Feeling paralyzed... new member

PurpGal21
PurpGal21 Member Posts: 5 Member
in Uterine/Endometrial Cancer #1

Hello All! 

I'm a new member. I was diagnosed with "stage Ia" in Oct. 2016 but opted for preogesterone treatment to try to preserve fertility. Didn't work... I had a D&C in June 2017 and there is myometrial superficial invasion, FIGO 2. I'm so scared. Can't function. Pending hysterectomy and staging.  I don't even know what to ask you all; it seems like my journey hasn't even started. Was anyone in a similar situation? 

Thanks! Many blessings. :-)

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #2
    PurpGal21, First of all...

    PurpGal21, First of all... welcome to our board. I'm glad you found us!  Sorry you had to though.

    Normally, staging isn't completed until a hysterectomy is done. Not sure how they were able to tell you that. Did you get the results from your D&C?  If yes, what kind of cancer do you have? While this is a very scary time, you will get through it. Take it one step at a time. Just hearing the C word sends us into full on panic.  Please consider getting a mild anti-anxiety med - I used Lorazepam and it really helped during the early days. 

    I was also stage 1A with a high grade cancer. I went through chemo and radiation 1.5 years ago. Life is back to almost normal. Most call it our new normal. You will get through this too. We can all relate to what you are going through.

    Please come back and let us know how you are doing. Ask anything - we will be here to help you along the way.

    Love and Hugs,

    Cindi

  • PurpGal21
    PurpGal21 Member Posts: 5 Member
    #3
    Cindi,

    Cindi,

    Thanks for your reply. Well my first D&C in Oct. 2016 was endometrial carcinoma, grade 1-2. MRI/CT of pelvis/abdomen were clear. So my doctor started me on Megace 80mg/day. Second D&C in Dec. 2016 - endometrial carcinoma grade 1-2 with some normal tissue and partial response to Megace. My Dr. took me off Megace and put in an IUD for 6 months. MRI pelvis/abdomen clear in March 2017. Last D&C in June 2017-endometrial carcinoma grade 2 with superficial myometrium invasion. So now, I'm pending a hysterectomy and staging (hopefully within a month). And I'm just so worried that it'll keep getting worse till then.... chances to keep my eggs appear to be very low. :-( 

     

     

  • Rebecca75
    Rebecca75 Member Posts: 5
    edited July 2017 #4
    PurpGal21

    First, I am so sorry about the diagnosis.

    I know it is terrifying, but I was diagnosed with endometrial cancer stage 3B, and that was over 3 years ago -- radical hysterctomy, chemo, radiation.  Are you having robotic surgery?  I did and was actually out to eat for Thanksgiving with my family 4 days later.  It's not as horrible as you  might fear.  You can do this.  You'll be a bit tired after th operation, and you will get staging.  As far as the eggs, I hope things work out for you.  One step at a time.  First just get healthy and remember to breathe from the diaphram!  After, you will work on other things.  You can do this.  

  • oldbeauty
    oldbeauty Member Posts: 379 Member
    #5
    Stay Strong, Be Informed!

    Hello PurpGal.  I am sorry that you received this diagnosis, especially since you appear to be young--still in childbearing years.  It must be very difficult for you to consider your options while grieving over the possible loss of fertility.  You say your diagnosis is endometrial carcinoma.  Do you mean endometrial Adenocarcinoma?  If so, you may not know that, of the three types of endometrial cancer, adenocarcinoma is less aggressive than the other two, higher grade varieties.  Your diagnosis is similar to mine perhaps.  Stage IC, Grade 2, diagnosed 12 years ago.  What concerns me from your post is that it's not clear whether you are consulting with a gynecological oncologist, or simply your gynecologist.  If the latter, you really should consider seeking a referral to a gynecological oncologist.  That is a specialized surgeon and the type of specialist you want to do your hysterectomy and the type of specialist you want to oversee your post-surgical care and treatment.  It also is unclear whether your doctor tried progesterone having first sent your tissue out to be tested for its estrogen/progesterone positive status.  If the tissue was not progesterone positive, it's not surprising that you experienced no benefit.  Myself, I had a 5-year remission with progesterone.  Mainly, though, the message is to marshall your inner resources and gather yourself to fight the disease and be an advocate for yourself.  Best wishes.  Oldbeauty

  • henhill
    henhill Member Posts: 123
    edited July 2017 #6
    Purpgal

    You are far from alone.  I;d bet every one of us had that panicky, stunned senseless time after hearing those words.  Its a natural progression.  Once it settles in, though, you will find acceptance and then the courage to fight.  It will come to you.  

    I had it happrn twice, when I first was told and then again after mine came back,  both times I got past it.   A good, positive doctor and medical team is really helpful  They can be your best cheerleaders, and they've seen it all so can answer most every question. If they are not, then maybe look around.  Fill your time finding ways to beat this and get lots of prayers and support from everyone.  Best wishes to you.

     

     

     

     

     

     

     

     

     

     

     

     

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  • PurpGal21
    PurpGal21 Member Posts: 5 Member
    #7
    Thank you all for your

    Thank you all for your encouragement and words of strength! a little bit more about myself... I'm 29. Never knew I had PCOS, don't have kids. I am working with a gyno oncologist but he never tested my tissue for progesterone/estrogen dependence. It is endometriod adenocarcinoma, grade 2. I'm pending laparoscopic robotic assisted surgery in one month. I've never had any blood work for tumor markers, my doctor says they are not needed at this point. Which really scares me. I haven't had a PET scan either; only CT and MRI. I don't know if my ovaries are ok; they've shown up clear in scans and ultrasound but I know that doesn't mean much. I don't know if I should visit an endocrinologist to add to my team because I'm not being treated for PCOS. Just so many questions and so many different answers and scenarios online. I am finding it hard to advocate for myself. My doctor suggested 3 more months of Megace with the IUD but at this point, it feels too risky. My family doesn't know yet.. another huge struggle. So scared to tell them and worry them. Falling apart a bit.... hope you all are staying strong!! 

