Am I considered high risk?

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JM_TO
JM_TO Member Posts: 2
edited June 2014 in High Risk for Breast Cancer

Hi there everyone

My sister was just diagnoised with DCIS (accidetially) after having breast reduction surgery. To be perfectly honest we thought everything was fine (based on the routine mammogram and breast ultrasound she had a few months before in preperation for the surgery) and to be told they found cancer during a f/u was shocking to say the least.

It didn't help that the plastic surgeon seemed just as shocked as her and went on to suggest her sisters get thoughly tested soon. it kinda felt like she knew more than she was saying, and if that's the case I can understand her reasons (she is not an oncologist). She has refered my sister to a surgical oncologist and an appointment is scheduled in a few weeks. In the meantime, it's a waiting game.

For me my issues started about 7 or 8 months ago when I found a hard pea shaped lump in my left breast. I was pretty freaked out and went to my doctor thought it was a skin cyst and sent me to a plastic surgeon (he didn't think a breast clinic was necessary). The plastic surgeon told me he thinks it's nothing and sent me for an ultrasound which showed a "suspected benign fibradenoma and small cysts" with f/u in 6 months. Again I asked about a referral to a breast clinic and was told not necessary. I was pretty frustrated, but also a bit relieved it wasn't raising any alarm bells

3 weeks ago I had my 6 month f/u and now they have found a whole bunch of things..lol

For example both breast have "several hypoechoic structures that could represent small cysts. No suspcious features are seen" and  "Two benign appearing lymph nodes were noted in each axilla, no suspcious features"

Recommendation....f/u in 6 months with another u/s and mammogram.

I'm not sure that's the smartest thing, considering the recent diagnosis for my sister, should I be insisting more is done? I also feel like I could be overreacting a bit, although from what I've read so far, I think I have now moved into a "high risk category"

Any suggestions or advice would be greatly appreciated. 


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Comments

  • ballet12
    ballet12 Member Posts: 981
    edited February 2013

    If you have family history, your risk increases (especially if your sister is pre-menopausal), but your own history doesn't sound too alarming yet.  If you have access to a high-risk clinic for surveillance (like at an NCI-designated cancer treatment center), that would be a good thing. It sounds like you are being followed carefully already.  They might add an MRI at some point, which is more sensitive.  It picks up bad stuff but lots and lots of benign stuff which ends up being followed, like those "hypoechoic structures." If you can, go with your sister to her surgical oncology appointment, and maybe there will be time to ask the questions about whether you and your sister(s) need genetic testing or other followup.

    Best of luck to your sister.

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  • karody
    karody Member Posts: 89
    edited February 2013

    Okay, JM, I do not want to worry you unnecessarily at this hour, because I am sure you understand that statistically speaking, it is more likely nothing, than something.

    However, with that being said, please know that there is no way to be certain if a lump is metastatic without a biopsy.  If I were you, I would push for a biopsy.  When I was 34, I found a pea sized lump, panicked, and made an appt. with my ob/gyn.  He sent me for an ultrasound.  The radiologist who read the ultrasound showed "benign fibroadenomous tissue."  My doctor said it was just a fibroadenoma like my mother (also his patient) has.  Unlike you, I had no family history.  I also had absolutely no risk factors for BC.  So, being a busy mom and wife, I forgot all about it.

    The next year, when I was 35, at my PAP appointment, my ob/gyn was visibly alarmed when he palpated my now lime sized "fibroadenoma."  I didn't know a fibroadenoma should not grow.  I didn't know that the ultrasound isn't really a difinitive diagnosis- it is really quite subjective.  Only a biopsy is difinitive.  Anyway, you guessed it, Stage III, 7 cm tumor with lymph node involvement.  Maybe the year before it was just DCIS and my survival stats would now be better?.. Maybe, my treatment could have been less aggressive?...hard to say, but I wish I had had a biopsy.

