Determining risk level - best way to stay on top of health

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nicreit
nicreit Member Posts: 6


Hello-


I am probably like so many of you with question marks in my mind about my breasts, breast cancer, family history, how to be educated so that I have the best possible chance of catching cancer early, if it someday comes my way. But my big question is-- how do I know HOW high risk I am? My Mom had breast cancer at age 41 -- I am 41 now. She has had a recurrence of her breast cancer at age 69 & she is Stage IV-- yes, terminal. Her prognosis was 2-3 years & we are at 2 years & 2 months. I am on eggshells as to what the next months & year will hold but, selfishly, I'm incredibly scared for myself! I have a four year-old son who I love more than life itself, & INSIST on seeing him grow up! My Aunt - on my FATHER'S side (his sister) also had breast cancer.


What does all this mean? My OB/GYN keeps telling me I "only have an 8% higher chance than a woman with no family history" but I just don't buy it & yet I can't find a reputable site on the internet to give me my true odds.


Additionally, how can I stay on top of my health so that if breast cancer ever comes my way it's Stage I? I have gotten annual mammograms religiously since I was 29 (all have been fine) & I am going for my first breast MRI next week because I have an occasional shooting, dull pain in my left breast (been this way for about a year).


I just don't want to take any chances & I realize that for every Stage IV cancer victim they were, at one time, Stage I, II & III with a chance to live.


My OB/GYN seems very casual & unalarmed about my family history - which irks me. I want him to take me seriously & I've looked him in the eye & said I want to be on top of my health. He won't even send me for annual blood work, which I would think should be done as a benchmark. My next thought is to meet my Mom's oncologist at UCLA soon & see if she can give me true odds & what to do to maximize my chances of detecting any potential cancer early.


ANY thoughts/advice appreciated!!!!


Nicole


Comments

  • Ridley
    Ridley Member Posts: 634
    edited October 2013


    Hi Nicreit -- sorry about your Mom -- I hope you have a long time left with her.

    I think its great that you have been betting mammograms, but even better that you are getting an MRI, as a lot of women have dense breasts which can make mammograms less effective at finding cancer early. So, I would encourage you to understand your breast density (might say on the mammogram report) and if you have dense breasts, agree on a plan for follow up.

    Given your Mom had BC pre-menopausal, I would also encourage you to see a genetic counsellor to discuss having genetic testing done.

    Good luck.

  • DiveCat
    DiveCat Member Posts: 968
    edited October 2013


    It is important to remember MOST breast cancer is sporadic...70-80% of it. This means 70-80% of women diagnosed with breast cancer have no family history at all! While pre-menopausal breast cancer is not AS likely to be sporadic as post-menopausal cancer, reading these boards alone can tell you for many pre-menopausal women it indeed is and many have NO family history. If your mother is the ONLY person in your family to have breast cancer, your OB/GYN may not be far off in saying your risk would "generally" be assessed to not be THAT much higher than the average (not sure where he gets 8% specifically, but I know many will assess risk at maybe 20% or less if there is an affected mother or sister...the average of 12% + 8% is 20%). It is also important to keep in mind that 12% is a risk based on basically those born today...and is an average. Your actual risk may be much less, or much more. When you see stats like "double your risk", this is not necessarily double the risk of 12% but double YOUR BASE risk...which might be 2 or 4%. Dr. Susan Love has a great explanation of understanding "risk" in her book and importantly, understanding risk percentages. They are often misused I think!


    Less than 5-10% of breast cancer can be explained by BRCA mutations. This leaves 10%-25% or thereabouts as hereditary...but unexplainable at this time. I am BRCA-negative with a high family history (mother, grandmother, two great-grandmothers...every woman in my family in the last three generations before mine). My risk is high (mine is assessed at 40%), and it is believed by my genetic counselor that there are polygenic/multifactorial issues at play or even mutations that have not yet been discovered. Believe me, I understand your anxiety very, very well!


    My recommendation is you speak to a genetic counseler. They will be able to best assess YOUR risk based on your family history (and your family pedigree that may show other cancers), and your personal risk factors (lifestyle, health, etc). They can also make screening recommendations and the like for you and your doctors (and make referrals if necessary) as well as recommendations for any testing, if suitable. If you ARE considered high risk (assuming no mutation), this generally involves (for screening)...annual mammograms, annual MRIs, annual to bi-annual clinical breast exams. Other preventative steps may be recommended depending on the risk and so on. Blood testing is definitely not a regular practice for breast cancer screening...but of course you may wish blood tests for other health purposes. If you do have BRCA mutation, then they add in screening and recommendations for ovarian cancer as well.


