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Newly Diagnosed

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

Hi.  It's been a whirlwind couple of days.  I went in to my OB/GYN on Wednesday after noticing a pink discharge Tuesday night.  At 62, I knew this wasn't normal.  OB/GYN did an endometrial biopsy and seeing the amount of tissue she got, she immediately scheduled me for ultrasounds, both external and transvaginal.  Pathology came back Friday with carcinosarcoma.  I immediately got on the internet (wrong thing to do) and freaked out.  OB/GYN said the ultrasounds only showed some small fibroids, nothing else, but I am scheduled for a CT scan on Friday.

My mom had endometrial cancer, and by the time she was diagnosed, it had spread to her lungs.  She passed less than two months after the first indication that something was wrong.  I know I'm not my mom, but I can't help but think about how quickly things progressed.  

I have been alternately scared, defiant, determined, and angry.  I am grateful to have found this board, and I have been reading here voraciously since Friday afternoon.  I am inspired by those ladies who have been battling this disease and sharing their experiences.  You all have been a great help already, and my journey has just begun.  

I have been blessedly healthy up til now, so dealing with the vagaries of the whole health care system and being my own best advocate is going to be a whole new challenge as well.

So much for my planned retirement!

AWK
Posts: 364
Joined: Mar 2013

That run up to surgery or treatment was the worst part of the whole journey.  This in looking back after two years of more tests and treatments.  During this time it is important to stay busy, stay in your routines and do things you enjoy. You can do this.  Many of us are living fully and have had amazing experie ces because of, and in spite of, our journeys with Cancer.  

Ask questions, air out your thoughts or emotions, this is the place for it.  Keeping you in my prayers.  Anne

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

Yes, the waiting to get started with whatever is to come is difficult, but I have been trying to keep busy with my normal routines.  Gardening, cycling, my horse, dancing, movies with friends.  The weekend has been blissfully busy. These things make me happy and keep me centered, and I plan to keep doing them as much and as often as possible going forward.  

AWK
Posts: 364
Joined: Mar 2013

My riding has really been great for me since I picked it up again last year.  My doctors fully encourage it Even as my cancer progresses and treatment plans change.  Keep it up as much as you can; my husband will tell you it has been the best therapy/medicine I could ever have.  

Hugs - Anne

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

Both bike and horse.  My gelding is 26 now and has ringbone in one foot.  I don't ride him very often, and we don't jump anymore, but getting out to the barn and spending time with the horses is always good for my head.  Isn't the quote something like, The outside of a horse is good for the inside of a man (or woman.)?  He's gotten me through divorce and deaths, and I'm sure he will be there for me now.  Glad to know there's another horsewoman here, Anne.

I do spend more time on my bike, 3-4 hours a week.  I am setting PRs more often than not now, (I had a cancer defiant ride Saturday morning!) and I hope I can continue.  I had plans for several big rides in the fall.  Obviously, those plans are on hold for now, but I won't be off the bike until I can't get on!   

AWK
Posts: 364
Joined: Mar 2013

He is a thoroughbred rescue and 18.  We do dressage.  If I end up stopping work I already made arrangements to help out in whatever way I can at the stable.  So good for my head.  Other ladies here are into gardening (ro10), swimming (Abbycat) and things that we all really enjoy.  

I am looking at a surgery next week and the surgeon said he is fine writing me out of work but wants me on the horse as soon as I am physically able to be.  Amazing how the doctors fully support my equine therapy!  

Hugs,  Anne

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

If it helps i am a big bicycle rider and rode my bicycle during my chemo and radiation treatment. My oncologist scheduled my infusions such that i could take a week in Florida and i biked the entire week. I just planned my bicycling around how I felt. I also had a few geat cancer bicycle rides with my firends and that got me motivated to kick this disease. i was diagnosed 11/2012, did my treatment first half of 2013 and now 2 years out and going for my exact two year scan tomorrow. I still bicycle alot as that is my motivator.

 

Riding a bike or riding a hourse it is wondeful to do what  you like. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1744
Joined: Jun 2015

Editgrl,

You just wrote my story as well!  I am 58, retired 1-1-15 and found out I have endometrial cancer on 5/28. Like you, this forum has been the best thing for me since that time.

