New Here -Just Diagnosed

justlinda1967
justlinda1967 Member Posts: 2
in Uterine/Endometrial Cancer #1

Hello!

I am 46 and have been post menopausal for about 2 years. 3 weeks ago I was diagnosed with uterine cancer from a endometrial biopsy.  I have had off and on spotting for a little over a year, whichi I wrote off to part of menopause, and then my primary doctor wrote it off as "probably a small fibroid or something".  However, the spotting became an everyday occurence, and I have had shortness of breath and fatigue,and finally decided this might be more than menopause.  This prompted me to seek out a second opinion just to make sure.  My hysterectomy is this Monday the 17th.  It will be done witht the DaVinci Robot.  I am nervous about the surgery, but more nervous because I have been having pain the last several months in the groin area, in the crease of the leg on the left side. I go for my CT scan on Thursday so I am I hoping that I will know more by then.  I was wondering if anyone else experienced a similar pain?  I am a positive thinker, and my mother had uterine cancer 20 years ago, and the hysterectomy took care of it.  I am hoping for the same result. If nothing else, this is a great lesson in patience!!

 

Also, blood work shows that I have the MTHFR Gene, homozygous (meaning two copies), so I will have shots of Lovenox in the hospital and after surgery for a little while.  This gene can put you at a higher risk for many things, cancer being one of them so if you aren't familiar with it, you might want to check into it.

Thanks!

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #2
    I am sorry you have had to find us

    However, I extend a warm welcome.  There is lots of information on this page so also do a little searching too.

    I can't comment on the groin pain but I am so glad to hear you were your own advocate and didn't settle for the first doctors assumptions.  Continue to ask your questions and find the doctor you know who has your best interest at heart. 

    I found the da Vinci surgery miraculous!  Recovery was so much quicker than traditional surgery and I had way too much living to do!

  • justlinda1967
    justlinda1967 Member Posts: 2
    #3
    NoTimeForCancer said:

    I am sorry you have had to find us

    However, I extend a warm welcome.  There is lots of information on this page so also do a little searching too.

    I can't comment on the groin pain but I am so glad to hear you were your own advocate and didn't settle for the first doctors assumptions.  Continue to ask your questions and find the doctor you know who has your best interest at heart. 

    I found the da Vinci surgery miraculous!  Recovery was so much quicker than traditional surgery and I had way too much living to do!

    Thank you!

    Thank you for responding. Glad to hear that the da Vinci surgery is great!  It is good to hear positive things!

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4
    Welcome to this site

    Sorry you had to join us, but I hope your surgery will take care of everything.  I too had the DaVinci surgery.  It was remarkable how little pain I had after surgery.  I went home the next day.   I hope your surgery goes well on Monday.  

    I am not familiar with the gene you talked about.  I did develop multiple blood clots in both lungs, so I have been on lovenox shots for two years now.  

    Hope you get good results from your CAT scan, but also an answer for your groin pain.  In peace and caring.  

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #5
    i had stage 1A grade 3 not

    i had stage 1A grade 3 not MMT.  I also had pain and mostly when i bicycled.  It got to the point before my operation i couldn't sit on my seat too  long.  Mine ended up a polyp gone cancerous. Once I had my hysterectomy I was great.  I had robotic surgery 12/12/12 and it was great, loved it.  Feeling great right now

    i did have adjunct chemo and internal radiation.  Survived that and doing well

     

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #6
    Wishing you the best on your

    Wishing you the best on your upcoming surgery.    

    I had my hysterectomy the traditional way.   However, with regard to the pain you are having, I experience that kind of pain.  It usually generated in my lower back, around the left hip area, and continued to my left thigh and down my left leg.    I had severe endometriosis and as a result of all of the scarring, it was pressing on the nerves and cramping all of my organs.   Prior to my hysterectomy, I wanted to have some type of scan but they indicated no because they did not think I had cancer.   It wasnt until after the hysterectomy that they found the cancer and I had to have an additional surgery for staging.  (I was 45 years old at the time back in 2005).    It is good that you are getting the CT scan prior to your surgery. 

    I have never been tested for that gene.   But when I looked at it at first I thought you were swearing (MTH*FR Gene - get it?  lol).  (Trying to make you laugh!)    I am glad you are a postive thinker!  I will keep you in my thoughts on the 17th.

    Kathy

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #7
    Kaleena said:

    Wishing you the best on your

    Wishing you the best on your upcoming surgery.    

    I had my hysterectomy the traditional way.   However, with regard to the pain you are having, I experience that kind of pain.  It usually generated in my lower back, around the left hip area, and continued to my left thigh and down my left leg.    I had severe endometriosis and as a result of all of the scarring, it was pressing on the nerves and cramping all of my organs.   Prior to my hysterectomy, I wanted to have some type of scan but they indicated no because they did not think I had cancer.   It wasnt until after the hysterectomy that they found the cancer and I had to have an additional surgery for staging.  (I was 45 years old at the time back in 2005).    It is good that you are getting the CT scan prior to your surgery. 

