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Finally have a diagnosis Finally have a diagnosis

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  #1  
Unread 07-28-2002, 06:03 PM
Finally have a diagnosis

I've been waiting for a diagnosis to be made since April and now I have one - endometrial cancer. It has been an up and down 3 months! I had an endometrial biopsy in April and was told that three pathologists conferred that I had endometrial cancer (I had to be told via phone because we had just moved from NJ to PA). GYN in NJ recommended that I see a gyn-onc in PA so I got a recommendation and off I went.

Dr was awful in appointment (first thing she said to me was "so, you have ovarian cancer...") and then her pathologist reviewed my slides from GYN in NJ and could not make a definitive diagnosis because inadequate tissue was collected. Gyn-onc #1 recommended a D&C but I was so uncomfortable with her that I decided to switch doctors (and hospitals). She also had not offerred any solutions for my continued pain and bleeding.

Found a 2nd gyn-onc but had to wait 1 month for an appointment (which gave me time to get slides back from 1st hospital and get ultrasound films from GYN in NJ.) Saw new gyn-onc at end of June, he reviewed ultrasound, previous records, and read both pathology reports. He said he was not convinced it was CA thought perhaps it was hyperplasia. He also said that if it was cancer, as long as it was not invasive they might be able to treat me with hormones because of my age (34). He started me on norethindrone to stop my bleeding (and that also stopped the cramps) and sent my slides off to his pathologist. His pathologist thought it was "pre-cancer tending towards cancer" so gyn-onc #2 sent me for an MRI and recommended a D&C (which we had discussed during my appointment).

I had the D&C just over a week ago (and just before surgery they told me that the MRI had shown that whatever I had was non-invasive) and last Tuesday night my gyn-onc left a voice mail that I have cancer (and then left for a research meeting so I haven't had a chance to chat with him about what happens next). To his credit, he chose his words carefully and I think he realized that after he'd left his name he had to say why he was calling. He also called back at 9:45 PM but we were out with friends and didn't get home until nearly 11 PM that night.

The worst part of it (apart from the CA diagnosis, of course) is that I had convinced myself that the initial diagnosis was wrong (because the "expert pathologists" did not believe it was cancer) and I was completely unprepared for this diagnosis.

There really is no point to this post - just needed to get it out there.
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  #2  
Unread 07-28-2002, 06:37 PM
{{{Legume}}}

Hey sweetie,
Looks like you've been on a rollercoaster ride the last few months. I'm glad that you finally know what you are dealing with but I'm sorry it's cancer. Now you start on the journey to getting your health back. You said in your post that there really was no point in your post, you just needed to get it out there. Well, thats what this site is all about. This board is a place you can come to and say what you want about your cancer whether theres a point or not. Smetimes it just helps us to get the thoughts out of our head.

I don't have any experience with your type of cancer but there are many ladies here who do and they will be along shortly to offer you their support. So, hang in there sweetie, we're with ya all the way, and any time you need to vent, just come on in and have a seat and vent away. We all have at one time or another. Please know,you are in my thoughts and prayers and I'm sending big 's your way!
In Christ,
Susan
  #3  
Unread 07-28-2002, 06:38 PM
Finally have a diagnosis



Of course there's a point to your post! You're scared and nervous and unsure about what's going to happen. And I'm sure you are frustrated for the time that has passed while waiting to come up with a definitive diagnosis. I am sorry to hear that they've decided it's cancer, but at least now you know what you're dealing with. Hopefully, you will be able to speak with your gyn/onc soon and find out what your course of action is going to be. You'll feel much better just knowing how it's going to be treated. It's difficult to face the unknown.

Good luck! Please let us know what your treatment plan is going to be, and feel free to vent all of your concerns right here. We have very big shoulders and we're open 24/7!!

Here's another for good measure!
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  #4  
Unread 07-28-2002, 07:37 PM
Finally have a diagnosis

LEGUME,
I HAD ENDO C. TOO. THIS IS A VERY SLOW GROWING CANCER AND PERHAPS THAT'S WHY THEY COULD'NT FIND THE ANSWER
THAT FAST. IT'S ALL CONTAINED, SO PLEASE TRY NOT TO WORRY TO MUCH, MINE WAS STAGE 1 AND A HYST WAS ALL I NEEDED.
YOUR POST INDEED HAD A POINT, THE POINT WAS YOU WANTED
SOME COMFORT AND FACTS.
I KNOW IT'S HARD NOT TO WORRY BUT AS I HAVE SAID, THIS IS VERY CUREABLE AND WHEN YOUR DOCTOR GETS BACK I AM SURE HE WILL TELL YOU THIS. MEANWHILE TRY AND RELAX.
YOU'LL BE FINE, YOU WILL JUST HAVE TO MAKE SURE YOU FOLLOW UP WITH THOSE CHECK-UPS AS OFTEN AS YOU HAVE TO.
DON'T FORGET TOET US KNOW WHAT THE DOC SAYS.
  #5  
Unread 07-28-2002, 08:51 PM
Finally have a diagnosis

s Legume

I'm so sorry to hear the final diagnosis is cancer. I hope you don't have to wait too long to discuss this all with your doc. To his credit, he did attempt to call back that same night. So many people have caller ID, he most likely did not just want to hang up with his first call. That would have been worrisome as well. You can expect to be anxious as you wait to hear what the treatment plan will be. But it sounds to me like you are on your way to better health. Hope your move from NJ to PA went smoothly.
And of course there was a point to your post. You knew where to come to share with a bunch of understanding, supportive, loving sisters.
Come back often in the days ahead.

