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preliminary vs. final results

nateandkatesmom
Posts: 40
Joined: Jan 2017

I called the gyn. office last Friday. Lab tech said only pre-lim results were back, but dr. was not in office to review. She also said I wouldn't want the pre=lim anyway, but would want to wait for the final results. (D&C on Valentines Day, removal of polyps and endometrial samples)

On other occasions, when things were negative the tech just told me. For the abnormal Pap the nurse practitioner came to the phone to talk to me. For the abnormal cervical biopsies I was told there were abnormalities and the doctor would discuss w/ me at the office visit coming up.

The thing is, I don't want to wait until the post op visit next Monday. I need at least some information.

Am I being unreasonable? I want to know if it is abnormal and what it says. I just don't want another 7 days of uncertainty.

Please be frank w/ me if I am being unreasonable. Nothing seems within my control anymore and I am so wanting to just see a path to follow.

 

Thank you all again for listening.

Dorothy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

Dorothy,

I don't think you are being unreasonable. Waiting is the hardest part! Two weeks seems like a long time to get the results from your D&C though. My gyn called me with results within a week.  Did you ask them to have the doctor call you with the "final" results when they are available? I'm not sure what they mean by preliminary anyway. Unless they are sending it out for a second opinion? They did that with mine and it took quite a while to come back. But, at least I was given the first pathology report in the meantime.

Please come back with your results!

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

If I had to guess, I'd say they have sent it out for a second opinion, like Cindi says.  I know that after my surgery, I was told that if they did that, it would take longer to get the results back.  However, I would certainly ask to have the doctor call you so you know what's going on.

nateandkatesmom
Posts: 40
Joined: Jan 2017

I called first thing, had to call back b/c lab tech hadn't arrived yet. Dr. isn't in today but nurse practitioner is and she is supposed to call me back. They usually turn off the phones about 2pm, so I am going to call back before then if she doesn't call.

Having the results sent for a 2nd opinion was not discussed with me. Of course I never thought to ask. If it was sent out for a 2nd opinion I am thinking it would have gone to Cleveland Clinic, because that is where the gyn. oncologists are from. And a 2nd opinion does seem prudent, if they are uncertain about the results. So I am fine with waiting if that is the reason.

I will definitely post when I hear back.

Nellasing
Posts: 529
Joined: Oct 2016

So glad you called back and are getting someone to call you.  That is not unreasonable- you need information and they should know they are dealing with some tricky emotional stuff when they don't do things in an orderly fashion- sheesh- don't you wonder if they've ever had to wait for anything?!  In the meantime we'll be praying and sending BIG (((HUGS)))

nateandkatesmom
Posts: 40
Joined: Jan 2017

Nurse practitioner called and was very apologetic. She was the only one working in the office and seeing patients today. (I didn't mention pre-lim vs. final results)

She wished she could tell me it wasn't cancer, but she can't. She said there is something, I guess there is not enough info. to make a diagnosis. She mentioned increased estrogen multiple times. She mentioned metaplasmic changes to the endometrium. I am hopeful my husband can pick up a copy of the report tomorrow for me to review before my appt. next Monday.

It sounds like the next step would be the hysterectomy.

I still have questions re: what is causing this high estrogen level. Is it the ovarian cyst? Prior to the hysterectomy should anything further be checked out re: my ovaries? Because polyps and tissue samples were removed would that give them the additional info. re: the high estrogen level or would a regular biopsy provide that?

Realistically, is it good, bad or neither that there is no definitive diagnosis at this point? As in, if it were not the "garden variety" endometrial cancer is it more likely to be diagnosed during a D&C? I know the hysterectomy gives you a more clear answer, but I though a diagnosis of type would come before the hysterectomy. Does that make sense?

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

nateandkatesmom, I think we can all understand you concern and questions.  I don't think any of us can give you a deffinitive answer as none of us our doctors and everyone is different.  Try to get your questions lined up to ask for your visit on Monday - it sounds like you have a list already started.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

You do have a good list of questions that your doctor will answer on Monday.  I couldn't even venture a realistic guess, and we shouldnt.  We are all so very different..  Write down your list and take someone along to take notes and maybe record your visit.  For me, everything happen so fast that I had a hard time keeping all information straight.  I know,it was Uterine and not cervical which is what the gynecologist thought first, but a D&C with a cone biopsy showed Uterine.  My gyro-oncologist/ surgeon told me that it was a very aggressive form of Endometrial cancer before surgery,  the exact type and stage came after surgery and after the pathology report came back.  That took about two weeks because they did send it off for a second opinion.

Hugs and prayers, Lou Ann

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

It took two weeks for me t o get the lab results from my d+c. I even called earlier and they honestly did not have the lab report yet. I don't know if it's the hospital, the labs, or what, but it's pretty par for the course where I live. I'm sorry and I know it's hard, but like others said maybe they are looking for a second opinion...

