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Complex HP with atypia. Hyster or not? Complex HP with atypia. Hyster or not?

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  #1  
Unread 09-23-2011, 05:44 PM
Complex HP with atypia. Hyster or not?

I am only 29 years old with no children. I was diagnosed with complex hyperplasia with atypia on March 2011. I have gone to various ob-gyn and an oncologist. All say that because of my age they will like to preserve my uterus for a while. They think I should have a child beforehand. All agree that I need a hysterectomy. I am not prepared for a child nor a hysterectomy at this moment. I am currently in the middle of finishing my law degree and working 40+ hours a day. Who is gonna take care of the child? Maybe I can wait a few years and have a child, but will it be too late? I am stressed out (will I loose the potential of being a mother or maybe my life if I wait?) I am currently on Megace 160mg which is driving me insane, I think I have become the poster child of side effects.
In ten days I will finish a 6 monts treatment which included Provera 10mg for a while (2 months) and Megace 160mg (4months). Crossing my fingers that it has helped. But in the long run I understand that progesterone helps but does not eliminate the problem. Hysterectomy is the only solution? Thank you!!
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  #2  
Unread 09-23-2011, 06:07 PM
Re: Complex HP with atypia. Hyster or not?

I am sorry for your diagnosis.
I had the same, and I elected to have the hysterectomy because I did not want to take a chance (30%) of there being cancer later. Remember that this means that there is and approximate 70% chance of no cancer later.
I want to point out that I am MUCH older than you are. I was already going through menopause, and I have TWO adult children. I wasn't planning on having anymore.
You situation is completely different.
If you want children, I would go to an oncologist that was on the same "page" as you are: preserving your uterus, ovaries, and tubes. These doctors are out there, so ask around or give a couple gyn/oncologists a try.
They watch you very closely and will try everything but surgery.
Anything is possible.
Look over your pathology report with a "fine tooth comb."
Are you relying on one report or two?
One sample from a pap, or TWO actual biopsies, evaluated by two separate
labs? Every pathologist is different when evaluating the slides from your cervix. The biopsies are usually small, so sometimes errors are made.
If the word "focal" appears in your pathology report, this may me helpful. I am not sure why, so ask your doctor. I just heard that from a symposium speech about screening for cancer for physicians.
If I were you, I would want at least two or three confirming biopsies to assist myself in making such an important decision.

Can some scans be done to deny or confirm cancer? I know that the hysterectomy is the surgery that stages the cancer, but if no cancer is there ( complex atypical hyperplasia cells) and you are very young, is a scan helpful?

I know that th emegace is a tough "road," but consider the alternative...hysterectomy.
Sometimes necessary to save our lives but so final.
If you want to have a child, fight for it! Don't give up until they say tht it is unsafe for you to continue.

I thought 30% was too high of a risk for me to endure. Easy for me to say, I already had two children and had gone through menopause.
That is another thing...you will go through surgical menopause.
Also, orgasms and having sex my not feel the same.

All to the above side effects are fine if it saves your life, but you are not there yet.

If I were you, I would seek a doctor that wants to help you save your uterus and other female parts, and have a child first.
Complex Atypical Hyperplasia is not a good diagnosis, but who knows? God may be with you and you may "clear" it on your own.
Just watch it frequently and carefully, with your doctor's visits and the tests he/she recommends.

God Bless you, and Good Luck.
  #3  
Unread 09-24-2011, 09:30 AM
Re: Complex HP with atypia. Hyster or not?

madisongiselle,
I am sorry you have this DX at such a tender age. I believe your doctors are telling it as it is. Complex hyperplasis with atypia (CHwA) does eventually lead to cancer. Very often in younger women it can be reversed but according to the two gyn/oncs I saw (I was trying to avoid the surgery even though I was postmenopausal) they only treat it with hormones and meds in young women who immediately want to become pregnant and then only for a limited timeframe. For those who do conceive, they strongly recommend a hysterectomy once the baby is born including right after birth to prevent any trace of cancer from developing.

Not to scare you, but also pls be aware that sometime when one has a CHwA DX, cancer might already by lurking; this occurred in my case. I am sure your doctors will be doing the proper tests to determine if the hormones and meds being used are reversing your DX.

I see you have a gyn as well as an oncologist, you may want to ask the latter if s/he has much experience with this pre-cancer DX. We in fact often recommend that when one has this DX they at the least have a consult with a gyn/onc who are the precancer and cancer experts. These doctors also are best to perform this surgeryas they are familiar with it and also know the needed procedures to do should cancer be present.

As you mention this is not the ideal time for you to become pregnant, please be aware that some women who had no alternative to surgery, turned to harvesting eggs to preserve their fertility. Of course, this is very costly and many cannot do this. Again, I am so sorry you need to make such important decision so very early in your life.

Please keep us posted. Good luck as you make these very difficult decisions and pls remember we are here for you.
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  #4  
Unread 09-24-2011, 04:59 PM
Re: Complex HP with atypia. Hyster or not?

