1 Topic by Lbaker (edited by Lbaker 2013-05-29 11:03:13)

  • Lbaker
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Topic: devastated: UPDATE

Earlier this week I posted that I was finally diagnosed with PCOS and insulin resistance but my doctor was hopeful about still ttc after I take some time to get healthy. Well, I had a D&C last week and went for my post-oo yesterday. Turns out I have atypical complex endometrial hyperplasia, which is precancerous. The typical treatment is a hysterectomy. She said I can take progesterone for three months and biopsy again to see if the hyperplasia is gone. If it is, I would have 6 cycles to ttc before we would have to start the whole process over again. Basically I would just be buying time before a hysterectomy. The other concerning thing is that there is a chance that even with the progesterone I could develop endometrial cancer. There is also a high risk that, if I were to conceive, there is an increased chance of developing uterine cancer during the pregnancy. Part of me thinks I should just go with the hysterectomy if it is recommended by the oncologist, and let dw have our children. The other part is completely crushed that I won't ever be pregnant. Ugh, I feel so numb.

UPDATE: I met with the gynecologic oncologist this morning. She hopes to be able to treat my hyperplasia with hormone therapy. I go tomorrow for an MRI to see how deep the precancerous cells are. If they are just in the endometrium, hormone therapy is an option. If they have spread to the muscle, we will have to take more aggressive action. Also, because there is a 40% chance that I have already developed cancer, the MRI will also be to check for any tumors in my pelvic area. The worst part is that I have to wait 2 weeks to meet with the doctor again and develop a treatment plan. Thank you again for all of your support!

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  • Registered: 2012-08-02
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Re: devastated: UPDATE

So sorry to see your dream get so complicated.  Wishing you the best in health.

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  • Registered: 2013-03-13
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Re: devastated: UPDATE

I'm so sorry...

  • Registered: 2009-04-28
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Re: devastated: UPDATE

Im so sorry you are having to go through this. sad I hope you can find a solution that you can be happy with.

  • Registered: 2010-06-29
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Re: devastated: UPDATE

I am so sorry. I can't imagine being faced with those devastating decisions. Thinking of you.

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  • fisch
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Re: devastated: UPDATE

I would get a second opinion if I were you.

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  • Registered: 2012-04-08
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Re: devastated: UPDATE

Would also get second opinion.

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Re: devastated: UPDATE

Definitely thinking of you and sending positive thoughts your way. I hope you can come to terms with whatever your decision will be.. Good luck.

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Re: devastated: UPDATE

I'm so sorry! Best of luck with your decision!

  • From: Santa Cruz, CA
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Re: devastated: UPDATE

I am so sorry to hear this sad

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  • Registered: 2010-11-05
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Re: devastated: UPDATE

So sorry to hear this. Can't imagine getting news like this. If it were me i'd get a second opinion with such dramatic news/results as this, but that's just me.

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  • anna77
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Re: devastated: UPDATE

I'm so sorry to hear this.  Whatever you do, take some time to really think through your options and definitely seek a second opinion before a hysterectomy.  My heart goes out to you.

Anna 38 (mommy to 3 boys...11, 9 & 2)
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Re: devastated: UPDATE

That sucks. I'm glad you guys have options (like DW carrying) but it still completely and totally sucks to find out that there's a good chance you can't follow the path that you'd had your heart set on. I hope you get some better news with a second opinion or find peace in whatever option is best for your family and your health. *Hugs*

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Re: devastated: UPDATE

I would be heartbroken to say the least. I agree with getting a second opinion. I would have a very hard time making this choice. So I can only imagian how you feel. I hope you get good news from the oncologist. Good luck.

  • aplusa
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Re: devastated: UPDATE

I know you both will think about your options, perhaps seek out another opinion, and hopefully come to a resolution that fills your home and hearts.

I am so sorry you have to take these blows after blows.  It is a lot to take in at one time.  I would certainly take some time to learn more about your condition and treatment options. 

I am so sorry.

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16 Reply by old mama (edited by old mama 2013-05-18 03:11:41)

  • Registered: 2009-06-11
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Re: devastated: UPDATE

I am heartbroken for you. I am so sorry to hear your news. What awful choices you face.

