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Newly diagnosed

ayounger
Posts: 4
Joined: Aug 2006

August 2 I called the doctor's office thinking my heavy bleeding, long period, then spotting was "age" related. I'll be 43 soon. An appointment was made for the next day. Biopsy was done an the following Tuesday I was told I had uterine cancer. On Satuday I had a D & C but the results were not back as of yesterday. My gyn wanted to consult with a gyn oncologist in a town 50 miles away. The doctor was on vacation but they consulted yesterday and decided to do a CA-125 blood test. I'll get the results today and that will determine if surgery is done in my home town or in Indy. He said if it came back as 20 or less surgery will be here anything higher they will biopsy lymph nodes so surgery will be in Indy. I've had time to research the doctor in hospital in Indy and I know I'll be in good hands either way. I'm glad to find this site and have been reading the web pages and forum.

groundeffect
Posts: 651
Joined: Mar 2003

Hello, and welcome to the "club"! I hope you'll find as much comfort with people living with cancer as I have. It is a frightening disease to have discovered, but if you're like me, you may be really happy to have found out the reason for your problems. I, too, had very heavy bleeding. I knew I had uterine fibroids from an ultrasound that was done, but by the time I was diagnosed with uterine cancer, my red blood cell count was seriously low, and I had some other real problems. If you look at my personal web pages, you'll see that story. I'm glad you've chosen this site to "talk" to.

Kudos to your gyn to bring in a gyn oncologist right away! Mine did, also, but I had to go 100 miles for my consult and surgery. I'm glad to see they've taken blood for a CA-125, also, but I'd have to say you might be better off going to a larger city for the surgery. Not to knock local surgeons, but, when I was to a gyn oncologist so far away, my gyn said "they do so many more of these surgeries than the local surgeons do", you have more of an expert doing the job. Instead of someone who may do, say, 10 hysterectomies a month, you may get someone who does 200. I'm just guessing at these kinds of numbers, but I really would only want a gyn oncologist to do anything after being diagnosed with a gynecologic cancer. You want to have the best possible outcome!

Another thing you may want to look into (that I didn't because no one suggested it) is where you might want to have further treatment, if it's decided that you should have radiation or chemo. I didn't have a clue, and was caught off guard when the oncologist's office asked where I wanted to have that treatment-in their facility (100 miles away), or in my hometown? I chose my hometown, but wasn't really sure what was available. I knew we had a cancer center here, so I gave them that facility, which turned out to be the best choice for me. I was able to drive myself in and home for treatments.

Please come back and let us know what your CA-125 results were.

This forum has given me a lot of support since I joined it. I was very unsure of trying to reach out to other survivors, but now I'm quite happy to say I have friends here and in-the-flesh because of this network. People in the chat room encouraged me to go a local support group meeting.

ayounger
Posts: 4
Joined: Aug 2006

Thanks for your message! Just being able to talk to someone that has been where I'm at now is comforting. My CA-125 came back under 20 so surgery will be here in my hometown. We have a great facility and I have confidence in my gyn. Our hospital does have a cancer care institute (I didn't know this before). My gyn is going to have an oncology assitant in the surgery. I didn't think to ask what my count was, I was just thrilled it was under 20. That is on my list of questions to ask tomorrow though. As well as the stage which they were suppose to be able to determine from the D&C. Tomorrow morning I am to call the nurse (she was out on vacation last week - first Indy doctor now my nurse) so she can get the ball rolling. After I got the results back my first thought was great, now things will move forward, but when I found out I had to wait until Monday I lost it after getting off the phone with the doctor. It seems like it's always one more day and the unknown was getting me down. I feel better now. Although I still have some times where I just break down. Some times it still seems like a dream, sometimes it seems all too real. It's scary to say the least. Having had my ovary and a large grapefruit size tumor (non-cancerous) removed in 1996 I somewhat know what recovery will be like. Between times spending fun time with family I did things like put the towels, blankets, movies, within easy reach. I haven't slept well think about all the what if's. I keep thinking back and wondering if I ignored symptoms for longer than I think I did. I know I can't change the way things are now and that I just have to go on from here and work on conqueroring this battle. If you can think of anything else I should be asking my doctor or any advise you can give would be much appreciated. April

groundeffect
Posts: 651
Joined: Mar 2003

I'm glad to hear that your CA-125 came back so low. It's obvious that they were making sure that was low, and they wouldn't add ovarian cancer to their list of what to watch for.

You should tell your doctor that you're having anxiety. The least they should do is give you something before you go for surgery.

One thing I bought before my hysterectomy was one of those "body" pillows. I found it useful to support whichever leg was on the side I wasn't sleeping on.

Where was the large tumor you had removed in '96? I had a 3 1/2 lb. uterine fibroid (along with a few smaller ones) removed in '96, and knew what to expect, too. It didn't help being 10 years older, but I never have regretted not having a hysterectomy at that time.

