Just diagnosed

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 withhI have just been diagnosed with endometrial adenocarcinoma grade 1 or 2.   I will start from the beginning.   I have 25 year old twin daughters that were just married last year to their high school sweethearts.   When my girls were only 3 years old, I was diagnosed with Hodgkins Lymphoma stage 2b.   I went through 6 months of chemo and 4 weeks of radiation.  I went into immediate menopause at 33 years old.     I beat it 9 months later and have not looked back since.   My oncologist warned me about being high risk for breast cancer, but never unterine cancer.   I never took hormones because of the high risk of getting breast cancer.   About 2 months ago, I had some dark brown blood in the morning.   I was like, well that's not good, and went on to work as usual.   Two weeks later, I had very thin light pink bleeding for about 6 hours, so I called my former ob/gyn for an appointment.   He scheduled me for both a ultrasound and transvaginal ultrsound.   It showed that my lining was 14 mm with an enlarged uterous.   Then I started bleeding more often and a little heavier, but still not bad.    Three weeks ago I had a D & C where he removed a polyp and other tissue.   Two days later, he called and said that I have endometrial adenocarcinoma grade either 1 or 2.  Since then, I have started having cramping pains in my uterous.   Can anyone tell me if this is normal and does it mean that it has spread or is more likely to have taken over the whole uterous.   Is an enlarged uterous a sign that it is advanced?  He referred me to a gynogological oncologist which I just saw last week.   Now I am scheduled for a total hysterectomy including some lymph nodes on December 8th.   I just went for my preop testing on Monday.    Needless to say, I am mad that I have to face this again, even if it is a totally different type of cancer.   I know that I wont find out the stage until after the surgery, but it is driving me crazy not knowing.   I read stuff online and some of it is so scary.    I saw where grade 1 or 2 is usually low risk, but not knowing the type of cell exactly is making me nuts.   If anyone has any advice, please share.   Can the more aggressive types be a grade 1 or 2?   Help!

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
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    welcome

    Welcome to the club no one wants to belong to.  This is a great place to come.  The ladies here are great at sharing information and giving  support and comfort.  First  don’t spend much time with Dr. Google.  Most of his information is very out dated.  New treatments are coming all the time.  I was diagnosed over 5 years ago with stage IV Serous Papillary Endometrial Andocarcinoma. I have been on treatment most of that time, I have many more good days than bad, and most important, I am still around and leading a pretty normal life. I did not go shopping on Black Friday, but I did cook Thanksgiving dinner for my family..

    take a deep breath you are not alone we will be with you.

    Hugs and prayers,Lou Ann

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,382 Member
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    Welcome.  You will find the

    Welcome.  You will find the people here will be happy to answer whatever questions.

    I agree with Lou Ann, stay away from Dr. Google.  I would also recommend trying to take this a step at a time and wait to see what you are dealing with.  You are working a gynecologic oncologist - which is great.  They will figure out exactly what is going on and make a plan for you.  

    Take a breath.  You are not alone.

  • Anne0803
    Anne0803 Member Posts: 15
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    stinnettknox

    Hi! I was the same way, when I was diagnosed I immediately made some research online. For some reason I never saw this website before/while I'm going through my treatments.

    It does really help with first hand experiences, though the Doctors always say "Each individuals are different, our body reacts differently with the treatments, just listen to your body".

    Here's my story... I hope it helps

    My journey with Endometrial or Uterine Cancer started last year October 2016 at 41 years old.

    I was diagnosed with Grade 3 FIGO stage (pT3a N1 and IIIC1) – Endometroid Carcinoma

    MY SYMPTOMS:

    I noticed the changes in my menstrual cycle probably 2 years ago or so. The symptoms were prolonged and heavy bleeding for 3 weeks I only had 1 week off to rest and my menstruation or bleeding starts again. Light hot flashing at night or even during day time, and my period will start and end with watery, pinkish discharge.... none of which made me think anything was wrong. Though I recall too that I always experience menstrual cramp or dysmenorrhea.  I never consulted a doctor, I thought it was just normal to have cramps. 
    I also feel bloated and gassy most of the time and back pain too.  I feel tired all the time, just woke up and after few hours I always feel that I need to sleep again.  When I bleed, it's like peeing, I need to change my pads almost every 5 or 10 mins, a lot of blood clots too.

