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How long did it take for diagnosis?

szelisk
Posts: 11
Joined: Apr 2018

I am waiting to be formally diagnosed (with something).  I have had a CT scan which found a mass in my uterus, an ultra sound which I haven't been told exactly what it stated, an attempted endometrial biopsy (which MD couldn't get into the cavity.  She stated it might of colapsed onto itself, but to follow protocol she ordered a MRI.  Well I had the MRI done last week and called the office on Thursday for the results.  They had the results, but the MD is on vacation and will not be back until the 3rd.  Since this has been going on for about 2 months now, I went to the hospital and received a copy of the MRI report.  The MRI stated the entire endometrial cavity is filled with a large suspecious mass (7.7 X 7.9 X 9.2 cm) and is suspecious for endometrial carcinoma.  

Of course, I'm nervous and I am in pain (my gallbladder needs to be removed as well, but was waiting for the all clear from my OBGYN).  How long did it take for you to get a diagnosis?

Thank you for any advise.  

evolo58
Posts: 277
Joined: Dec 2017

Mine was only around five days ... and that included a holiday in there.

I'm a little shocked. Usually, it seems that when there is bad news, the resutls come out so much sooner ... it's as if the doctor can't wait to tell you. I tell my family and friends that the last thing I want IS to have my results come much sooner than expected. When I read or hear that they did, it makes my stomach lurch.

Your case seems really different, however, and it's irritating that your care team seems to be somewhat lackadaisical in its approach. I guess there was a holiday weekend involved, but ...

The language used in these things don't help any. "Likely", "Possibly", "Suspicious", "Consistent with", etc. may indicate cancer ... or may not. I know of some people who had those terms in their reports and it turned out NOT to be cancer, and some where the worst case occurred. Far, far too many moments of anxiety waiting for further tests and then, days of waiting for MORE results.

The thought of that ... thing ... in you can lead to a whole lot of stress. Hope someone actually gets a move on soon, and if not, it might be time for a second opinion.

barnyardgal
Posts: 168
Joined: Oct 2017

I had a biopsy which showed endometrial adenocarcinoma stage1a. I received those results 3 days or so after the biopsy. After my hysterectomy I was diagnosed at Stage3a. The pathology report that showed that took about 10 days after the surgery. 

I've had two CT scans and I received results from the first one the next day and from the second the same day. Both have been clear. I'm getting radiation now.

I'm surprised it's taken that long. They know you're anxiously awaiting results.

oldbeauty
Posts: 176
Joined: May 2012

Since you have a day before your doctor returns, perhaps you could go get your ultrasound report to read as well.  If you are already being seen by a gynecological oncologist (a doctor who specializes in womens' cancers of the reproductive organs), call the office and tell them you've read the CT and MRI reports and you want an appointment in the immediate near future with the doctor in person to discuss the test results and plan the next step.  If you are not already seeing a gynecological oncologist, call the doctor who ordered the tests and failed at the biopsy and tell them you want an immediate referral to a gynecological oncologist.  At this point, you want to be working with a gynecological oncologist based on the fact that you've got a CT which found a mass and a MRI which concluded that the mass is suspicious for cancer.  Whether it is, or is not, cancer is a determination to be made by a specialist gynecological oncologist.  Once you have your specialist, you can ask that doctor to contact the surgeon who is waiting to do your gall bladder to see if they can work together to get you treated for your immediate needs.  It may be that there is a procedure to collect tissue from the mass in your uterus without surgery, but it seems like in most cases like this, you may be looking at a hysterectomy.  If so, it's only after the tissue from that surgery is analyzed under a microscope by a trained pathologist that a determination will be made whether it is cancer or not and if so, whether treatment beyond the hysterectomy is indicated.  On the plus side, it would appear that your CT and MRI found an issue with your uterus only and not any other organs.  Good luck and come back again when you get the information that you want.  Best wishes, Oldbeauty

szelisk
Posts: 11
Joined: Apr 2018

I tried to get my ultrasound and biopsy report.  Unfortunately, they were done in the MD office and they will not release them until I speak with the MD.

The funny thing is I put off having my gallbladder out since I thought this was more important.  (Both were found during an ER visit for pain in my back and chest)  It was bad enough the surgeon they sent to see me in the hospital didn't believe I was in pain because I wasn't crying for pain meds all the time.  (My daughter who is a nurse there new the MD)  

We are hoping to have both done at the same time.

oldbeauty
Posts: 176
Joined: May 2012

You could do what I do...lie.  I just came back from the hospital where I had a CT done last week with my report and the CT images on a disk.  This time they did not ask, but when they do, I just say "yes, I spoke to my doctor."  After all, they ARE your health records; you don't need a doctor's permission to read your files.  But I understand they have their protocols...and we have our need for information.  But going back is probably not worth your time today.  I would move on to the appointments.  I also ran into the holiday.  My doctor told me either he or his assistant would call me with the results.  When I had not heard by last Thursday afternoon, I called and learned he was on holiday.  I dont' begrudge him a holiday, but I wish he had told me that it would be a week before I would hear.  I chose not to potentially ruin my Easter weekend by going after the report last Friday, but went first thing this morning and had no problem, just a short wait to get it in hand rather than have it mailed to me.  Again, best wishes as you continue on the path to health.  Oldbeauty

szelisk
Posts: 11
Joined: Apr 2018

Ok, I never heard you, but I feel the need to leave work tomorrow and get them.  Thank you!!  I will keep you posted.

