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  #1  
Unread 03-20-2004, 08:36 AM
hyperplasia

I recently went to ob/gyn for pap and to talk about my periods being abnormal. I had been getting periods twice a month for a couple years, though they were light.
The last ob.gyn said that it is normal for a woman my age, 44 at the time. I will be 46 this year.
Last Dec. my periods started to be more funky, They lasted longer and were heavier than normal, In Jan I had 3 periods. Not fun.
In Feb. I called and made an appointment with a new ob/gyn. By that time I had my period for 12 days straight. She did a pap and another test, I can't remember the name, endo- something. She called me on the phone a week later and told me that I had endometrial hyperplasia. She gave me options, told me that it was a precursor to cancer but it was at an early stage, She suggested a TVH/BSO. At the time she called, I started to write down everything that she said, but I was in such shock and starting to freak out that I know I missed some things. I think she said that I was at stage 1b. Can anyone tell me what are the stages? Where does it start and where does it become cancer?
She gave me alternatives, but to tell you the truth, the word cancer scares the **** out of me. So I have decided to have the surgery. I have been on the fence about keeping or getting rid of my ovaries. She had said that it is up to me.
My Hubby's Dad passed from cancer, (he took care of him til the end so he saw what it does to a person) and he is worried and just wants everything taken out. I am afraid that if I leave my ovaries in that something might happen with them, or worse yet Ovarian Cancer. They can not detect it until it is to late. Then there is the question of HRT's. Should I or should't I?
There doesn't seem to be any other problems, she had done a thyroid check and pap, they both came back neg. Other than my unusual periods, I have no other symptoms. No pain, other than PMS stuff. Not even cramps. Though I have mood swings. I have had those for many many years. :MOODY:
I have been trying to look around for answers. At the library, here on the net. This site is the best.
I know that there has to be someone out there that is at the same crossroad that I am at. If so, I would love to hear from. I have 16 days left for me to decide about my ovaries.
This Sudden Menopause does not appeal to me at all. Neither does OC.
Wow. It does help just to get my thoughts out.
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  #2  
Unread 03-20-2004, 09:17 AM
hyperplasia

Dear Redfire,
First of all, I want to say that I was also in a state of shock at my consultation when the word "cancer" was spoken. I was outwardly calm, and asked questions, and wrote things down, but when I left the gyn's office, I couldn't remember a thing!

I'll tell you a little of 'my story' because of the similarities and the differences between us.

Before my surgery, I was having periods all the time too. It had started in my late 30s but went back to normal for a while, then at 41 got irregular and too-frequent again. I thought I was entering peri-menopause.

What an unpleasant surprise to be diagnosed with cancer! The cancer in my endometrium had progressed farther that yours has. I can't explain the difference between hyperplasia stage 1B and cancer stages, and I'm a little confused because before surgery they would only give me a grade, not a stage. So I think the two conditions are different.

Anyway, in my condition, the surgeon didn't give me the option to keep my ovaries. The surprise for me was that she was able to do my surgery with a laparascopic-assist! I was prepared for a big scar -- and she said that during the surgery she might have to change methods -- but as it turned out, my scars are kind of cute! Can't even see where she went through my bellybutton, and the ones on each side of my abdomen look like I leaned on a couple of hot pencil-erasers. Below my hairline, there's a little @1-inch long horizontal scar.

I knew I'd be going into sudden menopause, and it hasn't been bad at all! I don't want to take HRT, and in a few weeks we're going to discuss alternative options, and at this point I think all I want/need is a good compound with calcium/magnesium/zinc/vit D to protect against osteoporosis. I have been on an anti-depressant for several years, and that may be working to minimize some of the side-effects, too.

For me, having no ovaries has been a great relief. No worries about a new cancer. A little sad because I never bore children, but having waited so long it was already getting to be a slim possibility that I'd have a healthy pregnancy, and I had been looking into health risks for babies born to women late in life.

It really does help to get your thoughts out in writing, doesn't it! I'm so glad I'm here with 'sisters' who listen, and here to listen to others also.

