Looking for someone that has experienced symptoms

mtks
mtks Member Posts: 190
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I am a year and 2 months since I was diagnosed with ILC. I chose bilateral Mastectomy. Neg node involvement. Stage 1

I've had some symptoms- 4-6 months dizziness not alot and it happens at anytime. Even while eating./ My memory has not been the same for about 9 months, it concerns me.

headaches, left and right side, every day

heart burn, continuous belching(sorry, sounds gross) at times I can't breathe deep, pain in chest and ribs meet in mid, sometimes my rt side of my back hurt.

They did an MRI on my brain an am sending me to a Nerologist. Findings in the white matter.

Has anyone experienced this or knows of someone. Sure could use some input right now. Help!

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2011

    Hi. Sorry you are going through this. I don't have all the symptoms you have, but have had some. The heartburn (gone now) and rt side rib/back discomfort. My tumour markers went up too- now I'm on new drugs (zoladex & letrozole) the markers have come down.

    Having BC is scary & makes every symptom make you think of mets...It is hard to relax & trust your body. I hope the findings in your white matter turn out to be benign. At least you and your Drs are on to it & will deal with whatever comes up.

    Hoping for the best. 

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited November 2011

    Dear mtks, so sorry you have this anxiety. Sounds like your bc was caught early. Worthwhile to check everything out, but perhaps some of these symptoms are unrelated to your bc? Good luck and keep us posted. Here for you.

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  • mtks
    mtks Member Posts: 190
    edited November 2011

    Thank you both for you input and kind words. My ultra sound is today on my gall bladder.

    Thinking my heart burn is from my gall bladder. Good to seee and rule it out.

    How do you measure tumor markers and what are they?

    I also forgot to mention my urine was dark for almost 2 weeks and smelled diff. Sorry- again sounds gross, so I asked for a urine test. They found blood and my leukotypes(white blood cells) were abnormal.My PCP put me on cipro anitibiotic and said I had a UTI. ????

    It appears to me I have inflamation going on all over my body. ????

    Thanks again!

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2011

    Hi mtks. I hope your US goes well today, & everything is ok.

    Sometimes things seem to all go wrong at once! Good you are dealing with the UTI, that should help you feel a bit better.

     Tumour markers are done via blood test, there are a couple for BC, Ca27.29 & Ca15-3. I had Ca15-3 done. Before the end of last year I didn't know about them either- my GP told me they were a little high (55 then) but that not too worry- so of course I looked it up to see what it was. I didn't worry till this year when I developped a cough etc. Sure enough the markers were climbing.

    They are not accurate for everyone, but can give a picture of what the disease is doing in more advanced cases.They can also be slightly elevated for benign reasons. Lots of oncologists don't measure them, but they can be another aid in deciphering the puzzle of what's going on.

    Let us know how you get on Smile 

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  • eulabt
    eulabt Member Posts: 194
    edited November 2011

    Are you on any kind of hormone therapy? I ask because I am having some of those symptoms and just stopped my Tamoxifen 3 days ago. I am having an MRI on Monday and am hoping to feel better once my body adjust to not have the drug.

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  • mtks
    mtks Member Posts: 190
    edited November 2011

    Thanks kt1066-I have not had a blood test that measures tumor markers. Interesting.? It might be that my ILC was stage one. But I have read that ILC acts diff.then IDC. It moves to other places other then lung, reproductive organs, liver, brain, it also moves to the gasttrointestinal tract(which includes stomach and intestines) the lining of the abdomine, tissues that cover the brain and spinal cord. I'll keep in touch. I appreciate your input a  lot.

    eulabt- Hi. I am on Arimidex. The side effects are tolerable. Keep me posted on your MRI and prayer to YOU!

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  • Hipline
    Hipline Member Posts: 195
    edited December 2011

    I too have had the dizziness problem but it seems to be when I have a period only.  I am taking Tamoxifen and the periods are going away but I was able to trace it to that.  My biggest problem is digestion, just can't seem to digest or eliminate my food anymore!  Feel like an old lady.  My New Years resolution is to see a nutritionist!

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  • mtks
    mtks Member Posts: 190
    edited December 2011

    Hipline,

    Along with MANY side effects comes constipation, ugh. My onco. told me to take senna-s,everyday. It seems to be helping the cause. update on my ultasound=gallbladder good but saw a mass on pancreas, so I had a CT(body only) all ok.? It seems as though one test leads you into another. And meanwhile you are so scared! I see my PCP today to go over everything. My headaches are still everyday, might be small, might not, dizziness might only last for 1 or 2 sec, but the thorn-like feeling on the right side of my head comes and goes, most of the time it's there. It's the strangest of all. Do you ever feel like you can't talk intelligently at times? Sometimes I sound, well, so wrong! This board makes me feel more normal.

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