18 with endometrial cancer - questions

Kisara · New User Joined: 27 Sep 2007 Posts: 9

Hi everyone. I had a Hysteroscopy/D and C/ Endometrial biopsy earlier in the month and my results came back as having stage 1 endometrial cancer.

I am 18, I'm generally healthy and not obese. I am scared. I do not know what I should do really. My OB/GYN told me of two options that are a possibility for my cancer.

1) A hysterectomy
2) Hormone Therapy. But he also says this has a high re-occurrence rate which I am scared of.

He says those are more..age appropriate? He says chemo/radiation is when people are too sick to try anything else.

Now, today I saw the OB/GYN oncologist. He's leaning more for the hormone therapy. He said that he's seen a literature(?) that 200 women successfully went into complete remission within 3 months. Then kept talking saying it might take up to 9 months to be sure to go into complete remission. He did not tell me what the yearly re-occurrence rate was for these women. He also said then after the hormone therapy to do a D and C every 3 months to make sure it hasn't come back. I do not want to go through this for almost another year and it comes back. Also he said something about putting a UTI? in so I can have high dosage of hormones all the time. My OB/GYN told me that if it came back after doing the hormone therapy it could be worse. I'm scared of that, so badly.

But then, I know if I did the hysterectomy I'd be in a VERY early menopause and have no choice to have children, but I'd be in complete remission. I don't want children right now, but I'm 18. I have not gone to college yet, I wanted a life before having a child. I'd have to be on hormone therapy for the rest of my life, and childless. I'd end up being alone doing it this way. I wanted children later...but I also don't want to have a even rougher cancer if the hormone therapy didn't work. I want to just be painfree and have no more severe bleeding.

Also, since I'm 18 and not in college. I'm on my mother's insurance and by the time I am 19 I wouldn't have insurance if I'm not in school which would be a problem. I don't turn 19 untill next June...but.

My questions to you are.

1) If you've done the hormone therapy, did it work for you? How are you doing now? Have you had children fine and dandy?

2) The hysterectomy. What exactly could I expect?

Also, I'm not comfortable with my oncologist. He kinda ditched me in the middle of the appointment today because he had other patients and had a medical conference to go to later in the day by plane.
I just feel like well, you knew I was coming in and that I'm 18. I'm going to have more questions then someone who's older because hey! This older person probably already had their life and children and have no problem going through with a hysterectomy. Do I need to go to my OB/GYN and get referral to see someone else? How do I do this??

Its just me and my mom, and my mom has her own health problems so I'm trying to do alot of this on my own so she can concentrate on her health problems too.

Thank you.

brainman

Oh God, why does this have to happen to someone so young?

Kisara, I am truly sorry about your diagnosis and since I am not a woman, I cannot even begin to understand what you are feeling... but I can imagine. You are just too young to be facing such a difficult decision.

Usually, surgery is the best form of treatment since it will take out all of the cancer before it has a chance to spread to other parts of the body... but there are exceptions. My brain cancer was in a location that made the risk too high for surgery. So I opted for chemotherapy and see if it worked. If it did not work, then I would have surgery. But there is a major difference between the cancer I had and the one you have. My cancer rarely spreads. Your cancer does.

A hysterectomy involved removal of your uterus. Sometimes the also remove your ovaries, however, I think now days they try to leave them if possible because of the hormones they produce.

Have you thought of harvesting some of your eggs before surgery or chemotherapy? I do not know much about that our what danger chemotherapy possess to the eggs. Hormonal therapy (a type of chemotherapy) might not affect them at all but that is a question that you should as your doctor.

I do not know of anyway to "spin" the idea of a hysterectomy so that it would sound good to a young woman Sad

but it might be your best choice in the long run. But what do I know?

My advice is to have a very serious conversation with you OB/GYN oncologist. Write down all of your questions and concerns. Maybe take a friend with you because your friend might be more objective the you and might hear things that you cannot hear. Do not let the doctor leave without answering all of your questions.

You are in my thoughts and my prayers. Please, keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Muttsmom

Hi Kisara,

I'm so sorry to hear about your dx. It's horrible to hear those words, you have cancer, at any age, but 18........... we need a cure for cancer NOW.

When you talk about hormone therapy, are you talking about getting hormones or taking meds to kill the hormones?

My next door neighbor was in her early 20's and had 1 son when she was dx. She tried having the tumor itself removed so she could have more children, but it kept coming back so she had a hysterectomy. It was her only choice.

