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Waiting with questions (Recap of Lost Posts, Topic Created by bfrank65 on Jan 23, 2019)

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cmb
Posts: 385
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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

bfrank65

Jan 23, 2019 - 4:53 pm

Hello, I found This discussion board while I am waiting on further tests and Inhave questions.  I know everyone is different, but sometimes learning everyone else’s experiences can help in planning and thinking things through and not forgetting to ask important questions when you’re at the doctor’s office.  

I am 53 yrs old, soon to be 54.  Last “formal” period was when I was around 51 or very early 52.  But suddenly about 6 months ago, after over a year with no period, I had all the fun symptoms of PMS, tender breasts, bloating, etc. and had the worst period.  Heavy and lasted about 10 days. My gyn thought is was just a one off and not to worry.  Probably just a last hormonal surge.  

Now about 5 months later, I am spotting.  Not heavy.  Just a reddish discharhe more than anything.  It’s been happening off and on for about 2 wks.  My gyn seemed worried and so ordered a transvaginal ultrasound that revealed a 10 mm end thickness with possible polyps and what he decribed as possible “blood”. 

So now I am scheduled for a hysteroscopy with a D&C on Feb 1.  My gyn thankfully is pushing for the more thorough testing apparently and commented “let’s just do it right the first time”.  

I guess questions are is there anything specific I should be asking my doc?  How long after the biopsy will it take to get the results - typically as I know there can be differences among docs and clinics.  And if I do get the dreaded diagnosis, should I immediately consult with an oncologist?

Any information is well appreciated.  Thanks all.  - Becky

 

Forherself

Jan 23, 2019 - 5:25 pm

Hi Becky,

Sorry to hear about your issues.   By clicking on anyone's name, you can read stories of different women here.  I read that 1 in 10 women who have post menopausal bleeding have cancer.  So hopefully that will be your outcome.  If they do find cancer cells in the biopsy, you will be referred to a gynecological oncologist.  The first pathology report can determine the GRADE 1 11 or 111.   So based on that the Gynecological gynecologist will make a plan of treatment for you.  Grade 1 endometrioid cancer is often treated with hysterectomy salpingooophorectomy only.   After surgery they can determine your stage.  Depending on if more cancer cells are found.  There is information about staging on this site.  For instance in the search feature you can search for staging.  Once you know your grade and stage, the oncologist makes recommendations for treatment.   

As far as how long it takes to get the pathology report I think there is a lot of variance   I didn't learn mine for 8 days.  It was a long hard wait.  But its all doable.   It is confusing at first all this.   In the beginning it is important to know grade first, and then stage.  You can get them mixed up.    I'm really glad to see that your doctors are not waiting to see.   They are being very proactive.  I guess one other thing I would say is the realization that each case is different.  There is no one size fits all.  The diagnosis and treatments are variable.  Pathology slides are hard to interpret sometimes, and there is more than one opinion on the same slide.  So second opinions are good if there is doubt.   

Lots of wonderful ladies here to answer questions.

 

bfrank65

Jan 23, 2019 - 8:31 pm

Thank you so much!

Thank you so much!

 

Northwoodsgirl

Jan 23, 2019 - 6:52 pm

Questions

Welcome to our group. I am sorry you are having to go through all of this.

You will likely get pathology report in a week or maybe sooner. Your doctor will call you and probably tell you if you have cancer over the phone. You won’t be able to see the pathology report on your online medical portal until your doctor has reviewed it and released it for your review online. If cancer, yes find an GYN Oncologist. So hard to wait for results! 

Lori

 

bfrank65

Jan 23, 2019 - 8:32 pm

I appreciate the reply.  The

I appreciate the reply.  The waiting is the worst!  

 

Denise66

Jan 23, 2019 - 8:39 pm

Hello

Hello

 

I’m sorry you are going through this. Quite honestly, I would skip the D&C and go right to a endometrial biopsy. It’s a quick 2 minute office procedure and you should have the pathology report within 5 business days. Just make sure you take Motrin before the procedure because it can be uncomfortable. You could most likely get in with your doc next week for the endo biopsy and have the results the following week. To be proactive, I would make an appointment with a gyno oncologist for the 2nd week in Feb. That why you have an appointment and can cancel it if you don’t need it. 