Best wishes!
=e
  #3  
Unread 03-20-2004, 10:05 AM
hyperplasia

I just started back on anti-depressants, due to the mood swings etc. So I am hoping that those will help me after surgery.
I really have no use for my uterus, it has served me well, I had 2 children and they are now in college.
I am leaning towards removing everything. Just get it over with, but still have fear. I'm sure everyone does.
Thank you for reading this, and replying, I will get through this with the help of family and all my sisters out here.
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  #4  
Unread 03-20-2004, 10:06 AM
hyperplasia

Dear Redfire,

I am an endometrial cancer survivor, which you know is beyond hyperplasia, who has reversed cancer w/progestins not surgery. Now I have a progestin-only Mirena IUD/IUS as followup. (It is good for 5 years)

There don't seem to be many people like myself on these boards; I worry that not all know of the option in certain cases, but I know another hystersister who has done the same thing even though she is older than I and has had children.

Yes, there are no guarantees for my future, but things are looking fab so far.

I am hoping that I help ease your fears about the dreaded, but sometimes surprisingly easily treatable cancer.

Pat
  #5  
Unread 03-20-2004, 11:36 AM
hyperplasia

Hi Red
I was dx with endo ca stage 1a almost 2 years ago. Your story sounds so familiar. I had also had unusually heavy, long and painful periods...when reporting it to my dr. she said that it was perimeno and was normal for woman my age.....a year later she did a sono and found what she thought was a polyp.....did a d and c and found that the polyp was early stage endo ca. What a shock. One week later I had a tah/bso. My surgeon and gyn said the ovaries must go....that if there was any spread that would be the most likely place. I would strongly recommend that you seek the consult of a onc/gyn. My gyn referred me to one...he did the surgery, sampled lymphnodes (to insure that there was no spread) and checked out my other organs. There have been woman on this board that had a hyst and cancer was found in their path reports and had to go back in to have lymphnodes sampled. My understanding is that most reg. gyns do not sample lymphnodes, only onc/gyn do this procedure. If you have any questions please ask me in the post, email me, or private message. I know this is a scary time....
  #6  
Unread 03-20-2004, 08:28 PM
been there

Redfire, you are where I was just about one month ago. I went in for a very light period that lasted two months. They found hyperplaisa atypia. Doc doesn't think there is any cancer yet and wanted to take everything. I figured I didn't need it or want it anymore, so I said just take it all. My surgery is this Thursday. I have a wonderful doc who is a obgyn and an oncologist gyn. He is loveing and caring and I trust him with my life, literally. Some people here suggested I get a copy of my pathology report and get a second opionion. I did neither. Why, I don't know, but I just totally trust my doc. I am 50 and he wants to see how I do without HRT at first. He said he will wait and in about a month we will talk. As strange as it sounds he and I both agree that this may be a new healthy begining for me. I have quit smoking, I am loosing weight and I am exerciseing more trying to get healthy for this surgery.
I hope you are comforted by some of the other stories and advise. For me, this is a positive life changing opportunity.
Hope all comes out well for you. God Bless
P
  #7  
Unread 03-21-2004, 06:53 AM
hyperplasia

Redfire,

Sorry that you are having this difficulty--I had irregular bleeding at age 48 and after an ultrasound showing a thickened uterine lining, and then a D&C which showed probable endo cancer, I had a TAH BSO within a week of the D&C. That was in February of 2000 and I've been fine, and cancer free, ever since, with no followup treatments necessary. Early endo cancer has a good track record of non-recurrence...but it needs to be caught early if possible.

Would you consider seeing a gynecological oncologist? They are experts in gyn cancers and it might help you to determine the best course of action regarding the extend of surgery needed, HRT, etc.

Just to tell you, I've taken no HRT whatsoever because of my cancer dx, and have had no major problems.

