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Newly Diagnosed

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

Hi everyone. 

On August 1st, I was diagnosed with endometrial adenocarcenoma stage 1.  This came as quite a shock to me.  For as long as I can remember my periods only occured about once or twice a year.  About two and a half years ago, I started getting them on a monthly basis and thought my body was finally getting itself right.  About six months later, it changed again and I started having periods about every three weeks.  Then it became every other week.  In the last six months it hadn't stopped at all.  So when I got insurance through the state of Michigan I talked to my PCP and he sent me to a gynocologist to get checked out.  Originally the gyno suggested that I do a D&C and then get an endometrial ablation (a surgery to burn the lining of the uterus) because after a transvaginal ultrasound it was discovered that the lining in my uterus was 39mm thick (normal is about 8mm). 

I have always wanted kids - it has been my dearest wish.  The gyno explained that if I did the ablation I would also need a tubal ligation because pregnancy after the ablation would be life threatening.  For about a month I went back and forth about whether I wanted to do this because of my not having had kids yet and still having the desire to do so.  Finally I made an appointment with the gyno again and said I would do the D&C but that I didn't want the ablation to be done.  He said that because I wasn't doing the ablation he wanted to do a hysteroscopy on me to see what caused the lining to build up the way it did.  So the procedure was scheduled.  I went in for the hysteroscopy and D&C on July 28th.  While I was still out the doctor told my mother he found suspicious cells that he thought were cancerous.  He told me in the recovery room that they had done a biopsy and that there were some "strange cells."  I didn't immediately jump to cancer though in my mind because before the procedure he had said that was a unlikely thing considering I am only 36. 

On August 1, I went to the gyno for follow up and he walks in the room asking how I felt and how bad the bleeding was.  Then he pulls out a piece of paper and without looking at me says, "Well you have cancer."  Then there was a knock at the door (one of his nurses) and he leaves the room for a minute without saying anything else to me.  I looked at my mom and was like "Well I wasn't expecting THAT!"  He came back in and read the pathology report (which I didn't understand because of all the big words).  He said he had an appt for me at Karmanos Institute the following week and said Good luck.  Oh and that "If you had to get cancer - this was the one to get"

I went to Karmanos and was told I need a complete hysterectomy and bilateral oopherectomy and possible lymphectomy.  They don't know if I will need chemo and/or radiation yet - not until after surgery will they make that decision apparently.  With the type of insurance I have it only covers outpatient surgery so I had to apply for Medicaid to try to get the surgery covered.  I have since learned that because I may only need surgery that I might not qualify for Medicaid.  So I am having to also apply for them to do the surgery on a charity basis. 

I go in on Monday to get Xrays and a CT scan to see if the cancer has spread anywhere else which scares the hell out of me.

In addition to the cancer, I am diagnosed with bipolar 2.  That means I have severe depression more so than mania.  Since this happened, I feel numb.  I don't feel depressed.  I don't feel any of the usual stuff I feel.  Instead, I am too busy trying to get the funding for my surgery and trying to hold my mom together - who has taken this especially hard because she lost her sister in January 2012 (blood cancer). her dad in January 2013(strokes) and her step mom in June 2013 (lung cancer).  I feel like I can't fall apart because if I do it will make it harder on her... so I push my feelings down and push through.

I do feel a little angry about this though.  I HAVE CANCER.  If anyone has a right to fall apart it should be ME.  Instead I am being the strong one.  I am the one that has had to fight for my sanity.  I am the one that has to fight for the ability to get life saving surgery. I am the one that has to go through surgery and possibly chemo/radiation.  I know my mom loves me.  I know she is scared for me.  I just wish I could be honest about what is going on inside my head instead of focusing on her.  Hell - my extended family calls her to find out how SHE is doing more than they call to ask how I am doing. 

I have so many questions about the surgery and the after effects of it.  Yet, I don't know who to ask about it.  For example, I have poly cystic ovarian syndrome.  One of the symptoms of that or complications of that is that I developed insulin resistent diabetes.  After the surgery I won't have ovaries anymore - so does that mean that I won't have PCOS anymore?  Does that mean that my insulin resistence might go away?  Who do I ask?  The gyno or the endocrinologist?  I just don't know.  I feel so lost and so alone right now.

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Hi!
You are NOT alone!

My name is Crystal.
I was diagnosed with Endometriod adenocarcinoma figo II on 8/22/2013
I was told by my specialist the same... It's a good cancer to have. ( is there such a thing)
I take it day by day as i wait for oct 9th.. My surgery date.
I'm still processing and researching. And optimistic.
The ladies here are knowledgeable and friendly.. I'm thankful for this forum.

You will be in my thoughts <3
Best wishes and hugs

Crystal

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

Thanks Crystal.

I have to admit I have felt quite alone.  When I went to the internet looking for support groups online and in my community I have had a hard time finding people with uterine cancer.  I see lots of ovarian and breast cancer sites but not much in the way of uterine.  And the few spaces I have found most of the women are much older than I am and had kids... so they don't really have to deal with the fact that the cancer robbed them of that part of their lives. 

