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Thread: Uterine Cancer Diagnosis - 37 Yr Old Female, still wanting to have kids...what to do?

  1. #11
    Meghan, thank you so much for your post! I am new to this forum and just posted a thread before I saw this one looking for pregnancy success stories after Megace...you give me hope.

  2. #12
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    Quote Originally Posted by photohme View Post
    Hello ChillyChin,

    I feel like your wife and I are walking down very similar paths right now. Your statement about the double whammy feels very accurate. We started the year with a feeling of excite and joy because we were planning to start our family. Now, we feel overwhelmed and sad because those hopes are becoming very unlikely. I am 37 and was diagnosed with Uterus cancer 3 weeks ago while my husband and I were exploring our fertility options.
    I met with my oncologist this week who was very kind. His first treatment recommendation is a hysterectomy, but with the knowledge that we were perusing fertility, he fells we were candidates for hormonal treatment using Megace. His concern is the Megace treatment usually takes a year and because of my age, the chance of fertility decreases each year. I am meeting with my fertility specialist again this next week to discuss my odds of a successful pregnancy if we pursue the hormonal treatment We will then decide if we will choose a hysterectomy or Megace. We were already working though other complications with fertility before the cancer was found, so we will see how this adds to the mix! The other option he suggested is working with a fertility oncologist who can remove eggs prior to a hysterectomy for surrogacy later.
    I would love to hear updates if you have them!
    @photohme

    I apologize for the late reply, as for some reason I was not notified that there were new posts to this thread. I hope this post reaches you in time and helps in some way.

    Im very sorry to hear your sharing a similar experience. We had very similar plans such as yourself, where we were just starting to plan for a family. This led to my wifes initial visit to her OBGYN, one thing led to another and unfortunately now we are here.

    My wifes diagnosis was given just before Christmas, so its been about 2 months since her initial diagnosis and it has not gotten any easier emotionally. Just last night I went upstairs to let her know dinner was ready and found her crying...I can totally understand what you and your other half may be going through. I have my dark moments as well where I wonder why we didnt start earlier, but I do digress.

    Would you know what grade/stage you are for your cancer?

    Our oncologist does not exactly have a very good bedside manner. He could definitely be better, but he could also be worse. I believe due to the rarity of this type of cancer happening in younger women, he has not seen a lot of cases such as my wifes and thus is thrown for a bit of a loop.

    The standard of care from what I have been told by multiple sources is a hysterectomy....I know it feels like a kick in the gut every time this word is used in this situation. The silver lining I guess is that this type of cancer, with this kind of treatment is "very treatable" as I was told. As one of the first thoughts that flashed through my head was my wifes life first and foremost.

    Another silver lining it sounds like for you is that your oncologist was willing to recommend Megace as a treatment option. We met our oncologist 3 times over 3 weeks before he even considered any other options or tests outside of a hysterectomy, but I will get into that in a bit. At the very least you have options, the first few weeks was horrible for my wife and I as we felt we had all our hopes and choices stripped away.

    I was in touch with one other person (she is about 34 right now) that went through the Megace treatment here in Toronto, and she is actually due for her first child this month. She had ovarian as well as endometrial cancer (grade 1 and stage 1 and had one ovary removed). So there are successful cases, although everyone's situation is a bit different.

    You bring up a very good point that I have been thinking about, that I have not discussed with my wife yet regarding fertility and age. Another good point you have brought up is regarding a fertility oncologist - Thus far no one has mentioned this type of specialist to us yet.

    My personal opinion regarding the megace is that your oncologist said it "usually" takes a year. The key word here is usually. In my head I am hearing that there is the possibility that it may work faster for you, or it may take longer (I pray that it works faster). But there is no exact timing, and I assume your stage/grade/location of cancer will all play a factor in how fast the megace works.

    Also if you can pursue the option of megace, with out impacting your overall prognosis it at least provides you some chance of having a child the traditional way.

    There are a lot of odds that this may happen, or that may happen. But there is also the odds of this type of cancer occuring in pre menopausal women - which are incredibly low from what I have read up on but it still happens. Having said that a chance is a chance, and if there is a possibility of fertility without impacting prognosis I say it may be worthwhile exploring. Also so long as you are able to preserve eggs, surrogacy is always an option down the line. Once the decision of a hysterectomy is made, the odds of fertility are gone. And though the odds are that this type of cancer is highly treatable, they are not 100% regardless of treatment option, though they could be better or worse. This is just my personal non professional opinion. At the end of the day, you have to do what you feel is right for yourself, and your family.

    Its a very difficult decision to weigh, and its a very personal one as well. I find I have a hundred things I want to write to you, but find my words coming out in a real mess...

    We had met our oncologist about 1.5 weeks ago to review the results of the MRI.

    The good news is that based on the MRI, it appears that the cancer is NOT growing into her muscle (uterine) lining. The growth appears to be polypoid in nature and is growing into her empty uterine cavity from the fundus. There were no signs of anything else elsewhere.