Blessings.
Marlene
  #8  
Unread 03-21-2004, 05:45 PM
hyperplasia

Hi -

I am certainly no expert but will tell my story. I had a laparoscopy because of an ovarian cyst in January. My gyn said that while she was "down there" she wanted to do a d&c because i had been having very heavy irregular periods. I am 53 and have had heavy irregular periods for most of my life. She thought they were just perimenopause at this age, but wanted to do a d&c. Imagine my surprise when it came back with complex hyperplasia/severe atypia. She suggested a TVH/BSO but I was concerned about "what if it was really cancer, how could she tell if it spread." She suggested a 2nd opinion from a gyn/onc who felt that my path should be looked at by a pathologist who specializes in endometrial pathology. He diagnosed it as endometrial cancer...what stage, etc. I don't know and won't know until after the surgery. I am now scheduled for a TAH/BSO with staging and examination of the lymph nodes this coming Thursday, 3/25, by the gyn/onc with my gyn assisting. It's been very difficult waiting for all the 2nd opinions, but I am glad I did. I am not trying to influence you in any way. I'm not a physician and everyone should do what they feel is best for them. I do agree with the opinion others have expressed that you should consider getting the opinion of a gyn/onc. Good luck...I'll be thinking of you.
  #9  
Unread 03-22-2004, 07:07 PM
there is always hope

Redfire,
I know you are going thru a very stressful time. I too have been diagnosed with complex hyperplasia with atypia. I am 35 and felt that surgery was not what I wanted or needed if there are any other options. In my opinion, surgery should be a last resort, not a first option.

There are options out there for this dx. I have been on progestins for 3 months and will be scheduling a second D&C in April to see if it is gone. Hyperplasia CAN be treated with progestins. It has been proven.

I am all for keeping all my parts. So, if there is not any thing wrong with the ovaries, why take them? These are just my opinions and I know you have to do what is right for you.

The other ladies are giving good advice about second opinions and consulting a gyn/onc. These are very important steps to take, no matter how scared you are. I find that the more information and knowledge I have about this dx, the better off I am. So please read and educate yourself, you will be better armed when facing the doc's and will find more questions you woulden't have known to ask otherwise.

If you can, take someone with you to these appointments. My doc has thrown me a few curve balls that I wasen't expecting and was by myself...I forgot most of what he told me by the time I made it to the car!

Take care in this stressful time. Know that your sisters are here to support you no matter what decision you make. Keep us posted.
  #10  
Unread 03-23-2004, 05:23 AM
hyperplasia

This is a great thread. I just posted one with a similar question. Like pmaen and smiley, my surgery is scheduled on 3.25. My story sounds exactly like Chris 5's. Love this site.

A couple of weeks ago, I asked my gyn/onc re: laparasocopy. Due to timing issues, I didn't learn the answer until yesterday.

I spoke with her assistant...and the doctor will call me today for further discussion. Here's the scoop:

It is considered experimental and a "study." So, if I am eligible and choose to go with this, my gyn/onc will require a second surgeon and my surgery will need to be delayed. Does anyone know what makes one eligible? It may be worth the wait. Would appreciate your opinion.

I have 1st stage or grade (?) endo cancer. They found this through a polyposcopy/coloposcopy with D & C. Everyone was surprised. Thought my unending periods were due to the polyp. (periods have been "more normal" since removed.)

I've had the hyperplasis in the past few years. There is cancer in my family. Does this make it more of a risk? Is it feasible?

With a lap and cancer, are they able to get it all and ensure no cancer?

Gyn/onc doesn't think lymph node removal will be necessary. BTW, she is considered one of the best--one to whom other docs would send their family members.

I'm 43, divorce and no kids...ovary removal is my decision...but still difficult. Like to keep as many pieces and parts as possible. Everyone with whom I've spoken...more than one gyn and gyn/oncs as well as family and friends are encouraging me to remove the ovaries.

For other medical reasons, I hesitate to do HRT and prefer to consider compounding.

I'm less than two days away from scheduled surgery...makes me a bit stressed...but may be worth the extra wait.

Any advice?

Thanks.

L.
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