Not Terrified Anymore

Hello Everyone,

I am at 2 weeks and 3 days post op and finally able to come in here and write to all of you. I had my total hysterectomy on Jan. 27th and other than having a few fainting spells and a swelly belly, I am doing great.

The pathologist report said that my cancer was all contained within the uterus. There was a 20% evasion into the uterine wall and that I don't need any further treatments. I do, however, have to go for check ups every 4 months for 2 years and every 6 months for the next 3 years after that.

I would like to be a voice to help other women know and understand their bodies more than I understood mine. Even though Uterine Cancer seems to be the easiest one to cure (from what I understand), I think it's the hardest to detect w/o a biopsy. Just going in for regular pap smears doesn't usually catch it UNLESS maybe it has spread. I need to do more research on this subject and maybe be able to help others save their fertility through knowledge.

I look forward to hearing from you all. Thank you so much for all of your help during a time in my life where I needed it.

Love,
Melissa

Hi Melissa,

Thanks for the update. On 3/3 my wife was diagnosed with endometrial cancer grade 1. She is scheduled for a pre-op meeting with a gynocologist oncologist on 3/28. Depending on the availability of the hospital surgery room she may have a hysterectomy on 3/29 or on 4/3. As I understand it, we will learn more about the stage and other risk factors after the uterus is examined by a pathologist.

I have never received news that was so disarming as 'your wife has cancer.' The best I could do in response to the news was to ask the doctor to repeat the type and spell it so I could look it up on the internet. While searching the internet I found your post. We have felt your fear and thank you again for the hope that you have given us as we take the next steps in the treatment, diagnosis, prognosis journey.

We'll keep you all posted.

Cheers,

George

Hi George,

My husband has been in your shoes as well. You are not alone. It is one of the most horrifying news we can receive it seems, because we know this disease can be so deadly! I am so, so sorry they are making you wait so long to get this taken care of. From the time I found out until the time I had my surgery was exactly 2 weeks. I guess since Grade 1 is not an aggressive cancer, they feel there is plenty of time to do the surgery, but it's better for the patient if they would get on the stick.

What state do you live in? If you have a Baylor hospital near you (I was 3 hours away from ours, but made a wise choice to go there), I highly recommend going there. I found a female gyno/oncologist who is awesome at the Baylor Hospital in Dallas, TX!

I have some suggestions during your wait and while you're looking at info about the cancer.
Try really hard not to let the bad stuff you read take over your mind. I read a lot of positive things about this type of cancer, but anytime I read some bad information, that's what took over mind and I was unable to stop crying, couldn't sleep or eat (for a couple of days anyway) and was just going insane. Focus more on the good about this cancer and not the bad.

Another mistake I made was that I had focused so much on the cancer that I didn't look into the surgery and what to expect. You and your wife both need to be prepared for this and there's a lot of really good information out there. One of my favortie sites is www.hystersisters.com. You will find her surgery in there and when you put her surgery date in there, they will send you info every 2 weeks of probably how you're feeling and reminders NOT to be overdoing it. You have to pretend (of course, I didn't pretend because I already knew...ha!) that your a princess and and must be pampered as one.

I would be glad to talk to you or your wife (my husband would be available as well if needed) on the phone if I can be of any help at all. Someone from this site took the time to call me and she was a great help. I am more than willing to do the same. My e-mail address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Feel free to write me and give me your phone number (I would give you mine if you'd rather do it that way) and I'll be glad to answer any questions and be as helpful as I can be.

Blessings and Peace to you both,
Melissa

Hi Melissa,

Thank you for your kind offer to communicate with us personally. We would both appreciate talking to someone like yourself and your husband who have recently lived through a similar experience. However, the webmaster edited out your email address. I understand the policy that was cited and I actually support their actions since there are some people who might misuse personal information. However, it would be nice if the webmaster could function as an intermediary and forward my information to you or your information to me. I checked their policy page and there was no mention of an intermediary service. I'll keep looking for a way.