    There is however, no guarantee cancer can be found at Stage 0, or Stage 1 for that matter. Screening helps...but it does not provide guarantees. It depends a lot on the screening, the type of cancer (not all is the same and some is harder to detect), how aggressive it is, the location (i.e. against chest wall), and so on. My mother for example, because of our family history, was DILIGENT about screening and checking...and her cancer was not found until Stage 3, at around 6cm, with 19+ nodes. This was because it was ILC which presents as a thickening, rather than a lump, it was close to chest wall, and several mammograms did not pick it up (MRIs were not used on her at time)...it was discovered by chance when she had to get an MRI for another going on in her breast. Even someone with Stage 1 and 1 positive node can have a recurrence...even someone with a tiny, tiny tumour can be diagnosed at the outset with Stage IV. It is scary, and I think anyone who has seen aggressive cancer first hand in close friends or relatives (or experienced it personally for that matter) understands better how all that "catch it early and be cured!" stuff is well.....simply naive. Heck, even when someone gets a prophylactic mastectomy BEFORE cancer...even before Stage 0....they can get breast cancer as breast tissue still remains.


    I don't say this to scare you, just to be aware there are no guarantees. There are ways to reduce risk...be it lifestyle, chemoprevention or preventative surgery (if appropriate for your risk), but screening is NOT a preventative...it is just a tool to *hopefully* catch cancer in early stages. Not a guarantee.


    I do hope all goes well with your MRI! More than likely it is benign and/or a fibrocystic condition (I have sharp pains in my breasts from the latter which cause me great anxiety time to time!) but it is great that you are being checked out just to be sure, and I am sure you are somewhat anxious given your mother's history and that you are now the age she was when first dx!


    I am sorry to hear about your mother's recurrence...is this a recurrence or a new primary? I will say if a recurrence that almost 30 years before a recurrence is a very lengthy period of time...though I know that is small comfort or relief as cancer sucks no matter how much time you get in between.

  • nicreit
    nicreit Member Posts: 6
    edited October 2013


    Hello Ridley & Dive Cat-


    Thank you so much for your responses & all the great info.


    Yes, I am realizing that there is no such thing as preventing breast cancer - even with diligent mammograms, exams, MRIs, etc. My Mom - for example - had a mastectomy (from her cancer 27 years ago) & did annual mammograms & self-exams & both were clear just months before her Stage IV diagnosis. There was also no lump-- the only thing that tipped her off was that she was having troubles swallowing. Also, Dive Cat, this cancer, say her oncologists, is a recurrence of her cancer 27 years ago. They theorize that perhaps some cancer was missed during surgery & has been passive (or slow growing) until recently.


    I am going to a GP who I know well because my OB/GYN just has too nonchalant of an attitude for me. I don't take this lightly, & don't want my Dr. to do so either. My #1 question is about getting connected with a genetic counselor. I also wanted to ask how people afford annual MRIs... I was 1 day away from getting mine when & had to cancel when I learned it would be $2,100 OUT OF POCKET (& I have insurance, albeit not great insurance/high deductible). This was at a local hospital, so I'm trying to get a 2nd quote at an outpatient place.


    And yes, breast cancer (cancer in general) has made me lose some sleep. Mom is Stage IV & in her 2-3 year "prognosis zone" & my Dad died of prostate cancer 10 years ago (age 63-- when I was just 31). Cancer will take 2 of the people who I love most in this world & I'd like the best shot at not going the same way.


    Nicole

  • Ridley
    Ridley Member Posts: 634
    edited October 2013


    Nicole,


    Sorry about the MRI. I'm in Canada, so don't have to deal with insurance when the doc orders a test. Hopefully some others can help.


    Really sorry about your parents as well. I know the feeling of hearing your parents have cancer. My mom is a 9 year bc survivor, and my dad had prostate cancer about 8 years ago, and then kidney cancer almost 2 years ago. They are both doing ok now, and I need to remember to be thankful every day for that.


    Take care,

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