Also like you, I have had amazing health to this point.  Not even a cold in the last 5 years. So, it is most definitely a learning experience. So far, I have had the CT/PET scan which shows the cancer hasn't spread. Since I have the aggressive kind, that was more of a relief than I could even begin to explain. I truly thought I had a death sentence handed down. So, now I know there is hope and that if we had to have this darn crappy disease, that at least they have made huge strides to help us.

I meet my surgeon next Friday. Then, my surgery will be scheduled and I can ultimately find out if anything is in the lymph nodes. Nothing seems to happen fast enough. I'm ready to get this part over with!

I'm sorry for all of us that had to meet like this! And, I'm more grateful than ever for all of the brave women who have helped us by sharing their stories. 

By the way, my sister has had thyroid, endometrial and pacreatic cancer. She is the strongest woman I know! We both have Lynch Syndrome which is a genetic mutation that increases our risk for multiple cancer types.  I will say, until I had to face this, I had no idea how it really felt. I don't think anyone can truly understand it until they live it. (I could have done without the understanding!)

Take care of yourself and I hope you find doctors you are comfortable with. I think that is critical for us.

Cindi

Tikvah
Posts: 24
Joined: Apr 2014

Cindi,

you say you are before surgery.  I had a radical hysterectomy and two days later I was out at a restaurant with my family eating Thanksgiving dinner.  Not dancing, mind you, but it was robatic and minimal pain.  Just a lot of fatigue.  Take it easy.  Thank goodness your cancer has not spread on the CT/PET.  for me, staging was at and after surgery with pathology.  I had several lymph nodes invovled.  

Hope nothing is in your lymph system!!!!!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1744
Joined: Jun 2015

Thanks for the feedback.  My hope is to have robotic surgery as well. I sure hope I do as well as you did. That is really great news.

My local oncologist said he doesn't think I will need chemo if this didn't go to the lymph nodes. That would be a relief too! But, one step at a time. I'll see what the GYN/Oncologist says and go from there.  He also said I would get the staging after surgery.

 

shush_silent
Posts: 6
Joined: Jun 2015

I'm so sorry to meet this way.. but glad you, like the rest of us.. found a safe place to speak up...

I agree with what's already been said.. Cancer use to be a death sentence.. many years ago, we'd call the priest before we'd even notify the rest of the family.. BUT.. science, and experience has brought us a long way! It's positively spooky sometimes to think how far they've come! The hardest part is what happens in your head.

When I first got diagnosed I was shipped from one specialist to the next and all of them took images of the chest to be certain things didn't spread to the lungs.. so use your experience with your mom to make notes, ask questions, demand answers.. and own your cancer so it doesn't own you!!

Hoping to hear good news from you in the future.. sending gobs and gobs of good vibes!!

cleo
Posts: 145
Joined: Sep 2009

I'm like a broken record.  Only post now to say Grade 3/4. and this is year 8 NED.      Don't research on the internet and defiant, determined and angry worked for me.

Also healthy.   I was also fortunate with fast diagnosis and treatment.   Hardest thing...the system in control!!         Retirement is great!      Take care.

Cucu me
Posts: 214
Joined: Apr 2015

We, the new ones are scare and this forum helps us alot.

It's very  strange to see how many healthy women, even without symptoms or family history are getting diagnosed with cancer.

I was healthy, no family history, no anything else,that could cause it.

In my case I think the huge stress in my job, hormone imbalances and eventually the chronic constipation in my past.

