What? Now a hysterectomy, too?

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living4today
living4today Member Posts: 215
edited June 2014 in Triple-Negative Breast Cancer

Does anyone else feel this cancer journey is like the Lamb Chop song..."There is a song that never ends, it goes on and on my friend...??"  For the record, I finished chemo in June 2009 and radiation in Sept 2009, with 2nd stage reconstruction (implants) in March 2010.  The last few weeks, I have been feeling great.  Lots of "zip", "energy", and "hope."  I went to the gynecologists/oncologists this past week for a follow up appt.  I was shocked when he recommended a complete hysterectomy (with ovaries removed.)  His case for this is that I had double breast cancer, endometriosis and now am having a period ever 2 1/2 weeks since March.  Since I am like to research, I have spent some time researching "instant" menopause...and I thought chemo "sucked"...The doctor is giving me until October for my body to straighten out....urghhh!!!  Any words of wisdom would be appreciated.  Thanks.

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  • tibet
    tibet Member Posts: 545
    edited August 2010

    Did you do a genetic test for BRCA genes?

    You have no family history and did you have a BC in both breasts or just one? You said you had double breast cancer. Usually they suggest to remove the ovaries if one is tested positive for the BRCA gene.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2010

    This situation says "second opinion" to me. As newalex said, the recommendation for oophorectomy is usually only given in the presence of BRCA+ or strong family history, and bc does not raise the danger of uterine cancer. I would speak to a doc who is an expert in endometriosis (not sure if any gyns specialize in this) and also ask why a d & c is not being recommended.

    It sounds like there are too many questions to be answered before surgery of this magnitude is done.

    Best of luck.

    Leah

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  • sunnytn1949
    sunnytn1949 Member Posts: 28
    edited August 2010

    Yes, I agree with the second opinion.  My oncol said if my genetic testing showed positive, then I would want to have a hysterectomy.  It showed negative, no hysterectomy.

    Wink

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  • living4today
    living4today Member Posts: 215
    edited August 2010

    Thanks everyone for your thoughts.  I tested negative for BRACA.  Interestingly, I met with a genetic counselor today--he was was wonderful.  He is of the opinion that hopefully in 5-10 years there will be panal they will do when a person is diagnosed with cancer to see if genetics play a role.  He stated with my history (and my brother was dx with carcinoid tumor at age 30) that he wouldn't be surprised if something shows up in our family line in the future.  He also shared with me that there are other tests besides BRACA for genetics, but they haven't been tested as much.

     He asked me a question that I never thought of ...I was dx with invasive cancer in left breast, had bilat mastectomy, only to find out I had a 5 cm DCIS on the right...he wanted to know if the right was a secondary to the left or a new primary?  No one else has ever mentioned that, so I will be checking with oncologists. (If rt was a new primary, it is highly suggestive of genetic somewhere.)

    Oh, and I have second opinion scheduled for Friday.

     Thanks again!

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  • tibet
    tibet Member Posts: 545
    edited August 2010

    Kim

    It is impossible that the right is a secondary to the left because DCIS is not invasive and it cannot be traveld from the left. It is ofcourse new primary. I don't get why your doctor was not sure about that. DCIS is the precuror of an invasive, so it is likely that the DCIS on your right is a new primary and good you had it out, otherwise it could become invasive in due time. If you have had kids already, getting the overies out maybe is safer to go.

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  • living4today
    living4today Member Posts: 215
    edited August 2010

    Happy Friday!

    Well, the tears are dried and the researching has begun. 

    The second opinion doc agreed with the first...a total hysterectomy.  Reasons:  Bilateral breast cancer, endometriosis (which developed secondary to chemo, as I never had these issues before...severe back pain, pelvic discomfort, etc.) and abnormal bleeding (cycling every 2 1/2 weeks for 5-7 days).  No other options are available.  I explained that I have a great quality of life right now ane I am real hesitant about "instant menopause."  She said they would give me an antidepressant.  She is a well-respected world known MD. 

