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New DX endometrial

kahea's picture
kahea
Posts: 6
Joined: May 2018

Hi!

 

I just received a diagnosis of endometrial cancer yesterday.  Today I spent the day in bed wallowing and tomorrow I will face this.  I have an appointment with Gynecologic Oncology May 21st.  What questions should I ask at my appointment?  Right now my head is realing and I honestly don't know what I don't know.  

Kathy G.'s picture
Kathy G.
Posts: 201
Joined: Dec 2012

Welcome Kahea!

Sorry you got a diagnosis none of us wants to hear!

I am sure I speak for many of us when I say your reaction is understandable...we have all felt that way at one time or another while on this journey...

You will get thru this!

Glad to hear you have an appointment with a oncologist. I know there is a sample list of questions to ask, but I can't remember where...sorry! I am sure one of the ladies who follows can help you out.

It is always suggested you take someone with you to your appointment as sometimes our emotional state of mind affects our ability to hear and remember what is being said.

 

One of the most reassuring things I heard on this board was that cancer has become a more treatable disease rather than a death sentence. Think positive, read thru posts on here, try not to self-diagnose by researching the internet...it can scare the hell out of you!

Stay busy trying to keep your mind on other things.

And come back and let us know how you are doing.

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Welcome! I'm glad you found this group but sorry you had to. Can you give us a little more information so we can better help you? (1) how were you diagnosed? Biopsy, or another type of scan? (2) Cancers come in Grades - I, II, III. Did they give you a grade for your cancer? For me, I was diagnosed via a bad pap smear, followed by a high CA-125 blood test, then a endometrial biopsy, so I knew I was Grade III even before meeting with the gyencologist oncologist. Have you gotten any information like that so far? Let us know, and best wishes. 

Eddy405
Posts: 3
Joined: May 2018

What number was your CA125

It happened to Me's picture
It happened to Me
Posts: 204
Joined: Apr 2014

Kahea, you have come to the right place.  These women are wonderful.  I am sorry you have received a cancer diagnosis but am happy you have reached out.  I don't know how much you have read so far on this discussion board, there are some great discussions and I know some of these ladies will be able to guide you to some threads on questions to ask etc.   I do have a few things to begin with though.  Try not to get ahead of what you already know.  And PLEASE don't look at the internet.  The statistics are old and outdated.  Remember you are a statistic of one.  A couple of things for your appointment.  If you can, take someone with you to write things down.  Take a list of questions  I know there is a discussion thread that gives you questions to ask but one of the other ladies will know that and can help guide you to that.  The other thing that helped me that a friend who had cancer told me was, don't look too far ahead.  Only look to the next event, which in your case is your gyn onc. appointment.  Since there are so many different kinds of Endometrial cancer, one of the big questions is what kind is it (if they know based on your tests you have had) and what are the options for you.  What happened with me is:  I had been bleeding or spotting for over two months.  The gyn did a pap test and it came back with two abnormal findings.  They did a colposcopy (took tissue from the uterus) and then called me to tell me I had to see the doctor that I had cancer.  The gyn doc told me that I had endometrial cancer and that I would be sent to a gyn onc and they would do a hysterectomy and probably radiation.  What they didn't tell me was that I had a rare type of endometrial cancer.  I found that out from the gyn onc.  At our meeting, he asked me tons of questions and then did an exam.  They set me up for surgery.  Prior to me getting to the first appointment, I asked the gyn what tests could we do prior to my 1st meeting so we wouldn't delay anything, so the gyn onc would have the information he needed.  They told me I would need a CT scan.  So, I had the CT scan done prior to my 1st meeting with the gyn onc.   The other ladies on this board have different stories of how their doctors handled the situations.  You will get a vast array of information that you can do with what you want.  These ladies are very honest and open with questions.  You can come and cry, laugh, be angry etc. and these ladies will be there to support you.  I will tell you that I had a hysterectomy, 6 rounds of chemo, no radiation and I am less than a year away from my 5 year NED mark. NED means No Evidence of Disease.  I found that I was much better off finding things to be thankful for, laughing and making fun of myself and that helped the people who care about me cope too.    I didn't know what I didn't know either.  Remember you are not alone, take a deep breath.  You will get through this.  Stay as positive as you can.  I know that is hard when you get blasted with news like this.  I think this part is the worst, the not knowing.  

Jeanette

kahea's picture
kahea
Posts: 6
Joined: May 2018

Thank you so much for your support!   As of yet I haven't received any information regarding my cancer other than that I have it.  I have been bleeding since March 15th and went in for a pap.  The results were abnormal and I was set up for a cervical biopsy one week and a week later I was scheduled for a uterine biopsy.  When I had arrived for my second biopsy I was also expecting to get results from the first as during the first biopsy the gyn told me that I had a "high grade lesion" on my cervix.  The doctor was out on delivery and had to push me back two different times however, he said he needed to see me today (this was yesterday).  So going in I knew it was going to be bad news.  He told me that the cells that were found on my cervix were endometrial cells and said he wasn't going to need to do the uterine biopsy.  Other than that I haven't been given any information.  I was referred to a gyn onc who I will see on the 21st.  My gyn did tell me there would be further testing such as CT scans and such but that will depend on the gyn onc.  

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Welcome to this club no one wants to join, kahea. It is a very wonderful group of women here, so you have landed in a good place.

When I was diagnosed in January, I started this thread and many women added their helpful thoughts and suggestions: What do you wish someone had told you?

