I’m back

Ihopeg
Ihopeg Member Posts: 399
edited October 2018 in ILC (Invasive Lobular Carcinoma)



Hi ILC sisters, it’s been 12 years since my diagnosis. I was great after the 5 years of Femara, then in 2015 I had papillary thyroid cancer with thyroidectomy and a dose of radioactive iodine. That was fun. Now, October 5, 2018, I am now diagnosed with leptomeningeal disease and 99 % bone mets to entire spine and pelvis!!! My only symptom was in August I started getting floaters and shooters in my eye. Went to Wills Eye Hospital in Phila all was fine. But, I was having pins and needles in my left toes. Went to foot dr. Said buy danskos lol. Was moving a little down foot, so I called primary dr and he did bloodwork. Only thing wrong was high calcium. 10.5. So I google what caused it and get lumbar and spine X-rays. He calls me next day and says sclerotic lesions. Call onc. I call her and tell office to look at xray. She had me get mri. Mind you I had a clean bone scan in Feb this year. Calls my cell phone the next day while at work and tells me I have leptomeningeal disease and says go to er. My manager at the bank I work made me go into her office and she called my adult kids crying. They take me. Fast forward to spinal tap and had a ommaya reservoir in hospital. Giving me methatrexate thru that. I have bone biopsy Tuesday to find out er/pr her2. As of today, no brain symptoms only numbness in feet and also not good, I can’t feel my butt or anywhere else near there. I feel great but I’m not. Don’t like my onc. Changed to her after mine left in 2010. She never had to treat me only send me for tests. I wish I was on femara 10 years! She said no back then. It wasn’t protocol. So hear I am. Thanks for listeniing. Valerie Harper the actress has had this since 2013. I am going to go to university of Penn hospital as soon as diagnosis from breast cancer. Oh and forgot to say had melanoma in 2001. What a horror story. I’ll go anywhere in this world so I can get old for my kids! Ilene
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Comments

  • dakrock
    dakrock Member Posts: 99
    edited October 2018

    Ihopeg  

    I am so sorry to hear all that you are going through   What a nightmare.  I too have ILC had surgery in February 2018.  Now I also have melanoma on my face which I had to have removed.  I have to go back in and have more taken out.  What a scar across my cheek bone.  I am a nervous wreck so I feel your pain and anxiety.   Please keep us posted on the bone scan. 

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited October 2018

    Hi!

    Thanks for your post. So how are you doing? ILC sucks! I’m sure that it’s bettr now that’s its 2018 rather than 2006! It’s great you didn’t have to go thru chemo and radiation! I had melanoma on my leg and just had wide excision with sentinel nose biopsy negative for melanoma in 2001.l had a removable cast and crutches for 3 weeks. It is about the size of salami and they did a skin graft to cover it. I Just go to dermatologist every 6 months and he takes off moles all the time. Some said they were pre melanoma. How was and is reconstruction? I couldn’t have it right away because Iof radiation. Also, make sure that they let you stay on Femara 10 years. Back in 2011 took me off because that was the protocol. Begged but no. What did the biopsy say about the melanoma? Make sure you take calcium and vitamin d3 since you aren’t supposed to go in the sun! I love the beach and sit under an umbrella and put 50 sunblock on and still get a little color. Looks good.
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  • vlnrph
    vlnrph Member Posts: 1,632
    edited October 2018

    That is quite a history Ilene - especially for someone who seems to be pretty young! The biopsy today should help guide treatment. Penn is probably a good place to go. You need an experienced team on your side.

    Don't be too hard on yourself for stopping aromatase inhibition. Some of us couldn't even tolerate one year. Those cancer cells are so crafty, they sometimes learn to turn off their estrogen receptors so become resistant to therapy.

    Has there been any thought given to genetic counseling? Even with minimal family history, mutations might be present which would possibly provide valuable information for your kids to plan around.

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited October 2018

    Thanks for your reply! I actually met Dr Weiss. It was a Breast cancer symposium near my house that I found out about the day before. Everything happens for a reason. I met a genetist there and she said since I am Jewish and had different including melanoma and thyroid cancer. She’s said do 23 and me only the history part and make an appt. She said i need to do this. I had b r c a testing 1 and 2 and my ex did too. Both were negative. She also said that there is so much more now. Thanks Ilene
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