <3) right after we elope. Thats still the plan as Im trying my best to remain optimistic, but recent news from my doctor has slammed the brakes on everything and has me terrified. My amazing fiance has been helping me fight to get these dang cysts removed, and we kept being ran in circles by doctors with one useless appointment after another each being 1 month apart and going nowhere towards the actual surgery. Then, I got into a car crash (as a passenger) about 2-3 months ago (all are okay!) and the seatbelt really hurt my ovaries. Went to the ER right after the crash scene was handled, fought the doctor for an ultrasound because I was worried about a ruptured cyst, and the ultrasound showed the right cyst has grown to around 12-13cmx10cmx9(ish)cm (since the 7cm size only one year prior). They scheduled me to see a gyno about a month or so out, but I called the different offices myself and got scheduled within a couple weeks. The gyno looked at my ultrasounds, said they are fluid-filled which she said is good, pushed on my pelvic area and said its a good sign that the pain is more intense as shes letting go than when she is pushing in, and told me that she would schedule the pre-op surgery to remove the cyst for 5-6 weeks away with the actual surgery being a week after that. But before I left... she ran the dreaded CA125 test, which I didnt know was a thing before now. Ive read a few things on this site, and apparently the general consensus is screw that test and its not an accurate determination for ovarian cancer...? Im not going against that and that does make me feel better, but my results came back slightly high and worried my gyno. Only slightly, but still high. I believe it was 34 or 35. I feel awful for being worried about that number after reading some of the results other women have gotten, but I cant help feel my anxiety rising because of it. Any blood tests Ive had (I used to get them frequently due to an ED and other health issues) have always shown normal white blood cell counts, so thats I good sign, right? My gyno said she wasnt too worried but that the new potential for OV made her want to consult with an oncologist to see if they wanted to perform the surgery themselves instead of her. But now my gyno is saying the oncologist believes my cyst is high risk, wants to run more blood tests, and its all pushing back my surgery date even more. I understand the need for them to be sure, but after begging all my past doctors to test me for 5-6 years now Im getting worried sick and frustrated that they wont just take it out and biopsy it after its out of me. Do a fully open abdominal opening, I dont care, just take out the cyst and take out that whole ovary if you have too... yknow? If Ive had this growing inside me for this many years and doctors have ignored me, what if its gotten to late stages that kill me when Im barely 20? Right before Im married, can have kids, can live my life, and can enjoy and give my husband a love-filled future? Im so angry at my past doctors, myself for not pushing this hard sooner, and regrettably at my current doctors for seemingly (even though I know its not true) not caring about my health as much as I and my fiance do. Im trying so hard not to focus on the negative, not to search the web and worry myself more, not to assume I have cancer before the result are back... Im trying to tell myself all the things that point to it not being cancer, and I know I have to stay positive and just get through it even if it IS. But the waiting while things move at a crawl is eating away at me.

I guess what Im looking for here is... What do yall think? I know its unlikely you (whoever may read this) is a doctor, but Im asking anyone who may be in a similar position as me, someone who has beaten it, or someone who is going through it currently. I know the general advice is you shouldnt worry until you know, but if anyone can give me words of encouragement, advice, coping tips, what you think my odds of having it might be if you have an opinion on that, or anything else. Please let me know. My fiance of course cares, loves me, is scared himself, and tries his best to make me feel better, but theres no way I can really express or show him how I feel right now. His mother beat thyroid cancer when he was young, his father is battling brain cancer (10 years strong!), and our dog just got diagnosed with cancer literally yesterday, so theres just a lot of emotions revolving around cancer spinning in our heads right now. Any words are appreciated right now.

Thanks for anything.


