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

  1. #1
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    Uterine Cancer Diagnosis - 37 Yr Old Female, still wanting to have kids...what to do?

    Hello

    Im not quite sure how to put together words at the moment as my wife and I are quite devastated.

    My wife recently received news that she has uterine cancer....

    Back around Jan 2017, she noted that she was having "spotty" periods. She does have a history of irregular menstruation. This prompted her to go and see her OBGYN (gynecologist), which led her to have an ultrasound around May 2017. It was noted in her ultrasound that she has polyps, and then she was given the option to remove them or not through a D&C. These tests took place over a number of months.

    Since there was no signs that anything was too urgent, and given scheduling conflicts she had her D&C in Dec 2017. Her gynecologist noted that her uterine lining was "thick" right after the procedure. A few days later she gets a call from the doctors saying to go back in to discuss the results. She was informed that the results were that it is cancerous....and its stage 2.

    She was then referred to a hospital (Sunnybrook in Toronto, Canada) and we are waiting to see a specialist.

    My wife and I just got married last year in Sept 2016, and were just starting to plan for a family. We are both 37 years old and are East Asian (Chinese).

    My wife is of the mentality to wait to see what the specialist says, to confirm everything and then proceed from there though I can tell she is beyond words devastated. I am more of a researcher and prefer to have some knowledge going in to a situation which led me here.

    The silver lining that I can see so far is that it sounds like if this is caught early enough and treated then survival rates are quite high. Though generally it sounds like a hysterectomy will be done, which would remove any chance of us having children the traditional way.

    Im doing as much reading and learning as I can (Im a guy and honestly not familiar with the female reproductive system at all), but the odds of someone with my wifes demographic seems ridiculously low. Of course I do understand sometimes things "just happen".

    Most of the reading I have done is regarding women that are post menopausal or past child bearing years.

    Another thing that sort of annoys me is the fact that there was zero signs that there were any issues whatsoever. My wife is pretty diligent with her health, and has had numerous ultrasounds done through out the years dating back to 2011. All of her test results noted that her endometrial lining was "normal thickness" and generally ranged from 7.7mm to 10mm combined thickness which never raised any alarm bells.

    I was wondering is there any chance that the D&C may be incorrect? Maybe not enough tissue samples? Maybe the tissue samples came from one spot, but is not reflective of the whole uterus?

    We feel like we are getting hit with a double whammy. As I am extremely concerned for my wifes life first and foremost, but the second kick in the crotch is the idea of not being able to experience a traditional pregnancy which I know is really eating at my wifes mental state right now (shes always wanted to have kids).

    If anyone else has experience, insight or anything at all I would greatly appreciate anything.

    Thank you

  2. #2
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    Yes there is a lot to think about, and you are good to come here.

    At this point, there are a lot of things that have to wait until you see the specialist. Yes, some times the D&C does get all the bad stuff, however I don't know if it would be possible to know for certain without further surgery. This is a question to ask the medical team. Hysterectomy is the most common treatment, and final determination of the cancer grade, stage, etc. is determined by the pathologist who examines the tissues removed, and those will determine if what (if any) follow-up treatment is called for. Right now your wife essentially has an estimated cancer grade based on the D&C.

    When you have your consultation(s) talk about your family goals. Is it possible to save your wife's eggs and use a gestational surrogate so that the two of you can have a child who is biologically yours? Would you and your wife like to have some counseling specific to adjusting to the possibility of a child-free future?

    Uterine cancer, like most cancers, is a disease of advancing age - all of those cells copying themselves for years and years until something miss-copies and trouble ensues. So yes, most of what you will find in the literature is from patients older than your wife. You can help by making certain that the advice she is given is indeed for someone with her profile. And yes, often there really aren't huge symptoms that give a lot of warning. She is fortunate that this was caught while treatable.