I went into my Gyno and she did the endometrial biopsy on the first visit.  I had my results in 5 days  Two days later I was sitting in the oncologist office and the following week in surgery. I hope you are not diagnosed with cancer.  If you are, things move very fast.  

The endometrrial biopsy will only only tell you the grade of the tumor cells.  Grade 1 is the best to have.  

If you were my sister I would tell you to call your gyno tomorrow morning and see him within 5 days for the endometrial biopsy.  It’s a quick 2 minute office procedure.  If your doctor is concerned, he will get you in by Monday and you will have your answer by next Friday.  

I must say, I’m new to this site.  The ladies on this site are a wealth of information.  I highly respect and value their opinions.  

 

CheeseQueen57

Jan 23, 2019 - 9:00 pm

I respectfully disagree

Endometrial biopsies hurt like hell and often times they aren’t able to get enough tissue to make a definitive diagnosis. I would stick with the D&C and for sure get the info you need. This is what happened to me and delayed my diagnosis by weeks. 

 

bfrank65

Jan 23, 2019 - 9:26 pm

This is what my gyn explained

This is what my gyn explained to me and said the in office procedure would be especially painful for me since I have not had children.  He also reiterated that the endo biopsy might not get enough tissue   So from what I have seen from other posts, it seems the hysteroscopy with the D&C is the best option.  But I just don’t know.  I think it may be diff for everyone.  So I certainly appreciate all the info!  This is what I am looking for.    I just want to be sure I don’t miss anything.  

 

NoTimeForCancer

Jan 24, 2019 - 9:32 am

My gyn tried to do the biopsy

My gyn tried to do the biopsy in the office, said 'forget this', let's do the D&C and didn't even charge me for the office visit.  

I would add, in my mind, the D&C is more complete as they scrape the uterus, not capture a sample.  Go for the gold.

 

BluebirdOne

Jan 24, 2019 - 5:43 pm

My doc said the same thing.

Too easy not to get actual cancer cells with a simple biopsy, creating a false negative.  Hysteroscopy is like a colonoscopy, they actually view the interior of the uterus to visually see what needs to be biopsied. I had it done under light general anethesthia. Since my gyn screwed up my initial scheduling of the procedure because he was on vacation, I was forced to wait 5 weeks. He got the preliminary pathology report two days after the procedure because it was Grade 3, serous, the full report was not for about 10 days.  I had an appointment with a local GO, but I was not impressed and they said it might be weeks to get me into surgery. I ended up going to a great cancer center and had the radical hysterectomy in one week, but I had to travel. Good idea to get an appointment with a GO, but you might need a referral just to make the appointment (work with your gyne) and they might not make any appointment without your records being forwarded first. If you end up having to see the GO, make sure you feel comfortable with that person, as you will be emotionally vulnerable and scared during the visit. You are your own best advocate. I am so sorry that you have to go through this, but we are here to help, if needed. 

Denise 

 

Soup52

Jan 26, 2019 - 12:55 pm

I agree with Cheese. My

I agree with Cheese. My doctor couldn’t even get the biopsy so I had d +c which will tell you more. In addition everyplace is different as far as how soon you get results. It two weeks to get mine. I live in a midsize city so things like this take awhile. In addition I wasn’t given results over the phone, but came in for an appointment at which time she referred me to the best gynechological oncologist. Yes waiting is difficult , but keep in ,mind there are different reasons for it to take some time.

 

Forherself

Jan 23, 2019 - 9:12 pm

I had a failed attempt

attempt at endometrial biopsy and went on the to the D & C.  The biopsy will be done during this procedure.  I will say I was given pessaries the night before to soften my cervix.   It was very painful.   After an hour of thinking this was what labor must feel like (I never became pregnant) I took two Tylenol and that relieved it.  In case you are told to use the pessaries.  I thought I might have to go to the ER!   

 

MugsBugs

Jan 24, 2019 - 12:43 pm

D&C first

If your doctor recommends a D&C first I recommend this approach.  The biopsy isn't pleasant because they take tissue from several spots in your uterus and there isn't any numbing involved.  The pain isn't excruciating but is very unpleasant! They are going in blind so if they don't hit the right spot it there is a possibility of coming back false negative.  Mine came back with 'abnormal cells' but not cancer.  My gyn then did a D&C with hystoscopy that came back positive.  Your doctor will probably talk to you after the D&C and let you know if they think there is anything to worry about.  My doctor told me after the D&C that she found some calcification that looked problematic so I wasn't really surprised when the pathology report came back positive.

