Waiting

[Serenityblue]

How did/does everyone deal with all the waiting and more waiting between every move that's made?

i started with symptoms (well actually started taking notice) late last year and went to my GP at the end of December.

He did his round of basic tests, bloods, urine, vaginal swabs, then when they came back clear, referered me for an ultra sound so had to wait for that appointment. After finding a "simple" cyst and fluid in the pouch of david he referred me again, this time to a consultant gyny.

I've been waiting for that appointment which has finally come through for Monday morning, but in the mean time, i've ended up at a&e with the pain, for which they said, we can't do anything other than give stronger pain meds than i was buying over the counter, just wait for my appointment with gyny.

The pain i can only describe as reminding me of labour pain. It's not a sharp slicing, it is literally like labour pain all round. I'm bloating ridiculously now and no longer fit in my jeans, yet i'm not eating much.

I am worried and know the appointment on Monday will be an assessment, then more waiting. I'm also worried i will get fobbed off with, it's just a cyst, go away.

Really, when you were going through the tests and not knowing, how did you get through it?

[crecco]

Sorry it took me awhile to get back to you. But yes, the "cyst" beside my right breast was originating from the ov ca. The report came back cancer but the tissue sample was sent off to find out where the cancer was originating from. At the time I had at least 13 such "cysts" all over the mid section of my body. Which I was later told were not cysts, but tumors. When the results were back it told the onc just exactly what we were dealing with and what kind of treatment we needed to start. A CT scan showed the cancer to be in my liver as well. Thankfully after 8 rounds of chemo when I finally had my surgery, all the tumors in my midsection were gone and there was only one other spot they found on my diaphram other than what was in my liver.
My story sounds very similar to Paulas. Other than the waiting for 3 months to figure out exactly what was going on. But after that everthing happened very fast.

Dawnlyn, I wish you the best of luck. And yes keeping your mind and body both otherwise occupied is the best thing to help in that awful waiting game.

  Love, Chris

[dawnlyn]

Jan,

I am pretty new to this site. Originally found a couple of months ago when I typed in septated complex cyst.

Long story short small town local doctors made a few errors on some of my tests.  I went to bigger City hospital to gyn/onc they found cyst to be 10 cm I am having surgery on Feb. 20th.  Your response here about being naked on operating table.   Really made my day, so instead of sitting here stewing I think I will take your advice.  And the advice of others and try to keep myself busy.

I just wanted to say thank you.  All of you have been the greatest.  I have and will continue to keep everyone in my thoughts and prayers.

Again thank you.

Dawnlyn

[PF_PVD]

I was also diagnosed without surgery and started on chemo immediately and before surgery.  They diagnosed me at stage iv ovca from the beginning probably as Jan said because it was so obvious.  They actually diagnosed me with just a CT scan and nothing else then confirmed it with my CA125 of 2,488, malignant path report on my ascites when I had it drained the next day and malignancy from my uterus after a D&C.  The only surprise after surgery is the pathologist says I have primary fallopian tube cancer instead of ovca but same difference I'm told.

Like Jan, mine also happened in the blink of an eye, so there was no real waiting there.  My internist sent me for scans the day I saw her the first time, gave me the dx the very next day, sent me to an onc the day after that and two days later I met with the gyn/onc who did my surgery.  I started chemo in less than a week and had my port implanted the day afer the first chemo they were in such a rush.  Unfortunately, the rush wasn't enough, as I am now "waiting" to see where this monster is regrowing as my CA125 is on a steady rise after only 1 month of remission and all my scans are clear.  Next CA125 is next week and that will be a wait.  You don't know hard I am hoping you will not join this "club."  Best wishes...Paula

[EllenZ]

I had an TVUS in late October because of post-menopausal bleeding.  I'm 53 and newly menopausal (not even sure if I am definitely but we think I am).  It showed a thickening of the uterus.  My doctor decided to do a D&C on 11/19 to check it out.  Turned out that the TVUS was wrong.  The uterine lining was fine but I had a large fibriod (among many others) which she was able to remove.

I developed a post-op infection which landed me back in the hospital.  I was still having cramps a few weeks later so my gyn decided to do another TVUS to see what was going on   That was 11/29 That was when the cyst on my ovary was detected.  (so thank goodness for the infection or we'd never have found this so early!) It was simple and fluid filled but she wanted to track it so we scheduled  another TVUS for mid January right before my follow-up visit with her.

She called me the day after to tell me that the cyst hadn't grown but it was changing and looked suspicious.  She recommended that I see a gyn oncologist.  (She was very excited that if it was something it was likely stage I since there was nothing there in October).

I immediately scanned the internet for top docs in the area and top hospitals.  I called all 5 and made appointments.  I knew they were all busy and I had no idea how long I'd have to wait.  I had my first appointment the next day and my second the week after. Both thought it was likely benign but that it should come out to be sure. (I cancelled the other appointments since I liked the second doctor I saw).

I'm having surgery on Monday (2/18).  Considering the long wait time's I"ve been reading about on this forum, I think mine has been really short.

As for how to get through the wait.  Well after I cried for the first 2 days when I heard the words "possible malignancy" I realize that I wasn't going to worry about things that were out of my control.  I'd never worried about those things before and I wouldn't start now. I probably don't have cancer - so why spend precious moments of my life worrying about it.  If it is cancer - I'll fight it - just like I'd fight any other bad thing that happened to me.  None of us knows when we're going to die - to worry about it is a waste of time.

ellen

[Jan214]

I hope your onc is not the kind to give false hope. I don't know many that are so probably not.  If he is that certain with that high a count than I am sure he knows what he is talking about.  Good for you.  I will be praying for a great outcome.