Please keep me posted about how things are going for you.  I will keep you in my thoughts and prayers.

NoTimeForCancer
Posts: 394
Joined: Mar 2013

Lothose, I am sorry that with so many things going on you found yourself having to find this group and deal with cancer.  You have found the place for your fellow peach warriors, and I am so glad you have found us early in your battle. 

I was 49 when I found out I had endometrial cancer, and while I knew having children was really not going to happen for me (I do not have any either), without knowing you,  I did think how difficult this diagnosis would be for a younger woman who would not be able to carry their own child.  It is a loss, and you have every right to mourn that loss as well. 

Please try to focus on you, and what you need to get yourself cured.  The wonderful women here will help answer your questions on surgeries, treatments, etc...so you are not alone. 

 

 

debrajo's picture
debrajo
Posts: 724
Joined: Sep 2011

I, too, am sorry for your cancer dx and even sorrier for you grief in being childless.  As a mother to eight{only five living} you Need to mourn your loss.  Having said that, I must  also say, you don't have to give birth to be a Mommie!  No, it may not be a child of your blood, but it will be a child of your heart and will need someone like you to love them.  The world is full of children that have never known love.  Please take care of yourself, get well, come here and talk to us, and when you are WELL, there will be a forever child waiting!  Ok, I'll stop preaching!  Feel better and dont forget to breath!  Best, Debra   

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

I am so sorry to hear that you cannot have children and you want them.  But DebraJo is right there are a lot of children that need loving Mommies, so that could be an option for you in the future.  Right now think of yourself, breathe and come back here oftern for support from the folks on this site.  You found us early so know that we can be here to help you through this.  Prayers to you. trish

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

I went in for my CT scan a few weeks ago. two days later I got the results. Everything came back clear- no cancer found anywhere else. That was the good news. The bad news is that my liver is supposedly enlarged. I know that I should call my doctor to find out what caused this, but it just feels like until I get answers about the cancer that I don't care what else is going on. Still no answer officially back from Medicaid. From what I hear though they plan to deny me. Expecting that they're going to deny me, my family suggested that I apply for uncompensated care to the hospital to get the surgery to be free. I filed for that the same day that I had the CT scans done. They said that I would get my answer about the application within 5 to 10 business days. It has been 12 days now and still no word back from the hospital. I'm just so frustrated that first Medicaid plans to deny me and then the hospital is taking its time. The longer I go with this cancer inside of me the more likely it is to spread and it scares the hell out of me. I even called my state representative to see if there was anything that they could do to help try to get some form of services for me so that I can have my surgery. They were really nice and sent a letter to the hospital supposedly sponsoring me for the surgery even though that doesn't really mean that they want to give money for it it does mean that they're throwing their name around so that the hospital will think that I'm more important than I really am. It was nice of them but it still hasn't made the decision process any faster. My stress level is through the roof not only do I have to worry about trying to get services for the cancer but we are moving as well. Between the cancer and the moving that means I haven't been able to see my therapist in the last 3 weeks which isn't good considering that I'm also bipolar

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

If I had known that posting on the forum was such good luck I would have posted about my surgery a few days ago! We just heard back and the hospital is going to do the surgery for free!

light42day
Posts: 61
Joined: Mar 2012

That is really good news!  I hope your surgery goes well and you don't need any further treatment.  I also hope that you recover quickly from surgery  and can just go on with your life.  I'm just so glad the hospital is going to cover this for you!  Please let us know how it goes.

 

 

 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

CONGRATS!!!

This is wonderful news!!!

Do you know a date? keep us posted. 

I have not been on in a bit... my stress level has been crazy as well. getting ready for surgery next Wen. 

I will keep you in my thoughts. 

 

hugs,

Crystal

ConnieSW's picture
ConnieSW
Posts: 537
Joined: Jun 2012

I'll be with you in spirit next Wed.  Lothose, let us know when you get a date.  Glad to know one of your burdons got lifted.

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Thank you sooo much! 

This has been a crazy week so far...my mind seems to be in 9 million places.

I'm going in on Monday, to the hospital..to check in and do some tests. Surgery is set for 1pm on Wen. 

Ready for the surgery, but nervous about the process. Keeping my spirits as postive as i can. 

My Surgeons PA says I will be out 4-6 wks...seems like a long time for robotic surgery. 

 

Hugs and best wishes to everyone,

Crystal

 

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Crystal & Lothose,

Just wanted to welcome both of you to the board! It was about this time last year I began to worry about ongoing UTI's I had been having and then I began to pass blood after already going thru menopause. I was diagnosed in late November with uterine cancer. Thankfully I found this site shortly afterwards and it has been a lifeline for me in many ways!

I remember feeling everything would be okay even when the doc called to tell me it was cancer. I was fortunate my feelings turned out to be right. I was diagnosed with stage 1 - grade 1 and only require 3 month check ups since my surgery.