I suggest you call your current doc's office and request two documents that you are entitled to: Your pathology report and your operative report. The former will tell you important details about the grade and type of endometrial cancer and the latter may give you some helpful information. The latter is probably only available if your biopsy was done in an operating room instead of your doc's usual office. In general, I recommend you routinely get copies of all operative and other reports, as sometimes there's information in them a doctor doesn't think to mention.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

kahea, try to take a breath.  That your doctor turned you over to work with a gynecologic oncologist is good.  Since you just had a cervical biopsy, I think you will find that that is not enough to really know what is going on.  I don't know what he/she will say, but they typically cannot diagnosis from just the one biopsy.  I would suggest, if possible, take someone with you who can take notes or be a second set of ears.  

You had just the one biopsy, so I would suggest you ask:  what is the next step?  are there other tests that need to be done to determine what we are dealing with?  It may eventually lead to a hysterectomy, a complete hysterectomy, I don't know.  You will be working with the right kind of doctor though.  PLEASE let us know how it goes and what is next for you.

We are here for you so please come back and let us know how it goes.

Eddy405
Posts: 3
Joined: May 2018

I just finished radiation for breast cancer ILC with node involvement   I was so happy oncologist said see you in four months. I went to

my Gyno for regular pap smear and it came back normal. But I told my Gyno that on my chest abdomen and pelvis scan I had a 5.7 cm cyst on ovary and a fibroid. He thought with my BC that that we should do ultrasound and CA 125blood test. It came back 55 slightly elevated also I had large polyp on lining and lining was thick. He scheduled to have polyp removed and scraped lining the pathology came back abnormal. So I have appt with oncologist this Thursday help I’m a mess more cancer 

MugsBugs
Posts: 103
Joined: Jan 2018

Abnormal doesnt necessarily mean cancer.  It might be possible with your history of BC your gynocologist is being very cautious.  I pray it isnt cancer but if it is the facr that your biopsy came back abnormal and not absolutely positive for cancer it will be highly treatable.

Good luck and let us know how Thursday goes.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Eddy405, I am sorry to hear what you have gone through so far, and good for you being on top of your body and following up.  You might want to check that it is a gynecologic oncologist you are visiting with on Thursday as they specialize in gyn cancers.  I hope it is nothing, so please come back and let us know how you are doing.

Ginbow
Posts: 1
Joined: May 2018

ok ladies .. I don't do chat rooms but here I am.. lol read many post and support seems to be they key word here... so here I go .. huge family history of cancer .. even being a medial professional .. ugh we are the worst .. I waited... had history of pylops x2 which were removed I was good till Feb saw a speck and I mean a speck of blood and thought here we go .. fast forward.. atypical hyperplasia ... that's precancerous.. so on 5/11 had TAH/BSO et al  gone robotically ... doctor says .. cancer free .. woot but then it happens .. they do a biopsy of everything .. Stage 1 .. which sounds great right.. follow up come back in 6 months and we will keep tabs on every thing ... so since my spidey senses are already peaked and I need more details .. gotta love google .. I get a mammogram... now the right breast is positive ... so I'm really having a mental break ...possibly more surgery if this is positive after more testing ... and now have decided colonoscopy and insisted on genetic counciling ... I know many here are battling more significant stages .. but it's important that even low stage cancer patients don't just take it for granted they are done... I look to you ladies for inspiration.. btw robotic is they way to go .. I was good within a week I'm 3 weeks Post today and for the most part I'm good just sore tummy and nerves.. bless you all G 

Thiughts?

Northwoodsgirl
Posts: 506
Joined: Oct 2009

None of this is easy but this is the place for support. The thread about what one should know or ask their gyn/Onc is very helpful. I just want to reiterate that this is the place for help ask you fight the diagnosis of gynecological cancer- no matter Stage, Grade, or Reoccurrence. Peace and grace, 

Lori

janice11
Posts: 3
Joined: Jun 2018

on april26 i found out i had stage 1 low grade endrimetrial adenocarcinoma endrometroid type after an in dr office biopsy. i had my surgery june 7, 2 weeks ago. i had everything removed. ovaries, tubes, uterus, cervix and they checked my bladder. 2 days ago i get a call from the surgeon saying its actually grade 2. and i have been referred to bc cancer clinic. ( i live in bc canada ). he said no lymph node, no blood vessel invasion,low grade, stage 2. he said the cancer agency may call me or they may not depending if they think i need more treatment. i couldnt handle waiting so i phoned bc cancer and they said they got the pathology and its been referred to a doctor and if i dont hear anything by next wednesday i should call. im not to sure what has happened to me but i have been crying since that phone call, i can almost not breath, i dont know what has happened to me. i have become so scared. yet it is all out of me. what is gong on with me and will i be ok. i feel like ive been traumatized. im 56 years old. ugh.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

janice11, please try to take a breath.  It is very overwhelming but you are not alone and you can come and ask us anything at any time.  Low grade is good news.  It means it has not spread and may be limited to your uterus - but I am not a doctor.  (Low grade is still good)  Get ready for your meeting and read what is here on the CSN.  Stay away from Dr. Google - he is a stupidly out of date doctor.  The great women here will be happy to answer your questions.  

janice11
Posts: 3
Joined: Jun 2018

your right, thank you. i got lost yesterday and lost my mind for a bit. thank you. 

 

 

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