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Got the diagnosis...please help Got the diagnosis...please help

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  #1  
Unread 03-16-2004, 02:45 PM
Got the diagnosis...please help

I posted a while ago...I was diagnosed in late January with severe hyperplasia with atypia following a D&C. Before have a vaginal hysterectomy, I sought the 2nd opinion of gyn/onc who wanted to have my path read by a noted specialist at Johns Hopkins because I was in a "gray" area.

The path report has come back from JH as "small foci of well-defined endometrial cancer." I am now scheduled for a total abdominal hyst with staging on Thursday, 3/25.

I am terrified. Has anyone else had this diagnosis and been totally ok following the surgery?
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  #2  
Unread 03-16-2004, 04:59 PM
Got the diagnosis...please help

Hi,
I was diagnosed with hyperplasia, no malig. for almost four years. If I had know then what I know now Iwould have insisted on a hyster. at the start. I think I was so relieved each time that I asked few questions. In June the biopsy came back nasty and I had a complete hyster the end of July. this was followed by radiation both external and internal.
I don't think that any of us will be able to say we are 100% OK, but the radiation is doable and with the exception of some bladder problems I feel pretty OK. And relieved that much of the stress is behind me. Are you planning on radiation? Please write with any questions. Someone here will have an answer.
We have all been scared, but you can do it.
Jean
  #3  
Unread 03-16-2004, 05:20 PM
Got the diagnosis...please help

Well, I didn't have the diagnosis of hyperplasia first. I had a hysteroscopy because of a mass seen on ultrasound. Few symptoms and the Dr. thought it was a polyp. I woke up to the Dr telling me I had cancer. 10 days later I had a TAH/BSO. Staging was a 1b, no further treatment needed.

It's been 5 months now, I'm 90% back to normal and feeling actually a lot better than last summer. Although the incision is still a bit tender, that's the extent of my complaints.

As I've been recovering I've noticed that I don't have the nagging backaches I had last year. So, I'm not only okay, but better than before.

I just had my second follow-up Pap and there's sign of disease. So, yes, I'm okay.

It sounds like your cancer is at a very early stage and the surgery could be curative. Good luck.

Linda
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  #4  
Unread 03-16-2004, 05:55 PM
Got the diagnosis...please help

Hi Smiley.

I was diagnosed with probable Endometrial cancer following my D&C, and was immediately scheduled for surgery, for a TAH BSO. The staging turned out to be 1B, which is considered early. And early endo cancer has a pretty good track record if it's caught in time.

That was four years ago, and I've been clear ever since. No radiation or chemo were required in my case. I just had my fourth "anniversary" follow-up CT scan, and everything is fine. I get a pelvic exam every 6 months, and am now back to just an annual vaginal pap smear--at first it was more often.

My surgery went flawlessly and my recuperation was great. Just be sure to follow directions and take it slowly after surgery. Do not rush back to "normal" life--you can end up with setbacks later on.

And as many other women on this Cancer Concerns board have noted, "cancer" was not the end of normal life for me--it actually made me look hard at my life and now I think my life is more normal, sane, and balanced than it was before cancer. I know only too well how scared you may be feeling now, but I hope that this helps you to know that, as someone once said, "Cancer is a word, not a sentence."

Please keep us informed on how you are doing, and we look forward to hearing about your "castle" experience.

You're kept in prayer and good wishes!

Blessings.
Marlene
  #5  
Unread 03-16-2004, 08:13 PM
Got the diagnosis...please help

Thank you all so much for your replies. It really helps to hear from others who have come through this successfully.

I don't know what will be the next step, i.e. radiation, etc. My doctor has not told me. Do any of you know why one of you had radiation following the hyst and the others of you did not. Also, I am assuming you all had your lymph nodes removed also? I noticed that some of you mentioned having pap smears. I believe I am having my cervix removed also, although my pap was and always has been normal.

I am, of course, frightened by the surgery. I hate needles and pain. But, actually, I think I can get through anything as long as it ends up ok. I know I am being childish and melodramatic....you've all been through so much...but I am just terrified and terribly sad at the thought of not being around to see my children graduate from college and marry, etc. I know I'm being ridiculous, but I can't seem to get past that these last 2 days. Before that I was really very positive and upbeat...telling everyone that I'm going to do everything I need to do to be ok and that I'm sure it will be all right. I don't know what has happened the last couple of days, but I have a lump in my throat all the time. I don't want to scare or worry my family so I'm trying to hide it, but I'm just a wreck right now.

Mydoctor really hasn't discussed the surgery, recovery, etc. much. I have a lot of confidence in him...he's a young hot-shot and very aggressive which is what I want if I'm facing something. But, as I said, I'm not sure what to expect.

Anyway, thank you all again. It has helped so much to hear from you.
  #6  
Unread 03-16-2004, 08:58 PM
Got the diagnosis...please help

Hi, Smiley!
"Small" and "well-defined" are words you want to hear.