I feel blessed!

I am going thru some depression now...almost a year later, but overall I have nothing to complain about.

I pray both of you have a sense of peace and tranquilty as you prepare for your surgeries and that your outcomes are as positive as possible.

Best of luck!

Kathy

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Thank you for the kind words of support. 

I'm glad I found this place after my diagnosis.

This space, all of you ladies have given me a kind of peace that has made this journey a tolerable one.

Thank you 

Crystal

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

Thank you to everyone for all the amazing support.  It means a lot to know that there are others going through what I am and are doing well.

 

Crystal- I will keep you in my thoughts and prayers as you go in for your surgery.  I know that 4-6 weeks seems like a long time for robotic surgery.  However, it IS a major surgery even if its not as physically as the original forms of this type of surgery... so it kind of makes sense too.  From what I have heard - we will feel better long before our body is truly healed - so please take it nice and slow.

My surgery has been scheduled for November 7th.  Let the countdown begin heheh.

I have to admit that I am pretty stressed at the moment.  In addition to all the hoopla around getting my surgery covered - my family is in the process of moving AND we are fighting with my step grandmother.  She isn't a very nice woman and is greedy beyond belief.  She has ordered the Adult Foster Home that my step grandfather is in to stop giving him his medications (he is in hospice).  That is messed up to begin with but even more so because she is claiming she has the right to order this because of falsified documents claiming she is the person that has the right to make medical decisions.  For the past three years that he has been in the AFC home, my step dad has been his medical power of attorney and been making the medical decisions.  Now she is claiming she found these documents that give her that power. *rolls eyes*  She just doesn't want to keep paying for his care - or rather she wants the money that is going to his care via social security and pension to start going into her bank accounts.  So not only are we fighting for MY life - we are fighting for HIS as well. 

So please keep all of us in your prayers.

Dana

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Dana,

 

First let me say that I'm very sorry you are having to deal with these family issues during this time

Please remember that you need to stay postitive and as stress free as possible... if you don't take care of yourself... you will not be able to take care of others.

I will keep you in my thoughts and prayers. Let us know how you are doing :)

I've been a bit overwhelmed these last few days. My brain is so very scattered. I'm having to run and jot things down.

I've checked into the hospital and will head over tomorrow at 11:30a, surgery at 1pm. Looking at 3 hr surgery.

 

The worst thing at this moment... I WANT FOOD. lol! 

Hugs and best wishes,

Crystal

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Good luck with your surgery and recovery.   Remeber to rest as needed, but walk short intervals after your surgery.   Hope you get good news after the surgery.  In peace and caring.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Glad you have your surgery scheduled.  Hope all goes well for you.  Sorry to hear you are having so many other problems.  Take care of yourself.   

Rosestar570's picture
Rosestar570
Posts: 10
Joined: Oct 2013

My doctors figured I was too young for endometrial cancer too. I had a biopsy and D&C in July that came back with suspiscious cells. I had a total hysterectomy on August 27 and was diagnosed with IIIc endometrial cancer...because of one little lymph node. I just started chemo last week. It has been a wild ride. If your cancer is in stage 1, they might be able to treat it with just progesterone. I would get a few different opinions. I wasn't as tied to becoming a mother, so the hysterectomy was okay. I had the DaVinci robot. Anyway, I have been documenting it on my blog so feel free to check it out. http://rebelcupcake.wordpress.com

As a side note, my sister has bipolar disorder. I know that getting a diagnosis of cancer can be even worse to handle in that mental state. I have noted that the calmer and more positive I am, the better everything is. Keep on top of your meds and reaching out for support. It makes everything more manageable.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Welcome to the site.  Sorry you are going on the journey with all of us.  Glad you made it through your first chemo.  Hope you continue to do well.  Look forward to hearing more from you.  In peace and caring.

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

I am officially one week away from my surgery date.  Feeling okay so far - nerves aren't too horrible.  Mind racing a bit as I think of what I need to get done before surgery date arrives (mainly because of the fact we are also in the midst of moving and I won't be much help after surgery).  I did get a bit of good news the other day though!  I had applied for Medicaid when I was first diagnosed.  My caseworker was sure I would get it at first and then had heard that things didn't look good.  In case I hadn't mentioned before - I also have bipolar and anxiety disorders.  Well because of the mental health stuff I get paranoid kind of easily - and worried I would slip through the cracks - so I contacted my state representative.  They looked into it and they said it didn't look good for my Medicaid application either - so they wrote a letter to the hospital requesting they do the surgery for free for me.  And the hospital agreed a few weeks ago - hence the surgery being scheduled.  Well a few days ago - I got word that I was actually approved for Medicaid.  So now the hospital can use that money for someone else because my surgery is a go via Medicaid now.  AND bonus woohoo's for the fact that if I need chemo/radiation after surgery I won't have to fight to get that treatment covered like I would have had to with the insurance I had before this approval came through. 

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