Delwyn (delwyncole) wrote in vaginapagina,

Ovarian Cancer at 36

I've never actually posted here, though I've responded to a few posts that other people have made, but I'm scared and upset and when I looked at my online world, this was the only place that seemed reasonable to turn. I'm going to stick this behind a cut, because it might be a little long, and I don't know if any of it could be triggering for other members. I guess I'm mostly looking for support and any personal experiences, not just with the cancer itself, but with the other part that is killing me, the total hysterectomy and finally being forced to face the fact that I will never have children that are biologically mine.

I'd been tired for a few weeks, and looking back I can also see that my appetite was diminished and I had some bloating (which I attributed to my upcoming period). I had other things that are generally seen as possible symptoms of ovarian cancer (facial hair growth, acne, etc), but I've struggled with those things since puberty, so they didn't strike me as symptoms of anything. Then, last Sunday evening, I just felt bad when I went to work. I was exhausted, even though I'd slept for like 16 hours that day. I had indigestions, and a lot of gas, and some lower back pain. I went to work anyway, because I figured I might as well be miserable and get paid for it as to sit at home and be miserable. I didn't feel any better on Monday night. I'd meant to put in a call to my doctor that morning, but instead I came home and crashed (I work graveyard shift). So I just went to work again. Even though pretty much my whole body hurt by that point. Tuesday was my day off. I was feeling a little better, so I decided to take some tylenol and lay down for a little bit. I felt better when I woke up, not great, but better, so I opted out of going to the doctor that day. Then Wednesday morning I felt a lot better so I didn't call the doctor then either.

I should mention that I live with my parents for the benefit of all of us. My Mom just had a total hip replacement with bone grafting, and I've been helping a lot with her care. She's also a retired nurse. Anyway, some members of our church have been bringing over dinner to help out with Mom's recovery. I went out to get the food that a friend had brought over, and by the time I made it back to the house I could barely breathe I was so short of breath. I told my Mom I'd be calling the doctor in the morning for an appointment, but she wanted me to go to the ER, so I finally agreed to that.

At the ER, I got a breathing treatment, urinalysis, blood work, and both chest and abdominal x-rays. The chest x-ray showed fluid on the lung, so the ER doc ordered Chest and abdominal CTs with and without contrast. The CT showed a 26cm x 13cm mass on my right ovary. He came back and told me that there was a mass on my ovary, and there was no way at this point of saying what exactly it was, but that he was going to see about getting me admitted to take care of it.

When the hospitalist came in, he was not very reassuring. He said, "We are admitting you to the hospital for a mass that is almost certainly cancerous, unless the radiologist is stupid. Sometimes they are." So now I'm facing the idea that one of two things is happening. I have an utterly incompetent care team, or I have cancer. I was scared to death, and I was alone. Mom was supposed to stay home for 3 weeks after surgery. It had been not quite 2. Dad had been up for 26 hours, so I sent him home after he dropped me off at the ER. I was terrified. I called my parents and didn't get an answer, so I left a message and called my brother and told him that I was being admitted and that it might be cancer.

The next day they drew more blood for a CA-125 test, I think that's what it is. The doc said the high end of normal is 35. My result was 519 which is indicative of cancer. I had consults with an OB-GYN and an oncologist, and also dealt with a much more pleasant hopsitalist. They did a sonogram, the results of which confirmed that it wasn't a massive ovarian cyst and that the character of it was more indicative of cancer than a benign tumor. They also did a thoracentesis to take fluid out of my chest cavity to help my breathing. They pulled 2400 mLs off, which is roughly the equivalent of a 2 liter bottle of soda plus a can of soda. The fluid was bloody, which they told me was also indicative of cancer, but I still don't have a firm diagnosis. They sent me home from the hospital last night, and are referring me to the University of Kansas Medical Center to meet with a Gynecological Oncologist. I don't know yet when that meeting will be. There are apparently some personal issues with the doctors there right now that are making scheduling something difficult, but hopefully soon.

They said they can't guarantee what they'll recommend, but that typically in a case like mine, they will do a total hysterectomy (both ovaries, uterus, and cervix)cut out as much cancer as they possibly can from any place else it may be attached in my abdominal cavity, and also remove the fatty membrane that hangs down in front of the abdominal cavity (because cancer cells apparently like to hide in there). They will also take samples from all of the surrounding lymph nodes at that time. The tumor tissue will be tested and a treatment plan will be devised based on what kind of cancer it is. Apparently there are roughly a million different types of ovarian cancer. That plan will almost certainly involve at least one round of chemotherapy, possibly more. It may also include radiation, or even future surgeries.

The doctors have been cautiously optimistic to this point about my prognosis. They say I'm young and strong and in otherwise good health, so that helps. They also said that my age means there's a strong chance there's a genetic link to my cancer, so they'll be doing a complete genetic work-up to see if I carry any known gene markers for ovarian cancer and determine if my Mom and sister should be tested for those markers (which apparently also increase risk for breast, endometrial, and colon cancer). I'm also told that the treatment has gotten better by leaps and bounds. I'm still scared, but honestly I think the cancer part is the part that's bothering me the least right at this moment.

I'm uninsured, and I've been at my job less than a year which means that I don't qualify for medical leave, which means I will probably lose my job before this is all over. I'm still working right now, but I don't know how long I'll be able to do that. My job does provide short-term disability insurance, which will be a help, and I can take a 6-week personal leave of absence, but I'm told I'll be pretty lucky if that would cover the time I'd need off after surgery, and who knows if I'll be able to work while I'm on chemotherapy or not. I'm terrified of the financial consequences of this illness.

And I cry every time I realize that there is no shot of my ever having children. Intellectually, I know that I'm reaching an age where pregnancy would be high-risk anyway, and that my mother and grandmother both had extreme difficulties carrying a child to term (Mom is an only child. Grandma had many miscarriages. I have a sister and Mom had 3 miscarriages between our births. I was six weeks early. My sister was sixteen weeks early), so chances were I wasn't going to have biological children anyway, but it's still just killing me. I know there are other options if I really want a child. I know there are surrogates and adoption and the foster system, but some part of me was still holding onto a dream of one day giving birth and holding my infant child in my arms after.

So yeah. I don't even really know what I want to get out of making this post. Support I guess. Advice if anyone has it. A shoulder to cry on. Someone willing to talk about their own experiences with any cancer, but especially ovarian, or with this realization that you're never going to carry a child in your womb. Anything else that seems like it might be helpful, I'm glad to have you say it. I don't even know what I need right now. I'm just entirely overwhelmed. Thank you all in advance. I love this community and your kind and loving atmosphere. I hope you can help me now.
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