    I have never been tested for that gene.   But when I looked at it at first I thought you were swearing (MTH*FR Gene - get it?  lol).  (Trying to make you laugh!)    I am glad you are a postive thinker!  I will keep you in my thoughts on the 17th.

    Kathy

    Kathy

    You made me laugh.  Too funny

  • Ruffy7
    Ruffy7 Member Posts: 126
    #8
    Hi, I too am having Da Vinci

    Hi, I too am having Da Vinci hysterectomy with tubes/ovaries also taken out on Monday, 2/17! :)  A gyn onc is doing the surgery and has already had me get the CA 125 blood test and will do a frozen section with possible staging then as well.  I'm 53 (actually turn 54 on 2/18) and in menopause as well.  Spotting started around thanksgiving and has been on/off since then.  Due to extreme retroversion of uterus, biopsy, hysteroscopy, and D&C are not possible so we will do a total hysterectomy.  I was dx with appendix cancer in 2011 so I think she is being extra careful.  Sorry can't answer on groin pain but I have had lower back pain, I'm assuming it's arthritis.  I have had follow up CT scans ever since the appendix thing.  Last one was in Oct. 2013.  I don't think endometrial/uterine cancer shows up on CT scans but I could be wrong.  Anyway, good luck on Monday.  (at this point I already have 7 scars on stomach/abdomen - 5 more will bring me to a dozen!). 

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #9
    Ruffy7 said:

    Hi, I too am having Da Vinci

    Hi, I too am having Da Vinci hysterectomy with tubes/ovaries also taken out on Monday, 2/17! :)  A gyn onc is doing the surgery and has already had me get the CA 125 blood test and will do a frozen section with possible staging then as well.  I'm 53 (actually turn 54 on 2/18) and in menopause as well.  Spotting started around thanksgiving and has been on/off since then.  Due to extreme retroversion of uterus, biopsy, hysteroscopy, and D&C are not possible so we will do a total hysterectomy.  I was dx with appendix cancer in 2011 so I think she is being extra careful.  Sorry can't answer on groin pain but I have had lower back pain, I'm assuming it's arthritis.  I have had follow up CT scans ever since the appendix thing.  Last one was in Oct. 2013.  I don't think endometrial/uterine cancer shows up on CT scans but I could be wrong.  Anyway, good luck on Monday.  (at this point I already have 7 scars on stomach/abdomen - 5 more will bring me to a dozen!). 

    Ruffy

    Good luck with your surgery on Monday.  I hope you get a good report after your surgery.   Hope you are able to have the DaVinci.

  • debrajo
    debrajo Member Posts: 1,095 Member
    #10
    welcome!

    I had the same groin pain...almost couldn't stand up straight.  Mine was on the right side...a pylop with the "root" slowly eating away the uterine lining.  Of coursr, I didn't know this til after surgery.  It just happened to have started on the cusp of the uterius and the cervix.  Biopsy showed 1a, grade c UPSC.  Full radical open belly lateral hysterectomy, five rounds internal radiation, and six rounds of Taxol/Carboplatin.  I have been NED for over 3 1/2 years.  It's doable, especially with the ladies and friends on the CSN boards!  Good luck!  Debrajo 

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #11
    debrajo said:

    welcome!

    I had the same groin pain...almost couldn't stand up straight.  Mine was on the right side...a pylop with the "root" slowly eating away the uterine lining.  Of coursr, I didn't know this til after surgery.  It just happened to have started on the cusp of the uterius and the cervix.  Biopsy showed 1a, grade c UPSC.  Full radical open belly lateral hysterectomy, five rounds internal radiation, and six rounds of Taxol/Carboplatin.  I have been NED for over 3 1/2 years.  It's doable, especially with the ladies and friends on the CSN boards!  Good luck!  Debrajo 

    Hi  Debrajo,

    I am currently undergoing chemo for UPSC  stage 2  grade 3. My Dr wants to do all six rounds before beginning radiation. I am very undecided about the radiation,  5 weeks of daily external radiation  and then internal. Did you choose to have only the internal or is that what your Dr. recomended? I feel like my insides will fryed! I am really scared of the side effects. I am thinking of eithernot getting radiation or only the internal

    Thanks,

    Sandy

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #12
    Sandy3185 said:

    Hi  Debrajo,

    I am currently undergoing chemo for UPSC  stage 2  grade 3. My Dr wants to do all six rounds before beginning radiation. I am very undecided about the radiation,  5 weeks of daily external radiation  and then internal. Did you choose to have only the internal or is that what your Dr. recomended? I feel like my insides will fryed! I am really scared of the side effects. I am thinking of eithernot getting radiation or only the internal

    Thanks,

    Sandy

    internal/external

    i am  not an expert, but i ended up with only internal after a second opinion.  This was what i gathered. there are a number of factors that determine the benefit of exterrnal:

    size of tumor

    how much did it breach the wall

    were lymph nodes involved

    grade

    MMT

    once two second opinions confirmed mine wasn't MMT and was a 1A grade 3 and 72 lymph nodes were tested and all fine they all agreed on internal.  The internal is for the vaginal cuff and i was told the radiation could basically nullify the chances of a recurrence. Obvsioulsy anything can take place.  If you are unsure seek a second opinion or sit down with the radiologist and have him explain why, what are we expecting and what if not.  That is what i did which led to the radiologist actually recommending a second opinion at Dana Farber. 

