BRCA1 and confused...

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Oddball1
Oddball1 Member Posts: 65
edited June 2014 in High Risk for Breast Cancer

Will a mammo and MRI regimen pick up cancers when they are curable or not?????  IF caught early do most BRCA1 cancers need chemo??  What does your oncologist say?  I am a previvor trying to get the facts as to whether or not I should continue down my PBM journey.  Any input is appreciated.  I feel this is appropriate but keep hearing things like.... you don't have cancer and you have no indication anything is wrong. Maybe you should screen and as long as you come in every time as recommended, you will be able to catch it early.  Or act when you see changes in your tissue.  What do you other BRCA1 folks think??    

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  • jessamine
    jessamine Member Posts: 322
    edited June 2010

    They are not only able to pick up cancers very early these days, but so early that they are considering it a problem, as it leads to detecting so many pre-cancers. So just do your scans and self exams and you should be fine. Us BRCA folks are more likely to get cancer than others but if we do it's no different then any other- IE, it might need chemo or it might not, same as anyone else. It's not any more likely to be metastatic.

    I think the advice you're getting is correct- remain vigilant, but remember that so far, you are fine, and you may never not be fine. While our chances of getting BC are scarily high, there is still a good chance you won't get it! Be glad you know your risk factors, meaning if something does happen, it is very likely that you will catch it very early!

    If you feel like you need to do more, just remember that there is no rush! You have the luxury of taking time to figure out what's right for you- take advantage! Take it slow!

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  • jessamine
    jessamine Member Posts: 322
    edited June 2010

    They are not only able to pick up cancers very early these days, but so early that they are considering it a problem, as it leads to detecting so many pre-cancers. So just do your scans and self exams and you should be fine. Us BRCA folks are more likely to get cancer than others but if we do it's no different then any other- IE, it might need chemo or it might not, same as anyone else. It's not any more likely to be metastatic.

    I think the advice you're getting is correct- remain vigilant, but remember that so far, you are fine, and you may never not be fine. While our chances of getting BC are scarily high, there is still a good chance you won't get it! Be glad you know your risk factors, meaning if something does happen, it is very likely that you will catch it very early!

    If you feel like you need to do more, just remember that there is no rush! You have the luxury of taking time to figure out what's right for you- take advantage! Take it slow!

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  • Oddball1
    Oddball1 Member Posts: 65
    edited June 2010

    Thanks...I made a decision today to have the surgery. 

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  • cassou1
    cassou1 Member Posts: 31
    edited June 2010

     i'm considering having the surgery as well, but probably nest year. have time.  being a brca1 positive is not the inherantice that i want,but oh well.  already had the hysterectomy, which only knocks 40% chance of getting bc, plus on tamoxifen-which doesn't help for those who have brca1-what i read anyway.  oddball, are you going to have reconstruction as well? that's my delimma.  please let us know how everything goes for you. 

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  • LISAMG
    LISAMG Member Posts: 639
    edited June 2010

    Kudos to you Oddball1 for making the best decision for you!!! I diasgree with the thoughts of Jessamine that most BC's are caught early. Not so for the many BRCA1 carriers I know, some of which have aggressive triple negative BC with mets despite all [failed] high risk screening tools. BRCA1 carriers tend to have a much earlier age of onset when compared to BRCA2.

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  • Oddball1
    Oddball1 Member Posts: 65
    edited July 2010

    Yes, I will have reconstruction and the PBM in a few weeks.  I am praying it is preventative.  I just got back from a conference and yes, BRCA1+ folks need to understand this is not to play around with....I am literally shaking with what I have learned.  I want to prevent if possible.....don't take your time!!  I know this sounds harsh, but it is how I feel at the moment.  I saw too many statistics on TNBC and it really scared me.  Luckily I had already scheduled my surgery.  Please send good vibes my way as I am approaching my date and will let you know how it goes!!!

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  • Oddball1
    Oddball1 Member Posts: 65
    edited July 2010

    Yes, I will have reconstruction and the PBM in a few weeks.  I am praying it is preventative.  I just got back from a conference and yes, BRCA1+ folks need to understand this is not to play around with....I am literally shaking with what I have learned.  I want to prevent if possible.....don't take your time!!  I know this sounds harsh, but it is how I feel at the moment.  I saw too many statistics on TNBC and it really scared me.  Luckily I had already scheduled my surgery.  Please send good vibes my way as I am approaching my date and will let you know how it goes!!!

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  • Lina1
    Lina1 Member Posts: 3
    edited July 2010

    Hi Oddball1,

    I am BRCA1+.  Two years ago I had a mammogram that was completely normal. I thought I was safe so I took my time choosing the kind of preventive surgery and reconstruction I wanted. Two months later, I had an MRI and discovered I already had breast cancer, a 1 cm triple negative tumor. It was too late for my surgery to be preventive.

    Good luck on your surgery. From my perspective, you are making a very good choice! 

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  • cassou1
    cassou1 Member Posts: 31
    edited July 2010

    gads, the more that i read to all the responses, hope i have time, first in oct. i'll have my mammogram, in november, i'll being seeing my breast doctor, probably then i'll being making my decision.  still kinda recovering from hysterectomy in jan of '10. probably have it in jan of '11.

