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Young & just diagnosed with uterine cancer

IHateMyUterus's picture
IHateMyUterus
Posts: 1
Joined: Sep 2017

Hello everyone,

I just found out last week that I have uterine cancer after a d&c/hysteroscopy to treat severe pain and heavy bleeding. (My doctor was "99% sure" it was nothing serious. Fail!) I am 38 years old, no history of ANY cancer in my family, other than minor skin cancer.

I have a hysterectomy pre-op scheduled for Thursday. I haven't scheduled the surgery itself yet. When the doctor told me the news, it was over the phone (couldn't get to the office because my car conked out the night before) and I was so stunned, I didn't ask many questions. I'm kicking myself for that now because I have to wait a few more days, and I'm not good at waiting. He says he thinks we caught it early, and he doubts I will need chemo or radiation, but we won't know that for sure until after the surgery.

I know every case is different, but I was wondering...

-Will they only take my uterus, or will they also take my ovaries/fallopian tubes?

-I've read that most of the time, when uterine cancer is caught early, it has no symptoms and is often caught by accident. I have had severe pelvic pain/fullness. Should I be concerned that my cancer is actually more advanced?

I have a lot of questions, actually, but those are the 2 main ones. If there are any young uterine cancer survivors reading this, I'd love your input!

Thanks, guys. I'm looking forward to getting to know some of you! Cool

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Sorry to hear that you were diagnosed with this.   Right now the uncertainty is probably driving you crazy.   Take a deep breath and get your questions together.   They found my cancer by accident after a "routine" hysterectomy.   They ended up taking out my uterus, ovaries, fallopian tubes, appendix and omentum.   My doctor took out the appendix and omentum because he stated thats where a recurrence could occur.   As a result of them finding it after my hysterectomy, I had to have another surgery a month later for staging.   I was staged at Stage 3a, Grade 2 endometrial adenocarcinoma.  It was in my uterus, cervix and left ovary.    Just to let you know, that was back in 2005!   Yes 12 years ago this month.    I did have chemo and brachytherapy.  I was 45 years old at the time.

Further, call your doctor now.  Your pre-op will probably be with nurses, etc. and they may not be able to answer your questions fully.   If they tell you to wait until Thursday, at least you tried and that can ease your mind somewhat.

Although they had removed all my cancer, I still opted for the chemo.  At first they indicated I didn't need radiation, but a year later they gave me brachytherapy only.

Make sure you tell your doctor all of your symptoms, no matter how minor.

My best to you on your upcoming appointment.

Kathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2733
Joined: Mar 2013

Hello dear.  I am sorry you are having to find us under these circumstances but you have found the right place to ask questions and I know the other super women here will come along to chime in.  

I know any of the women here would FIRST recommend to make sure you are working with a gynecologic oncologist - not just your gyn.  The gynecologist oncologist has had additional training and will know what they are looking at and for when they get in there and they will explain to you what they are going to take during the surgery which is why you would sit down and have a meeting before any surgery.  They may have found cancer with your D&C, mine was, but the specific kind and stage can really only be found after the hysterectomy.  

There are different kinds of uterine cancer.  There is, what was decribed to me as the "typical, garden variety type", Grade 1 and usually taken care of with just surgery and then a more aggressive, Grade 3 types.  "Aggressive" tells you it is a little, bugger that really needs to have adjuct treatment - chemo and/or radiation.  

I would suggest when you go to meet with the doctor that you take someone with you who can sit there and be your scribe.  They can write notes while you sit there so you can give your full attention to what the doctor is saying.  There is a lot of information in these Uterine threads so I would recommend reading some of them for information and questions.  

I was 49 when I was diagnosed, a little older than you, and I do think how it would be harder on someone younger than me.  Again, PLEASE work with a gynecologic oncologist and don't be shy to ask any questions. 

MAbound
Posts: 1023
Joined: Jun 2016

I agree with No Time about getting a gyn-oncologist  involved before you have any surgery. OB-Gyns are the front line for doing biopsies that identify the presence of uterine cancer, but with all of the potential variables involved for the different types, grades, stages and treatment options  for this cancer, you really want to place yourself in the hands of someone who specializes in it. My gyn offered me a couple of options of who and where I could to for a specialist and the best question I asked was who she would go to if she were in my shoes. Your gyn's nurses may also be good ones to ask that kind of question of, too.

You are probably in the hardest part of this whole business right now with the shock of diagnosis and the uncertainty of what the specifics of your case are ultimately going to turn out to be. Understand that getting to that point is going to probably going to take more time than you realize but don't panic about that because it's what we all had to go through. Use the time to do some learning about uterine cancer and the treatment options you may be facing. You can answer a lot of your own questions that way and it also helps you to be prepared for some of the information that will be coming your way when you have appointments. Definitely take someone with you to appointments to be your second set of ears and memory because we aren't always in a good place emotionally to take it all in. If you have no one available to take with you maybe a voice recorder would be a useful subsitute.