    I totally get the research thing, it is how I cope with new situations myself. When I was diagnosed, I was finishing up a grad program so I had access to many research publications, and my husband works in biotech and could get me anything that I couldn't access on my own. I crunched through multiple journal articles every day for about eight weeks. The articles helped me understand the logic behind the recommendations for my follow-up treatment, and I was better able to accept those recommendations because of all of my reading. But boy I could have saved myself a lot of energy if I'd just listened in the first place. There are increasingly detailed nomograms that will help your wife's team determine the best plan after surgery. The one that I found most useful for my situation was in "Nomograms for Prediction of Outcome With or Without Adjuvant Radiation Therapy for Patients With Endometrial Cancer: A Pooled Analysis of PORTEC-1 and PORTEC-2 Trials" by Carien L. Creutzberg, et. al., published in 2015 in the International Journal of Radiation Oncology. You can find a link at https://www.ncbi.nlm.nih.gov/pubmed/25680597 Unfortunately, it isn't free access yet, but if you want a copy and don't have a librarian who can get it for you, send me a Personal Message with your email address, and I can get one to you.

    Wishing you and your wife all the very best!
    Intermediate Risk Endometriod Cancer: Stage 1a Grade 2 some lymphvascular space invasion, DaVinci surgery December 2014, Brachytherapy February 2015

  3. #3
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    Possibly late for you and your wife, but here is a link to a fairly recent article that covers issues related to preservation of fertility: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5265623/

    Sending good thoughts your way.
    Intermediate Risk Endometriod Cancer: Stage 1a Grade 2 some lymphvascular space invasion, DaVinci surgery December 2014, Brachytherapy February 2015

  4. #4
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    Quote Originally Posted by surprisedbylife View Post
    Possibly late for you and your wife, but here is a link to a fairly recent article that covers issues related to preservation of fertility: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5265623/

    Sending good thoughts your way.
    Thank you so much for your thoughtful reply, and excellent points for my wife and I to consider.

    Its been incredibly difficult to find anyone to talk to about this, as it does seem a number of people we have tried to speak to in local support groups are much older....

    We saw the specialist a total of two times now, and he confirmed that it is stage 1, grade 2 uterine cancer (endometriod). He again said that the standard of care is a hysterectomy.......

    He asked us if we have any fertility concerns, and we emphasized the both times we saw him that we just got married and were definitely wanting to start a family.

    He then said he would bring this to his tumor ward and discuss with them and we need to see him again next week.

    Canadian health care system......

    I digress though, so I guess a silver lining for us right now is that it is actually stage 1, and not stage 2 as we were originally told (or misheard?) though it is grade 2.

    -I was wondering if anyone would know, are cancers usually treated by the stage or the grade as the driver?

    One of the reasons why I ask is because we are pretty sure we were told its STAGE 2, not GRADE 2. Though not sure if this makes a huge difference in the grander scheme of things. Just curious, as not sure if either one has priority?

    My second reason for asking is because through my research I have heard of females below the age of 45 that wanted to preserve fertility that hormone therapy with a strong dose of progesterone can at times reverse or at least stop the progression of uterine cancer long enough to allow for child bearing. I actually was able to find ONE person locally that was treated with this method, though she was a stage 1, grade 1 ovarian and uterine cancer.

    We do understand that # 1 priority is her life, but very close behind at # 2 is that she has always had a lot of hope of becoming a mother, and like wise for myself a father.

    With the route of a hysterectomy it obviously removes all chances of traditional child bearing, and really isnt our first choice. Although we are coming to terms that there is a possibility of this being the ONLY choice.

    -Has anyone heard of a stage 1, grade 2 uterine cancer being treated with hormone therapy?

    I have found literature talking about how stage 1 uterine cancer can be treated like this, but they seem to leave out the GRADE.

    We are literally just wanting a "chance" to be able to save her uterus.

    -Another question we have is how "fast" or "aggressive" is this type of cancer? As if we want to save her eggs and preserve her fertility and go down the route of a surrogate, we would need time to harvest her eggs. I heard its a few cycles? So we are also concerned at the "timing" of all this.

    I hope this post makes sense, as my thoughts are all over the place at the moment, and I do greatly appreciate the replies.

  5. #5
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    Stage has to do with where the cancer is located in the reproductive system. This usually is not fully determined until surgery. However there may be some sophisticated scanning systems that can help determine.

    Grade has to do with how cancerous (for lack of a better term) the tumor is. Tumors that are mostly cells that look normal would be a lower grade than tumors that are mostly cells that look like cancer cells.

    Type has to do with the specific kind of cancer. The most common is Endometriod and is relatively slow growing. Other types are more aggressive.