    April 2016 – I had my annual check-up and I mentioned to my doctor that I have unusual bleeding.  She recommended that I need to get a “Transvaginal Ultrasound” which I delayed until October (yes, I know my bad).

    September 2016 – My bleeding worsens

    October 05 2016 – I had Transvaginal Ultrasound

    October 06 2016 – I had a call from my provider and I was advised to see a Gynecologist A.S.A.P.  The nurse said that they saw abnormalities from the Ultrasound.

    October 11 2016 -  I had Gynecology visit and took a biopsy sample.  Gynecologist told my she doesn’t like what she see from the sample taken.

    October 14 2016 – I received a call and was told that I have Endometrial Cancer – Grade 3 (it means my cancer is very aggressive) and again I was advised to see an Oncologist A.S.A.P.

    October 21 2016 – I met my Oncologist and he explains everything I need to know and after the visit I had CT Scan (to check if the cancer has not metastasize).  After 2 hours I received a call from my Oncologist and told me the good news that the result was negative, and I can proceed to my surgery.

    October 28 2016 -  I had “Hysterectomy – Bilateral Salpingo-oophorectomy” by Laparoscopic Surgery.  I stayed overnight and was discharged the next day.

    RECOVERY was great.  I was given all meds for pain - I avoided taking Hydrocodone regularly instead I take Tylenol in between because Hydrocodone makes you Constipated and after the surgery you don’t want to get terrible constipation.  (NOTE: I took Magnesium Citrate a day before the surgery to clean my gut.  A friend of mine who had Hysterectomy told me it is better to have a clean gut before surgery) and it really helps.   Also, I was given a stool softener, Senna-Lax and Osmotic Laxative which never worked for me, I took Prune juice and I did the great for me.  As we all know it is very important to pass “GAS” and “Poop” after the surgery.  Sorry it’s TMI but I have to share it =).  It also help that you drink a lot of water, yes I’m an advocate of hydrating yourself.

    I am so thankful my recovery went well…within 2 weeks I don’t need any pain meds anymore.

    November 05, 2016 -  the dreaded news that everyone don’t want to hear….. the cancer stage.

    I was diagnosed with Grade 3 FIGO stage (pT3a N1 and IIIC1) – Endometroid Carcinoma

    After recovering from the surgery, I went through genetic testing which determined if I have Lynch Syndrome – a mutation in a gene that causes colon, ovarian, and endometrial cancer. Praise God it came out “Negative”.

    December 20, 2016 – I started my 1st Chemotherapy treatment. The unimaginable pain started on the 3rd day after treatment.  It was the most painful experience I ever had.  My whole body is in pain, joints were aching.  It lasted for 2 days.  During those days I couldn’t eat.  I tried my best to at least eat a piece of toast with butter, made some smoothies with chocolate drink (I mixed different berries or fruits).  Probably after 6 or 7th day, I’m back to normal appetite.  Oh boy I am soooo hungry.  I wake up in the middle of the night and eat!!!! My hair starts to fall on 2nd week.  I read that it’s better to get rid of hair or entirely shave it. And I DID!  Never regret it.  I wear bald, NO WIG!  Yes I am proud to be bald . (NOTE: I drink prune juice too before and after treatment because chemo drugs make you constipated too). I hardly took my nausea pills.  I am very thankful that I don’t have any other side effects.

    1st treatment – body pain and joint aching 100%

    2nd treatment - body pain and joint aching 75%

    3rd treatment - body pain and joint aching 40%

    4th treatment - body pain and joint aching – NONE 

    My treatment was every 3 weeks. My blood platelets started to go down on my 3rd treatment.  My 4th treatment was delayed for a week so as my 5th and 6th.