I hope you're not kept waiting for too long. It's hard enough to stay calm after a cancer diagnosis, and it was easier for me to have a date beyond surgery to shoot for!

One last thing-I used the yoga breathing technique I learned in a class frequently through all of my trials. If you don't know how to do it, I'm sure you could get a tape or book that would describe it so you could use it. It's sort of fun to have something almost secret to help calm you!

tlva
Posts: 56
Joined: Nov 2005

Hi April,

Just a little help for you. They can tell the GRADE of the cell from the D&C but the STAGE will be determined after surgery when they can see everything and do the complete pathology on what they remove. The grades of endometrial cancer cells are 1 through 4...lowest abnormality to highest.

Staging is 1 through 4 also depending on the extent of the disease. Take comfort in knowing that most endometrial cancer is diagnosed very early and has an excellent prognosis. Most often surgery is all that is needed.

My doctors believed that the surgery alone was enough but recommended a second opinion from a radiation oncologist since there was a little on my cervix. He left it up to me about further treatment which I opted for and have not had any problems after 6 weeks of radiation. External and internal.

I had my first pap test 3 weeks ago, since finishing treatment one year ago, and it was normal!!!!!!!!!

I found it very helpful to research before talking to my doctors and I would quiz them to see if they were in line with the national standards for treatment. It was very comforting when they got all the answers right! Please research for your own peace of mind and demand their time with you.

MD Anderson is a great cancer center in Houston and their web site is great to navigate and full of information on all the things you're wondering about.

Tell that doctor to give you a sleeping pill till you have surgery! I took them for the week between getting the "word" and having surgery and haven't touched them since.

I,like you, was also 46 when I was diagnosed on May 6, 2005. I wasn't having any problems...it just came back on my annual exam's pap smear. Then after we couldn't get a biopsy because my cervix wouldn't dilate, I had an ultrasound...normal, then the D&C which showed cancer. Praise God that I went for annual exams. Make sure all the women you know get the word so we can keep our little club small!!!

Love and prayers to you!!!
Tammy

tlva
Posts: 56
Joined: Nov 2005

Well, I'm sorry we have to meet here, but this is a great way for us girls to put our heads together and our two cents worth in!
My doctors, my radiation oncologist, my gyn/oncologist and the National Cancer Comprehensive Network, all agree that the CA-125 is really not a relevant test for endometrial(uterine) cancer. It doesn't show in the blood very well and can be a misleading test. Unless you have something different like sarcomas of the uterus, then I'm not sure if it is relevant.
I would definitely demand to have a gyn/onc; you'll get used to the lingo soon; at my surgery, if not performing the surgery. I had both my ob/gyn and a gyn/onc.
The gyn/onc is the director of medicine at one of the local hospitals, so my follow up was with another gy/onc who started here about a month after my surgery.
My lymph nodes were dissected during surgery regardless of what they expected. Even though they could find no evidence of cancer during the inital exam of the uterus during surgery, the lymph nodes were sampled and were clean. My cancer was microscopic.
Ask all the questions you can think of and research high profile sites, like MD Anderson, the WCN (Women's Cancer Network), Sloan Kettering and especially here.
I'll be praying for you and hope to hear good news soon! Take care of yourself!

HeartJourney1's picture
HeartJourney1
Posts: 16
Joined: Jul 2006

Hi April! My name is Joann and I'm approaching the 6 week anniversary of my surgery for endometrial adenocarcinoma (cancer in the endometrium, lining of the uterus). By no means do I have a lot of answers but I certainly did have a lot of questions! So I'm hoping you take a list of questions with you to your doctor and don't forget to write down the answers! We all tend to be so freaked out, we can't remember what exactly was said. I took one of my niece's with me on my 1st appt to my onc/gyn and she wrote some things down as well as me. I noticed afterward that she wrote down some notes on things I didn't and couldn't remember the answers to!

I hope I'm not stepping on any toes here, or going beyond the boundaries of allowable posts. I'm not advising you - only your medical staff and family can do that! But these are a few things that definitely helped me get thru that initial "before surgery" period.

1. Take an advocate person with you to appts. If the doc is worth his/her salt, they will totally appreciate that as well as any and all questions you have. The extra pair of ears helps, as does someone to drive you to and from. Make a day out of it - do lunch/brunch, spend time talking. The person you take with you should be someone who is supportive, understanding, willing to listen, in other words, someone you love who loves you back! DON'T take someone who you have to support... we all have people in our lives that when they find out we have the big "C", they crash and we have to talk them down. Now is not the time to hold others up, you need someone who will let you lean on them.