    There also are specific genetic markers on the cancer cells that indicate whether those cells are likely to respond to specific chemotherapeutic agents, or to be more/less aggressive, etc.

    It is pretty common for patients to be confused about the Stage/Grade thing. I was myself, and pretty much freaked out when my team told me something was a 2 when I had thought it was a 1 and I didn't yet know that Stage and Grade are different things.

    Here is one of my go-to pages: https://www.cancer.gov/types/uterine

    I tried Scholar.Google.com for hormone therapy grade 2 uterine cancer, but don't just find links to articles about grade 1. Here's what came up in PubMed: https://www.ncbi.nlm.nih.gov/pubmed/...uterine+cancer

    Your team's tumor board may have better search strategies than I do, and also should have access to the state-of-current-rumor. I keep thinking that I read information relative to your situation buried further down in the threads here, but haven't been able to hit on it recently. If you keep scrolling and reading, perhaps you will find the thread I've missed.
    Intermediate Risk Endometriod Cancer: Stage 1a Grade 2 some lymphvascular space invasion, DaVinci surgery December 2014, Brachytherapy February 2015

  6. #6
    Hello! I was diagnosed with edometrial adenocarcinoma 2 and half years ago. It was a few day befor my 32nd birthday. My husband and I had been trying to get pregnant and Ji was getting a prenatal check up with my ob/gyn. We had been married 12 years and finally we were deaperate to have a baby. They scanned me and thats when by the lining looked a bit thick and so my roller coaster began. I was totally crushed, we didnt think that we would ever have a baby but we kept hope and faith. I started on megace right away. 2 years we did megace and endometrial bioosies every 3 months. Once I had the clear our fertility doctor started the process of ivf. We harvested and had success. I WAS PREGNANT. I just had a healthy baby boy 2 weeks ago and he is amazing. Keep up th hope and as long as the megace holds the cancer back dont give up because having a baby is amazing. It was very hard at times and I thought i would never get here, but I am proof that miracles happen.
    Last edited by [email protected]; 02-10-2018 at 02:57 PM. Reason: Enteted before i finished

  7. #7
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    Quote Originally Posted by [email protected] View Post
    Hello! I was diagnosed with edometrial adenocarcinoma 2 and half years ago. It was a few day befor my 32nd birthday. My husband and I had been trying to get pregnant and Ji was getting a prenatal check up with my ob/gyn. We had been married 12 years and finally we were deaperate to have a baby. They scanned me and thats when by the lining looked a bit thick and so my roller coaster began. I was totally crushed, we didnt think that we would ever have a baby but we kept hope and faith. I started on megace right away. 2 years we did megace and endometrial bioosies every 3 months. Once I had the clear our fertility doctor started the process of ivf. We harvested and had success. I WAS PREGNANT. I just had a healthy baby boy 2 weeks ago and he is amazing. Keep up th hope and as long as the megace holds the cancer back dont give up because having a baby is amazing. It was very hard at times and I thought i would never get here, but I am proof that miracles happen.
    Hi there

    Firstly I want to say congratulations on your baby!!

    Secondly thank you so very much for the reply and the passing of hope - I was wanting to update this thread for a while, but just havent been emotionally up to it. Its been a roller coaster, and we have had a lot of difficulty coping with all of this.

    My wife was also diagnosed with endometrial cancer, or as our oncologist said the "garden variety" kind.

    Do you mind if I ask what grade/stage you were diagnosed at?

    What was your dosage of megace at in terms of mg?

    As an update, we currently have a slight sliver of hope from our last appointment with our oncologist around the end of January. Our oncologist said that he had met with his tumor board (meeting amongst his team members I believe it is) and a plan was discussed. Initially the first few meetings we had with the oncologist was frustrating, as they kept saying the standard of care was a hysterectomy (which is true) but it felt like they were not willing to explore any other possiblity outside of the standard of care. It took a bit of nudging but they finally wanted to do more testing - recommending an MRI and a hysteroscopy.

    Basically they said that there is the possiblity, that given the uterus is a cavity that the cancer was hopefully only growing into the cavity (like a mushroom he said) and is NOT growing into the actual muscle lining. So with the MRI, they would be able to tell whether there was any further growth, or how deep the growth is into the muscle lining. Depending on the results of the MRI, then proceed to a hysteroscopy. This would also allow for a second biopsy, and cleaning out of anything else.