Statistics are on your side though and there is only a 10% chance that you have cancer!

Good luck to you!

 

BluebirdOne

Jan 24, 2019 - 5:47 pm

And a great chance it will be the more common

Type or grade 1, which is much less aggressive. About 90% are Type 1. 

 

Candy546

Jan 25, 2019 - 2:29 pm

D&C is Not Perfect Either

I agree that the endometrial biopsy is difficult because the physician may not get enough tissue, but the D&C has flaws as well.  I had a D&C in December 2017 with no indication of cancer even though the pathologist indicated that he looked deeper in search of cancer cells. Unfortunately, 5 months later spotting started again and the gyn oncologist recommended a total hysterectomy   as a precaution just in case they missed something with the D&C, but he did not seem too worried.  Surgery was scheduled for early October 2018 and it was found that I had the agressive clear cell carcinoma that had already invaded 50% of the myometrium and had moved to lymphovascular invasion.   Needless to say, after my experience,  I would say go directly to a hysterectomy since you don't need the uterus anymore for child bearing.  I would keep the ovaries though.  Ovaries prolong life as long as they are not diseased.  Good luck and God Bless with your diagnosis whichever method you choose.

 

LisaPizza

Jan 25, 2019 - 4:09 pm

My D&C also did not diagnose

My D&C also did not diagnose my cancer, even though it turned out to be covering almost the entire surface. It did, however, get read as abnormal enough to get me referred to gyn onc for hysterectomy ("at least" complex hyperplasia with atypia). Actually even the intraoperative frozen section didn't diagnose it - it was read as hyperplasia with atypia, possible/rule out well differentiated endometrial cancer. They called out metastatic cancer in the ovary, but still didn't rule in the primary endometrial cancer until the final pathology report.

Unfortunately, no test is perfect. I think it's key to stay on top of things even if testing is negative for cancer and you're felt to have a benign cause. Maybe not everyone needs to have a hysterectomy "just in case," but make sure you have good answers, make sure you understand the diagnosis and prognosis and decision making about what willl be or won't be done, and make sure you have very good follow up to catch anything that could have been missed.

 

NoTimeForCancer

Jan 26, 2019 - 3:57 pm

FYI, there are some of our

FYI, there are some of our uterine cancers that are hormone driven which is why the TAKE the ovaries.  UPSC is one of those cancers and not only can I not take any hormones for hot flashes and other things, I also am wary of soy.  The body recognizes soy as a hormone so I read labels and try to avoid it at all costs.  That is very difficult, most protein shakes have soy protein isolates, highly processed soy, and this is everywhere. 

Workimg with a gynecologic oncologist is the best way to deal with any gyn cancer.

 

janaes

Jan 25, 2019 - 7:30 pm

I thought i would chime in

I thought i would chime in here. I had a biopsy that found my cancer. I know a lot of situations that doesnt work but mine did. I dont know exsactly how but mine they even found the MMMt with the biopsy. After my hysterectomy they found it wasnt as much MMMt as they found doing the biopsy. But my gynocologist was right about the stage. After hysterectomy the stage was the same as the biopsy

I know it has been diferent for everyone but i dont remember the biopsy being very painful. 

So i guess i would say it worked very well for me.

I wish you the best as you go forward

 

PDXmama

Jan 26, 2019 - 1:28 pm

Hysteroscopy

Becky I am right there with you. I am having a hysteroscopy Feb 6th to look into the cause of my own PMB. My Transvaginal Ultrasound also discovered 9.9 mm endometrial thickness and I am on my second round of spotting since Thanksgiving after having gone through menopause 5 years ago. I know it is the pits to wait (Lord do I know this), but in coming to these discussion boards we are educating ourselves through the experience of others. The stats are in our favor to locate another cause for our symptoms and we will take the news as it comes and when it comes. I mainly wanted to chime in and let you know I have a good sense of what you are going through and I am walking a very similar journey here. Good luck on Feb 1st and I hope to read on here that you recieved good news.

Forherself's picture
Forherself
Posts: 234
Joined: Jan 2019

What a wonderful service to all of us.   It was so deflating to see all the posts gone, the love expressed, and the information shared.  It is so hearwarming to see the posts again.   I just want to say a very heartfelt thank you for doing this.

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