The feelings you've been having over the past couple of days are perfectly normal ones. It's actually good to go through those feelings, although of course it's no fun at the time. It's part of dealing with what is happening. Don't be surprised if you go through a really angry stage, too. And a "why me." But don't think you're abnormal if you don't have those other feelings, either.

As for me, post-hyster, despite my complaining post, I'm really quite ok. (Endometrial cancer also). I'd like to be back to work and I'm tired of dealing with the 'glitches' I've encountered post-surgery -- but none of these problems I'm having now are life-threatening. Once they heal, I'll be totally okay! The cancer is gone, and I'll be alive for years and years. I'm impatient now, wanting to be back in action -- most of my complaints simply involve frustration. And that, I'm sure, is normal.

As to why some have radiation, some have chemo, some have both, and some have none, I don't know the answer. I suspect that it probably hinges on what stage the cancer was, and also suspect that it depends on the doctor.

I'm glad that you've come here. *pats empty seat on couch -- settle on in, and pour your heart out. This is a safe place where you don't have to hide anything.

With warm wishes,
=e
  #7  
Unread 03-16-2004, 09:48 PM
Got the diagnosis...please help

Dear cksmiley50,

I have written to you in response to one of your previous posts.

I just want to remind you that not everyone opts for surgery, even those that have had their children. In a situation like mine, I seem to find only about 8 years followup in patients that have taken similar treatment.

As I remember it, John Hopkins is a pioneer in treating women w/assumed early stage endometrial cancer with the Mirena IUD. I called them up myself when I had doubts that local doctors would help me. They did however draw age limits on who they would treat that way.

Good luck to you.

Pat
  #8  
Unread 03-17-2004, 04:20 AM
Got the diagnosis...please help

Dear ck,
I too was diagnosed with endometrial cancer back in October 2003. What a rollercoaster ride for me. Just thought I was having menopausal problems and nope, it was cancer. My gyn sent me to the local "cancer center" in Philadelphia and there I met my surgeon and learned that surgery was the answer. The surgery went extremely well, no problem with the lymph nodes since the cancer was in less than 1/2 of the lining and hadn't gone further. Oh yes, all was removed, uterus, ovaries, cervix, tubes (everything and the kitchen sink). My gyn/onc said that she wouldn't know that until she was in there. More times than not, further treatment doesn't seem to be necessary if caught early.
All of this doesn't seem to help in the beginning, I myself was prescribed some xanax to help me deal with this until I had my surgery and the sooner the better was ok for me. The thoughts that go through your head constantly are exhausting.
Please take care of yourself and don't be afraid to ask for help, you are not alone.
  #9  
Unread 03-17-2004, 06:20 AM
Got the diagnosis...please help

Smiley:

You asked why some get radiation and some don't. It's all involved in the staging of the cancer which occurs in the surgery and the pathology that is found. According to my Dr. if the tumor invaded the uterine wall less than 50% of the way through and was not found in lymph nodes or had moved down to the cervix, then it had not spread and the surgery is curative. If it had invaded over 50% of the way into the uterine wall, then it's time for follow-up treatment with radiation, chemo or both. So, catching it early is important.

As for the pap smears, we normally think of them relating to cervical abnormalities. However after treatment for endometrial cancer, pap smears are performed to monitor the health of the upper vagina. If endo cancer is to recur, that is the most likely place to find it. As my local gyn (not the onc) told me last week, it was his job to prove that I was cured <grin>. No onc would use the cure word, but I think my local gyn was trying to get to my cancerhead. In other words, he was trying to tell me to get on with my life and not to worry about a recurrance. That's easy to say, but with checkups every three months, one is constantly thinking about the next checkup.

As Marl said, many of us feel our lives are actually better after this scare. My motto is : Don't sweat the small stuff. Everything after this is small stuff!

If you have a small focus of endo cancer, it sounds like yours is a very early stage.

Linda
  #10  
Unread 03-17-2004, 08:27 AM
Got the diagnosis...please help

Again, thank you all so much. I can't tell you how much you're helping me right now.

If anyone has the time, could you tell me a little bit about how things go after the surgery. Is the pain terrible? I've been told I can have a pump but an acquaintance told me that it will make be sick to my stomach. I have never had morphine but have had codeine and vicodin with no ill effects. Also, I've read a lot about constipation problems. Does everyone have them? How long will I be "out of it"? I've been told that I'll be in the hospital for 3-5 days. When I get home will I be able to be up and around much? What about stairs? What about driving? My husband is taking a week off to be with me. Will this be enough? I have no mother, sisters, aunts, etc. to help out. My 20-year-old daughter is 400 miles away at college and I don't want to disrupt her life. I'm sorry for being such a bother, but I don't have anyone else to ask. Again, I know I'm being ridiculous, but while I want the truth, I also don't want to be anymore scared than I already am...so be gentle!

Thank you all again so much!
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