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #13
    Sandy3185 said:

    Hi  Debrajo,

    I am currently undergoing chemo for UPSC  stage 2  grade 3. My Dr wants to do all six rounds before beginning radiation. I am very undecided about the radiation,  5 weeks of daily external radiation  and then internal. Did you choose to have only the internal or is that what your Dr. recomended? I feel like my insides will fryed! I am really scared of the side effects. I am thinking of eithernot getting radiation or only the internal

    Thanks,

    Sandy

    internal/external

    i am  not an expert, but i ended up with only internal after a second opinion.  This was what i gathered. there are a number of factors that determine the benefit of exterrnal:

    size of tumor

    how much did it breach the wall

    were lymph nodes involved

    grade

    MMT

    once two second opinions confirmed mine wasn't MMT and was a 1A grade 3 and 72 lymph nodes were tested and all fine they all agreed on internal.  The internal is for the vaginal cuff and i was told the radiation could basically nullify the chances of a recurrence. Obvsioulsy anything can take place.  If you are unsure seek a second opinion or sit down with the radiologist and have him explain why, what are we expecting and what if not.  That is what i did which led to the radiologist actually recommending a second opinion at Dana Farber. 

  • SUNGRANNY
    SUNGRANNY Member Posts: 81 Member
    #14
    Healing thoughts

    Here:s to a successful surgery and speedy recovery.

    Another gym can sister.

    Sungranny

  • SUNGRANNY
    SUNGRANNY Member Posts: 81 Member
    #15
    Ruffy7 said:

    Hi, I too am having Da Vinci

    Hi, I too am having Da Vinci hysterectomy with tubes/ovaries also taken out on Monday, 2/17! :)  A gyn onc is doing the surgery and has already had me get the CA 125 blood test and will do a frozen section with possible staging then as well.  I'm 53 (actually turn 54 on 2/18) and in menopause as well.  Spotting started around thanksgiving and has been on/off since then.  Due to extreme retroversion of uterus, biopsy, hysteroscopy, and D&C are not possible so we will do a total hysterectomy.  I was dx with appendix cancer in 2011 so I think she is being extra careful.  Sorry can't answer on groin pain but I have had lower back pain, I'm assuming it's arthritis.  I have had follow up CT scans ever since the appendix thing.  Last one was in Oct. 2013.  I don't think endometrial/uterine cancer shows up on CT scans but I could be wrong.  Anyway, good luck on Monday.  (at this point I already have 7 scars on stomach/abdomen - 5 more will bring me to a dozen!). 

    Healing thoughts

    Ruffy,

    Here's to a successful surgery and speedy recovery.

    Another uterine can sister,

    Sungranny

  • debrajo
    debrajo Member Posts: 1,095 Member
    #16
    Sandy3185 said:

    Hi  Debrajo,

    I am currently undergoing chemo for UPSC  stage 2  grade 3. My Dr wants to do all six rounds before beginning radiation. I am very undecided about the radiation,  5 weeks of daily external radiation  and then internal. Did you choose to have only the internal or is that what your Dr. recomended? I feel like my insides will fryed! I am really scared of the side effects. I am thinking of eithernot getting radiation or only the internal

    Thanks,

    Sandy

    Sandy

    I would sure as heck get a second opinion before  all the external radiation.  I am at M.D. Anderson in Houston.  They have a board to meet and discuss each case, as I'm  sure all major cancer centers do.  The protocal there for UPSC of any stage is the sandwich of three chemo, between three and five internal radiation, then three more chemo's.  I took the five rads and had no problems.  Chemo was Taxol and Carboplatin.  I know the UPSC is VERY agressive, but that seems like a lot of radiation to me.  I'm no expert at all, just experenced.  

    I know of one lady on another board with UPSC who did just the chemo.  She was a 1a just like me.  I am over three years NED, she just reported she is in a recurance after only 8 months.  I'm not trying to scare you or say something to make you deside against ANY treatment.  I ask my dr. if I could opt out of one or the other.  Their exact words to me were,"It's your choose, but the reconmendation of the board is six chemo, five rads.  If you want to opt out, please pick up your files on your way out...we will no longer treat you".  SOOOOO, please get a second opinion or a third.  Make the dr. explain why the external since  most time it comes back inside the vaginal cuff. 

    Balancing cancer with X amount of chemo or radiation can be a very fine line.  If it were me, I'd want the most chemo/radiation exactly where I needed it.  Maybe your dr. has a very good reason, but another opinion is cheap insurance you are getting what will do you the most good.  Let me know if I can help and you can ask me anything here or in a private email.  Best to you Debra

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