Mom-in-law has CCA: Intro + Q’s
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Andrew,
I would also like to welcome you to our group, although I’m sorry to have reason
To find us. Hopefully, the links provided by Marion and Lainy are useful to you in finding
an experienced medical provider for four MIL, and in determining your next steps. We are here for support and advice whenever you need it.Debbie
Dear Andrew, so sorry to read about your MIL and please keep in mind that we a huge believers in 2nd, 3rd and even 4th opinions. We have a Search engine at the top of the page and if you type in a word or 2, other posts will appear on that subject. May I ask where your MIL lives and where has she been DX? I know she has seen a GP but has she seen an Oncologist? Very ,very crucial to be under the care of an ONC who has dealt with CC. Below is another site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Andrew….welcome to our group. From what I have learned, the excruciating pain may very well be related to the spine metastases. Have you consulted with a radiologist, who may be able to address this issue?
Several major cancer centers also treat a high volume of cholangiocarcinoma patients. We provide a listing: http://cholangiocarcinoma.org/for-patients/major-cancer-centers/
You may also care to peruse our medical advisory board: http://cholangiocarcinoma.org/the-cholangiocarcinoma-foundation/advisory-boards/
or you may choose a center close to your mother in-law’s residence.When making contact with the individual center you will be informed as to which records are pertinent to collect. In general they will need everything pertaining to the diagnosis i.e.doctor’s notes, scan and blood test results.
Please know that patients are entitled to receiving all their medical records. Your mother in-law can request or she can designate another person to request on her behalf. The latter requires a signed document, which will be provided by the individual physician’s office or by the hospital.
I hope for our members to chime in on this conversation and share thoughts with you as well.
Again, glad you found us and please don’t hesitate from asking any question coming to your mind. We are in this together and we care.
Hugs
MarionHey all,
My name is Andrew and my mother-in-law is about to be diagnosed with Stage IVB CCA. I say about to be because we have not yet received the results of the liver biopsy that would confirm the diagnosis.
Two weeks ago her GP sent her in for a CT in response to her complaints of stomach pain and digestive issues. The scan revealed several masses in her liver and subsequent scans (CT and PET) showed additional masses in her thoracic spine (T9), pelvis, and in some of her lymph nodes. A liver biopsy was performed on the day before yesterday and we’re currently awaiting the results.
Aside from introducing myself and the situation, I’ve got a couple of questions to get me started:
1. Are there any good resources that explain how to go about getting high-quality second and third opinions? How do I choose the right center or find doctors with significant expertise in CCA? What are the best practices for collecting and maintaining her medical records? How far back?2. My mother-in-law says she experiences excruciating leg pain and has trouble finding relief in any position, seated or standing. We’ve been to the ER once already due to this pain and I’m wondering if anyone could share similar experiences, suggest palliative measures, or point me to some relevant posts.
I am so glad this forum exists and thanks in advance,
Andrew
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