I'm so sorry that this is happening to you at such a young age. I don't know what your plans for having a family are, but keep in mind as you need to make decisions that you want to do all you can for a cure at this point. Opting to delay some parts of surgery or treatments for in case of recurrence is not the best idea because recurrences, while treatable, are generally not curable. Microscopic cells left behind after surgery tend to migrate and mutate and thus become less likely to respond to what might have worked earlier. Frontline treatment: the initial scope of surgery done and any following chemo and/or radiation is really important and when you want to throw the kitchen sink at this cancer. Keep an open mind for what gets proposed as the plan of action to treat you and consider getting 2nd and even 3rd opinions for anything that concerns you.

I'm so glad you found us here. We'll be here for you whenever and for whatever you need from us as you start down this path. It's kind of a roller coaster ride with lots of ups and downs, but it is doable. 

janaes
Posts: 800
Joined: May 2016

Hi It sticks to get cancer so young and to be olone in it.  I was a little older than you at age 43.  I had a differnt cancer at age 20.  I felt so alone because only my grandpa who is now 92 has had cancer in my family and few others that are older too.  He had it when he was in his sixty or so.  Any ways no parents, siblings, cousins nor aunts or uncles have had cancer and here I had it twice. Im so sorry you have to deal with this I hope it ends up that they caught it early.  My doctor also told me when I had my biopsy that she was going to test me for cancer and said she didnt think it was cancer though.  I was very shocked to here it was.  Remember you are not alone in this.  This group is such a comfort.

Love Janae

mwells1004's picture
mwells1004
Posts: 13
Joined: Jul 2017

We have a lot in common, I am 36 years old and was diagnosed with Uterine carcinosarcoma earlier this year also with no family history, one of my doctors told me it was just a case of very bad luck. I just finished 6 rounds of carboplatin / taxol.  Your symptoms have not a lot to do with your stage, I had no symptoms at all until 2 days before my tumor was found and at the time of diagnosis I was stage 4 grade 3. I know this is so scary, especially at this age, because it feels so unfair and cruel but you will get through it. My advice is to write down everything you want to ask your doctor and to write down his answers or record your conversations. You will be getting A LOT of information thrown at you really fast and it s important to get a handle on it all. If I can help you at all or if you just want to talk message me.

Melissa

 

Sandrine04
Posts: 76
Joined: Nov 2016

Hi mélisse

is it possible to talk to you by messenger? I am French I have the same age as you, same cancer and same stage.

my messenger (Facebook) is sandrine la papaye.

kiss

MCruz's picture
MCruz
Posts: 3
Joined: Sep 2017

Your situation sounds very similar to mine. First of all I wish I had known about a gyno-onco. I would have preferred that situation. Going to the obgyn was ok. But I always felt rushed and the doc never truely answered my questions. Ok now to the cancer part. Mine was found like yours. I also had fibroid tumors. The cancer was in the uterine lining over 50% so I had to have radiation and tomorrow I begin brachyTherapy. Please write down all your questions and get answers. Don't be shy. Take charge now and prepare. All will be well!

Agania
Posts: 4
Joined: Jul 2017

Hello,

I am so sorry you are going through this.  I found okay via a phone call also and was in the same situation of being stunned and uncertain and asking no questions.  It felt like I waited years (really it was a week and a half) to see an oncologist.  It was the longest few days of my life. 

I would 100% recommend seeing a gynecologist oncologist if you haven’t already.  When my OBGYN called and told me the news she mentioned hysterectomy to me about 12 times in the 12 minute phone call.  I think she was trying to prepare me for that as the treatment plan.  I was 29 when I was diagnosed and have not had children.  When I went in and met with the oncologist (I got 2 opinions from 2 different doctors at different hospitals) my treatment was not a hysterectomy but hormone therapy.  I was “lucky” that it was caught early and able to do this type of treatment.  Hormone treatment is definitely not a typical treatment in any way. 

 

I was originally diagnosed because of prolonged and heavy bleeding as well as severe cramping.  My doctor was proactive and did a biopsy which is how the cancer was found.  When I went to my first appointment I had 2 pages of questions from what it means to have this type of cancer, to treatment options, lifestyle changes, what it means for work, all sorts of things.  My oncologist was great and took the time to answer each one and any follow up questions I had.  My best advice is to listen to the doctor but also what you feel comfortable with and don’t be afraid to ask questions or for a second (or third) opinion. 

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Sorry to hear you are going through this, but you have joined the best support group ever to help you through this.

I recently got diagnosed with state 1A serous carcinoma through hysteroscopy procedure.  My symptoms were a little spotting.  I am 61 years old.

I am in my 4th week post op and saw my surgeon/oncologist.  I will start 3 to 4 rounds of chemo starting with next week due to the type of cancer.  I had no growths, my cancer was microscopic and removed with my first procedure.

First I strongly suggest you meet in person with your doctor.  You do not mention if the surgeon is an oncologist.  That is extremely important!.  My hysterocropy was done by gyn/surgeon.  After getting the results back, I went to a surgeon/oncologist.  Being able to meet with the doctor and on a one to one basis will give you that assurance and trust. You can also ask more specific questions about the surgery and the type of cancer they diagnosed from your biopsy.

If I can help you with any of the questions with the recovery period after a hysterectomy, please let me know I will gladly answer.

There are many courageous, supportive ladies in this group and they have really helped me.  I hope I can help you in any way I can.

Sandra

 

 

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