Endometrial cancer...what to expect?

NicInNC · New User Joined: 26 Dec 2006 Posts: 3 Location: NC

My mom just got diagnosed today with Endometrial cancer. The oncologist will be calling tomorrow to let her know when she'll be seeing him. They are going to do a total hysterectomy and we were told that they may take some lymph nodes and they will determine what stage it is. He said then they'll know whether or not she'll have to go through chemo or radiation.

What can we expect? Is radiation or chemo common even if it's in the early stages? How will she feel after the hysterectomy? How will she feel if she goes through radiation? How often is radiation? How long until she may be able to return to normal activities?

We have so many questions. My mom is scared to death and just wants to pretend it's not real. I know she's going to go through a ton of emotions. I told her that she WILL beat this. She WILL be able to proudly display that shirt that says "I'm a cancer survivor". My mom is my best friend and the backbone of our family. She cares for my grandparents and always puts herself last. I told her that this is one time that she will put herself FIRST.

I just need advice and what to be prepared for after her surgery and if she has to go through other treatments. I am already prepared to quit my part time job if I have to. I want to make this as easy as possible for my mom.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 89

Hi NicInNC:

Welcome to the forum. I have to commend you for your dedication to your mom, and I can understand your concerns. I think as far as treatment; it's course will likely be mapped out once they determined the staging. I was diagnosed with Stage III-C endometrial adenocarcinoma. I went through a total hysterectomy, which from what I read it takes about 6 to 8 weeks to recover. It was quite painful for the first week, but gradually that gets better.

She will not likely be able to do any significant housework for a while, and should not lift up anything heavy. She should have meals prepared or frozen before hand, particularly for the 1st and 2nd week. Because I had a succession of surgeries for spinal fluid leaks shortly after my hysterectomy, I cannot go by on experience for a typical recovery time. I know my first month after the hysterectomy, I had quite a lot of pain (I could handle it better than the pain I had before surgery), and just stretching was hard.

I had 30 rounds of radiaiton to my pelvis and upper abdomen. Two months after that I had a radiation implant put in the vagina, which required hospitalization. It took me some time to get an oncologist as I was uninsured, and by the time I got one, he adviced he would had done chemotherapy as opposed to radiation, however, he said the difference was only marginal.

She is blessed to have you. Believing and seeing herself come out of this is key! For me, my biggest concern was how hard it was for my sister to handle the diagnosis, and I found myself comforting my family instead she comforting me! Be strong around her, and build her up as you are doing! You and her are certainly in my prayers. Keep us posted on how things progess along.

God bless you,

Rhonda

NicInNC · New User Joined: 26 Dec 2006 Posts: 3 Location: NC

Hi Rhonda,

Thanks for the reply.

First of all, I must say that the Oncologist is SUPER nice. My mom, dad and I loved her the minute we met her. She spent 2 HOURS with us. She didn't make us feel rushed and she let us ask questions galore.

The way I understood it was that there are two types of my moms type of cancer. One is adenocarcinoma. The other is Papillary Serous carcinoma. She said the first type is the one that is in over 75% of the cases. She said we'll know what kind it is about a week after the surgery when the pathology report comes back.

Her surgery is scheduled for January 19th. She has to get clearance from the Cardiologist. My mom had a double bypass 2 years ago and one of the bypasses has narrowed dramatically. The cardiologist said it would be more dangerous for my mom to undergo surgery to fix it, than for them to just leave it alone. The oncologist said that if they say it's too dangerous for her to undergo the hysterectomy surgery, then she will have to have chemo and radiation immediately. The chances of them not giving her the ok is slim. She goes to the cardiologist on the 4th.

I feel much better and I really believe that things will be ok. I'll be a nervous wreck on surgery day. Every single time I walk into the hospital, I have flashbacks of when the doctor came out and told me about my moms heart (we were shocked that she had such a bad heart problem because she was always active, thin, etc). The thought of her having surgery again worries me sick, but I'm trying to believe that she'll have no problems.

They are using the Divinci procedure on my mom! Not one single human hand will be put on my mom during surgery. It's all going to be done robotically. I'm so excited because I've had a few patients that had surgery using the Divinci system and they raved on and on about it ( I'm a phlebotomist). Instead of my mom spending 3-5 days in the hospital, she will be out THE NEXT DAY! Also, instead of her recovery taking 6-8 weeks, she will be doing normal activities in about 2 weeks. The doctor said the recovery on these patients is dramatically shortened.

http://www.forsythmedicalcenter.org/health_services/cancer_center/cancer_treatments/surgical_oncology/da_vinci

Rhonda, what were your "symptoms" before you discovered you had cancer and how long did they go on before you sought medical care? Also, how old were you when you were diagnosed?

