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Complex Hyperplasia with atypia at 30! Complex Hyperplasia with atypia at 30!

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  #1  
Unread 05-12-2009, 01:48 PM
Complex Hyperplasia with atypia at 30!

Hi

I am a 30 year old, no kids yet, who was just diagnosed with complex hyperplasia with atypia. I got this diagnosis after a diangostic DNC (which came after an in office endometrial biopsy).

Right now my doctor is giving me 10 mg of progesterone and plans to rebiopsy in a couple months. When i had a meeting with her today, she pretty much told me to think positive thoughts and pray, and that 80 percent turns into cancer. To me that means, this isn't going to work!! She mentioned a hysterectomy.

I am devastated! There has to be some kind of alternative, or more successful treatment then these progesterone pills. I don't want a hysterectomy, I almost feel like giving up on life entirely. I'm afraid to consult a oncologist, becuase i don't want them to steam roll me into this surgery.

As of now, I have no pain, my only symptom is that I don't have periods, its difficult to enforce a situation that will bring me great pain.

I don't know what I'm thinking, I am just in panic right now.

-kittycatblinks
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  #2  
Unread 05-13-2009, 09:20 AM
Re: Complex Hyperplasia with atypia at 30!

has anyone had success with drug treatments, what worked for you, i was reading information at the Hers foundation, and I feel like I want to die rather than endure this!

-kittycatblinks
  #3  
Unread 05-13-2009, 09:35 AM
Re: Complex Hyperplasia with atypia at 30!



I did not have your diagnosis so I have no personal experience to share about what I would do in your shoes. I can tell you that I did have abnormal paps prior to my hysterectomy and the uncertainty was quite nerve racking and scary! All of my issues ended up being endometriosis for which I did have my hysterectomy as there were no alternatives available for my specific situation.

I did have surgical complications and my recovery was a long one and my overall health was compromised for many years. However, I am not the norm. I got to be a statistic!

Before considering a hysterectomy, each of us needs to carefully weigh our pros and cons to determine if it is right for us. If there are alternatives available, it is a good idea to try them first. We won't know what is successful for us until we try it!

I would recommend you seek a second opinion about what is best for you. You might even consider seeing a gynecological oncologist, an expert when it comes to knowing the risks and treatment options for your particular diagnosis.

Research is great, but keep in mind that some places are going to offer very biased information. Search for information backed my reliable medical research. I could post my story all over the place and advise women never to have a hysterectomy because of all that went wrong with me. And I would be telling the truth about how bad it could be. But I am 1 in how many? My doctor had never had a patient like me! And everyone I know personally who had a hysterectomy had a much more positive experience! So sharing my story for the sole purpose of preventing women from having hysterectomies would be very biased and not realistic.

I know the thought of a hysterectomy is scary and I hope there are options for you. Look through our Resource Database where we have links to reputable information. Learn all you can and always talk to your doctors. Ask them all of your questions until you understand exactly what is best for you!

Sending extra s your way!
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  #4  
Unread 05-17-2009, 10:21 AM
Re: Complex Hyperplasia with atypia at 30!

Hi kittycatblinks,
I'd like to share my story with you. I have treated complex hyperplasia with atypia with progestins (though I have conflicting pathology opinions. One said complex hyperplasia with atypia, two said it was stage 1 endometrial cancer. Apparently it can be a subjective grey line.) I was 32 years old when I was diagnosed. I was newly married with no children.
I had had a D&C several years earlier and those results showed everything was normal...so how could this be? I had those slides re-read, and found out that the first "normal" path report was completely wrong. All re-reads agreed I had complex hyperplasia with atypia at that time. I tell you this part of the story to encourage you to see the silver lining of KNOWING you have this. You are empowered with this information. Yes it is scary to hear you have this, depressing to and scary to think about hysterectomy at a young age or about a horemone therapy that you're not certain will work. But you have the life saving knowledge that an issue exists and you get to decide what you want to do, how you want to treat this. I had sought medical help and was incorrectly told I was fine. The cost was not being able to start treatment right away. Who knows how differently things may have played out.
The diagnosis is very stressful to say the least. Cancer, surgery, infertility. A heavy load to be hit with at once. I understand!!!
After the second D&C, I opted for progesterone therapy and follow up biopsies. The biopsies were nerve wracking. Waiting for results is never easy. Also I could never hang my hat on a good result because a biopsy is a sampling. I always wondered if there were cancer cells elsewhere but not in the cells they happened to sample.
In Feb of 2005, I went ahead with a hysterectomy, keeping my ovaries with the agreement that I we would monitor them. There was no evidence of cancer or hyperplasia in my uterus. This tells me that the progesterone worked.
Now there is another element to my story that is perhaps different from yours, but I should share it so you have the full picture. At the time of my hysterectomy the doctor saw profuse endometriosis. Just last month I had surgery for a malignant tumor on my right ovary that appears to have arisen from endometriosis on or in the ovary. Haven't confirmed this yet. Will see the oncologist next week and find out more.
Looks like we've caught it early though I will be having more surgery next month to see if it had spread anywhere else.
Kittycatblinks, I also want to add that I too was freaked out by the info from HERS. Having gone through hysterectomy I have to say I do not subscribe to their point of view when it comes to saving your life. Perhaps they are correct on other points they make regarding "needless" hysterectomies. I can't say. I do believe I am still alive and feeling as great as I do (yes, even with the ovca diagnosis) because I had this surgery. The unknown is the greatest fear generator here. Finding other women who have walked on your path before before and finding doctors you trust, for me, the most empowering antidote.
Hugs to you. Let me know if there are any questions about my experience I can answer for you.
-On A Journey
  #5  
Unread 05-17-2009, 06:39 PM
Re: Complex Hyperplasia with atypia at 30!