    At this point, my wife and I are happy to have any other possiblity outside of a hysterectomy, so we are taking this as a small win and are cautiously optimistic.

    So now, we are waiting for our oncologist to set up an appointment with another doctor at Sunnybrook to perform a "hysteroscopy" to try and remove the growth.

    I am guessing that our oncologist is trying to remove as much of the tumor as possible, then may recommend hormonal treatment afterwards, but this is totally a guess.

    Have you met with your fertility oncologist yet?

    Please do let me know how your meetings went with your fertility doctor. I will try and update/respond faster.

    I do thank you for sharing your experience, it helps to talk to others.

  3. #13
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    Quote Originally Posted by surprisedbylife View Post
    It took me a while to find her posts, but specialmagic is one poster to look for. Here is her thread about in-vitro after Megace: https://www.cancerforums.net/threads/40844-Cancer-doesn-t-mean-life-is-over-I-am-an-example-I-fought-cancer-and-I-have-a-baby?highlight=specialmagic She hasn't been active for a while, but if you search for her comments on other threads, you will find links to threads begun by others in sin situations similar to yours.

    Wishing all of you health and happiness!
    surprisedbylife - As always thank you so much for this!

    I tried to rummage through the forums as well, but only found bits and pieces of peoples posts.

  4. #14
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    Quote Originally Posted by MiraclesAreReal View Post
    Hi ChillyChin,

    I feel your pain and shock, and I am hoping for the best for you and your wife. I was reading your posts, and I may have missed it, but have you sought multiple opinions? I am 34 and was diagnosed with endometrial cancer 6 mos ago. It was grade 1, so Megace as a conservative treatment vs a hysterectomy was an option for me. My pathology results were reviewed by 2 different pathologists, and they were not consistent. One said hyperpalsia w/ atypia and the other said endometrial grade 1. So, I sought a 3rd opinion who agreed with the grade 1. The reason I bring this up is that medicine is as much of an art as it is a science, and diagnoses do have a subjective component. I have read in other forums of initial grade 2 diagnoses being downgraded due to second/third opinions. It's something to consider if you have not already because grade 1 to 2 can have a big impact on recommended treatment options.
    Hi MiraclesAreReal

    After our first meeting with our oncologist, my wife and I were on the verge of going to a different hospital to get a different opinon, but after much discussion we stuck with him.

    Initially when my wife was diagnosed, we were both thrown for a loop in disbelief. We obivously wanted more testing, and more confirmation that this is what it is.

    My wife initially had a D&C with her OBGYN at a hospital (McKenzie health). The test samples were submitted to an oncologist at McKenzie health, and the results came back as stage 1, grade 2 endometrial cancer.

    My wifes OBGYN reviewed these results with her, then referred her to an oncologist at Sunnybrook hospital.

    The oncoglogist had his pathologists at Sunnybrook review the test results, and after 2 weeks it was confirmed that it is stage 1, grade 2 - As per FIGO rating - There was some mention of 10-15% in these results, which I assume alludes to how the FIGO rating was arrived at (Grade 1 is less then 5% atypical cells, grade 2 is 5-50%, grade 3 is > 50%).

    So there were at least 2 oncologists from 2 different hospitals that reviewed the results.

    We also urged our oncologist to bring my wifes case to his tumor board. Apparently in hospitals, with more unusual cases the doctors will get together to discuss treatment options. So by going through a tumor board, its like getting a team of specialists to review your case, so they tell us...

    Currently, our oncologist has taken another MRI as there was some evidence from an earlier ultrasound that the cancer growth may be growing into my wifes uterine cavity, and NOT into her muscle lining. The logic was that if the cancer was growing into her uterine muscle lining then it would be a hysterectomy. BUT if the growth was growing outwardly, like a mushroom into her uterine cavity that they could perform a hysteroscopy to remove the growth, and I am guessing go down the road of hormonal treatment afterwards.

    We are now waiting for our oncologist to schedule the next appointment with another specialist to perform the hysteroscopy.

    We figure if we continue down this road we are on right now, we at the very least will have someone else go in to take a look and get some more samples for testing.

    Also, I saw your other thread and will reply in there as well as I am not sure which one is best to reach you.

    I was in touch with one other individual in Toronto, Ontario where she was diagnosed with both ovarian and uterine cancer. Shes currently 34, and is now expecting her first child this month, but will provide more detail in your thread.

