Newly diagnosed and need help!

Pixie · Experienced user Joined: 15 Sep 2009 Posts: 73

I've just been diagnosed with Endometrial Adenocarcinoma at least stage 1b.

I had a D&C 3 weeks ago for continuous heavy bleeding and 4 days later went away for 2 weeks (Las Vegas of all places Laughing

), when I got back I'd received letters telling me to contact my Gyn dept ASAP. I tried to make an appointment and the earliest they could give me was for next week.

I'm a registersd nurse (Cardiology) and work at the same hospital so decided to take matters into my own hands, I looked up my own records and then got the shock of my life. Luckily I was at work at the time so not alone. Anyway thanks to my really supportive colleagues (sp?) I met with the Professor of Gyn and am scheduled for a hysterectomy next monday. They won't know how bad it is until they open me up.

My problem is I don't know how to tell my parents, I'm British but have lived in Germany for the past 12 years. I spent most of yesterday sobbing everytime I spoke to anyone and today I feel much more in controll but I know as soon as I hear my mothers voice it'll start again!! I know my Parents will be really upset and I know my mom will want to get the next plane over and I don't want that. I don't mean to sound selfish but I can't cope with her as well. How can I tell her without hurting her feelings??

I hope someone can help me, I've spent the last couple of hours reading all the posts on here and it's helped me already knowing that I'm not alone.

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 335

Hi Pixie

Welcome to the forum. I wish to welcome people under more fortunate circumstances, but of course, its usually not that way. And you are definitely not alone. It is so difficult to learn you have cancer, then there is the process of fighting the disease, and how it affects your love ones. My sister freaked out so bad when she learn of my diagnosis, I had to tell her she was putting a real burden on me by acting like I was going to die, and crying all the time. The other members in my family handled it well--I am only close to my sister (a twin), so the others remained very calm about it.

I had to be a bit confrontational with my sister, and I told her I cannot handle how you are acting around me. I told her I intend to fight this with my faith and with medicine, but if you keep acting like I am going to die, you will strip my hope away. I tell you Pixie, a positive attitude is imperative when facing this disease, and at stage 1, you have an excellent chance of living a long full life! And I sense you are a fighter with a positive attitude.

Maybe you can tell your mom how much her support is appreciated, but because you will be very busy with treatments; maybe she should refrain from coming over now. You might have to be a little direct. But from what you have written, it sounds like she will attempt to come out to you anyway. Do you have support in your house for after you have the hysterectomy? If not, it may be a blessing to you for her to come over. My mom and I are not close, but she went with me to every single radiation treatment. For the first time in my life, I felt she loved me--even despite our very dysfunctional family. But after your surgery, you will need help. I always tell those facing a hysterectomy to prepare ahead, but you being a nurse, I am sure you know the drill. Make meals, soups, etc ahead of time and freeze them--so you do not have to wrestle in the kitchen. Wink

Pixie, keep us posted on how you are doing. Maybe some one will post another suggestion on how to approach your mother. You will be in my thoughts and prayers. Take care for now and please ignore any mispellings...not enough coffee in me yet. I know you will come through this just fine!

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

Pixie · Experienced user Joined: 15 Sep 2009 Posts: 73

Thank you so much for your reply, it started the tears flowing again! It all seems unreal at the moment and although everyone is being really supportive, I feel that nobody really understands.

To answer your queston I'm in a happy relationship and have been for the last 11 years. My partner is also a nurse so I'll have someone to look after me when I get out (and he will have to learn to cook Laughing

)

They are also talking of Internal Radiation treatment afterwards, I thought, no sweat just like an X-ray until I read up about it. OH HELP it's sounds awful.

Anyway thanks again for the reply it means so much to me.

rmaureen · Moderator Joined: 06 Oct 2005 Posts: 335

Oh Pixie, I am sorry for your tears. Sad

It is like your world turns upside down in a second, and it will never be the same. When I was diagnosed, it was like being in a dream, to me everything seemed in slow motion.

