Young and Sadden Need someone to talk to.

Hello.

I'm a 34 year old girl who just bee diagnosed with a less than 50% invasion 0.3cm myometrial trumor in my uterus.

 

They told me I should do a hysterectomy asap.

 

(Well actually they been pushing that option since I walked in complaining about extreme bleeding I had, (Which was fixed with medication I'm taking now.) But then they had me do a DNC and I guess found traces, then a MRI which discovered the tumor.))

 

I don't have any children yet so this was devastating.

They said they don't normally don't offer fertility options for such cases but because I'm young there considering looking giving me fertility options.

 

I been under such stress over this.

 

I asked was there any way I can attempt maintenance and/or curing without surgery, but I received a "Yeah we had cases that refused but we don't have any data on how they turned out."

 

Is there anyone who didn't take the surgery route at this stage? Can you share your experience?

 

I need someone who can at least be a talking point in all this. Nobody I know had this and I feel alone.

 

 

 

 

Comments

  • Fridays Child
    Fridays Child Member Posts: 277 Member
    edited March 2021 #2
    So sorry

    Rose, I'm so sorry to hear this.  Yes, you are very young.  I was much older than you and fertility was not a question for me, but I have heard of women who had their eggs harvested for possible surrogate use, and women who were early stage who were allowed to try to become pregnant before having to have the hysterectomy.  A lot depends on your specific condition.  You may want to find a doctor who has experience in delaying treatment to attempt pregnancy, who can discuss the options and associated risks with you.

    My very best wishes to you for a successful outcome!

  • Forherself
    Forherself Member Posts: 962 Member
    edited March 2021 #3
    Welcome RoseAmberArts

    I am sorry to hear of your diagnosis.  This is a good place to talk about your emotions.  There are some things you can learn about that will help your decision.  I had endometriosis so never got pregnant.  I can relate to your disappointment about the possibility of not having children.  There are types of endometrial cancer.  Endometrioid cancer has a higher survival rate, so it's important that you learn what type of endometrial cancer you have.   There are articles about fertility saving surgery for endometrioid type cancer and I would think your gynecological oncologist would have some information on that.  If you have not seen that specialist yet, you will.  And you can get a second opinion about fertility saving surgery and treatment.  Do feel free to ask questions.  

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    edited March 2021 #4
    There are Gynecological Oncologists who specialize

    in fertility sparing treatment, mainly at the large NCCN treatment centers. I don't know where you live, but you might try to locate them. Sloan Kettering, MDA in Houston, Mayo, among others. I would call the closest NCCN hospitals and ask for whom they would recommend. Don't give up, there might be treatment for you. Sometimes it is just getting to the right doctors. I know people hate to travel to get care, but if you have to,  the medical centers make it very easy for you to get the treatment you need. After my gyne and the 1st GO I went to botched my treatment, I went to Mayo in Rochester, 6 hours away. I continue to get my follow up treatment there even though it seems quite ridiculous to go that far for an appointment, blood work, etc. It is very comforting to me to go there because I know I am getting the best care I can, they have the cutting edge treatments and make it so easy for people who travel to get to them. I am sure other centers do the same.  Please get a 2nd opinion with experts that do fertility sparing treatment as a matter of course, rather than an after thought. After you have exhausted all efforts and cannot preserve your fertility, at least you will know you did everything and had the best specialists to help you. You can get your 2nd opinion from these high volume centers and they will coordinate your treatment locally, if you are not located close by. 

    xxoo

    Denise

  • Lusafag
    Lusafag Member Posts: 21
    edited June 2021 #5
    Don't worry

    Yes,surgery probably is needed.

    But sometimes they do chemo before surgery if the disease has spread.

    I would advise,go ahead.

    Life is at stake and is more important.

    All children are ours,one can always adopt,and be a parent.

    But one needs life for it.

    Cancers are progressive.

    They need to be stopped first.

    I can understand fully your pain Sis,but still,go ahead with medical advice,pls

  • Lusafag
    Lusafag Member Posts: 21
    edited June 2021 #6
    What was your pathological stage

    Ladies,

    My stage is T2.

    Tumour invading myometrium,and cervical Stroma. If someone can guide here,what was their,and what treatment did they received apart from total or segmental,partial hysterectomies,it may help me,and my doctors too,through me.

    I am in an underdeveloped country,where treatments are available,but you need huge finances,which I don't have.

    I have to rely on public hospitals,where even doctors need to be convinced upon following international practices instead of doing local experiments.

    I happen to be a medical doctor myself,but have been pro poor people,never did private practice,nor my doctor husband and we studied,educated,helped people and patients,but didn't became rich at their cost.

    So we have to dig in info ourself,to avoid deliberate negligence.

    Any tips from the developed world will help,and I can quote it to our doctors.

    Hope every one understand our dilemma.

    Doctors and maltreated.