  5. #15
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    Quote Originally Posted by photohme View Post
    Hello ChillyChin,

    I feel like your wife and I are walking down very similar paths right now. Your statement about the double whammy feels very accurate. We started the year with a feeling of excite and joy because we were planning to start our family. Now, we feel overwhelmed and sad because those hopes are becoming very unlikely. I am 37 and was diagnosed with Uterus cancer 3 weeks ago while my husband and I were exploring our fertility options.
    I met with my oncologist this week who was very kind. His first treatment recommendation is a hysterectomy, but with the knowledge that we were perusing fertility, he fells we were candidates for hormonal treatment using Megace. His concern is the Megace treatment usually takes a year and because of my age, the chance of fertility decreases each year. I am meeting with my fertility specialist again this next week to discuss my odds of a successful pregnancy if we pursue the hormonal treatment We will then decide if we will choose a hysterectomy or Megace. We were already working though other complications with fertility before the cancer was found, so we will see how this adds to the mix! The other option he suggested is working with a fertility oncologist who can remove eggs prior to a hysterectomy for surrogacy later.
    I would love to hear updates if you have them!
    @photohme

    I apologize for the late reply, as for some reason I was not notified that there were new posts to this thread. I hope this post reaches you in time and helps in some way.

    Im very sorry to hear your sharing a similar experience. We had very similar plans such as yourself, where we were just starting to plan for a family. This led to my wifes initial visit to her OBGYN, one thing led to another and unfortunately now we are here.

    My wifes diagnosis was given just before Christmas, so its been about 2 months since her initial diagnosis and it has not gotten any easier emotionally. Just last night I went upstairs to let her know dinner was ready and found her crying...I can totally understand what you and your other half may be going through. I have my dark moments as well where I wonder why we didnt start earlier, but I do digress.

    Would you know what grade/stage you are for your cancer?

    Our oncologist does not exactly have a very good bedside manner. He could definitely be better, but he could also be worse. I believe due to the rarity of this type of cancer happening in younger women, he has not seen a lot of cases such as my wifes and thus is thrown for a bit of a loop.

    The standard of care from what I have been told by multiple sources is a hysterectomy....I know it feels like a kick in the gut every time this word is used in this situation. The silver lining I guess is that this type of cancer, with this kind of treatment is "very treatable" as I was told. As one of the first thoughts that flashed through my head was my wifes life first and foremost.

    Another silver lining it sounds like for you is that your oncologist was willing to recommend Megace as a treatment option. We met our oncologist 3 times over 3 weeks before he even considered any other options or tests outside of a hysterectomy, but I will get into that in a bit. At the very least you have options, the first few weeks was horrible for my wife and I as we felt we had all our hopes and choices stripped away.

    Though I have heard of megace being a very tough experience, bear that in mind.

    I was in touch with one other person (she is about 34 right now) that went through the Megace treatment here in Toronto, and she is actually due for her first child this month. She had ovarian as well as endometrial cancer (grade 1 and stage 1 and had one ovary removed). So there are successful cases, although everyone's situation is a bit different.

    You bring up a very good point that I have been thinking about, that I have not discussed with my wife yet regarding fertility and age. Another good point you have brought up is regarding a fertility oncologist - Thus far no one has mentioned this type of specialist to us yet.

    My personal opinion regarding the megace is that your oncologist said it "usually" takes a year. The key word here is usually. In my head I am hearing that there is the possibility that it may work faster for you, or it may take longer (I pray that it works faster). But there is no exact timing, and I assume your stage/grade/location of cancer will all play a factor in how fast the megace works.

    Also if you can pursue the option of megace, with out impacting your overall prognosis it at least provides you some chance of having a child the traditional way.

    There are a lot of odds that this may happen, or that may happen. But there is also the odds of this type of cancer occuring in pre menopausal women - which are incredibly low from what I have read up on but it still happens. Having said that a chance is a chance, and if there is a possibility of fertility without impacting prognosis I say it may be worthwhile exploring. Once the decision of a hysterectomy is made, the odds of fertility are gone. And though the odds are that this type of cancer is highly treatable, they are not 100% regardless of treatment option, though they could be better or worse. This is just my personal non professional opinion. At the end of the day, you have to do what you feel is right for yourself, and your family.

    Its a very difficult decision to weigh, and its a very personal one as well. I find I have a hundred things I want to write to you, but find my words coming out in a real mess...

    We had met our oncologist about 1.5 weeks ago to review the results of the MRI.

    The good news is that based on the MRI, it appears that the cancer is NOT growing into her muscle (uterine) lining. The growth appears to be polypoid in nature and is growing into her empty uterine cavity from the fundus. There were no signs of anything else elsewhere.

    At this point, my wife and I are happy to have any other possiblity outside of a hysterectomy, so we are taking this as a small win and are cautiously optimistic.

    So now, we are waiting for our oncologist to set up an appointment with another doctor at Sunnybrook to perform a "hysteroscopy" to try and remove the growth.

    I am guessing that our oncologist is trying to remove as much of the tumor as possible, then may recommend hormonal treatment afterwards, but this is totally a guess.

    Have you met with your fertility oncologist yet?

    Please do let me know how your meetings went with your fertility doctor. I will try and update/respond faster.

    I do thank you for sharing your experience, it helps to talk to others.

 

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