  • PurpGal21
    PurpGal21 Member Posts: 5 Member
    #8
    Oh, also. I haven't been

    Oh, also. I haven't been tested for Lynch syndrome. And my levels of Progesterone and estrogen have never been tested. Do you all  think this something I should request at this point or just try to get through the surgery first? I'm scared my gyno oncologist isnt being too aggressive. But maybe that's just because I want answers and results now. The waiting game is a hard one. 

  • oldbeauty
    oldbeauty Member Posts: 379 Member
    edited July 2017 #9
    Hang in there!

    I have read that PCOS is a risk factor for endometrial cancer.  So sorry.  Yes, I guess it does not matter whether your ovaries are now clear, removing the uterus is a given.  Please understand that surgery is THE frontline treatment for uterine cancer.  The chemo/radiation that may follow depends on the pathology results from your surgery. Others can weigh in on the tissue testing but it seems odd that you were started on the Megace without assessing whether your cancer cells were receptor positive for progesterone.  Still, success with hormone therapy is iffy.  There is science to back up that it can be effective, it was for me.  But there's no test to determine in advance if it will work and science indicates that after awhile the receptor status wears down and the treatment stops working.  I would say you have time to make decisions.  Endometrial adenocarcinoma is the least aggressive (though don't for a minute think it is not serious).  I've lived with it for 12 years and am in my second recurrence (although I was declared "cured" after surgery and radiation i 2005).  Don't feel you have to have surgery tomorrow.  Take the time to find the oncologist/surgeon that you feel is right for you.  Take time to get a second opinion from another oncologist/surgeon.  If you have a good employer health plan, find out if your benefits include a second opinion consultation with a recognized cancer center like MD Anderson in Houston or Moffitt in central Florida or Dana Farber in Boston or Memorial Sloan Kettering in NYC or Fox Chase in Philadelphia (these are just the ones I know about).  Find out from your surgeon what s/he plans to do about so-called "sentinel node" collection.  This is when they go up the chain of lymph nodes from the surgery site and remove lymph nodes for sampling looking for spread of the cancer.  This is important.  People will warn you about reading too much on the internet bc it can be scary.  That's true, but mainly bc there is not a full-court press on research about uternine cancer.  It is studied but it is a relatively rare disease and, typically, it strikes much older women and then sometimes they have other ailments and sometimes the symptoms are ignored until the disease has spread widely.  In other words, my reading suggests that research is lacking bc there isn't enough of a population that is healthy enough to survive for five years hence the research dollars go elsewhere.  But it is true you are a statistic of one and I have beat the odds for 12 years already.  So, try to manage your fear and get some info that will help you make the right decisions.  Going for a second opinion before surgery is probably the best thing you can do for yourself at this point.  Best wishes as you negotiate this difficult time.  Oldbeauty

  • MAbound
    MAbound Member Posts: 1,175 Member
    #10
    Endocrinologist

    By all means go to an endocrinologist for your untreated PCOS. You really want your blood sugars and other symptoms under control as you go through treatment for this cancer as they encourage tumor cell growth and put you at higher risk for difficulties if you end up going through chemo. Odds are you are going to be put on Metformin for your blood sugar and that takes awhile before it takes effect, so getting on it now is better than waiting till later. There are many benefits to taking Metformin for this cancer as you will see as you earlier read posts about it here. 

    Most of the testing for staging, PR & ER sensitivity, sensitivity to various treatments, etc. happens after surgery when they have the uterus, lymph nodes, and other tissue for such testing. Definitely push for sentinal lymph node testing if your doctor is not considering it. Getting the staging exactly right is everything to determining your treatment plan. Don't be shy about getting 2nd and 3rd opinions when you are concerned about anything. It's in your own best interest to be proactive about your care and not passive. If there's one thing we can all attest to it's that no one doctor knows it all, so it really helps to seek extra opinions if your gut tells you need them.

    Your doctor may want to send you to a geneticist to test for Lynch Syndrome and other mutations. Your insurance is probably going to be hinky about paying for it, but it's very helpful for guiding future treatment and worth paying for out of pocket if need be.

    I second OldBeauty that it seems odd that your dr.  put you on megace without knowing if you'd get any benefit from it, but maybe that has to do with how young you are compared to us. I tested 90% positive for PR receptors although only weak to moderatly compared to 90% strongly positive ER receptors. Metformin has as one of it's cancer benefits strengthening or reactivating PR reception to progesterone, so you can see what I mean about getting on Metformin for your PCOS. 

    I know the waiting for surgery and staging is hard, but use the time to learn everything you can and get your PCOS treated. There's a lot of good information in the posts here that will point you in directions to go and so reading, reading, reading is a good place to start.

    Good luck and God Bless!

  • Kathy G.
    Kathy G. Member Posts: 245 Member
    #11
    Welcome!

    Welcome!

    You have come to the right place for support & accurate info. We've all been where you are, and have never forgotten the fear we had when hearing our diagnosis.

    You have already received a ton of great advice! I agree that at least a second opinion is in order. I would do that. I was stage & grade 1...same type of cancer you have. Slow growing...easier to treat. I was only required to have the surgery & follow up visits. I am 5 years out next January.

    The surgery was not a big deal. I would say the mental & emotional aspect of the diagnosis was harder than the physical, and I was 55. Hopefully your recovery will be a piece of cake compared to what you fear.

    Best wishes. Get that 2nd opinion & stay in touch on this board. It kept me sane...well somewhat...lol!

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