    Currently, we just had the MRI and are going to meet our oncologist this coming Wednesday to review the results. So we are holding our breath for the test results right now.

    From what we understand so far, this sounds like this cancer is largely due to a hormonal imbalance (estrogen dominance). My wife has a history of PCOS, so her OBGYN has put her on 40mg of provera since she was first diagnosed, and my wife has also been supplementing with a vitamin B complex. The B complex is due to the fact that we heard that B6 and B12 can help with estrogen and hormone balancing.

    Our oncologist at Sunnybrook did not prescribe anything, and has proceeded slower then we had hoped. Though I believe he may be a bit thrown off given the unusual nature of my wifes case - being younger and diagnosed with this cancer.

    I have been trying to keep my wife focused on staying as healthy as possible right now, we are both hitting the gym 3-4 times a week and trying to eat at home a lot more. My reasoning for doing this is for one, I want to try to take our minds off of dealing with this. Secondly, I told my wife regardless of whatever happens her body needs to be in good shape to deal with healing. I think its helped as its better then staying at home sulking.

    Again, congratulations on your little miracle

    I hope my wife and I can have similar luck.

    I aim to try and update this thread when I can, so hopefully others in the future if anyone comes across this it may be of some assistance. As really I have found very very little information for my wifes age group and situation.

  8. #8
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    Quote Originally Posted by chillychin View Post
    Hello

    Im not quite sure how to put together words at the moment as my wife and I are quite devastated.

    My wife recently received news that she has uterine cancer....

    Back around Jan 2017, she noted that she was having "spotty" periods. She does have a history of irregular menstruation. This prompted her to go and see her OBGYN (gynecologist), which led her to have an ultrasound around May 2017. It was noted in her ultrasound that she has polyps, and then she was given the option to remove them or not through a D&C. These tests took place over a number of months.

    Since there was no signs that anything was too urgent, and given scheduling conflicts she had her D&C in Dec 2017. Her gynecologist noted that her uterine lining was "thick" right after the procedure. A few days later she gets a call from the doctors saying to go back in to discuss the results. She was informed that the results were that it is cancerous....and its stage 2.

    She was then referred to a hospital (Sunnybrook in Toronto, Canada) and we are waiting to see a specialist.

    My wife and I just got married last year in Sept 2016, and were just starting to plan for a family. We are both 37 years old and are East Asian (Chinese).

    My wife is of the mentality to wait to see what the specialist says, to confirm everything and then proceed from there though I can tell she is beyond words devastated. I am more of a researcher and prefer to have some knowledge going in to a situation which led me here.

    The silver lining that I can see so far is that it sounds like if this is caught early enough and treated then survival rates are quite high. Though generally it sounds like a hysterectomy will be done, which would remove any chance of us having children the traditional way.

    Im doing as much reading and learning as I can (Im a guy and honestly not familiar with the female reproductive system at all), but the odds of someone with my wifes demographic seems ridiculously low. Of course I do understand sometimes things "just happen".

    Most of the reading I have done is regarding women that are post menopausal or past child bearing years.

    Another thing that sort of annoys me is the fact that there was zero signs that there were any issues whatsoever. My wife is pretty diligent with her health, and has had numerous ultrasounds done through out the years dating back to 2011. All of her test results noted that her endometrial lining was "normal thickness" and generally ranged from 7.7mm to 10mm combined thickness which never raised any alarm bells.

    I was wondering is there any chance that the D&C may be incorrect? Maybe not enough tissue samples? Maybe the tissue samples came from one spot, but is not reflective of the whole uterus?

    We feel like we are getting hit with a double whammy. As I am extremely concerned for my wifes life first and foremost, but the second kick in the crotch is the idea of not being able to experience a traditional pregnancy which I know is really eating at my wifes mental state right now (shes always wanted to have kids).

    If anyone else has experience, insight or anything at all I would greatly appreciate anything.

    Thank you
    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!

  9. #9
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    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!
    Intermediate Risk Endometriod Cancer: Stage 1a Grade 2 some lymphvascular space invasion, DaVinci surgery December 2014, Brachytherapy February 2015

  10. #10
    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.

 

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