The HERS foundation is very negative and I understand when you look at needless hysterectomies and thiings where women went in and doctors did things like appendectomies without talking to the patient. However your doctor is talking to you right now and giving you the option not to have a hysterectomy at least for awhile. As On a Journey says you will have to be monitored but especially if you are 30 and may want to have children it's a good place to start. I have read that this is standard for young women who show no cancer but pre-cancer and think of it this way 20% of the time it reverses so who is to say you won't be one of the 20%. Don't give up on life I'm sure there are people out there who love you and don't want you to give up.

Go with the progestins and keep moving forward. In my case they found stage 1 cancer and complex hyperplasia w/ atypia during a D&C because of that I was slated for pretty much an immediate total hysterectomy. I didn't have anything other than a couple of heavier days during regular periods. So hit me like a ton of bricks, I'm coming out of it and my DH is very much glad that things were caught early and he wants me in his life and alive.

Find some relaxation and healing CDs, listen to those because the stress will also cause issues, try the progestins and yep pray that it all works. In the meantime know you are doing what you can and as some wise woman on this site told me when I was first diagnosed "don't borrow trouble from tomorrow". Right now you have options that don't involve surgery and if all goes well it never will. If it does you know you tried everything that you could and since you are being monitored if things would go cancerous they'll catch it early.

Hugs and prayers.
  #6  
Unread 05-17-2009, 06:57 PM
Re: Complex Hyperplasia with atypia at 30!

Hi there, I am hoping and praying things go well. Although I had ovarian cancer, I can relate to the feeling your are expressing. I just want to encourage you and let you know there are so many treaments and options now for cancer paitients. I was originally told I had stage 3c and a low probability of making it 5 years but I am now 2 year out and still not sign of recurrence. Stay strong and keep the faith! I am really sorry for the angst you wil go throu in the meantime though. Hugs and positive thoughts are being sent your way!!!!!
  #7  
Unread 05-19-2009, 04:46 PM
Re: Complex Hyperplasia with atypia at 30!

  Quote:
Originally Posted by kittycatblinks View Post
Hi

I am a 30 year old, no kids yet, who was just diagnosed with complex hyperplasia with atypia. I got this diagnosis after a diangostic DNC (which came after an in office endometrial biopsy).

Right now my doctor is giving me 10 mg of progesterone and plans to rebiopsy in a couple months. When i had a meeting with her today, she pretty much told me to think positive thoughts and pray, and that 80 percent turns into cancer. To me that means, this isn't going to work!! She mentioned a hysterectomy.

I am devastated! There has to be some kind of alternative, or more successful treatment then these progesterone pills. I don't want a hysterectomy, I almost feel like giving up on life entirely. I'm afraid to consult a oncologist, becuase i don't want them to steam roll me into this surgery.

As of now, I have no pain, my only symptom is that I don't have periods, its difficult to enforce a situation that will bring me great pain.

I don't know what I'm thinking, I am just in panic right now.

-kittycatblinks
I had the same diagnosis except no atypia (dont understand the difference) but complex displaysia. My pap came back with atypical cells, though. We did the biopsy in the office and it came back with those results. I had the option of doing the 3 months of progesterone and then biposy again but I am not a wait and see kind of person. I worry too much. I opted for a robotic da Vinci hysterectomy and took uterus, cervix, tubes and ovaries...but I am 44. I just wanted you to know I know how you feel and I went thru the same feelings. Actually, until I found this site I was thinking the worst. My hysterectomy went very well. I had never had surgery. I was scared of the IV, etc. but I asked for "butterfly" needle (the smallest they can use on adult)and I barely felt it. I went to sleep and woke up feeling like I was in control of it-even if it was cancer. The pathology report came back ok, but I have no regrets doing the surgery. Recovery hasnt been an issue because I walked out of the hospital the next morning and havent had problems except for constipation. I can handle that. I hope you find the answers you are looking for. I hope your DR is wise, and you follow your heart and gut. I knew this was my only option.Many sisters on here know how you feel and care about you. Good luck. (hugs)
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