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Just diagnosed.

wolfera
Posts: 46
Joined: Sep 2018

I just received word that I have Grade 1 endometrioid carcinoma. My head is spinning. I’m terrified.

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

I'm very sorry to hear that your pathology came back as cancer. But I'm glad that your appointment with the oncologist is early next week – I know that I felt better once I knew what the treatment plan was going to be.

A couple of suggestions:

If you can, take someone with you to the appointment. A second set of ears to take notes on what the doctor says can be very helpful. If you don't have someone that can go with you, ask the doctor if you can record the discussion on your phone. My doctors didn't have any objection to this.

Also, if you haven't done it already, you may want to read the NCCN patient guidelines for uterine cancer that were just published a couple of weeks ago. This will give you an overview of the typical treatment strategies so that when you meet with the doctor you'll be more prepared to ask questions about what is being recommended (and why).

https://www.nccn.org/patients/guidelines/uterine/index.html

It's natural to focus on the worst scenarios when you're first diagnosed, But please keep in mind you have the type of cancer that is most common and has a much better prognosis than other more aggressive cancer types. When caught early, your type of cancer is highly curable.

wolfera
Posts: 46
Joined: Sep 2018

Thank you for your kind and positive words. This guide is very helpful. Just trying to take it all in one moment at a time.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2483
Joined: Mar 2013

wolfera, first, try to take a breath.  Find a gynecologic oncologist to work with.  With Grade 1, the lowest, they will make a plan and you can work that plan.  Ask lots of questions and find out who you can call if/when you get more.  

It is overwhelming, but you can come and tell us what your treatment is going to be.  Again, Grade 1 is low, and the plan may be minimal.   

Denise66
Posts: 52
Joined: Aug 2018

It may not sound ok now, but if you are going to have Endo cancer, grade 1 is the best to have. Was that diagnosed after your hysterectomy via the path report?  Generally, stage 1 does not migratr out of the uterus .Do you know what stage? 

I'm Figo 2, stage 1B.  I know it's very scary.  I was just diagnosed in August and the ladies on the forum are awesome!

 

wolfera
Posts: 46
Joined: Sep 2018

Thank you all! The Grade 1 diagnosis is only after the initial endom biopsy from a d&c. I meet with the Gyn oncologist on Tuesday. I guess I will learn more at that appointment. I really appreciate the support. It’s day 1 And it’s been tough and emotional. I’m grateful to have a strong group of family and friends and, of course, you ladies. I know it sounds stupid, but I really thought this would never happen. I really thought all of the Gynecological problems I was having was something minor...not so much.

 

I’m terrified that after hysterectomy they will determine that it has spread and it’s not Grade 1 and significantly more advanced. Who am I kidding? I’m terrified about all of it.

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

It is easy to get scared and overwhelmed, but just take one day at a time. Don't worry about "what if?" There is no need to worry about something that may never happen (a more advanced diagnosis). It really will all be ok. :)

janaes
Posts: 703
Joined: May 2016

I know its hard to not go to the worst situation. When i found out i had cancer it was scary. Having a supportive family really helped. It also helped to stay busy.  I was working part time and that helped me keep my mind focused on the moment.  Of course i had my feelings but keeping busy helped. You mentioned you do have supportive family and friends. Dont be afraid to lean on them if you can. Once you talk to your doctor at your appointment you will know what you need to do next and you will have things to do to get ready. Like i said though if you have feelings getting them out helps.  Cass83 is right worrying about the future wont change it. Taking one day at a time is helpful.  Take good care of yourself.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I know it's scary but hopefully the low grade means they caught it early. Even if it's a higher stage the lower grade is better. 

wolfera
Posts: 46
Joined: Sep 2018

I’m trying to stay positive. It’s been tough. thanks for the suggestions and guidance - it’s been helpful.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

I agree with LadyMox, my biopsy showed grade 2 and I kept thinking that after the hysterectomy I would be upgraded to grade 3, for some reason. 
Amazingly I was downgraded to grade 1 and stage 1A
You never know, keep the faith and breathe :)

wolfera
Posts: 46
Joined: Sep 2018

That’s reassuring! I have my first Gyn onc appointment on Tuesday. How soon do they usually do the hysterectomy? My regular Gyn seemed to think it would probably be pretty soon since I’m still bleeding pretty heavily.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

some hospitals do have restricted schedules if you will have DaVinci robotic because it is an expensive procedure and maybe the place has only one machine. I told my Dr that I wanted to get rid of the "thing" asap. My original schedule was July 23rd and out of the blue it was moved to July 6th and I did not have bleeding. You can mention that you have anxiety issues and that you feel overwhelmed, adding that to your heavy bleeding. 
Who is your Dr? 
Please go ready with a list of questions and expect maybe some resistance to get all the answers. You could ask to record his answers.
Breathe!

wolfera
Posts: 46
Joined: Sep 2018

Thank you so much. i have a list and most of my med records so I think I’m prepared as I can be right now. My regular GYN did give me a script for Xanax. I had never taken that before so I decided to try 1/2 today. It helped for a little so I’m thinking I might do that on Tuesday to help take the edge off.