2. Write down your questions, take them in a notebook and leave room for the answers. DO NOT be afraid to ask a question - there are NO stupid questions here! Every question you have is important! NOTE: If your medical staff is not willing to cooperate with you, give you time, answer your questions (over and over if need be), find a new dr/center. This is important! You need to be comfortable. You need to have confidence in them. If you don't, look around. Ask for referrals from "C" patients, your reg. gyn, your regular dr, etc. Look at it this way: you are buying their services, you need to be happy cuz this isn't a shirt, it's your life.

3. CAREFULLY research. Until you know your exact diagnosis, be leary of what you find out on the web. There is a tremendous amount of great info, but use good judgement. Originally, my gyn said immediately after she did the biopsy, that she was sure it was cancer. My 2 questions at that point were: how long will I be outta work and will I die? LOL I was sooooo freaked! So I, of course, researched like mad about uterine cancer. At that time, I had no idea that there are uterine sarcomas and endometrial and that they are different - both in staging and prognosis. So I went to my 1st onc/gyn appt armed with info and questions. That's when I found out that I had stage 1 endometrial adenocarcinoma and that after the pathology biopsy (done at/after surgery), then we'd know what grade, which would determine what, if any, further treatments were necessary.

4. Know this.... FEAR IS NORMAL! You are probably going to go thru an emotional whirlwind over the next few months. Be patient with yourself! Pamper yourself! Self care!!

And most importantly for ME, was to pray!

April, my thoughts and prayers are with you. There are people who do know the road you are traveling even tho sometimes, the most frightening part is feeling so alone. You're not!

Hugs and prayers wingin' their way to you and yours....

HeartJourney

ayounger
Posts: 4
Joined: Aug 2006

I want to thank everyone for the suggestions, information and kind words. Sorry I haven't posted in awhile. Things have been crazy here trying to get so many things done in advance. My surgery is today 2:30 EST and we are getting ready to head to the hospital. I've been so busy that I haven't had time to worry although it is always in the back of my mind. I'll be glad to finally get the surgery overwith and do what needs to be done from that point on. I'll check in when I get home. I'm so glad I found this group. It has helped me to know what kinds of questions to ask, and such. The doctor says hospital stay is 2-4 days so I'll check in once I get home and settled.

ayounger
Posts: 4
Joined: Aug 2006

I'm home!! Surgery went well and the doctor was pleased. They had to call in a third surgeon because of a hernia they found that also needed repaired. I had difficulty in recovery with my heart rate dropping way too low (below 20) but it was steady in the low 40's (still low I guess) when they moved me to a room. The pathology report came back and cancer was contained in the uterus. Hearing those words thrilled me! All lymph nodes were ok. Recovery has been easier than in 1996 when they removed an ovary and a large tumor. That surgery required a vertical incision. They did a horizontal incision this time and I'm much less sore. My iron was low so my doctor has me taking iron. I go back on Tuesday to have the staples removed. I'll ask him then what I need to do in the future as far as blood work, exams, test, etc, and how often. I just wanted to update everyone. Thank you for your support during such a shocking and emotional time. When I found out I had uterine cancer I felt my whole world turn upside down and didn't know what to do or where to turn next. I could talk with friends and family and they were very supportive but responses from those that have lived through this really meant a lot to me.

groundeffect
Posts: 651
Joined: Mar 2003

I'm so glad that you've gotten through your surgery, and have such a good prognosis! It is a shocking thing to be told you have cancer, but such a comforting thing to have it be not invasive. What a very good thing!

tlva
Posts: 56
Joined: Nov 2005

Hi April,

Well Praise God and Congratulations to you girl!!! Do remember to ask what stage and grade so that you will know what to research. Even when confined to the uterus, there are different stages like stage 1 A,B, or C. In case you ever had to change doctors, or fill out medical questionaires, it's best to know all that you can. I have a copy of my report...gross as it was...I could kind of picture what was going on and was so surprised that mine was so small.
Are you going to have any further treatment or second opinions from radiation oncology? I've been told that blood work is unnecessary because it won't show anything and will only stress you. The same for scans. I have had a pap and it was fine a year after finishing treatment.
Do research and ask ask ask ask. We're there with you and for you!

Love,
Tammy

willsrose
Posts: 6
Joined: Sep 2006

HI
I has the same problem with the bleeding. I was told by my doctor that it was just endometrial tissue shedding excess blood. I had just changed doctors by the time the bleeding had gotten heavier and I was having horrible cramps. She knew right away what was wrong. At the time I was only 39 years old.
I have talked to several people that have had the same type of cancer and they seem to be doing well. I was talking to one lady who had stage 4 and she went through surgery, chemo and radiation. It was I believe 7 years ago and she is doing fine.
I am glad to hear that you are going to be alright. I also agree about having a doctor from a larger city to do the surgery. I had a very good surgeon who did mine. I was also at a teaching hospital and basically had 3 doctors looking after me. As they say, 2 heads are better than one.

worrywort
Posts: 2
Joined: Oct 2006

It really is so good to hear people have survived this disease. I'm really glad you are all doing well. Other people just don't understand do they?

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