Even though I was in my early 40's when I was dx with Stage III breast cancer, I knew there was no chance of me having kids even though my clock was about to run out, but I knew if my life was ever to the point that I could financially care for a child, that I could adopt one and had no doubt I could love him/her as if they were my own, because they would be Smile

I know there's so much to take in and you are on an emotional roller coaster ride. I will say if you don't feel comfortable with your oncologist, get referrals and see another one. You need to feel that your onco is looking after you and when he/she is with you, feel like you are the only patient they have.

I'm sure I wasn't much help if any, but please know you are in my prayers and that I know you'll make the right decision. This is your life and you need to do what you feel gives you the best chance of never having to deal with this beast again and I know you will. As scary as having cancer is, having it caught early is great news.

Best wishes
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Kisara · New User Joined: 27 Sep 2007 Posts: 9

brainman - Thank you. I will keep you all informed Smile

Muttsmom - The hormone therapy would be getting a high dosage of hormones to try and reverse the cancer since its still just in the lining.

I'm just uncomfortable with the doctors using the terms reverse instead of getting rid of... Sad

Stage III breast cancer is scary Sad

My mom had a preventive mastectomy back in December and even though she luckily had no cancer, the mastectomy was so hard.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1023

Kisara,

First, let me say how sorry I am that you have to be dealing with something like this at 18. This stinks and there's no better way to put it.

My sister-in-law recently was diagnosed with endometrial cancer. Her cancer was in a tidy encased tumor on the outside of her uterus. She had a hysterectomy, but she's in her early 60's. They felt, since it was contained, no more treatment was necessary. (Radiation would have been the first line of treatment for her otherwise.) Now I find out that she is due to have laparoscopic surgery to check her lymph nodes in the area in a few months.

I did have a hysterectomy when I was 30 years old, but already had my children by then. It was a vaginal process. From what I understand, if you choose this route, they will want to do it through the abdomen so they can check out all the lymph nodes, etc. I also had one ovary removed at that time because I lost my Mom to ovarian cancer. I ended up going into full menopause at 34, even with one ovary left. I had the last ovary removed during some exploratory colon surgery when I was about 37. That was full abdominal surgery and I snapped right back because I was still young and in good shape. Don't be afraid of the surgery if you go that route.

I'd get a second opinion from another oncologist if I were you. You want as much information as possible to make an informed decision about your future. This is so hard, knowing that one of your choices is to never have children.

The following site is the National Cancer Institute:
http://www.cancer.gov/cancertopics/types/endometrial

I'd suggest doing as much online research as possible so you can have questions ready for your next sit down with the Doctor. You might also consider going to a major cancer center, such as Mayo, Johns Hopkins, or Memorial Sloan Kettering. I'm sure that they will take more time to investigate the best way of treatment for one so young. This is your life and future, so push for the best. All insurance plans cover second opinions so I don't think you need a referral. (Unless you have managed care, then it would be your primary doctor referring.) Get copies of all your reports, tests, etc. and have them sent to one of the above cancer centers.

Best of luck to you in this choice and you have my prayers.

PBJ

jenugl

Hi Kisara, WOW! what a hard start to adult life you have. I don't know anything about the cancer you have but thought I'd let you know that I am thinking of you and sending my love and support as you go through this terrible disease which no one (let alone an 18 yr old) should be going through. As other members have posted I would definately get a second opinion - having a Dr that you feel comfortable with and one that can help you with your decisions will definately have a major impact on how things progress. I am lucky to have two children so I couldn't even imagine how any young woman must feel at the thought of not being able to have them. As hard as that may be you really need to take every opportunity to beat this thing - you only have one life and if that (as devasting as it would be) means living without your own biological children then you have to grab it and run with it. A friend of mine doesn't have cancer but she can't have children and although she was devasted, she has had and still is having a very fullfilling and rewarding life with her husband, adopted child, family and friends. The main thing is for you to be as informed as you can and have a lot of support from your Dr, Mom and friends and know that whichever road you take we will help and support you as much as we can. This forum is a great place to lean on people when you're worried, scared, need information or just want to have a chat. There are some very knowledgable, caring and supportive people here. You are also probably helping others out there that read these posts but don't actually join up. I wish you all the best with the decisions you have to make and please remember that we are all here for you. Sending you my love and support accross the oceans. Jen

In

Hi Kisara,

I deeply apolaogise that I wasn't here to reply to you till now.