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

yes, do not take the whole dose take from the beginning . I take Ativan, similar, as needed.

MugsBugs
Posts: 100
Joined: Jan 2018

They will schedule you for the hysterectomy ASAP but first the Gyn/Onc will/should have you go for a Cat scan.  I had a cat scan of upper/lower with contrast.   This will let them look for any other issues that may also be going on.  Unfortunately for me, they found what looked like a mass in my colon in the cat scan so they scheduled me for a colonoscopy.  The Gyn/Onc said that if there was something from the scan then they would try to take care of both issues in one operation.  Luckily the colonoscopy showed only diverticulosis and a few benign polyps.  My diagnosis was January 2.  First met with the Gyn/Onc on January 14 and had surgery on January 29.  This was pretty quick. 

wolfera
Posts: 46
Joined: Sep 2018

Thanks for this information. A timeline is helpful for me. I’m glad the colon issue was benign. I’m sure that was a relief. I have my first oncology appointment tomorrow locally and then another on Monday, Oct 8th at Johns Hopkins. I guess I will have more information then. Thanks for reaching out!

LisaPizza's picture
LisaPizza
Posts: 166
Joined: Feb 2018

I had a D&C 10/18, results a week later (only "pre-cancer," but suspicious for more), saw gyn onc 11/1, CT 11/14, surgery 11/27. I think it can vary quite a lot. I also had to coordinate two surgeons (desperately needed gallbladder out at the same time). They screwed that up (2nd surgeon forgot to schedule me), but they got me a substitute surgeon (for the gallbaldder) despite being late in the game, so in the end it was all good.

wolfera
Posts: 46
Joined: Sep 2018

Wow! That adds unnecessary stress in an already stressful situation, but I’m glad it worked out. I’m hoping things move fairly quickly. The waiting game is agonizing.

Kaleena's picture
Kaleena
Posts: 1891
Joined: Nov 2009

Wolfera, sorry to hear that you have been diagnosed.   The first time does make your head spin.  When I was diagnosed I was terrified.  I did the silent scream into my pillow. Then I decided to take action and not let it win.  You can do this.  You are a lot stronger than you think.   Yes you will have something called a new normal.   But that’s ok.  I was diagnosed at age 45 with Grade 2 Stage3b.  It was in my left ovary, uterus and cervix .   I am now 58 years old!  Sending you caring hugs.

Kathy

wolfera
Posts: 46
Joined: Sep 2018

Thank you for sharing your journey. I am grateful for all of the support!!

janaes
Posts: 703
Joined: May 2016

Wolfera just wanted to let you know i will be thinking of you tomarow as you go to your appointment.   I will be at a follow up cancer visit tomarow.  

Janae

wolfera
Posts: 46
Joined: Sep 2018

Thanks for remembering! I hope your appt is good!!! Let me know!

wolfera
Posts: 46
Joined: Sep 2018

Thinking of you. How did it go today?

janaes
Posts: 703
Joined: May 2016

My went good. Every thing looks good so far. Im going to be doing a cat scan in the near future because its been a year since ive had one.

How did your appointment go?

 

wolfera
Posts: 46
Joined: Sep 2018

It went ok - not a whole lot of new information. she wants to see a better ultrasound and then schedule surgery. It was a little bit daunting walking into the cancer center. Everyone was so nice and compassionat, but the first time being there was overwhelming. Other than that it was a fairly positive appointment, all things considered.

next is Hopkins on Monday.

I’m glad to hear your appointment went well, too!! That is always good news!

Armywife's picture
Armywife
Posts: 191
Joined: Feb 2018

feel like home after a while!  I still run by and see my nurses and favorite chemo buddies, and I've been done for a year.  Enjoy the fellowship!

janaes
Posts: 703
Joined: May 2016

Im glad your finding some possitive things. I remember hearing alot on this board about how nice thw nurses are. BWhen i was done with treatments i accually missed the nurses. Good luck on your appointment on monday.

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