  • RandoSchmando
    RandoSchmando Member Posts: 4 *

    Oh a little bit more medical/symptom information if that helps anyone give me advice:

    I constantly feel nauseous, have HORRIBLE back pain that keeps me down most days, have extreme hip pain mostly on my right side that affects my walking at times, and light-headed/dizziness frequently. This has all been going on for years, but my nausea, back pain, and hip pain have all ramped up significantly in the recent year or two. I though the dizziness and occasional fainting was due to my history of iron deficiency, but my recent tests have shown that my iron level are normal now and Im still dizzy at time. Ive also gained a significant amount of weight (Ive always been around 130-140lb at 5'4" and am now 216-218lb) in the past 2 years, which is the time my "problem cyst" has grown at an alarming rate. I really dont believe at least all of my weight gain has been caused by the cysts because I did have a period of time where fast food became a big habit/problem, but maybe the fast growth of the cyst is because of my weight gain...? I have no clue... But those are some symptoms I forgot to mention that may be important.

  • cmb
    cmb Member Posts: 988 Member
    edited September 2022 #3

    Wow, you’ve really been through the wringer these past few years! I’m so sorry that it’s taken so long for you to find doctors that are finally taking all your symptoms seriously. And though it’s delaying the surgery, having a gynecological oncologist is definitely the type of doctor you want to do the operation, especially if there’s any uncertainty about the cause.

    I know that it’s hard to be positive when your family and your fiancé’s family have experienced other cases of cancer. And now your poor dog too! But hopefully it will be just a few more weeks and then you’ll finally know for sure what’s going on.

    You’re right that none of us are doctors and we can’t offer a medical opinion about all you’ve experienced. But, based on what I learned from my cancer experience and those of other members, I would say that there are two factors working in your favor. First, while it’s not impossible for your current symptoms to be due to cancer, you’re much younger than the norm for a gynecological cancer to occur. And secondly, you’ve been experiencing problems for several years, which can be quite common with fibroids or cysts. However, uterine or ovarian cancer doesn’t usually take years to manifest itself.

    You’ve been very strong dealing with these serious issues for a long time. And I understand why you don’t want to worry your fiancé more any more than he already is right now. But please feel free to come back here with any other questions that you may have regarding the planned procedure, etc. Regardless, we’re also going to remain positive until you have a definitive answer, one way or another.

  • RandoSchmando
    RandoSchmando Member Posts: 4 *

    Thank you so much for reading and responding. I know it was a lot of text... I really appreciate the reassurance. Im just not sure what the think or how to feel right now. I guess I may just need someone to talk to that understands the swarm of thoughts? I dont know. But thank you <3 Just getting a response from someone who understands actually makes me feel a little better.

  • RandoSchmando
    RandoSchmando Member Posts: 4 *

    Update: my labs to further test for OV have been scheduled for monday, only three days away. Fingers crossed... will update here what the results are.

  • cmb
    cmb Member Posts: 988 Member

    Good news that things are moving along now! Do let us know the results when your learn them and what the next steps will be.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,246 Member

    Oh my Rando - so much going on. Having a gyn cancer is unlikely for someone so young - however, anything is possible and good for you to find answers. It IS overwhelming with everything going on, so please try to take a breath.

    Nothing you have posted is over the top for any of us - it is a safe place for you and no doubt others here have heard/had/seen it as well.

    Please let us know how all the tests go.

  • Kim7557
    Kim7557 Member Posts: 3 Member

    Rando - nothing you say here surprises anyone. Please try to breath in and out and put one foot in front of the other in this agonizing process of getting a diagnosis. In the small spaces in between worrying, try to do or say or listen to or touch something that brings you joy. It will be really hard, but even if it's only for a few seconds and it makes you grin that's a few seconds where all of this doesn't have you tied up in knots.

    I've had two primary cancers in the last six years and have sort of been living under the spectre of cancer all that time. I have now been diagnosed with a metastisis of my first cancer and I've decided I can't waste another minute worrying about the what ifs and prognoses. I have to choose to use those seconds of joy to keep me in the here and now, in the positive present.

  • 8675309mj
    8675309mj Member Posts: 20 Member

    I have some similar symptoms you have but I’m older. The convincing was curious how you are now? Hopefully they found out something. Please post your update here if you don’t mind. Take care.