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I Am New Also

amafay
Posts: 2
Joined: Jun 2021

Hello. I am newly diagnosed with Uterine Cancer, Carcinosarcoma. Last CT scan tomorrow with surgery scheduled for June 23, 2021. I am in that initial scary place however look forward to reading about your journeys as I believe they will help me with my own. Any suggestions appreciated.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I'm sorry you had to find this site, but glad that you're here early in the process so that you can benefit from the experience of others. For now, you may want to check out the following links (also available in the FAQ post available at the top of the topic list):

What do you wish someone had told you?

Tips for surgery and after?

You may already be aware that Carcinosarcoma is a rare form of uterine cancer. I was also diagnosed with this type of cancer in 2016. You can read about my cancer experience by clicking on my user name in the blue box to the left of this post.

Please come back with any questions you may have as you learn more about your planned treatment or comments in general.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

amafay, welcome.  We understand that 'initial scary place'.

cmb has provided a lot of good links to get started with.  Waiting is very hard. You have found a safe landing here.  Please ask anything.

New Grey Egg
Posts: 1
Joined: Jun 2021

Hi, Amafay.

I'm in the same boat as you! At a couple of weeks into the diagnosis, it's still scary. 

I was just diagnosed on May 17 with endometrioid adenocarcinoma. MRI indicates it's contained within the uterus and was caught early, for which I am grateful. I had my pre-op and admissions meetings yesterday for surgery on June 11. 

I'm also hoping to learn a lot from this site! 

It's great to meet you. 

Lusafag
Posts: 21
Joined: Jun 2021

Good luck for surgery Sis.

I had it done.

It was Total Abdominal Hysterectomy with ovaries,tubes,cervix removed laproscopically under not very good circumstances.

Do ensure your surgeon's competency and sterilization,although I wish and hope you are at some better place.

Best wishes.

Mine too was almost similar,confined to endometrium only.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

Welcome to both of you! So glad you found us. Please feel free to ask us anything. Someone will be along that most likely has an answer.

The beginning of this process generally is the most difficult emotionally. Once you have a plan, things move forward and you will find yourself calming down. In the meantime, if the anxiety gets to be too much, don't hesitate to ask for meds to help you. 

Wishing you both speedy recoveries from you surgeries. Please come back and let us know how you are doing.

Love and Hugs,

Cindi

alicia2020
Posts: 162
Joined: Sep 2020

This forum and the wonderful, generous women here have been invaluable to me in the last year. If you click on iur names (in the blue boxes) it will take you to our "About Me" pages where many of us have documented our journeys. It IS worse at the beginning! We are here for both of you for answers to questions and support. Good luck with your surgeries and let us know how you are doing!

Hugs, Alicia

BKDRPH
Posts: 3
Joined: May 2021

I start chemo this next Tuesday.  Everything I have been reading implies that the chemotherapy is well tolerated. I would appreciate any information on what to expect and how to manage the side effects.

Forherself's picture
Forherself
Posts: 563
Joined: Jan 2019

I can't answer your question, but if you do a search of the uterine cancer page there is lots of information about these two drugs and womens tolerance of them.  I hope someone pops up soon to answer your questions.  Icing is one of the suggestions that seems important.

 

LSpry's picture
LSpry
Posts: 3
Joined: May 2021

I'm on those two drugs six times every three weeks. Round three is this week.  Infusion is Tuesday (very easy; not uncomfortable) and Wednesday I'm pretty good just a bit tired. Thursday/Friday more tired, often go back to bed after breakfast for an hour or so. I own and board horses (four) and take over chores again Saturday. Get ahead of the constipation, that's my most important piece of advice! After trying several over-the-counter 'aids' I got a prescription called in for Laculose - after the second infusion I took that once or twice a day (plus some prunes for lunch) first four days. Otherwise, small bits of indigestion (ginger is my buddy; GinGin candies and fresh ginger in my water) but no nausea. I know the effects can be cumulative so I have no experience beyond the first two....oh and of course, very little hair left despite using a cooling cap. I bet you'll do fine! I feel like this is the 'easy part' after the shock of diagnosis; it's the standard treatment for USPC so not questioning and happy to be doing 'something'...I think when this series is over, I'll be a lot more anxious.

 

BKDRPH
Posts: 3
Joined: May 2021

Thank you taking the time to provide so much information. This knowledge is helping control some serious anxiety. It seems that staying ahead of any nausea and constipation is important so that will be my priority.  And I agree, I am glad to be doing something!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

BKDRPH, cmb had pinned to the top of the Uterine boards a lot of conversations we have had that are just chock full of information.  If you go to the top, click on the Frequently Asked Questions (FAQs) you can scroll down and click on links directly related to some of these topics.  The one, "Ladies going through chemo" had a lot, but everyone will chime in with specific questions.  Icing?  there is a pin on that.  Chemo is constipating - how is that handled?  Please keep in mind that we are all different and some ladies have experienced to complete opposite of constipation.  

Please be sure to let us know how you are doing.  

 

BKDRPH
Posts: 3
Joined: May 2021

I have read every technical medical report about uterine serous carcinoma but really needed the practical knowledge. This information is very helpful.

alicia2020
Posts: 162
Joined: Sep 2020

NTFC is right that we are all very differen!

It was just last November that I faced my first infusion of P & C. I was terrified, but it went fine. My chemo nurse is wonderful and helped us through every step of the way. I finished in March and think I'm recovering well. I started a thread .....that you've probably already found, but it's "Waiting of (for*) the other shoe to drop." It's a long thread, but follows from my first infusion up to just a week or so ago. It's me telling my story, but might be very helpful for you to see all the ladies responses to my questions. I took all the ladies advice and iced both my hands and feet. I chose to do the "cold-capping" to try to save my hair. 

Everyone here said "It's doable." It is!

Best to All, Alicia

Lusafag
Posts: 21
Joined: Jun 2021

Surgery is going to be ok,after surgery your tissues will be send for his to pathology,and your cancer stage,and grade will be determined.

I hope you get through it fastly.

Just follow your doctors and implore them if you find them delaying.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

After your surgery make sure you walk as soon as you can.   It will help in many ways.    You can do this girl!    I was diagnosed in 2005.  It was in my uterus cervix and left ovary.   It will be 16 years in September.    I was grade 2 Stage 3a.    I did have two recurrences.   I just met with my oncologist and I am now good for a year! 

my best to you on your upcoming surgery

Kathy

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