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Newly Diagnosed and Lost

dothehustle26
Posts: 1
Joined: Apr 2009

So I am 28 years old. I have never had kids and they told me Wednesday that I have uterine cancer and need to have a hysterectomy. I'm so angry right now but at the same time relieved. I've been looking for chatrooms or someone to talk to and I wound up here. I feel like God is punishing me but at the same time I am relieved that they finally know what is wrong with me and am looking forward to life without constant excrutiating pain. I need someone....anyone to talk to that is not going to freak out like my family.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I'm so sorry about your diagnosis. It is really scary to hear the words cancer - and hysterectomy. No one knows what it is like except us. I think it is normal to have mixed emotions - scared, angry, relieved, sad. I did.

I was diagnosed with uterine papillary serous carcinoma (UPSC) last Sept - I also had excruciating pain that sent me to the hospital where they found the cancer and did a hysterectomy as soon as they could. But I am 61 - long past childbearing years. It is different for you.

You might want to get a second opinion to ease your mind about the diagnosis and treatment. I would encourage your family to go with you to the doctor and learn all they can so they can support you during this difficult time. It's OK to ask questions and get copies of your reports.

I'm glad you found this site. There are so many of us - and some young like you. Remember there is hope for all of us. We can live a wonderful happy life as cancer patients and survivors. We all will have bad days and we will have to go through scary treatments to get better. You will get there too. I will share what others told me - take heart and stay strong!!!!

Keep talking to us on this site. We care about you.

Mary Ann

deanna14
Posts: 734
Joined: Oct 2008

Hi, I am 39 years old with no biological children. I was diagnosed in September with uterine papillary serous carcinoma and had a total hysterectomy. I'm not going to lie and tell you that it has been easy emotionally or physically. I know I am bit older than you, but the hysterectomy thing still stings when you don't have biological children. Even though I had decided not to have children.... all of the sudden, it is not an option any more. I don't have the choice, it's out of my control. Trust me anger is normal and trust that God is NOT punishing you! The Lord doesn't work that way! There are lots of options now days for being a parent if you decide you want to do that. Let me also mention, that I got married since my diagnosis, right in the middle of my radiation treatments. You are going to go through a lot of emotions through this ordeal. It's okay to ask for help. I am taking Effexor which is used to treat the symptoms of early menopause. I can't take hormone replacement due to the type of cancer I had. You will have to discuss your options with your physician, but believe me, the lack of natural hormones will definately contribute to your moods and how you deal with your diagnosis. Please talk with your doctor so you are prepared for this.
I don't know what type of cancer you have or what stage you are, but this will contribute to the decisions you have before you. Be sure that you are informed and I would even recommend a second opinion. That is pretty standard, so don't worry about upsetting anyone. Also, you want a gynecologic/oncologist to do your hysterectomy. They specialize in the staging process and have much higher success rates with treatment. This is very important, be sure you are seeing a gynecologic/oncologist. If you are not, then you should definately find one.
Your family are going through the same emotions and stages of acceptance that you are. All of us here on this site have been there. So feel free to come here with questions, or just to vent. There is a great support system here.
Please keep me posted and please be sure your doctor is a gynecologic/oncologist.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I just popped in to echo Deanna's advice: have your surgery done by a gynecologic oncologist, no matter how much you like your gynecologist. You may have to travel to find one (hope not!) but statistics prove that survival rates go way up when cancer is properly staged and surgically 'de-bulked' by a gynecologic oncologist. Because you are so young, you may want to look into the Da Vinci robotic surgery as an option, because if you are a candidate (and if your insurance will pay for it!), it causes less scarring and affords faster healing. I am 56, but vain enough to wish I had the Da Vinci surgery when I look at my big abdominal scar. And yet my chemo oncologist said he has it in WRITING in his own personal medical records that he would want traditional open surgery if he ever got cancer, so who knows which is best? If your pathology after surgery shows that you have the less aggressive and more common type of uterine cancer caught in an early stage, and your surgery was skillfully done by a cancer specialist, you may not have to have as much (or any!) chemo or radiation. That makes your decision of who does the surgery particularly important.

There are also tests for protein receptors that I think can only be done at the time of surgery on fresh tissue. I was unaware of this and did not have any of that extra testing done when I had my hysterectomy but will ask for it if I have a recurrance that requires additional surgery (God forbid!). You may want to ask your gynecologic surgeon about that. If your cancer has these receptors, there are drugs you can take to make further treatment more effective, so it would be good to know as much about the cancer cells you have as possible. Be sure and ask for a complete copy of your surgery pathology. We will be able to help you understand a lot of what it says, or at least try to.