Soup52's picture
Soup52
Posts: 871
Joined: Jan 2016

i had a two week wait after my D+C. I even called earlier and the results were not in yet. I also had 2 weeks after my hysterectomy and that was only because I pushed otherwise it would have been 4 weeks.

LisaPizza's picture
LisaPizza
Posts: 169
Joined: Feb 2018

I feel you with the gallbladder problems at the same time as your gyn issues, I had the same. My uterus was more deadly in the long run, but my gallbladder was trying to kill me RIGHT NOW. I did have my gallbladder done at the same time as my hysterectomy (two surgeons). It was mainly a scheduling issue to get both done at the same time, but we managed it. You don't want to be having gallbladder attacks, or an emergency surgery, while recovering from hysterectomy, or during chemo or rads if you needed them.

Tamlen's picture
Tamlen
Posts: 189
Joined: Jan 2018

My gyn also had trouble doing the biopsy in the office and scheduled an ASAP D&C and biopsy for 4 days later. This was all after an ultrasound showed a small suspicious mass. I received the biopsy results a week later by phone, and a couple days after that had an in-person appointment to go into more details. After my hysterectomy, I received the pathology report via phone call from my gyn oncologist 6 days later. Both docs appreciated the worry and urgency and for that I am very grateful. Better to know than to wonder and worry.

I hope you're able to get their attention soon. Oldbeauty's advice seems spot on.

szelisk
Posts: 11
Joined: Apr 2018

My MD called, she told me she is worried due to the size of the tumor and how complex it is.  I am now scheduling an appt with an gyn/onc and will probably having surgery hopefully soon.

Now, to tell family.

Thank you everyone.

oldbeauty
Posts: 176
Joined: May 2012

So glad you are moving on to a gyn/onc.  Please keep us posted if you like.  Oldbeauty

szelisk
Posts: 11
Joined: Apr 2018

i will definitely keep you posted.  Thank you for listening!

Tamlen's picture
Tamlen
Posts: 189
Joined: Jan 2018

I'm glad you're seeing a gyn onc soon. We're here if you need us.

szelisk
Posts: 11
Joined: Apr 2018

For being there when I needed it.  I will definately keep you posted.

pinky104
Posts: 574
Joined: Feb 2013

I am another one who had my gallbladder removed during my cancer surgery.  I'd had no symptoms of cholethiasis, but gallstones were found on my CT scan that I had to have for my cancer surgery.  My GYN/onc had planned to do my hysterectomy robotically, but when he finally looked at my CT scan report (done at another hospital where I worked) the day of my surgery, he told me my cancer was too extensive and he had to do my surgery the old-fashioned way.  My sister, who's an LPN pointed out the gallbladder problem to him and asked if I could have that surgery at the same time.  He agreed that it should be done rather than having to be opened up again at a later date.  He said he'd try to call someone in, but if he couldn't get anyone, he'd do it himself.  Fortunately, there was a general surgeon around the corner from his office whom he was on good terms with, and that guy agreed to do it.  My surgery was long and I was in the hospital for 6 days afterwards because I couldn't get my bowel function back.  I had to have two units of blood two days after surgery because I'd lost so much in the long surgery.  The nurses couldn't get the blood into me because my veins had basically collapsed.  They had to call in the IV team who also had trouble, but they kept working at it because they didn't want to waste the blood.  Ironically, during my second cancer surgery last year (when my cancer wrapped itself around my ascending colon and spread to a couple other places), the same general surgeon had to be called in at the last minute because I needed two bowel resections plus a repair of my abdominal wall.  I'd had incisional hernia surgery two years after my first cancer surgery, and my intestines had grown into the mesh from that hernia repair.  My GYN/onc. summed it all up by saying "you were a mess inside."  I was in the hospital another 6 days the second time.  I couldn't wait to get out of there!

 

szelisk
Posts: 11
Joined: Apr 2018

i am scheduled for surgery Monday.  Still no clear diagnosis, they need to wait until they get in.  Unfortunately, gallbladder will have to wait.  Due to size of the tumor only option is a full abdominal incision.  Surgery is scheduled for 4 hours.  that seems long to me, is that normal?

MugsBugs
Posts: 100
Joined: Jan 2018

I had laproscopy surgery and it took 2 1/2 hours.  My gyn/onc said that if he went in and determined that he needed to do abdominal surgery instead of the laproscopy it would take longer than the 2 1/2 hours.

Good luck on Monday!

derMaus's picture
derMaus
Posts: 504
Joined: Nov 2016

Yes that's normal. My cancer was extensive and I had an open incision; it took 5 hours. Best wishes on your surgery and be sure to check in and let us know how it went. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

seems I am late to the table to welcome to our group, szelisk.

Sending you prayers and good thoughts for Monday.  

szelisk
Posts: 11
Joined: Apr 2018

Thank you 

ConnieSW's picture
ConnieSW
Posts: 1367
Joined: Jun 2012

everything went well yesterday. 

szelisk
Posts: 11
Joined: Apr 2018

I had my hysterectomy on Monday (everything removed) Unfortunately, still no answers.  The pathologist could not come up with a type of tumor during the surgery.  We need to wait for the report.  My daughter (the nurse) mentioned the MRI not 100% accurate.  The MRI showed  uterus was one big tumor.  Turns out the tumor was the size of a small eggplant and the rest was blood.  They are thinking I might have STUMP cancer, but will not know until the report.  

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

I hope that you hear about the pathology report results soon. I called my gynecological oncologist's office one week after my surgery and the nurse read me the findings over the phone and then mailed me a copy.

In the meantime, rest up from your surgery. It does take time to recover from a full abdominal procedure.

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