    My last treatment ended up on April 2017.  My doctor asks me if I want blood transfusion because my blood platelets was so low.  I said I still feel fine and If I needed it I will tell him.

    I recovered well with my Chemotherapy treatment.  I never limit my diet.  I eat anything I wanted to give my body enough strength to go through the treatment.  BTW my hair never stops growing throughout the treatment, but I need to shave it every day otherwise it will fall off then grow again.  So, I decided to start growing my hair on June 2017.

    June 2017 – I had 28 rounds of Radiation treatment.  Side effect was diarrhea.

    3 weeks after the last treatment, I’m back to my normal like with minimal side effects like my joints are weak and occasional diarrhea (it depends what I eat -  so I avoided foods that triggers diarrhea).

    September 2017 – My CT Scan and CA125(blood test) came out clean. Glory to God!

    I feel fantastic as I write my experience today (November 28, 2017).  My journey was never easy but my positive attitude and faith in God is the reason I’m alive. 

    If you are diagnosed of any cancer.  Don’t panic or be afraid.  Surround yourself with great friends and family.  Educated yourself through the internet, not to make you feel worst but read some uplifting stories. 

    Life is great.  Everything happens for a reason.  There’s always great purpose.

    Lesson Learned:  I don’t like going to the doctor.  But of course, after I was diagnosed, I advocate for endometrial cancer awareness and genetic testing by sharing my story at my Facebook page.  I am thankful to help some of my friends and given them enough courage to go to the doctor.  I also shared a video I got from YouTube about Endometrial Cancer.  The doctor said IF you notice some changes in your menstrual cycle, don’t wait too long to have it check.

     

     

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    edited November 2017 #5
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    Welcome, though I'm sorry you

    Welcome, though I'm sorry you need to be here. I was diagnosed Sept. 28 of this year with endometrial cancer. Endometrial adenocarcinoma. The biopsy showed stage 1 and grade 1, but the pathology report after.surgery showed it was actually stage 3, grade 2 as there were a few cancer cells on my ovary as well as in my uterus. The doctor felt that may have been because my ovary was attached to the side of the uterus. Grade 1 and grade 2 are the least aggressive cancers.

    My hysterectomy was October 10. My first chemo with Taxol and carbon was 2 weeks ago. Unfortunately, I reacted twice to the Taxol, so next week we are trying desensitization to see if my body will take it. If not, we're switching to doxil.

    I had endometrial biopsy, not a d&c, but I sure had cramping after that. 

    The hardest part is the waiting. I Google, too, and it did scare me but sometimes it's hard not to try to find out information. A lot of the information and statistics is old. The best source of info will be your pathology report and doctor. It sounds like everything is moving in the right direction, and the most important thing is that you found out, and now it can be dealt with.

     

     

     

  • janaes
    janaes Member Posts: 799 Member
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    I want to welcome you to our

    I want to welcome you to our wonderful support group.  Your story is very simmilar to mine. I too had hodgkins liphoma earlier in my life. I was 20. I did chemo and radiation and the doctors told me I had as much of a chance of getting cancer again as any one else does. I took that as good news an got on with my life. I didnt look back except to help others going through cancer.  

    In April 2016 i had a biopsy and found out i had uterine cancer.  The thing that prompted me to go to the doctor was blood clots.  I never got those.  I had no idea that was a sign of cancer.  I just didnt want blood clots while i was working.  I was totally shocked and didnot want to believe i had to do chemo or radiaton again when they told me i needed to after my hysterectomy.  Trust me i was angry to get cancer again.  I dony know what your doctor said but my onconogists believed i got uterine cancer because of all the radiation i got fom my hodgkins lymphoma cancer. I had stage four lymphoma and i remember i had a total of ninevwreks of radiation back then.  I did have a month break between those weeks.  My treatment plan for my uterine cancer did not include radiation(other than bracytherapy) because of all the radiation i did.

     

    Maybe yours will be different because you didnt have as much.