Concerning what you said about cooking: Very Happy

Yes, it's time for your partner to learn and cook. Once he gets "trained", you can have him cook gourmet meals for you all the time...Just kidding...I think. Wink

Why not go for it? Laughing

I had the internal radiation implant (brachytherapy) along with 30 plus rounds of external radiation. It can cause some negative effects. The implant hurted in the hospital, but if you don't move while it is in you, it is not intolerable. It typically requires a 1 to 2 day hospital stay. I think radiation to my abdomen did more damage then the implant, however--I can only speculate. The implant also causes shrinkage inside the vagina, but your radiation oncologist will discuss ways to minimize the effects. I cannot tell whether my external or internal radiation thickened the wall of my bladder. The implant is painful like I previously stated above, BUT if you keep still and behave like a frozen peice of meat, you will feel little pain. Easier said than done, but I only remember one time I moved which caused excruciating pain. Also, after they put that implant in, they limit visitors--effectively like being quarantined. But I know you will get through this, you sound like a strong woman. Still, it is like being thrown into a nightmare--yet it is real life.

Wink

Hang in there! It will take some time to even come to terms with the diagnosis, even for me four years later, it seems surreal at times. Even the statistics are greatly on your side, and set your mind to the fact you are going to come through this just fine and defeat this disease! I truly believe that! Post anytime with questions are thoughts you may be having. Take care,

Rhonda
_________________
Diagnosed Sept. 2005
Stage III-C Endometrial Adenocarcinoma
Grade 2
My Story:
http://fierytrial.wordpress.com/2009/12/09/my-diagnosis

SusanSudz · Posted: Wed Sep 16, 2009 12:33 am Post subject: Hi

I was diagnosed with Uterine Cancer Stage 4 in April 2008 and I'm still hanging around. Smile

I think you have a good heart and positive attitude and you will be here for a long time too. Not quite sure what makes me respond that way, but you seem like it to me. A forum is new to me and this is my first post, but luckily I have a great family and friends and I 'make' myself have a positive attitude, even when I don't want to. So far, it's working. Good luck to you.
Susan
_________________
Susan
Diagnosed April 2008
Stage 4 Uterine Cancer
Northwestern University, Chicago

Pixie · Experienced user Joined: 15 Sep 2009 Posts: 73

Susan - Thank you, I wish you all the best too.I know what you mean about the forum, I belong to a few other forums but never thought that I would belong to a Cancer forum. I hope that when I beat this evil (and I WILL beat it Evil or Very Mad

) I will be able to offer help to others.

If it's not too personal can you share your story, have you had surgery or radiation. If you don't want to that's ok.

Rhonda- Thanks again, I don't know anybody who has had or survived Cancer so this is all new to me. (apart from my patients of course but that's different)

SusanSudz · Posted: Wed Sep 16, 2009 11:36 am Post subject: Newly Diagnosed

Similarly, I was at work when I learned of my cancer diagnosis also and had some very nice co-workers who helped me that day. My company is a steel manufacturer and my position is a project manager--but very far from anything medical. And before this, I was always healthy as a horse. So had a lot to learn. I now discuss my cancer with those interested and find it easier to live with it that way.

I started massive bleeding one night at a restaurant with my son, his wife, and 3 kids at the end of February in 2008. Good thing I had black pants on! They took me to the emergency ward and from there I ended up with a hysterectomy (et al) on April 22, 2008 with Stage 4b uterine cancer. My doctor, Dr. John Lurain, spent 6 hours in surgery, but it had spread too far. I started chemo (carbo/taxol) about 2 weeks after surgery, but no remission, then to Taxol-tier, then to Doxil, then to Xeloda, and now to Carboplatin by itself. No radiation, but I think I'll just be on chemo of some type for the rest of my life--which isn't that bad. This chemo is pretty kind, really only the 'taxol' kicks your butt--and you hope it does the same to the cancer, but never sure.

My doctor looks at my ca-125 now, it's at 106 and goes up and down. My first chemo was part of a study and I had cat-scans every 6-8 weeks or so. It is more how my life feels to me now that is important my doctor says. And it is pretty good. I have 4 grandchildren and really want and INTEND to be here a long time!! I was off work for almost a year but now I am back. But they are very good to me here and I don't have the stress I use to have. I've been here 35 years, so will probably retire soon, but need to look at options.

I will be thinking about you next Monday--Best of everything to you!
_________________
Susan
Diagnosed April 2008
Stage 4 Uterine Cancer
Northwestern University, Chicago

Pixie · Experienced user Joined: 15 Sep 2009 Posts: 73

Susan - It sounds like you really went through hell and back, and I'm really happy that everything is now going well for you.

I'm trying to take one day at a time, I go in tomorrow for a whole bunch of pre op tests, and I'm starting to panic about how having an early menopause will effect me.

Take care Laughing

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