    Again, statistically, you probably have a fibroadenoma.  And that biopsy HURTS.  And docs pledge to, "first do no harm."  So do not panic and do make the decision you are comfortable with, but I want you to know what I did not at 34.  Only a biopsy will tell you for sure.

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  • JM_TO
    JM_TO Member Posts: 2
    edited February 2013

    Thanks for sharing your experience Karody. I think I will take your advice and push for a biopsy. Fortunatley I live in Canada so it will be covered. I feel a bit better now knowing I'm going to do something productive, instead of just "waiting"

    Do you have sisters? If so was any testing done for them?

    I realize I should have added a bit more specific information, so here it is.

    I'm 37 and my sister is 44. There is no history of BC in my family, however I am HPV DNA positive (i'm not sure if there is a link) I do have regular colposcopies and everything has cleared up.

    My family history on my fathers side is positive for other types of cancer. For example, my dad and two uncles died of lung cancer, one of my aunts died of mouth cancer(weird) another aunt died of an unknown cancer and of my two remaining aunts one had kidney cancer (kidney was removed) and the other is healthy.

    My mom's side only one Aunt (of four) died of lung cancer, the rest are cancer free.

    I'm so glad I found this board.



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  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2013

    Totally agree with Karody. I would get the biopsy too. It is the only test that will show definitively whether it is BC or not. I have a family history too. Mother had BC in her late 60s, dad had lymphoma, brother had melonama and one grandfather had pancreatic cancer. I dont know a single person who has not been affected by cancer in some way. However, I was told that 70% of women who get BC are not high risk. Wouldnt know if by my sister and I because we both got it. I have Stage 2 IDC and she has Lobular carcinoma. I have also heard of stories where women lament not doing something before it was discovered when they suspected something was wrong. Sometimes they are acting on a dr's advice which is more frightening. Bottom line is it is your life so you do what you think is best for you. Better to know and deal with it now instead of later like Karody who is dealing with a more severe case that could have been avoided. We have to be our own advocates. I never felt my cancer; it is very small. Showed up on a mammogram. My sister did feel hers but waited a few months. Dr said that didnt change anything. My mother found hers too. So if I were you I would do diligence and let us know. Good luck...diane

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  • fredntan
    fredntan Member Posts: 1,821
    edited February 2013

    I have similar story. Had radiologist with his US wand pointed right where my cancer would laterbe found by me. He said "its nothing" . I could have been dx at earlier stage. Biopsy isnt that painful. Get some xanax. Its probably nothing. But only one way to know for sure

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  • april485
    april485 Member Posts: 3,257
    edited February 2013

    JMTO, hoping that you were able to find out what your lump is. I agree with all the others here fwiw. I knew something was wrong with me and I made sure that I went to a Breast Cancer center for my peace of mind. They concurred with my original radiologist on 6 month follow up. At the 6 month mark, I went there for my follow up diagnostic mammo and sure enough, DCIS. I KNEW something was not right this time. I had cysts and other things previously. This somehow felt different in my body and mine wasn't even a lump! My body felt "run down" if there is such a clue for BC. I just wasn't myself. So, I made sure that I had the best looking at my films. The first place may have done another watch and wait. Hugs and hoping you have gotten some answers. Praying for your sister too.

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited February 2013

    Hi, just adding my support during this scary and uncertain time!  I agree with the ladies - push for a biopsy. As you now know, breast issues wreak psychological havoc on us, so anything you can do to get peace of mind, answers and education in this crazy realm of uncertainty is important.

    Here is a risk calculator that my clinic uses - of course it isn't perfect, but it's all we have.  Some ladies who are high risk never develop BC, some who are very low risk do.  My docs consider above 33% to be high risk.  Sadly, I am at 46%, but that means 64% that I will dodge the bullet in my lifetime, so that's what I'm shooting for! 

    We have a 6 month club thread out here if you find yourself in that endless cycle of visits and "we think", "it's probably nothing", etc - we're here for you!

    http://www.halls.md/breast/risk.htm

    Go down halfway to the drop down menu and select "Gail model 1" for calulating results.

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