Please help me make a decision

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vicliz
vicliz Member Posts: 159
edited June 2014 in High Risk for Breast Cancer
Please help me make a decision
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  • vicliz
    vicliz Member Posts: 159
    edited December 2007

    I have a hysterectomy scheduled for Jan 7th.  From what I have been reading I'm thinking I need to cancel the surgery.  Originally my onc recommended having my ovaries removed because of my history.  15 years ago at the age of 34 I had an aggressive tumor that was  er negative and I have recently found I do not carry the gene.  Through many of your helpful letters I have been givning the surgery second thought.  Now that my onc knows I am Brac's negative she says the surgery is not really necessary.  Before I cancel please tell me what you think, again.

    Vicki

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  • msannie57
    msannie57 Member Posts: 84
    edited December 2007

    Do you have a family history of breast or ovarian cancer?  Those factors should be considered too since while BRCA is the only mutation we test for it is most likely not the only one involved.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2007

    I also see that your original dx was er/pr negative....Im not sure I would do anything more than maybe remove the ovaries since your tumor didnt appear to be hormone fed....

    Jule

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  • vicliz
    vicliz Member Posts: 159
    edited December 2007

    NO breast or ovarian cancer.  There is melanoma and colon.

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  • ADK
    ADK Member Posts: 2,259
    edited December 2007

    Hi Vicki,

    I have had a total abdominal hyst and it is no picnic.  I do think it is odd that your onc would recommend a hyst to you in the first place because you are er-.  Now that your onc is saying that it isn't necessary, you shouldn't put yourself through it unless there are other compelling reasons.  Perhaps you should get a second opinion, but I have never heard of an er- being recommended for a hyst before.  Most importantly, you must do what makes you most comfortable.

    Good Luck.

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  • lrs
    lrs Member Posts: 55
    edited December 2007

    hi,

    I have stage 2, Invaisive ductal carconoma,tripple postive cancer, I have had surgery to remove a 5cm tumor and they also removed 20 lymph nodes (they all came back negative even though they ranged in size from 2.5cm and smaller), chemo, radiation, and curently on herceptin, zoladex and femera.

    I will be getting surgery this summer to remove my ovarie's and tubes. Both the oncologist, and gynocologist surgeon say that it is the best this for me because of my age and diagnosis. I asked about full removal of everything and both agreed it was not necessary since the cancer in my family is uteran and skin. They said that if I was very overweight to obese and has type 2 diabetic then I would be at risk for uteran cancer. They also said if I did not want the surgery they would keep me on zoladex.

    My choice is surgery, I think for me it is the best choice to increase my chances of not getting sick again. In Canada I do not have to pay for my surgery. But if I did I would gladly pay the price for my peace of mind. I don't want to look back and say I should have. I have no regrets.

    From what you have written being er/pr negative your cancer is not hormone spread. You need to do what makes you feel good in your skin. Just be sure that you are happy with your descsion.

    LRS

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  • ophelia
    ophelia Member Posts: 337
    edited December 2007

    I've had one ovary removed.  Surg suggested hyst. as an option since we were removing ovary.  I decided against it.  But I got a 2nd opinion first.   Maybe a 2nd opinion would be a good idea if you are confused and unsure.

    Take care...

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  • MtnMama
    MtnMama Member Posts: 133
    edited December 2007

    Interesting Maria, did you have just one ovary removed as a prophylactic treatment for er+ breast cancer?  Just curious as I'd hadn't heard of that approach.  I am considering having mine removed, and just want to consider all options.

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  • ophelia
    ophelia Member Posts: 337
    edited December 2007

    I had a 2 fairly large ovarian cysts and a uterine polyp(compliments of tamoxifen). Drs told me that they'd have to remove left ovary because cyst was too deeply embedded and they weren't sure if right ovary could be spared. I had laproscopic surg. Turned out to  be endometriosis no cancer.  Right ovary was savednuterine polyp was b9.  1st dr figured since I was having surgery anyway I might consider removing everything.  2nd opinion felt that was too aggressive. I'm glad I had got 2nd opinion. I have heard of women who tested positive for brca and chose to do prophy. hyst.  That was not my situation.

    Good luck in your decision making.

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  • Helenhsm
    Helenhsm Member Posts: 177
    edited December 2007

    From my understanding if you are BRCA - then you are back with the general population for chance of getting OC which is less than 2%. I am awaiting test results, if I am + I at some point will get out my ovaries, if it is - I am keeping 'em.

    IMHO avoid surgery if it is truly unnecessary. Remember drs make a living doing this stuff, of course they do try to have our best interest in mind- but the money thing is a caution. Getting a 2nd opinion sounds like a good idea, if you think that would help.  

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited December 2007

    Hi Vicki -

    First of all, let me offer my sincere congratulations on 15 years of successful living following dealing with an aggressive, hormone negative breast cancer

    <APPLAUSE!>

    It is my guess that now at ~49, you are at least perimenopausal and any activity of your ovaries is more than likely important to your quality of life (if they were not prematurely shut down altogether by chemo). With your lack of BRCA involvement, lack of other family history, lack of hormone-dependent cancer history, lack of any trouble with the organs in question, I'd say find something more entertaining to do with your Monday the 7th! Cool I agree with your oncologist - not necessary!

    Lisa

    who is BRCA-1+ but is just taking the ovaries

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  • vicliz
    vicliz Member Posts: 159
    edited December 2007

    To my sisters who have saved me!!!!

    If it were not for you all I would have gone straight ahead with the surgery and not questioned my Onc again!! You would think I would know better by now!  Because of you I have an appointment with a second Onc tomorrow.  I have a strong feeling she will tell me exactly what you have all said.  I don't think my Onc of 15 years is paying enough attention. 

    I certainly don't need to go through a surgical menopause unnecessarily.  Thank you all from the bottom of my heart!

    Love,

    Vicki

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  • Helenhsm
    Helenhsm Member Posts: 177
    edited December 2007

    Vicki, I'm glad to hear you are feeling more confident. Let us know what the 2nd Onc. tells you.

    All the best, 

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