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 89

Hi NicInNC,

I am so glad you both like your oncologist, and to have a caring person is a definite plus. My oncologist does not appear to be particularly caring, but he is a gymecological oncologist, one of two in the local area. That is a real feather in your cap, because a caring doctor can really make a difference!

I just had saw a report on the Divinci procedure about a week ago on ABC news--this is really breakthrough technology. As you mention, the recovery rates were significantly faster for women undergoing hysterectomys compared to traditional surgical methods. I myself spent 3 days in the hospital, but it was during my hysterectomy that the cancer was discovered. Initially I went in for what was multiple fibroids and cysts.

My symptoms were severe, terible pain, excessive bleeding for several years. I had no health insurance, so my condition went unchecked. By the time I saw a gynecologist, I was severely anemic. She put me on various birth control pills, then Provera for about 8 months. I had a pap smear, which came back normal, but I already had the cancer by then. It had not reached the cervix so my pap returned normal. I consistently and constantly went to my gynecologist with these symptoms, before I had my surgery I had to have two emergency blood transfusions. Blood would literally gush out, cups of it at times, and I wore incotinence breifs as normal pads could not contain it. I also had bloating to the point my stomach was hard. For two years, I bled nearly every single day, I suspected it was more than just fibroids as time progressed. I was 43 when I was diagnosed, but I have had heavy periods, and discharges for some years before this. I was told the discharges were normal, but no one ever checked them. Honestly, I think all discharges warrant checking, only after that can one conclude whether it is normal or not. I was diagnosed with stage III-c endometrial adenocarcinoma, moderately aggressive. It was also found in one lymph node in the upper abdomen, and the removed the lymph nodes around the uterus.

Please keep us posted on your mom's surgery and progress. I would like to know what her pathology report reveals to. I would think the cardiologist would ok her surgery, and I am not sure if its through the surgery by which the staging is concluded. I am medically illiterate for the most part, but it seems to me both surgery and chemo or radiation would be the better way to go from what I read. My gynecologist urged both surgery and radiation, even though he was confident the surgery removed all the cancer. You both take care now, and fight the good fight. Let us know how it is going. She will get through this. My prognosis is good, even at my late stage, and I rest myself in God where my hope truly lies. Hope to talk you soon, and take care of yourself.

Rhonda

Nikki · New User Joined: 29 Jan 2007 Posts: 9

I don't know why, but I was banned from the forum. Can someone explain WHY?

Anyways, I came here to give an update regarding my mother. Her surgery was January 19th and hard on her. They weren't able to complete it robotically and they had to stop during the surgery and do a traditional hysterectomy. She also ended up having to have a blood transfusion a couple days later. I will say one thing....I now know why they call blood the "gift of life". It helped her tremendously! She got out of the hospital this past Tuesday and she has been doing very well.

We went to her follow up appt today and found out that she has to go through chemo AND radiation. My mom didn't take the news well at all. She is furious at the thought of losing all her hair (which the doctor said she will).

What can we expect now? I have heard that there have been many advances regarding chemo and radiation. How sick will she really be? How soon until she starts to lose her hair?

She'll be getting the treatments every 21 days.

Thanks in advance and if anyone knows why I was banned, can you please tell me? Confused

Nikki · New User Joined: 29 Jan 2007 Posts: 9

Btw....her type of cancer was papillary serous.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 89

Hi Nikki:

How are you? I am sorry to hear how things went with your mother's surgery. Did the surgeon explain why the robot could not complete the surgery? Also I wondered why the blood transfusion?--was it because of the surgery? Thank goodness she is doing better now!- I imagine it may take at least a month or so to recover from the hysterectomy.

I myself did not go through chemotherapy, although the oncologist I am seeing now preferred that route, as opposed to radiation. However, he told me the radiation was a smart thing for me to do anyway, given my stage and grade. He believes the difference between the two methods is only marginal. I must say the radiation made me sick, but---I had it to my abdomen and my pelvic area. And I was somewhat skeptical of this, but once I started taking ginger for the nausea, I was ok for the rest of my radiation treatments. I did not want to eat, everything tasted bad (a metallic taste) except for apple sauce. More than likely she will have to experiment to find which foods do not upset her stomach. And from what I hear of chemo, she may feel extremely tired and experience nausea.