    I just want you to know i feel for you.  You will beable to make it through. My advice would be to not avoid your feelings.  Come here and processes them

      Thats is what got me through all the feelings. You are not alone.

    Best of luck as you go forward.

    Janae.

     

     

  • stinnettknox
    stinnettknox Member Posts: 4
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    janaes said:

    I want to welcome you to our

    I want to welcome you to our wonderful support group.  Your story is very simmilar to mine. I too had hodgkins liphoma earlier in my life. I was 20. I did chemo and radiation and the doctors told me I had as much of a chance of getting cancer again as any one else does. I took that as good news an got on with my life. I didnt look back except to help others going through cancer.  

    In April 2016 i had a biopsy and found out i had uterine cancer.  The thing that prompted me to go to the doctor was blood clots.  I never got those.  I had no idea that was a sign of cancer.  I just didnt want blood clots while i was working.  I was totally shocked and didnot want to believe i had to do chemo or radiaton again when they told me i needed to after my hysterectomy.  Trust me i was angry to get cancer again.  I dony know what your doctor said but my onconogists believed i got uterine cancer because of all the radiation i got fom my hodgkins lymphoma cancer. I had stage four lymphoma and i remember i had a total of ninevwreks of radiation back then.  I did have a month break between those weeks.  My treatment plan for my uterine cancer did not include radiation(other than bracytherapy) because of all the radiation i did.

     

    Maybe yours will be different because you didnt have as much.

    I just want you to know i feel for you.  You will beable to make it through. My advice would be to not avoid your feelings.  Come here and processes them

      Thats is what got me through all the feelings. You are not alone.

    Best of luck as you go forward.

    Janae.

     

     

    janaes Thank you

    It is nice to hear from someone that had Hodgkins and then later got another cancer.   I  expected breast cancer would come to haunt me.   My oncologist told me that usually people get breast cancer within the 1st 10 years after radiation to the chest, but I seem to have be doing ok in that area.   It really shocked me to get a endometrial cancer diagnosis since I was never told that was a chance.   21 years of being in menopause has led me to this point.   Right now I am working full time as a special education secretary at the high school level.   They are being great about letting me off when I need to be and very encouraging.   My daughters are here for me and so is my husband.   HE isn't one to dwell on bad stuff, but is a good listener most of the time.   Right now I am just ready to get the hysterectomy over with and have a "extended CHristmas vacation".   That is the how I am looking at this right now.   I just hope that I get good news on the stage and that all I will have to do is the surgery.   If i have to go through radiation and chemo again, I am ok with it, but I am still angry about it.   I guess that in some ways having another realatively rare cancer is easier the 2nd time around.   At least I know more about what to expect, but it still doesn't take away the stress.   BEfore, I just wanted to see my girls grow up, now I need to meet my future grandchildren!   

  • stinnettknox
    stinnettknox Member Posts: 4
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    Thanks for the wlecome

    I am sure that I will be talking to you all as I go forward on this unfortunate journey.   Right now I am finishing up my days before my early Christmas Break from my job as a school secretary.   MY last day of work is December 6th.   I am taking the 7th off for my surgery prep day (yuck) and the surgery is next Friday on the 8th.   Hoping for stage 1.   I will let you know how it goes.

  • janaes
    janaes Member Posts: 799 Member
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    Stinnetknocks

    Stinnetknocks

    Although my doctor from earlier in life didnt say anything about breast cancer, when i was diagnosed with uterine cancer mu oncologyst quickly ordered a mamagram for me because i had never had one.  Mine was good too. 

    You sound like you have a good attitude going forward. I will tell you one thing i did to fight my anger after finding i had to do chemo again, i went and bought me a wig because that is what i enjoyed about having cancer before. Putting a wig on real quick was so nice before so i thought that would motivate me.  It did help.

    By the way i didnt go into metipause after hodgkins but i was never able to get pregnant an believe at least in part that hodgkins treatment caused that.  My doctor told me it might.  Fortunatly i was able to adopt two kids. 

    If you ever want to pm me fill free.

    Lots of love

    Janae