In the mean time. This experience has actually brought us closer together. We are adjusting our diet and eating habits. Visiting sites like this one and hystersisters.com. Communicating with family and friends more and taking time to smell the roses.

We live in Oregon and my wife Jan will have her hysterectomy in Eugene at the Sacred Heart hospital. We are focusing on the positive and I'm happy to report that the things that are known to date about the cancer are the characteristics that offer the most hope to someone with a diagnosis of endometrial cancer.

But, I would be remiss if I didn't mention that it takes a great deal of effort and energy to keep focused on the positives. Everyone we know has been very supportive and we feel their love and support but their are times when we just need to rest. Going out in town or attending community get togethers really takes a lot of energy and we find that we really have to budget our energy wisely.

We will keep you informed and look forward to the time when we will be able to communicate with you directly.

Cheers,

George & Jan

Hi Melissa,

Thank you for your kind offer to communicate with us personally. We would both appreciate talking to someone like yourself and your husband who have recently lived through a similar experience. However, the webmaster edited out your email address. I understand the policy that was cited and I actually support their actions since there are some people who might misuse personal information. However, it would be nice if the webmaster could function as an intermediary and forward my information to you or your information to me. I checked their policy page and there was no mention of an intermediary service. I'll keep looking for a way.

In the mean time. This experience has actually brought us closer together. We are adjusting our diet and eating habits. Visiting sites like this one and hystersisters.com. Communicating with family and friends more and taking time to smell the roses.

We live in Oregon and my wife Jan will have her hysterectomy in Eugene at the Sacred Heart hospital. We are focusing on the positive and I'm happy to report that the things that are known to date about the cancer are the characteristics that offer the most hope to someone with a diagnosis of endometrial cancer.

But, I would be remiss if I didn't mention that it takes a great deal of effort and energy to keep focused on the positives. Everyone we know has been very supportive and we feel their love and support but their are times when we just need to rest. Going out in town or attending community get togethers really takes a lot of energy and we find that we really have to budget our energy wisely.

We will keep you informed and look forward to the time when we will be able to communicate with you directly.

Cheers,

George & Jan

Hi Melissa,

Thank you for your kind offer to communicate with us personally. We would both appreciate talking to someone like yourself and your husband who have recently lived through a similar experience. However, the webmaster edited out your email address. I understand the policy that was cited and I actually support their actions since there are some people who might misuse personal information. However, it would be nice if the webmaster could function as an intermediary and forward my information to you or your information to me. I checked their policy page and there was no mention of an intermediary service. I'll keep looking for a way.

In the mean time. This experience has actually brought us closer together. We are adjusting our diet and eating habits. Visiting sites like this one and hystersisters.com. Communicating with family and friends more and taking time to smell the roses.

We live in Oregon and my wife Jan will have her hysterectomy in Eugene at the Sacred Heart hospital. We are focusing on the positive and I'm happy to report that the things that are known to date about the cancer are the characteristics that offer the most hope to someone with a diagnosis of endometrial cancer.

But, I would be remiss if I didn't mention that it takes a great deal of effort and energy to keep focused on the positives. Everyone we know has been very supportive and we feel their love and support but their are times when we just need to rest. Going out in town or attending community get togethers really takes a lot of energy and we find that we really have to budget our energy wisely.

We will keep you informed and look forward to the time when we will be able to communicate with you directly.