    To me it is so frustrating, especially when I have tried to make every health/life style change possible and than to continue to have issues.  I have made many positive changes to my life (even taking my first air plane trip from South Dakota to North Carolina all by myself to fulfill a life long dream of attending a writers conference.  I definately felt like "Heidi" leaving the mountain.  But the important thing was that I did it and had an absolute wonderful time.)  Now the reality of cancer and it's after affects hit me in the face.

    Thanks all for your thoughts and advice...my prayers continue for you all!

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  • Issymom
    Issymom Member Posts: 264
    edited August 2010

    living4today -  I am BRCA1+ and after chemo, I have a complete hysterectomy (and ooph).  I was amazed at he easy the surgery was.  In 10 days, I was walking (6 miles - training for the 3 day/60 mile) and weeding my garden.  Chemo did put me into chemopause and now I am in full blown menopause.  I am having some hot flashes but they aren't too bad.  I am not taking anything at this point..

     I wish you well on your surgery and recovery.  Let me know if you have any questions.

    Lorrie

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2010

    So, the second opinion doc says  the only thing to fix the problem is the same thng the first opinion doc said.

    So the next question is - what happens if you do nothing? How bad is tthe pain/discomfort from the endometriosis? How heavy is the bleeding - will iron supplements be a good idea? In other words, what happens if you don't fix the problem?

    I'm suggesting these questions because you don't seem comfortable with the idea of the surgery, so you might want to explore these issues.

    Best of luck.

    Leah

    edited to add: the cancer risk quesitions should be asked of an oncologist and possibly a  geneticist.

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  • living4today
    living4today Member Posts: 215
    edited August 2010

    Thanks Leah and everyone else for your thoughts and support!

    My only hesitation with surgery, is, well it's surgery.

     I never had PMS or any issues with my cycle before chemo...so it just is frustrating.  The last few days I have felt horrible...just started spotting again.  So, am I going to feel this horrible after the hysterectomy or will everything stabalize.  I am researching now...

    The back pain and pelvis discomfort was pretty intense last week, not as bad this week...now just a horrible headache, nausea, crabby, etc.  I hate whining!

    Thanks again!

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  • eileen1955
    eileen1955 Member Posts: 365
    edited August 2010

    some women have a total hysterectomy (with ovary removal) striclty b/c of their endometriosis.  It can be disabling with the cyclical pelvic pain.     I had endometriosis on my bladder as well as on my ovaries and in uterus.    It was a terrible way to live.  when I had my period all the endometriosis would swell up and bleed outside of my uterus.    PAIN.     I had several surgeries and kept my uterus/ovaries so I could finish my family.   I was on and off oral contraceptives for 9 yrs; which greatly alleviated the endometriosis pain.   

    Living4Today; you obviously cannot be put on the pill b/c you have had bc.  so keep asking ?s of your docs till you feel secure in your decision.     May I ask how old are you?    

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  • living4today
    living4today Member Posts: 215
    edited August 2010

    Eileen,

    Thanks for your post.  I just turned 42 this in May.

    I hope this post doesn't sound too discouraging, however, I am seeking thoughts from anyone who may have been where I am at now.  Before cancer, I had avg cycles, little or no issues.  I was in "chemopause" for about 10 months with labs showing menopause stage when I started spotting this past winter.  In January, I had a laproscope for endometriosis (which I never knew I had but the back pain was horrible.)  Slowly the back pain, pelvic pressure is increasing and periods are every 2 1/2 to 3 weeks.  (heavier than before chemo, but leveling out some as time goes on.)  Last period, I had little PMS symptoms.  The last few days have been aweful.  My poor husband.  I don't even want to be in the same room with myself.  My hesitation on the hysterectomy is am I going to be this crabby all the time.  Last week my quality of life was 500% and today 5%.  I started spotting two days ago and can't wait for the dang thing to kick in so I get some relief. 

    There is so little information published about menses, chemo, after treatment, etc...

     Not to mention the fear of the big C coming back when you feel so crappy.

    For lifestyle choices--I try and walk 1-4 miles a day, eat 50% organically, no artificial sugars, limit HFCS, no smoking, limit alchohol, destressed my life, supplement with vit d, etc...

    thanks in advance for any tips, thoughts or suggestions.

    Kim (the crab in South Dakota)

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