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  • MRDRN
    MRDRN Member Posts: 537
    edited July 2010
    Oddball 1 
    Hi !  You have a funny name! :)))  This thread is VERY important and timely for me.  I am post op BRAC 1 in Dec, TAH in March, And Bi Lat Mx with immediate DIEP in June!   I was "thinking" about the surgery too, and certainly would never have planned it three months after a TAH for a huge fibroid, but when I did my first screening MRI, Hopkins diagnosed me with Postive Estrogen Invasive Ductal and Lobular BC.  Feel free to PM me.  You will find many on line groups who have some brave women who are willing to share their stories which is amazing to me!  On this site, I advise you to read all the medical expert responses on BRCA.  BREASTCANCER.org in my opinion is an awesome resource!  Since I had the dx of BC via a core needle biopsy which Hopkins did the same day the abnormal mamogram was found and I brought an abnormal MRI to them, I had an answer quickly.  THEN i knew I had some time since it was so small.  My PMD said to follow up with her in a MONTH!  (That was before the biopsy...and I changed PMD"S ) Getting an opinion from two BS was the same statistics....I was so torn too!  It is a personal decision....I was refered to other patients but none of them werre BRCA positive...so going on line was helpful !  One lady called me from New York.  I remember how weird I felt listening to her but she told me more than ANY other health care professional.   She has since followed up and doesn't regret her surgery of PBM.   I feel great....love the result of my new body post DIEP.  You have come to the right place to get support.  Please let us know how you do!  BEST OF LUCK!
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  • Oddball1
    Oddball1 Member Posts: 65
    edited August 2010

    Just wanted to let you all know.... I had a MRI to prep for surgery and they found an area of enhancement....talk about SCARY!!!  Right then and there, I knew in my heart that surgery is no longer an option.  It is so very big to take on but cancer is worse......just in my opinion.  Just thinking I might have to do what my mom did...chemo, etc... and put my boys through it BROKE my heart.  I looked at them the whole time not knowing whether or not it was malignant and felt so sorry for them.  We are very lucky to have this knowledge!!!!

    Good news....the area was fibrocystic in nature and I believe I am okay and breast cancer free.

    Now, on with the surgery scheduled for the end of August.  Ladies, please learn from me.....if you are ready....just go for it.  Don't sit on the fence.  The biopsy was NOT fun and the thought of it turning out the other way, was incredibly difficult.

    They are just boobs!!!!  I am a mother and that is so much more important than worrying about whether or not this is going to surprise me one day and then I will be always thinking...now what and kicking myself for not doing the surgery.

    PM me for any questions on how I became comfortable with my decision and yes, I will keep you posted!!!! 

    Oddball1 

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  • Oddball1
    Oddball1 Member Posts: 65
    edited August 2010

    And, yes, I do respect those who think screening is for them.....if you are not a WORRY WART like me and will not freak out if they find something...then okay.  Just be prepared that once this screening starts for us BRCA folks, they are going to biopsy any area that is concerning just to make sure...and it is very nerve wracking.  Personally, I am not able to just sit around and wait for year after year to know I am okay.  I have decided to not let this put fear into me any more.  I will do what I can do and then let it go.  However, I understand if you are still young, not ready, just learned of your mutation, etc.  And, we all have different history.  My mom had cancer at 33 and died at 42.  I think this is why I get so upset about all of this!!!  Okay...just wanted to say I respect those who are screening...and like I tell my friends, it is not over for me until the fat lady gets on the operating table---in a kidding way.  I am overweight, not huge, but you know the famous saying.  In other words, I may chicken out again, but Lord I hope not and I don't think my family will let me this time.  I am getting prepared mentally this month and asking God to give me peace.  If you would like to send prayers or private messages of encouragement my way, I welcome them.

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  • cassou1
    cassou1 Member Posts: 31
    edited August 2010

    SINCE I DON'T HAVE CANCER-I DON'T WANT TO GO THROUGH WHAT MY SISTER OR ANYONEOF YOU LADIES HAVE ENDURE- WITH CHEMO- TOMORROW I HAVE A DR.'S APPT. WITH MY PRIMARY DOCTOR-AND I WILL TELL HIM- IN NOV. HAVE A APP. WITH MY BREAST DOCTOR AND TELL HER MY DECISSION-SINCE SHE IS ALSO THE SURGEON.  YOU'RE RIGHT ODDBALL-THEY ARE JUST BOOBS AS ONE OF MY FRIENDS' SAID TO ME "THEY ARE ATTACHED TO ME, BUT I'M NOT ATACHED TO THEM". I DECIDED I DON'T WANT TO WAIT UNTIL THERE IS SOMETHING-WITH MY LUCK THE SOMETHING MAY BE TOO LATE.  AND ONE OTHER THING WAS SAID TO ME-MY SISTER DIDN'T HAVE TO CHOICE OF GETTING CANCER, BUT I DO HAVE A CHOICE NOT TO CANCER.

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  • Oddball1
    Oddball1 Member Posts: 65
    edited August 2010

    Yahoo!  

    Cassou1 

    I am sure you will feel peace going forward.  Once that light bulb goes off, it is so much easier for you.  I am glad you have made this decision.  Just make sure YOU personally are convinced it is right for you.  My intention is not to minimize boobs...they are great and wish I could keep them.  I am quite attached to them.  They fed my children and feel great to me.  I just feel the risk of keeping them is too great.  And, they are not as important as cancer prevention.  And, please continue to think positive......that is what got me through my biopsy and will continue to get me through this thing....I am sure you are fine.  Keep us posted!!!!

    Plus you have already had one risk reducing surgery behind you.  Kudos to you...you are one step ahead. 

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  • tweekerbeeker
    tweekerbeeker Member Posts: 93
    edited August 2010

    I'm a little late getting on here, but I would like to add a suggestion to all who are deciding what to do. I found out 3 years ago  that I was brca2+ and wished I had had more resources. Now there is a great book available, called "Positive Results" by Joi Morris. It is a tremendous guidebook full of studies, options, explanations and real life stories.

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