Nikki--please let us know what her pathology report reveals, and what stage it is, assuming that will be disclosed to her. I can certainly understand her being upset at the prospect of losing her hair. Its so hard to go through this, and losing all your hair is traumatic in itself, let alone dealing with cancer.

Shocked

You certainly have not written anything which warrants banning you---there has to be some sort of mistake!! You might email the administrator to ask, but it must be some sort of technical glitch, or a mistake on someone's part. Please forgive all my mispellings, I did not get much sleep, at least its a handy excuse... Very Happy

You both are in my prayers and I hope to hear from you soon.

Take care now,

Rhonda

Nikki · New User Joined: 29 Jan 2007 Posts: 9

Hi Rhonda!

The pathology report said stage 1B (they gave my mom a copy of it, but my mom doesn't understand any of it). I found out a bit more today. Supposedly this type of cancer cell can easily spread when it's cut into. They said think of it as a dam breaking open and water going where it shouldn't. That's what happens with the particular type of cancer cells they found.

They weren't able to complete the surgery with the robot because they ran into too much scar tissue from a bladder tack that my mom had last year.

The reason for the transfusion is because of her heart. She had a double bypass 2 years ago (her first surgery EVER) and the one bypass isn't working correctly. The doctors said that because of the area it's located at (left main artery), it's more dangerous to try and fix it. Her heart have to work a little harder. Because she became anemic after the surgery, her heart started struggling and there was too much pressure being put on it. Her entire body was swollen at that time (which happens when there are heart issues going on). The transfusion helped TREMENDOUSLY.

She's actually doing VERY well recovering from the hysterectomy. She is even back to driving and went shopping yesterday. Because of how well she's been doing, this is a real downer that she's going to have more rough days ahead.

The type of chemo she will be getting is Taxol and Carbo something. I can't remember the name.

She's going Thursday to get educated on the portacath and then Friday, she goes to the cancer center and they will educate her about everything that will happen. They are hoping to put the portacath in Friday also.

rmaureen · Experienced user Joined: 06 Oct 2005 Posts: 89

Hi Nikki

It sounds like they caught this cancer in an early stage, thank goodness! Your mom sounds like one tough lady for sure, and that type of resiliency will take her through this with victory!! I had trouble driving three weeks later after my hysterectomy!

I am not acquainted with the papillary serous cells, but maybe someone else can shed some light. Still given the stage she was diagnosed with, she should expect complete success! Keep us posted! Very Happy

Nikki · New User Joined: 29 Jan 2007 Posts: 9

It's been a long time since I've given an update.

Mom will finish her chemo on May 24th! The past few months have been like a roller coaster ride. There have been good days and bad days. The good days are pretty good, but the bad days are HORRIBLE. Mom only vomited a couple times from the chemo. She really hasn't had that hard of a time with the nausea, thankfully. She started the radiation last week and only has to have 4 weeks worth of it. She is REALLY looking forward to having hair again. There is currently no sign of cancer left in her body.

I shaved all my hair off on February 26th, in honor of her for an organization called St. Baldrick's. Here's a link to my picture if anyone is interested:

http://www.stbaldricks.org/participants/shavee_info.html?ShaveeID=5482

I am very proud to say that I exceeded my fundraising goal! It was funny because I shaved my head before my mom lost her hair, so I was bald before her. Laughing

We made a big party out of the event and let my mom make the first cut.

I want to close with this: Despite how awful the diagnosis of cancer was for my mom and our family, I have seen so many good things come out of this. It has really made us all appreciate life a bit more. We are a closer family and have been blown away by the love and generosity of friends and even strangers. I truly believe that God has a purpose for everything that happens in our lives and the outcome is what we make of it. We could have sat around and cried every single day since mom's diagnosis, but instead, we focused on the positive and lived each day believing that the next would be better.

We know that there is always the chance that the cancer could come back....and if it does....we'll fight it again!

Graphorrhea · New User Joined: 11 May 2007 Posts: 1 Location: USA

[quote="Nikki"]Hi Rhonda!

The pathology report said stage 1B (they gave my mom a copy of it, but my mom doesn't understand any of it).[/quote]

Hi Nikki and anyone else,

The following website has the most descriptive and comprehensive staging information for Gynecological cancer I've found on the net.

http://www.merck.com/mmhe/sec22/ch252/ch252a.html#sec22-ch252-ch252a-595

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