I'm so sorry for your news and so young. I too had to weigh up my options with a hysterectomy. My first thought was- I want to live and booked the operation. (I too had no children then) I was so lucky- Click on my link at the bottom of my post for a glimps of my story.

My advice to you-

* If your not happy- tell your Dr- and/OR get a 2nd opion. He is your DR- and should be responsible to spend time with you, and compashion , as well as answer all questions you might have. Here in Australia, you can just have a referal from a G.P (general Doctor).- maybe a women would be a little more understanding and compashionate to your worry about children etc. (I didn't want our local OB/GYN- so i looked up one in the phone book and asked around, In the end my Doctor suggested one).

*write every single question into a note book- even the silly ones. because often they are the most important ones.

*It's my understanding- especially your age, They will want to keep your ovaries. They are what will keep your Hormones in balance and hopefully unless damaged- will help to stop early menopause. So ask....

*Also ask about the Hormone treatments- as I have heard that it does do some damage to the ovaries. So maybe freezing eggs is a good idea. (and even though you don't have to make that decision now- good for future).

* Then ask your self whats best for you? For me- My life and less stress or worry of re-occurance was my answer.

Just remember there is so many children out there wanting a loving family.

Do you have a Close friend or someone who can go with you? Even an Aunty? Just to be another set of ears. So when you leave, you have someone to chat the discussion over with....( I would forget and my Mum would remind me or offer advice). Plus everyone needs some support, especially if you can't with your Mum.

I'm thinking of you so much- Please don't hesitate to PM me, even if just to voice your worry.

Take Care and let us know how you go- Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

brainman

Ladies, thank you so much for replying to Kisara. I did truly feel "out of water" trying to respond to her Laughing

. It is great to have a community that can lend support to others... even if we have not faced the exact same things.

Kisara, I hope all of this advice is not too overwhelming and that you are doing well. Keep us informed. We will try to provide you with good information and the support you so very much need at this time.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In

Hi, Kisara.

How are you? Alot of Information to take in. Are you feeling a little more in control with some information or advice?

Let me know how you are, feeling.

Thinking of you- Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

Kisara · New User Joined: 27 Sep 2007 Posts: 9

Hi everyone. Thanks for all the replies and information.. Very Happy

I think I will be going with the hormonal therapy as long as my cancer hasn't spread. Of course if it has there would be no doubt into surgery. I will have to get still a minor surgery though, it wouldn't be as drastic as a hysterectomy. I have to get a very painful cyst removed and also checked for any cancer signs... thats all I'd need is ovarian cancer. Sad

I don't think I have that though, the symptoms I've read are not anything I have other then the pain.

I will just hope that I am one of the lucky ones who goes into remission within 3 months.

In

sounds like you are positive and sure with your decision. Let us know how things go...Did your Dr suggest this more so than the hysterectomy? And are you staying with the same guy?

Take Care - Fingers crossed. Wink

Inica
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

Kisara · New User Joined: 27 Sep 2007 Posts: 9

Hi everyone. I'm just coming for an update.

I will be having surgery later on today because my MRI/CT scans I had recently weren't clear enough for my doctor.

I will be getting the cyst I have removed, and also basically he's going to make sure nothing spread. (Fun gas in my stomach!) Sad

I'm horrified. I have no idea why. When I had my biopsy I wasn't even this scared. Sad

brainman

Kisara, as always but especially today you are in my thoughts and prayers. I hope all goes well with your surgery.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

RaeDurham20 · New User Joined: 03 Nov 2007 Posts: 6

hi im new here and i was wondering what your kind of cancer is..is it like uterin cancer...im 20 and was told i might have uterin cancer but my last doctor blew it off cause im 20..even tho it runs in my family and my mom and her mom got it in their 20's ...im am very sorry for your bad news i hope everything turns out good for you.. Crying or Very sad

RaeDurham20 · New User Joined: 03 Nov 2007 Posts: 6

[quote="RaeDurham20"]hi im new here and i was wondering what your kind of cancer is..is it like uterin cancer...im 20 and was told i might have uterin cancer but my last doctor blew it off cause im 20..even tho it runs in my family and my mom and her mom got it in their 20's ...im am very sorry for your bad news i hope everything turns out good for you.. Crying or Very sad

[/quote]

wait never mind i looked online and they are the same thing..lol stupid me..like i said im new to this

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