Just relax take a few deep breaths and don't spend your last hours before surgery stressing yourself out, it won't help.  Pamper yourself a little.  Hey, I knew I was gonna be naked under harsh lights and I made sure my skin was buffed and oiled and my nails were done (except the one they make you not do).  I am not usually a girlie girl but I made sure if I was gonna be naked in front of all of those strangers I wasn't giving them anything to make fun of.  Enjoy time with family.

Take care and good luck
Jan

[ccrisanto]

Hmmm, I think that should make me feel better.  My Oncologist is very positive mine isn't cancer, even with the elevated CA 125 and the PET/CT. he has been practicing for 30 years.  He called the PET/CT results a "false positive".  I am not sure what to think of that.  But, sometimes I do get the idea that he might be the type to just let people have hope. Maybe that is just me being negative and we don't need that. I appreciate your response and the info.  I have less than 24 hours before my surgery and just wish it was over.  

[Jan214]

My onc has been doing this for 38 years and he "knew" the way any professional knows something they have seen a gazillion times.  He did say surgery was the only way to be 100%, but he didn't give me any false hopes and I am glad of that.  At least when I came out of anesthesia (badly) there weren't any big surprises.  Well, maybe the stage.  3C

[ccrisanto]

thank you for your answer.  So, the cyst beside your right breast was originating from the ovarian cancer then?  I guess my understanding was wrong, but maybe it was just based on cancer in the ovaries only being diagnosed with surgery.  Thanks again.

[crecco]

  Hi I am not Jan but I did know before surgery that I had cancer. I had gotten very sick and had a biopsy done on what I thought was a cyst beside my right breast. It came back cancer and the tissue was sent to Mayo clinic to determine where it was originating from. I was dx stage IV with mets to the liver before surgery or chemo either one. By the way, I had chemo first and then debulking surgery. Chris

[ccrisanto]

In your comment, you stated "The nights before surgery even knowing they were taking everything, knowing it was cancer but not knowing how bad".  how did you KNOW it was cancer prior to surgery?  I have been told that the only way they know is by doing the surgery.  I am just curious because my PET/CT came back stating that there was a high likelihood of cystadenocarcinoma, but my oncologist says that the surgery is the only way to know.  How did you know?  I have surgery tomorrow and maybe I am just looking for an answer now, but I was just curious your experience.

[hopeshell]

One of the biggest lessons I have learned after getting dx was that the waiting is never really over.  You have to find peace and rest admist uncertainty.  At first, I waited for the us, then the MRI, then the surgery, then the pathology, then the treatment options, then the six week point, then each three months I get checked again...you get the idea.

Even those who never get dx with cancer have times where anxiety takes over.  For me, I know God is control of the number of my days.  I have times of great worry but now feel like I can and will be able to handle any kind of news.  Before dx, I would have thought I could never live happily under the cloud of a cancer dx.  I learned that I could.  I have my more anxious days and like the ladies said...staying busy is the best!  

Also, reading some books by cancer survivors is very encouraging.  You realize others have beat the odds and stats don't define us.  Best wishes.

Shelly

[Jan214]

From the time I went to the GP to the time I was in the OR having a TAHBSO was a  blink of an eye.  Each Dr. knew who to send me to and what tests to order and they always got me right in for everything so...I guess mine was just obvious.  The waiting I did do was not pleasant.  Hearing that hight number for the CA125 and knowing what it meant but still hoping...going thru the TVUS & MRI with stony faced techs who can't tell you a thing and you are looking at the screen thinking are the gray parts bad or okay and are those black spots "it"?.  The nights before surgery even knowing they were taking everything, knowing it was cancer but not knowing how bad.  The weeks of waiting for my hair to start coming out in chunks.  It is not fun and we all have the "nights sweats" figuratively if not literally.  
My best advice on this is what Chris said, try to stay busy and your mind on positive things.  Keep after the Drs and if you don't like what one says go to another.  You have to stay on top of it cause they won't.
Good luck
Jan

[crecco]

Sometimes the waiting can be the hardest part. The best advice that I can give you is to stay busy. Keep your mind and body occupied so that you do not sit and do nothing but worry.
  Also, you know your body. If you feel that things are not right and your Dr does bloe you off, please look around and try to find another Dr who will listen to you and try to find out what is wrong.

[ireneo]

I can't say I'm handling it very well. My testing and all started back in October. Now it's been over 3 months and I'm  tired of the appointments, tests and waiting. I stay busy during the day which helps. It's bedtime that eats away at me. Just laying in the dark and thinking. Very hazardous to my well being. Excuse me if this comes across as cheesy but I'd have to say visiting this board has been the most helpful.

My husband is being as kind as can be but can't imagine how it feels to be physically invaded by strangers. I have 2 friends with ovarian cancer but I don't feel comfortable whining to them since they're in the midst of chemo and such. The folks here are the best. They know how it feels to wait, to not know, to dread the next probe. Acceptance is high here and that makes me feel better.  I guess what I'm saying is the only way to get through it is "together." I'm so sorry this is hard on you. Here's a cyber ((hug)) and do let us know how Monday's visit turns out.