Why not wait to make a decision after you find out if the Megace has reversed the hyperplasia?
  #5  
Unread 09-24-2011, 08:08 PM
Re: Complex HP with atypia. Hyster or not?

  Quote:
Originally Posted by CarolMcD View Post
Why not wait to make a decision after you find out if the Megace has reversed the hyperplasia?
Of course! that is what I am waiting for. Hopefully it has worked; but doctors have said Megace can help but won't cure it. Looking forward to see the result of the D & C. By nexr month I will know if it has worked
  #6  
Unread 09-24-2011, 08:11 PM
Re: Complex HP with atypia. Hyster or not?

  Quote:
Originally Posted by madisongiselle View Post
Of course! that is what I am waiting for. Hopefully it has worked; but doctors have said Megace can help but won't cure it. Looking forward to see the result of the D & C. By nexr month I will know if it has worked
I thought you would find out in 10 days?

I know what doctors say. How did you get hyperplasia? Did your doctors have an idea?
  #7  
Unread 09-24-2011, 08:20 PM
Re: Complex HP with atypia. Hyster or not?

  Quote:
Originally Posted by peggiesue View Post
madisongiselle,
..... Complex hyperplasis with atypia (CHwA) does eventually lead to cancer. Very often in younger women it can be reversed but according to the two gyn/oncs I saw (I was trying to avoid the surgery even though I was postmenopausal) they only treat it with hormones and meds .......Not to scare you, but also pls be aware that sometime when one has a CHwA DX, cancer might already by lurking; this occurred in my case. I am sure your doctors will be doing the proper tests to determine if the hormones and meds being used are reversing your DX.

I see you have a gyn as well as an oncologist, you may want to ask the latter if s/he has much experience with this pre-cancer DX. We in fact often recommend that when one has this DX they at the least have a consult with a gyn/onc who are the precancer and cancer experts. These doctors also are best to perform this surgeryas they are familiar with it and also know the needed procedures to do should cancer be present.......



I agree. Just make sure to get more opinions. If you were older and had had children, I would say: "Just get a gyn/oncologist and get it all out, destroy the threat of cancer."

A regular gyn is fine if there is no cancer found.
I prefer the gyn/oncologist for this diagnosis because you and they are prepared for cancer if they find it. Many times, they would do things differently than the ob/gyn.

You need an expert to do the actual surgery if you decide to do so.
  #8  
Unread 09-25-2011, 12:47 AM
Re: Complex HP with atypia. Hyster or not?

When you see your doctors, ask them for a timetable of how long they think it would be safe for you to wait before you have a hysterectomy. I'm sure a lot of it will depend on whether the Megace is working.

You might have to make some hard choices and rearrange the order of your plans. If you really want a biological child, you might have to do it sooner rather than later. It could mean putting your education and your career on hold for awhile. One option some women have pursued is harvesting eggs before their hyster for a possible surrogate pregnancy later. That's something to discuss with your doctors.

I'm sorry you've been placed in this position. It sounds like you had your life mapped out to some degree. Now you might be forced to take a detour.

Good luck with everything. Let us know how you're doing.
  #9  
Unread 09-25-2011, 09:40 AM
Re: Complex HP with atypia. Hyster or not?

  Quote:
Originally Posted by CarolMcD View Post
I thought you would find out in 10 days?

I know what doctors say. How did you get hyperplasia? Did your doctors have an idea?
In 10 days (now less) I finish drinking the Megace. In about a month the doctor will do a D&C and eventually I will know if it has worked. I really don't know how I got the hyperplasia. I do know that all through my life my periods have been painful and long (almost 2 weeks). Starting this year, around mid January I started bleeding non-stop and the period seemed like it never ended. I was on my period like 2 months!! I never like going to doctors but thought something was not normal. I went to a ob/gyn and he said this was an emergency and that he had to do the D&C. I never thought that these results would've been the problem. The results were sent to 3 different pathologists (because of my young age they were not sure), but yes everyone of them concluded that it was complex hyperplasia with atypia. Doctors say that these factors can contribute to Hyperplasia: PCOS, obesity...which I have.
  #10  
Unread 09-25-2011, 09:50 AM
Re: Complex HP with atypia. Hyster or not?

  Quote:
Originally Posted by iowacatlover View Post
When you see your doctors, ask them for a timetable of how long they think it would be safe for you to wait before you have a hysterectomy. I'm sure a lot of it will depend on whether the Megace is working.

You might have to make some hard choices and rearrange the order of your plans. If you really want a biological child, you might have to do it sooner rather than later. It could mean putting your education and your career on hold for awhile. One option some women have pursued is harvesting eggs before their hyster for a possible surrogate pregnancy later. That's something to discuss with your doctors.

I'm sorry you've been placed in this position. It sounds like you had your life mapped out to some degree. Now you might be forced to take a detour.

Good luck with everything. Let us know how you're doing.
Thank you for your answer. Yes, I will ask for a timetable and I do agree; it will depend on Megace. I am very much thinking of the detour but it has me on so much stress! Thank you for mentioning options as of to harvesting eggs, maybe it can be a great option. Will have to do the research.
Thanks!!!
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