Not diagnosed with progression but worried for my Sister
Hi everyone-Some of you may know me and remember that my younger sister also has breast cancer. Diagnosed at age 50 (age 60 now) w/ILC stage 3B, and once to MO she ordered a bone scan which led to a biopsy and was then diagnosed with bone mets. AIs worked well, Xgeva, and after a couple of progressions she has been on and off Ibrance and switched to letrozole. Currently off of Ibrance.
In May she was having some vision issues with 1 eye, so she went to the eye dr. who found her optic nerve inflamed and she was sent directly to the ER. She was admitted and given IV steroids. Then the testing began. Brain MRIs, spinal taps, biopsy for giant cell arteritis. Also, she had many Dr appts. neuro ophthalmologist, rheumatologist, infectious disease doc, and of course, a visit to a new MO as her prior one (who she loved) retired. This MO ordered another spinal tap which does not show any cancer cells, and she said that after 3 of them they usually determine there is no spread. Her protein levels are off the chart on all 3. However, after ruling out everything else like the arteritis, MS, Lyme disease, lupus, she is left with chronic meningitis which is being cause by a disease or it's a metastasis of the cancer. She has neuropathy in her one leg/foot. She is fatigued and has definitely lost QOL.
Thursday, she has another MO appt. I'm writing to see if anyone is familiar with carcinomatous meningitis. I did find that this can be from breast cancer, but I will not read further since she doesn't have a definite diagnosis yet. I am trying to prepare myself in case. Any info would be appreciated. Thanks in advance.
Carcinomatous Meningitis: Causes, Treatment, and Outlook (healthline.com)
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Oncologist says its leptomeningeal metastasis. She has an appointment today with radiation onco. I'm so sad. I hope since no cancer cells showed in 3 samples of spinal fluid that it's just in the meninges in her head, and that radiation is a good start to get this into remission.
Is there anyone here with this type of spread? Seems prognosis is not good. I can't bury a sister.
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@ctmbsikia, hi! We're so sorry to hear about your sister’s diagnosis. This must be so difficult for her, for you, and the whole family. We hope her treatment works well and brings positive results. And please know that our community is here to support you.
Sincerely,
The Mods
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Thank you @mods. I just want to scream. My daughter (Sis is her Godmother) is getting married next Friday. At the moment just me and my 2 brothers know -so will keep this to myself and not ruin the joyous occasion. I tell my daughter everything, though. UGH-surely, I will need the support. I really appreciate the space.
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Big hugs, @ctmbsikia.
You might find this thread helpful: leptomeningeal metastasis — Breastcancer.org
—The Mods
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I’m so sorry. The timing for that dx is never good, but I’m sending prayers and well wishes that you can be as fully present as possible for your daughter though bearing the sadness and fear. Please post in the brain Mets thread because I think you’ll find knowledge there.
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Spoke to my sister over the weekend. She is so awesome. Her spirits are good. She met with RO who was new @ Penn and young but she liked her. She was mapped for WBRT which could possibly start this week. Doc said it should improve her symptoms and give her a better quality of life. 10 treatments. I hope this works and she will have a long time with us. Especially since her spinal fluid did not test positive, we are hoping the cancer load is minimal and that remission is possible.
I will get to see her this week at my daughter's wedding. We discussed not telling anyone-her girls know, and after speaking with her, I feel much better, and I am much more confident I can hold myself together.
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Since last post the RO at our local hospital reached out to a colleague in the city who is running a clinical trial which they recently stopped and opened to all patients (not just randomized) since they are getting so many good outcomes with Proton therapy. So, she was mapped the day my daughter got married and she made it back in time! Today, she got the call and will be starting treatment this afternoon. I am encouraged that this will work out better for her than the WBRT. Possibly a remission for a very long time.
Last week I met with new MO who is the same Doc assigned to my sister since both our former MOs retired. I really liked her, and I did tell her that my sister was also one of her new patients. She was glad I told her, and she was impressed with my sister's positivity.
So, here's hoping things go well with this treatment.
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So thankful that avenue has been opened for your sister!
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Hi, I'm in the same boat with my sister. She was diagnosed with LMD 1.5 weeks ago. They are recommending whole brain radiation and intrathecal chemo. I'm not familiar with proton therapy.
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I'm sorry to hear of your sister's LMD. Here is some info for you in case you want to have your sister inquire about proton therapy. Also of note this is from 2022. Advances happening all the time and the internet is about a year behind sometimes.
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@aquatx, we're sorry for your sister's diagnosis, but glad you found us, welcome!
Here is an article from our main site about Treatment for brain metastasis that you might find helpful. Also, if you want to connect with other family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis, you can find a dedicated topic about it here: Caring for Someone With Stage IV (Metastatic) Disease
We hope this helps! Please come back and let us know how you and your sister are doing.
Best,
The Mods
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My sister is now on hospice care. Truly unbelievable how fast this progression took her, and how long for all these docs to find it since May. She was only able to get through 4 proton treatments. Then she developed a bile duct blockage of her pancreas, and I believe they found cancer there, maybe in the liver too. I didn't ask for specifics, what's the use? Also, all of them have covid likely from being in the ER for hours on end. I went in to see her yesterday and had to gown up and all of that, so it was very uncomfortable. I stayed as long as I could, told her it was OK to let go. Now, I'm just waiting on the call. I'm heartbroken.
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I’m so sorry for your sister. Sending love and strength to you and your family.
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I'm so sorry, @ctmbsikia . This is a heartbreaking story, and I wish your sister peace.
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I am so, so sorry @ctmbsikia. Holding you and your sister in my thoughts. Love and peace.
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I am so sorry! I lost my sister last Sept 2. To ovarian cancer. She was 48. It’s horrible. Much love and light to you and your sister.
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So sad… we're thinking of you, @ctmbsikia! Our hearts go out to you and your sister during this difficult time.
The Mods
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My sister passed away on 8.27.24. I did see her that day shortly before she went. This is harder than losing my husband. I am absolutely devastated. I quit taking the anastrozole, what's the use? I woke up this morning, my dear sweet sister did not. This was an exceptionally nasty metastasis.
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I’m so, so sorry.
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@ctmbsikia - this is heartbreaking. My condolences on the loss of your sister. (((Hugs)))
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