MAbound
Posts: 1160
Joined: Jun 2016

My pathology went to 3 different labs before my staging, etc. was finalized. Treatment plans and adjustments really depend on accuracy, so I think things get checked and double checked before anyone commits to telling us anything that we'd want to hold them to. It's hard to wait for those results, but it would be worse to be told one thing only to have it change and possibly change again as time progressed. This is one instance where it works against you to be in a hurry.

nateandkatesmom
Posts: 40
Joined: Jan 2017

I understand you are not doctors and cannot give me specific advice re: my situation. I respect that. I do. It is just that my questions and thoughts seem to pour out here.

In a more general way, can anyone help me better understand the diagnostic path? I thought the expectation for my D&C was to get a diagnosis. And that since there was a camera he would be able to pick out really good samples. I was disappointed when he said I was on my period and that hampered visualization. I reminded him that it was like that since October, and since I was up and about that day it was a heavy flow w/ clots per usual. IDK. I guess that information is supjective dependent on the woman who is reporting it...

I will write down all my questions, as I did at the pre-op appt. This time, though I will also write down the answers. And I will take Valium beforehand so my brain isn't racing. My husband goes with me, but he doesn't remember any more than I do. I hesitate to ask to record, but perhaps I will ask for time to write down answers and then the chance to read back everything to make sure I understand what the answers mean before we leave the office.

I was the one racing from question to question. per my husband. The doctor was very calm and patient. So it is definitely on me to focus and slow down.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2939
Joined: Mar 2013

nateandkatesmom, if your husband can't write down what is being said, maybe have someone else with you too who can take the notes.  As for recording -  It is too much for you to do everything and I have no doubt the doctor will give you all the time you need.  My BFF was my "scribe".  I still have the note book full of questions, by CA125 count, notes on what helped during my chemos, etc...

It all IS overwhelming!  You are not alone.  

nateandkatesmom
Posts: 40
Joined: Jan 2017

My husband has cervical stenosis and is in the process of being scheduled for surgery w/ a neurosurgeon. He has lost sensation and dexterity in parts of both hands and fingers. His pain is constant, so concentration is sometimes hard. I really don't have a friend that I could ask to sit in. People are so busy with work and their own lives...

I have copies of all my labs and pathology reports as well as the print outs from each dr. appt. I have taken notes off of here and articles I looked up and also have my list of questions from the pre-op appt. As far as it being too much for me to do everything, I feel like I am doing hardly anything.

Symptoms since October really stopped most activity, and although the bleeding stopped a few days after the D&C the nausea and headache were horrible. I did call for Zofran and after 1 dose of the Toradol switched to ibuprophen. It still took several days to feel "okay."

If possible, "no time for cancer," or anyone willing, can you give me a clearer understanding on how and when a diagnosis happens? In a typical situation, does the D&C provide at least a category about the location and type of cancer?

Dorothy

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Dorothy, I had my D&C on 9/3/2015, was called with the diagnosis on 9/8, had my first appt with my gyn-onc on 9/10, had CT scan on 9/19 and surgery on 9/23. That timeline may have been sped-up for me because of the aggressive nature of the cancer diagnosis (MMMT) but just wanted to share it with you in case it helps. Kim

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

When I was going through this, the scheduler in my gynos office took me aside and told me I would get much quicker attention at the major cancer hospitals in the city (being Philly). She was right. 

nateandkatesmom
Posts: 40
Joined: Jan 2017

kvdyson it does help to see your timeline and your diagnosis. Thank you. I am hopeful others will be able to share to give me some type of reference point.

cheese queen my gyn. discussed the option of referring me to Cleveland Clinic or Pittsburgh (not sure of the name of the facility.) I explained that that isn't an option for us. Gas, tolls, and other traveling expenses just aren't there. I did go to Cleveland Clinic for another issue and tried to use something called Provide A Ride. It was a nightmare as far as them showing up too late to get me there on time for my appt. or me waiting for hours afterwards and worrying about not getting back home. We have one car and both my adult children attend college, work and have other activities. So, the four of us have to coordinate our schedules. Also, our car is 17+ yr. old and not sure about the feasibility of lots of long trips.

To be honest, if we were going to seek outside care I would prefer it was for my husband. The whole neurosurgeon thing freaks me out much more than the gyn. oncologist thing.

I just want to get thru this with the least fuss possible. As in, whatever needs to happen I do it for as long as necessary or feasible. And hopefully it will be a good outcome. It isn't the outcome that is upsetting me, but more the messy parts in between.

I am in counseling and go tomorrow, the first I will see her since before the pre-op visit. I have had some chronic health issues for a few years, and it just seems like there is never a break for my husband.

I suppose I am grasping at information as a way to feel more in control. My hope had been that seeing the gyn. and getting the bleeding stopped, by whatever means necessary, would get me situated and better able to be supportive of my husband.

Dorothy

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I did NOT have a D&C, but an endometrial biopsy on 6/17/15.  My ob/gyn called me on 6/19 with the results... carcinosarcoma.  I had a CT scan on 6/26, I met with the gyn/onc on 7/1 and I had my hysterectomy on 7/10.

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

My d+c did give a fair amount of info such as the cell type, but true staging didn't happen until after the hysterectom. Yes I had a scan before the surgery also.

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