Cheers,

George & Jan

Hi Melissa -

My name is Susan. I am 39 years old and on the 13th of this month went to my OB/Gyn for my yearly pap. It has not quite been a year yet, but I have been having periods every 20 -21 days (i am normally a 28 - 29 cycle person), lots of back pain and some pain around my ovaries more than usual. During my exam, my dr. found a cyst on my right ovary and ordered a vaginal ultrasound right then. While looking at the cyst they discovered that my uterine lining was thickened. I do not remember what he said the exact thickness was. It was at that point that he told me that only 2 things cause a thickening of the uterus. One being polyps and the other being uterine cancer. He gave me 2 options. One being a D & C and the other taking 12 days of Prometrium. The Prometrium would cause a chemical
D & C. He scheduled another ultrasound on the 27th and told me that if the thickening had gone away, it was the polys, but if it had not then we would have to do the biopsies. Did you by chance take the Prometrium. My main question right now is about the medication. I was assuming that I would have a huge period while all of the stuff in my uterus was breaking down (he said that I would bleed for 7 - 9 days). I have been off of the pills for 2 days and I have bled very little. Of course, my mind starts thinking the worst, such as there is nothing to break down, because it is cancer. Looking for those positive thoughts, but sometimes they are hard to find, as you well know. Would you please give me some insight on this medication if you have any. I am sure you know way more about uterine cancer and all that it involves now. I remember you stating that your cancer was Stage I. After the surgery, does that mean that you will never have to worry about it again? Any information that you have would be greatly appreciated. I am also a fellow Texan. I live around the Beaumont area. Thanks in advance!

Susan
--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

Hi Susan,

Thank you for writing. I can only imagine the fear you must be going through at this time. What I don't understand is why your doctor didn't go ahead and do an endometrial biopsy then and there. If it is cancer, then I would think you need more than a D & C or having a chemical pill to cause basically the same thing.

When I was younger and in my early 20's, my doctor did a biopsy and found out I was pre-cancerous. He gave me provera and told me I would need to be on it the rest of my life, except for when I wanted to have children, in which case, I would need to come to him for Clomid. So, I took the Provera (which is probably equalivant to what you are taking) for 10 days, spotted that entire time and then after the last pill...Boom! I had the never ending period that was just full of tissue. Grose sounding, I know...but that was due to the lining being built up for so long. As it turned out, I found a natural route to go w/o taking Provera and took something called Black Cohosh 7 C's by Solary. I bought it at the Health Food store and it kept my periods regular. My doctor checked me after a year with another biopsy and my body was fine. He told me to continue doing what I was doing. I quit taking the Black Cohosh about 8 years ago (my bad)just because I didn't think I needed it anymore. I did, however get pregnant w/o the clomid about 3 years after I first saw my doctor. She is our only child.
My thoughts on your condition is that I would make sure your doctor gives you a biopsy just to make sure you don't have cancer. If you do have cancer, then you can look at your options there, but knowing what you know now, that it's a possibility you have it...I wouldn't mess around. I would have the biopsy. This is something he can do in his office and it takes all of about 5 minutes. You should have the results back within a week.

I hope I have answered your questions. If not, please write again and I'll try to be more helpful. Did your pills every kick in? If not, it could be that you don't have a thickening of the lining due to the lining not shedding each month. Something else may be causing it, such as fibroids or maybe scar tissue. If you have endometrosis, then from what I understand, scar tissue can result from that which can also cause the lining of the uterus to thicken. Keep me posted.

Sincerely,
Melissa

Hi Melissa and Susan,

Jan is up and about after her hysterectomy 3/29/06. The Doctor was able to perform it laproscopically and remove the uterus vaginally (it took 4 hours). The visual inspection showed no signs of malignancy, and the solutions recovered from 3 separate abdominal washes showed no signs of malignancy. Now we are just waiting for the Pathologists report of his findings from a microscopic examination of the tissues from the uterus, cervix, ovaries, and lymph nodes. We'll be going home Saturday, April 1, 06 and we should get the Pathologists report Monday April 3, 06. I'll keep you all posted.

Cheers,

GeorgeB

Jan is doing very well after the lapriscopically assited vaginal hysterectomy (lavh). We received the pathologists report today, 4/4/06. It confirmed that the cancer was grade 1 stage 1a which means it had not spread beyond the endometrial lining of the uterus. Dr. Dotters, the surgeon, the nurses, and staff at Sacred Heart Hospital in Eugene Oregon performed well above our expectations. They were skilled, caring, and supportive human beings. We feel very fortunate and we are taking time to count our blessings.

Peace be with you.

George and Jan