karenann
  #6  
Unread 07-29-2002, 05:05 AM
So Glad You Posted

I'm sorry about your news that it IS cancer, but now that you knowm hard as it is, you and your doctor can move forward to treat it amd make you a survivor. And there was a very good point to your post--letting it out. This is a wonderful place to let it out. Although we have many gynecological cancers here in many stages, we see the cancer word and we come together just to be here. See, you now have five of us here with you, with you in spirit all the time. You're not alone in this and I think more Hyster Sisters (I think of them now as just sisters) will join you and the rest of us. Please keep us updated, post anytime if you need to cry or vent, and look into the prayer board as well--terrific sisters there too.
  #7  
Unread 07-29-2002, 10:27 AM
Legume

This is my first post since joining this site. I have been lurking, learning and reading.
I am 2 weeks post op for a total hyst (feeling very well)....I was diagnosed with Stage 1a endometrial cancer. I am 44. I had been having wierd longer and heavier periods, lot of pain and clotting and between period light spotting. I went to the dr. a years ago and she said it was probably just my age and hormonal, but if I was still doing this in 6 months we would do a sono....at 6 months I had a sono and she said it looked like I had a polyp, which would need to be removed. I scheduled the surgery and much to all of our surprise it turned out to be cancer. I feel so fortunate that it was found at stage 1, it was well differienciated(sp?).....I had a ct, colonscopy, chest x-ray and blood work (all turned out fine) within a two days of the d & c , talked with the surgeon two days later and had surgery the following Saturday. It all happeded so fast. I got my final pathology report from the surgeon (all the path from the surgery) and it was indeed stage 1a, no lymphnode involvement. He said no further treatment will be needed, just heal and come in for routine checkups.
I was also scared to death....I cant imagine what you are going through emotionally considering the time that you have waited and then moving and getting new drs. I have been with my gyn for 20 years and that gave me some level of stability through this.
Good luck and keep us posted.
  #8  
Unread 07-30-2002, 04:29 PM
This is my first post after lurking for a couple of months...

...and I want you to know, Legume, that you are not alone with endometrial cancer. I have it, too. I started out having some slight back pain last October, then a period that never ended. Being a teacher, of course I put off calling the doctor until December, and then couldn't get an appointment until January. My pap was normal, and my gyn ordered a transvaginal ultrasound to check my fibroids. Two had disappeared and one had grown a bit. Since I am 50, the doctor wanted to "wait and see". She put me on progesterone to bring my periods back to normal, which it did. I was ok until April, when the back pain began to gradually increase and by the middle of May I was taking 12-16 Advil a day. And, of course, being a Special Ed. teacher, all I wanted to do was make it through the school year, and THEN I'd call the doctor. I went in to see her on May 28th and had a TAH on June 5th because of the fibroid. Surprise! She found the endo cancer. I was totally blown away by the diagnosis since I had not had any of the usual symptoms. It is Stage 3 because there were also cancer cells in 3 lymph nodes. I've had 2 CT scans since my surgery, and both were all clear.

I just finished my 16th radiation treatment--I go daily and have about 2 1/2 more weeks to go. Then I'll get a break for a couple of weeks and go back for the internal treatments. No chemo.

I was frightened at first, but only for a few days. I had found this site before my hysterectomy, and started looking at Cancer Concerns as soon as I found out that I, too, had cancer concerns. Even though we had not yet met, all the ladies here have been a great source of comfort and information to me. I work in a school with 89 women, all of whom have taken wonderful care of me by praying, cooking, calming, and cheering. And I have turned the fear and uncertainty I was feeling over to God. Since I did that, I haven't worried too much about the future with this disease. I'm confident that with the excellent medical care I'm getting, the prayers, love, and support from my family and friends, and my determination to beat this--surely I WILL, and never have to deal with it again. LOL I told my school nurse (a breast cancer patient) about that, and then I said, "Maybe I just have a major case of DENIAL," and she said, "Either that or we're too dumb to worry!"

Anyway, Legume, the unknown is scary. I was scared to death before my first radiation treatment. It turned out to be a breeze. Now, I'm in and out of the Cancer Center in 15 minutes flat, and promptly go reward myself at the mall 2 blocks away! The people are so nice and they do their best to make my daily visits "pleasant".

I don't know if it'll helped you to know that there's another endo person here. It has certainly helped me to read all the posts from the wonderful ladies on this board. Please let me know if I can help you in any way.
  #9  
Unread 07-30-2002, 05:55 PM
Finally have a diagnosis

i also had endo cancer in april of 2002, i had a radical hysterectomy in may. i was bleeding everyday for one year
and they thought it was part of menopause until i went to a
different doctor and she took a biopsie. i was scared out of
my wits. they did not know if it was the worst case scenario
until they operated. thank g-d it was not the worst case. I did
not need any additional treatment. you will be ok. it is a slow
growing cancer. have faith and believe.
  #10  
Unread 07-30-2002, 09:24 PM
Finally have a diagnosis

Hi, Legume. I haven't posted much either, but there is a lot of knowledge on this site. I, too, had endo cancer, stage 1; put up with non-stop bleeding for a year, then finally went to the right ob/gyn who did an endo. biopsy, and found cancer cells; scheduled me for hyst. on Nov 1, which was postponed; had an MRI prior to this, and found out the tumor was larger than they thought, and right beneath my bladder, thus I had radiation treatments prior to my surgery. I think if it is needed, that usually radiation is done afterwards, but many women don't need it at all. Anyway, you are NOT alone. Give it to God ... I could not have gotten through the past year without my faith, which has increased thru this whole thing. And without my family and friends, who have supported me so wonderfully. I think that, for me, a lot of good came out of my experience; hopefully, it will for you, too.

Take care of yourself, and keep in touch!
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