You can, and should, be an active member of your 'cancer treatment team'. We all try to be pro-active. And the rest of us currently in treatment will take any questions you have to our own oncologists to get even more information to help you make decisions.

Try not to spend too much time researching 5-year survival rates, etc., but if you feel compelled to do so, DISREGARD anything you read online older than 2 years. Cancer treatment is changing so rapidly, and things are getting better for us every day. DEEP BREATH! BIG HUG!!

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Sorry you will be going on this journey with all of us. Daisy/MaryAnn, Deanna, and Linda all gave good advice and I echo their thoughts. At your age a hysterectomy would feel very traumatic. The feeling you are experiencing are very normal. Your family is experiencing the same anger, fear, and feeling lost that you feel. I am 60 years old, so the hysterectomy did not bother me, either,like Daisy/MaryAnn. As Deanna said God does not punish us. We don't know why we all have this diagnosis, but there is hope for us as Linda has said they are making great strides in the treatment of cancer.
I did have the DaVinci surgery on 1/5/09 and the recovery is much quicker. I was only in the hospital overnight. I have 5 small incisions. I was able to start my chemo much sooner (1/29/09) because of the type of surgery I had. I hope that when they do the surgery, your cancer is less aggressive than the UPSC that many of us have. Mine is Stage 3 c.
Good luck with all of your decisons you have to make. Feel free to ask any questions. HUGS to you and your family.

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

I am sorry to hear about your diagnosis trust me it is very scary and so much to take in. Please seek a second option and see a GYN/ Oncoligist. We are all here for you. I stumbled upon this site after my hyst and find it very helpful. I have stage 2b endrometral cancer and am currently in external radiaiton treatment. Hang in there and collect as much information as you can. I started a book and find it very helpful. Another good thing to do is collect all of the labs and doctors notes (you hve the right to your medical records) and hold on to them this will help in the future. My prayers are with you.
Lisa

JeannetteMC
Posts: 2
Joined: May 2009

Hi. I know exactly how you feel. I'm 35 and I'm a survivor myself. I've been in remission now since 9/08. Its only been a few months, but I'll take it. Even though my husband and I have 2 children it is devastating news to hear. I suggest you seek a second opinion. My oncologist even asked me how bad did I want that fourth child since I had miscarried my 3rd when we found out about the cancer. So, there are possibilities but I would assume it all depends on where it has spread to. We even considered freezing my eggs. Since my total hysterectomy, I'm on HRT. Yes, life is difficult with challenges along the way, but we as women get through it. We are strong and we will survive! I wish you the best of luck. My prayers are with you. Get the second opinion. I would...

deanna14
Posts: 734
Joined: Oct 2008

Dear Jeannette,
I was given the impression that since I had uterine cancer, that HRT was not an option. Due to the fact that uterine cancer is usually "fed" by estrogen. I was hoping you cound share your Dr. opinion of this theory. I am only 39 and would love to be able to try bioidenticals, but am to afraid to "test" that school of thought!

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

After my surgery my doc allowed - and prescribed HRT - I KNEW it was wrong. But I wanted to stop
the hot flashes, ect. It was a mistake. The HRT feed my cancer and I was left with a reaccurance.
My advice now is to stay away from HRT.

rmcosu
Posts: 8
Joined: Jun 2009

I'm 32, so in a very similar situation as you are however my oncologist put me on progesterone to try to "reverse" the cell growth and give me a chance to have a child. Was a hysterectomy the only option given to you? My oncologist is saying I have Grade 1A but did say true staging cannot be done until I have a hysterectomy.

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

I'm 42 and never had children but had to have hysterectomy. I don't feel it's a punishment but I'm relieved that I don't need to go through pain especially when I'm having "periods". During periods I always feel so weak and miserable so after hysterectomy I feel alive again!
The doctor told me that I don't need to take HRT cuz I have plenty of estrogen in my body and it's not good for cancer either.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

By all means get a second opinion. Also find out about freezing some eggs. Get as much information
as possible before making any decisions. Do not let them rush you. I can only imagine your heartbreak.

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

aloha young one...so sorry to hear of your loss; it is a loss; take time to grieve; this cancer experience is not a punishment from God; "stuff" just happens; as an RN I am aware there are more factors than lifestyle that cause disease; don't forget there are genetics and the environment in the mix; situations over which you really don't have control and therefore no responsibility; many of us will tell you it was God who helped us through this experience; my best advice is to find a good treatment team; get a second opinion if you need to; then commit yourself to the treatment; endure day after day, pray, rest, be still and coach your body to wellness; cancer has given me a deeper appreciation of everything...
my heart and prayers go out to you...you are not alone
Marie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Marie, I like what you say every time I read your posts and I ditto your comments!!

Hugs and prayers to all,

Mary Ann

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