Not yet a definitive diagnosis...hurry up and w... - My Ovacome

My Ovacome

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Not yet a definitive diagnosis...hurry up and wait.

mogwaicat profile image
7 Replies

I'm 36 years old and live in the American midwest. I'm a nurse, currently working in community health as a medicare/medicaid case manager helping members navigate the labyrinth of their insurance and find doctors when they need them.

That said, I should have known better. I had painless rectal bleeding for a few months before I finally got it checked out. My doctor referred me to a colo-rectal doctor immediately and I was booked for a colonoscopy. Unfortunately, due to my history of gastric bypass last year, I couldn't drink the prep as fast as I needed to and my bowel prep was sub-optimal. She didn't see the mass, but thought she saw bleeding hemorrhoids. She referred me to another doctor in her practice who does the newest surgery for hemorrhoids. The prep for that was back to back fleets enemas, and she found the mass in my rectum while exploring prior to the surgery. Sooo...instead of a surgery, I got a biopsy, lab orders, and various scan orders. I got to wake up from sedation to 'We found a mass in your rectal area, call in one week for biopsy results.'.

Both of the colo-rectal doctors have been nothing short of amazing, they've both called several times to make sure I'm alright through this process. When the biopsy came back, the pathology was a bit vague. Low grade serous carcinoma of gynecologic origin. I was immediately referred to a gynecologic oncologist and the slides have been transferred into his care to be reviewed again.

My CAT scans don't seem to have much useful information, but the oncologist scared the holy bejeebus out of me by saying 'You have dots on your lungs.' He followed up quickly by saying they're too small to biopsy and could very well be scar tissue from childhood breathing issues...but his delivery left a bit to be desired!

I had my pelvic MRI done yesterday morning, and I'm still waiting back for results from all the various labs the oncologist ordered. He's almost certain this is ovarian in origin, but we don't have a complete game plan yet. I go back to his office Tuesday for a sort of 'introduction to chemotherapy' class where all the newly diagnosed can ask questions and see the infusion center and staff.

With all this waiting my brain's been like a hamster spinning its wheel. I know just enough to scare myself in the worst ways, and the concept of the surgery I know is down the line only made it worse. I don't have children, never really wanted any, but now that my conscious decision has been turned into a physical impossibility...I broke down into an ugly cry for an hour. It's not that I want children suddenly, I just mourn the ability to continue to make those decisions about my life and body myself.

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mogwaicat
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7 Replies
Caroles1 profile image
Caroles1

Hi luv,

I'm older than you and have kids,so I'm not in the same position as you but it's fine and OK to cry in no matter what position or place you are in, in fact it would be more worrying if you didn't.

The worst thing is the waiting and ,trust me, when you have a plan in place, you will feel much better and more positive.It really isn't as bad as you think it will be,I am 18 months after chemo and doing fine, the biggest coward you could find too.

Take a deep breath and do some things that make you happy until you go,

Let us know how you get on

Carole xxx

TinaB1 profile image
TinaB1

Hello there .. It's a tough place you find yourself in. First of all though, you may find that the lung issues are separate from what else is going on and aren't related at all. It's easy to get carried away by the imagining of all kinds of things. That's what this disease makes us do sometimes.

To me, you have two separate but related issues going on here. First, there's the possibility of there being cancer in your abdomen. That's very hard to deal with in the first place.

The second thing is the fertility issue and feelings surrounding this can be so strong that they can eclipse everything else almost when you're already trying to get to grips with a recovery and trying to see a way forward.

Ovacome has a booklet which was written in collaboration with other Ovarian charities and women themselves which is specifically for younger woman with this disease.

Here's the link:

targetovariancancer.org.uk/...

Sending all good wishes and hugs. Xx

Microbabe profile image
Microbabe

What a journey you have already been on ...waiting for results is the worst part once you know what your dealing with I like Carole says it does become easier.. Your fight kicks in...as for chemotherapy for me it was not as bad as I expected... I've lost my hair but I rock being bald lol...on this site all the ladies are amazing the support is second to non I'm sorry that you have to join us but you have come to the right place ... Good luck for Tuesday please let us know how you get on and big hugs for now try not to worry easier said than done I know but do things to distract you from your inner thoughts 😍

Patriciaa1963 profile image
Patriciaa1963

Hi Mogwaicat, I'm in the NW US. I never had kids. At times I really wanted them. I was diagnosed Feb 2014, stage IV. I started chemo exactly 1 week after I got the news. It had been misdiagnosed by my GP for alost a year. When I went back to her halfway through chemo, she blamed me it wasn'tcaught soon. Never went back to her.

I was NED for 18 months, then had recurrence. I've gone through my 2nd round of chemo. It's possible to live a long life after diagnosis.

Another thing, when I had my hysterectomy, it turned out my uterus was twisted. I wouldn't have been able to carry full term.

I hope you get the bottom of your diagnosis soon.

Love from the US,

Patty

I agree with what the other ladies have said and yes there is a life after diagnosis. You are in a horrible place right now being the patient and not the nurse. Our minds do run riot but we are all individuals and once you have a treatment plan in place, you will begin to feel more settled. There may be two separate issues unconnected, so no conjuring, just wait until you see the Oncology team and have more information. Wishing you the best outcome

Rlenesue profile image
Rlenesue

I'm sorry to hear this dreadful news. But please be assured you're not alone here, as this wonderful host of ladies are here for you with any questions you may have, or any concerns you have, or even if you just want to vent. Believe me we've all had that cry. Feel free to discuss anythibg, we're here for you. Good luck on Tuesday.

Yoshbosh profile image
Yoshbosh

Good luck for today, Mogwaicat. I hope you get some answers and feel prepared for whatever treatment plan is in place.

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