  • Registered: 2012-09-09
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Re: devastated: UPDATE

sad i am so sorry. Can this stuff happen because of pcos? I hope you can get a second opinion and everything turns out good.

  • Registered: 2010-04-28
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Re: devastated: UPDATE

Oh my goodness, I don't even know what to say. I'm sorry. sad

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  • Lbaker
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Re: devastated: UPDATE

Whoknows: the condition is a result of a thickened endometrium, which resulted from my many anovulatory cycles from my pcos.

Thank you all for your responses. I will be seeking a second opinon with a gynecologic oncologist, as well as continuing my quest to get healthy. I know that there is a chance I can beat this, but I will have to do what is best for my health. I took a long walk this afternoon with my little one and realized, in the context of my situation, that the end goal of a pregnancy is a family, and I have many options in front of me. I can still be a kommy without a biological child.

Thank you again.

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  • Lbaker
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Re: devastated: UPDATE

Ugh. Stupid phone. Mommy, not kommy. Lol

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  • yfnr
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Re: devastated: UPDATE

Definitely get a second opinion and have a good talk with the gynecological oncologist. I can't imagine being told I would have to have a hysterectomy before completing my family, however as an oncology nurse of 13 years, endometrial cancer is not something to play with. Hopefully this next doctor will be able to clearly give you all the risks and treatment options. I hope you are surrounded by support and you can lean on those you love in the upcoming weeks.

Jamie
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  • Registered: 2010-08-26
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Re: devastated: UPDATE

I'm sorry to hear this. I agree with fellow posters on getting a second opinion. I wish you peace in whatever decision you make, regarding what's best for you and your family. Prayers are being sent your way.

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Re: devastated: UPDATE

I am sorry, too.  GL with the second opinion & I hope you get good news.

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Re: devastated: UPDATE

I am not very familiar with the endometrial hyperplasia, but I do know that pregnancy does help with other gynecological problems (like endometriosis, for instance), because it balances out the hormones. I would definitely get a second and even a third opinion. Good luck, and you will be in my thoughts!

  • Lbaker
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Re: devastated: UPDATE

updated at the top

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Re: devastated: UPDATE

I hope everything goes well. Keep us posted

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Re: devastated: UPDATE

waiting is so hard - i had cancer back in 1999 & again in 2004 - it is so much hurry up and wait - will be hoping for great reports for you!

  • Registered: 2011-08-23
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Re: devastated: UPDATE

Hi Lbaker,
I was just curious if you had anymore update?  I had some polyps removed as well and then found out the next week that I have Endometrial Cancer, I have met with the Gyn Oncologist and have decided to do 3 months of hormone therapy to see if it clears it so I can finally TTC.  Luckily the caught it early enough! They will then do a D&C and if that comes back clear I can TTC , if not clear than I have to go straight to the hysterectomy.  Fingers crossed it works!   Just wanted to let you know I was thinking of you and hope that all is going well  smile

  • Lbaker
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Re: devastated: UPDATE

Thanks for asking! I do have an update,  and it is pretty positive! I had an mri done, and I have no cancer present anywhere in my pelvic region. The precancerous cells are contained to my endometrial lining and have not invaded the muscle of my uterus. I am also undergoing hormone therapy and will have a biopsy in september to check the cells. I have a year of hormone therapy before I have to move on to a hysterectomy. The hormones are pretty awful. I have serious mood swings (bless dw for dealing with me) and I am always starving, which sucks because I have a lot of weight to lose.

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  • aplusa
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Re: devastated: UPDATE

So glad to hear the mostly positive update!!!! Glad that it is just in the lining.  Sometimes I think my partner deserve a medal just for coming home every night and dealing with me. smile

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Re: devastated: UPDATE

I am so happy to hear that!!!  It is always scary what goes through your head until they confirm everything.  OMGosh those hormones make me moody too!  Our DW's are wonderful for putting up with it! So far thou I have not had the ravenous hunger that they said would come with it, so I am hoping that I just get to skip that part wink I too need to lose weight and am working on that, the oncologist said it's going to be hard with the increased hunger, but luckily I have not had the increase in appetite.  I will have my next d&c in september as well so I will be sending you positive thoughts your way.    big_smile