ILC breast cancer, thyroid cancer & endometriosis

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texas94
texas94 Member Posts: 204
edited June 2014 in Young With Breast Cancer
ILC breast cancer, thyroid cancer & endometriosis
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  • texas94
    texas94 Member Posts: 204
    edited March 2008

    Hi guys- I am 36, and I've had endometriosis, thyroid cancer (papillary carcinoma), and most recently ILC (invasive lobular carcinoma breast cancer).  I have a very strong family history of breast cancer, but we all test negative for BRCA1/2, so drs assume we fall somewhere in the "unidentified" genes out there.  I am a survivor and doing great now, but wondering if anyone else out there has had similar problems? There's got to be a connection. I am a healthy person!

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  • morgansmom
    morgansmom Member Posts: 134
    edited March 2008

    Hi

    I missed the endometriosis but have had thyroid cancer (2005) and now stage4 idc (2007)  I too consider myself a survivor and try to live everyday as normally as possible considering what has happened in the past 3 years.  I, too, think there must be some connection although every oncologist I speak with seems to think not!  It seems hard for me to believe that someone who is otherwise perfectly healthy and active can have all this go wrong!

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  • mimi1030
    mimi1030 Member Posts: 700
    edited March 2008

    Hello,

    I find this topic interesting.  I am on th boards for my mom who is also stage 4.  But i saw the post on endometriosis and was curious.  I have endometriosis, I had surgery last year as they found that both my ovaries contained 6cm endometriomas in them.  Initially they told me I had ovarian cancer....I had them stripped from my ovaries, luckily they survived the surgery.  I had numerous lesions throughout my abdomen as far up as my liver.  I also have Thyroid disease (Hypoactive).  Although I am thin, never had issues with my weight and still don't.....I am looking to see what your experience has been.  How did you know you have Thyroid cancer? What were the symptoms?  And do they believe your BC is related.  I am 35 so I am very nervous since my mom dx with BC.  She was 49 when dx 4 years ago, she went from stage 1 to stage 4 in that time.  She also has Hypoactive Thyroid.  So you can see my concern, I take after mom for everything.  If you could give me any info on this that would be great.  I am currently on DepoProvera to stop my ovaries working so that the endo doesn't grow back again too soon.  Can this increase my chances of getting BC?  Thank you for any info you can give.

    Michelle

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  • texas94
    texas94 Member Posts: 204
    edited March 2008

    Hi girls, just got back online after the holiday :-)

    Mindy, so sorry about your diagnosis- I hope you're doing well.  I totally agree with you it seems hard to believe they have nothing to do with each other.  I'm in Houston with a top researching oncologist and while she says there's no connection at the moment, she also says she suspects I fall into a genetic category that has not been identified yet (along with my history, I have very strong bc history in family).  She's sure they will use me for studies in the future going on here.  I know they enrolled me in one a few years ago (just took blood), but it ended up not turning out to be anything for me.  I know my 31yr old cousin just got diagnosed, and her genetic counselor is interested in our family history/links of bc, thyroid and colon cancer for a study.  SO when drs say there is no connection, I'm assuming it really means that there's no connection as far as they know yet...

    Michelle, I am NO expert, but I would think the Depo is good for you to be on because it decreases your hormones... I know I take Tamoxifen now to block estrogen, so it would make sense to me!?  I'm so sorry about your mom.  My mom also had bc, but has been "cured" for 19yrs now, so hopefully you'll have the same outcome.

    As for the thyroid cancer, I had a benign large lump that showed up on my thyroid, and it turned out to be a blessing, because when we took a look at it we found a small cancerous lump hiding on the other side (after 6mos of going round and round with an AWFUL but well-known endo in Houston...).  Once I got with good doctors, turns out I was right and something WAS wrong- cancer (I was not crazy needing anti-depressants as the other doctor suggested over and over).  Total thyroidectomy and now I feel so much better than I ever did because my thyroid levels are in the right place now (I guess they never were before).  I am considered "chronic hypo" now b/c I'm missing the Thyroid and also still very thin. As you may know through your experience, I tell anyone with thyroid issues to search for a good doctor to monitor your levels, because FEW of them listen to their patients and only look at blood levels to determine if you're within "normal" range.  I have a fantastic OBGYN that takes care of the "whole" me, and he realized almost immediately I feel better at the high range of normal than if it's lower (a tiny bit makes a big difference!).  Also, I swear by taking Armour Thyroid (name brand only) over synthetics like Synthroid, but that is personal opinion.  All I know is it made a huge difference in the way I feel.

    Glad your ovaries survived your surgery :-) I had a cyst a year ago that took one of mine with it...  again- something HORMONE related!  Our female hormones sure are mixed blessings it seems.

    One more thing for what it's worth- when I was diagnosed with bc I had a PET scan and they saw lesions on my liver (3). Of course, scared me to death, but they told me they are fairly common so not to worry.

    EHK

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  • lewima
    lewima Member Posts: 13
    edited October 2008
    PLEASE" READ!!!  There is some sort of genetic mutation linking all three of these.  MD at Sloan Kettering advised me to get genetic testing.  I have BC and TC.    I searched and found following.  Do more searching though.  GOOD LUCK!!! Leslie

    Cowden syndrome

    From Wikipedia, the free encyclopedia Jump to: navigation, search Cowden syndrome
    Classification and external resourcesICD-9759.6OMIM158350DiseasesDB31336eMedicinederm/86 MeSHD006223Cowden syndrome is an inherited disorder characterized by multiple tumor-like growths called hamartomas and an increased risk of certain forms of cancer. Almost everyone with this condition has hamartomas. These small, noncancerous growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but can also occur in the intestinal tract and other parts of the body. People with Cowden syndrome have an increased risk of developing several types of cancer, including cancers of the breast, thyroid, and uterus. Indeed, women with Cowden syndrome have as much as a 25-50% lifetime risk of developing breast cancer. (Robbins & Cotran (2004). Pathological Basis of Disease, 7th Edition. Elsevier, 1134. ) Noncancerous breast and thyroid diseases are also common. Other signs and symptoms of Cowden syndrome

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  • texas94
    texas94 Member Posts: 204
    edited October 2008

    Thanks so much for the info! I should have mentioned above I've been tested for this gene mutation already (PTEN), and I am negative.  Maybe mine are not linked after all?

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