But who knows....

myn1
Posts: 2
Joined: Jun 2015

Hello

I am 41 years old and like you was very healthy. Thought i was immune to cancer even! But hete i am dx in april 2015. Ive had total hysterectomy with tubes and ovaries removed ad well and started chemotheraphy three days ago. What a ride. Up till now i worked fulltime as a LPN and was really fit. This is all still new and odd to me you know? I just began being symptomatic and this disease made it to 3/30 nodes. No it has not metastasis. Im glad i found this blog.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

@ Cleo...I just LOVE hearing your kind of "broken record!"   Welcome to the newbies.  I didn't find these boards til I was done with EVERYTHING!  What a differance it would have ment to me to have had the wonderful ladies to talk to!  Whatever you find out you have, whatever the grade or stage, I can assure you someone has the exact same thing, know someone who has, or is a caregiver for someone that has been there and done that on these boards.  Someone is alway here, I'm the night owl!  EVERYTHING is discussed here, nothing is out of bounds. Ask questions even if it sounds silly...it's not.  If you want to ask a private, us the email option.  I am a five year surviver of UPSC, stage 1a, grade c, very agressive.  As the other ladies said the shock of diagnoses, the whys, the fear, and the fact that no one gets in a hurry over our health is something we have all been through...nights are the worst.  Just remember, unless you get hit by a Mac truck coming home from the grocery store, you are not dying today!  There are tons of things to keep living well and happy lives!  Just don't forget to breath...and laugh!  LOL !  Best, Debrajo

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

Good to hear there's another nightowl here!  And I love what you said:  You are not dying today.  I may make a sign and put it above my bedroom mirror to remind me every morning.  Thank you, Debrajo.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2877
Joined: Mar 2013

Editgrl, welcome.  I am sorry we all have to meet this way, but please know all the lovely ladies are here to listen and help. 

I am sure it is hard to separate out you from your mother's experience, but as we all know here, you are a statistic of one.  Please try to take a breath.  You are right about it all a whirlwind - especially at first. 

We are all here for you.

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

for your warm welcome and encouragement.  Your eloquence and generosity in describing your own struggles and victories awes me.  If nothing else, this awful disease has brought me to a place where I find all of you strong brave women.  Hugs to all of you.

Niki1325
Posts: 2
Joined: Jul 2015

Hi to all.  Just diagnosed last week with grade 3 carcinosarcoma.  Next week is full of appointments to clear me for surgery scheduled for the 27th.  I am still in shock.  Reading too much on the internet just depresses me further. My neighbor recommended I join here for support.  And right now it seems like all I have are just stupid questions, like What do I bring to the hospital for a 5 day stay? Who's going to help Dad with Mom? What if I have to go into a rehab facility? And I find I can only talk about this for about 5 minutes, after which I just start losing it.  Is this normal? Thanks ahead of time.

Kaleena's picture
Kaleena
Posts: 2056
Joined: Nov 2009

Hi Nikki:

Sorry you had to come to this site and sorry about your diagnosis.  However, it would be great for you to start a new thread so that all of the posters here can respond and support you.   Remember, no questions are stupid.   They are all relevant so ask away.

Depression is normal, especially at this part of your journey.  You will have many ups and downs.   First of all, stay off the internet unless you are on a reputable site.   Searching for information only gets you scared because most of the stuff is way outdated and has changed in so many ways.

Questions about hospital stay is bring with you some books or stuff like that (ipad).   After your surgery, the main thing is to make sure you get up and walk as much as you can.  The sooner that you can have your first bowel movement, the quicker they will release you.     I don't know why you would have to go to a rehab facility.    Sorry I can't help you about your Dad and Mom. (unless they have neighbors, church group, friend group, or who ever else they may know to help out.

My best to you.  I pray that you find answers to all of your quetions.

Kathy

Niki1325
Posts: 2
Joined: Jul 2015

Kathy, thank you for your response.  I thought the message board was set up as topics, so I posted under new diagnosis. Have no idea what to post under now.

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

Under "Uterine Cancer" at the top of this page, where it says Post New Forum Topic, you can title your thread whatever your concern is.

As you can see from the first date of this topic, I am fairly new to this board as well.  It has been a shock, but the women on this board are very welcoming and there is a ton of knowledge and support here.  You are not alone in dealing with this.

Chris

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2877
Joined: Mar 2013

Niki, it IS overwhelming and you are not losing it.  It is completely normal to feel the way you are.  There is no stupid question and you are right, you need to stop reading on the internet.  There is CRAZY stuff out there that is not going to help you.

If I can make a suggestion, this is a journey so it is a step at a time.  You can't find out what the plan is for you until you get through the first step.  Sometimes these thread (messages) get really long and it is hard to find the new posts.  I think one of the other ladies gave the instructions on how to post a new question.  You can do it - you have figured all this out! :) Please ask anything - we talk about everything!

AWK
Posts: 364
Joined: Mar 2013

As I always say - the early days are definitely the hardest and most stressful.  The run up from diagnosis to surgery - I look back now after a lot of twists and turns on my ongoing battle 2 1/2 years later and still look back at those times as the hardest and most overwhelming. 

In terms of information as the other ladies suggest - only go to reputable sites -www.nih.gov/nci (National Cancer Institute is probably the best.)  And try not to look too far ahead - take things as they come.  Like you, I am a planner.  The hardest thing to do is reach out for, and accept - help.  Ask your doctors or hospital or local American Cancer Society for suggestions on resources for your parents (or your church).  Pre surgery I stocked the house with things they suggested I keep on hand - bananas, potatoes, yogurts, pre cooked foods, soups etc.  It was good - it kept me busy.  I left the hospital in the same yoga pants and sweatshirt I went to the hospital in.  I was in the hospital for five days.  I did take face wipes, pony tail holders, brush, deodorant.  My ipad, cell phone, glasses/contacts and that was it.  They had every other possible thing you'll need.

Stock up your medicine cabinet with stook softener, laxatives and tylenol or Aleve.  I also had prescriptions for pain relief but pulled back to over the counter drugs pretty quickly.  I haven't heard of anyone going to a rehab after the surgery.  Just straight home.  Keep a pillow handy for the car ride home and the first week or so at home.  I needed it to get around, laugh and cough or sneeze.  

You can do this.  Hang tough and make sure you spend time doing things you love to take your mind off of this.  And don't worry about the emotions, very normal and healthy.  I seem to cry in my car for some reason - when I am alone.  As recently as yesterday. 

You are in good company here.  Ask anything.  Hugs - Anne 

pinky104
Posts: 574
Joined: Feb 2013

You probably won't be reading this as your surgery is today, but if you happen to, bring a warm bathrobe or  a throw in case the air conditioning in the hospital is turned up too high.  I had a noisy roommate who left the TV on all night.  Ear plugs would have been a good thing to have.  Hospitals are noisy places with lots of squeaky carts and loud visitors.  You might even want an extra pillow to throw over your ears. You'll be dragging an IV pole into the bathroom, so keep in mind that you don't want clothes on you (like overly long bathrobes) that will get in the way and make you trip.  Make sure your slippers are going to be safe to walk in in case you're dizzy.  Don't bring any meds, as the hospital probably won't allow you to use them.   

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1744
Joined: Jun 2015

Hey Nikki,

Several of us are new to this journey.  As you probably read, Editgrl just had her surgery last week. Mine is scheduled for next week.

One thing I highly recommend - please get something for anxiety.  I use Lorazapam when I get overwhelmed. And, I have NEVER used anything.

Secondly, take the time to read the posts here. They are so full of information, comraderie, support and a safe place to land with questions  and venting.

I have come to depend so much on this wonderful group of women.

It really sucks to have to deal with this. However, I am very grateful to have been brought into this team. I hope you also find a sense of peace here.

We are here for you!

Cindi

Port39
Posts: 7
Joined: Jul 2015

I am new too! Here is the list I was given with a few notes that work for me. I had my hysterectomy surgery 2/27/15 and was in chemo 2 weeks later with a port, at age 39. 

1) easy bland simple proteins. Cut as much sugar out of diet as you can (cheat days when feeling better). Also lower the acid in diet, more asperigus,broccoli. Less soda,strawberries. 

2)pillow for car ride

3)micro plush snuggly for the cold chemo rooms

4) stay hydrated but stay away from plastic. Good choice Is insulated stainless steel.

5) load a smartphone or tablet with a variety of entertainment.

6) stretchy easy on/off/access clothes. Everything irritated my stomach for a couple weeks.

If you have to have chem, get a port for iv fluids.also ask for the topical numbing cream to rub on 30 mins early.

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