New Dx: MD Anderson vs. Cleveland Clinic & First Questions to Ask
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Hi Sarah,
This is excellent news indeed, thanks so much for sharing that with us all! My fingers are crossed for your dad for the best possible outcome here and please let us know how it all goes.
My best wishes to you and your dad,
Gavin
Sarah,
Thank you for sharing the wonderful results- we look forward to hearing many more!!!!
Best wishes,
CatherineSarah,
Great news on your FIL! Surgery is what we like to hear. I just wanted to say how much I admire all the research and the approach you took to his care. Way to be proactive and make things happen. Please keep us updated on his progress! Hugs and prayers to you and your family.
MelindaDear Sarah, what WONDERFUL news and as you may be aware, SURGERY is one of our favorite words. A plan is in place and that means all the fright will now turn to fight. Your FIL has such a good chance now due to all your diligence. Like my husband used to say, “now we know whats wrong, lets fix it!”. Wishing your FIL the best of everything and please do keep us updated on his progress for this winning plan!
Hi everyone,
A quick update as it has been a bit of a whirlwind month. We’ve had mostly good news so far!My FIL has been seen by some excellent specialists at MDA. Dr. Schoff is is main medical oncologist and Dr. Aloia is heading his surgery team. He’s been tentatively staged at 2. A MRI and lymph node biopsy show 0 signs that the cancer has spread, and we found out yesterday that he is a good candidate for a liver resection! He’s having a portal vein embolism sometime in the next 2 weeks to kill the side of the liver with the tumor and encourage the other side to grow. 2-6 weeks after that procedure he’ll have the liver resection. They’re looking at sometime late September for the surgery. He’ll likely need chemo following the surgery, just to eliminate any traces of cancer that may remain, but overall his prognosis is fairly good.
We’ve been blessed to have him able to stay at my parents’ second home in Houston and have had some angels on earth who helped get him seen quickly at MDA and have provided support and perspective on this journey.
We’re as hopeful as we dare to be with this diagnosis.
Thank you for all of your support and continued prayers,
SarahSarah, all sounds just great and extremely on time! Also sounds like he already has a winning attitude. That will get him far and he has so much wonderful support, what a team you all are. Please keep us in your loop with updates as we truly care~
Oh and for now he’s trying to just enjoy time with family and gain as much weight as he can before he begins treatment.
Update: the first biopsy didn’t gather enough tissue for a diagnosis. He had a second biopsy and stent placement on Friday that was successful. We’ll get a definitive diagnosis in a few days.
He’s been lucky to be able to get into MD Anderson fairly quickly. Some family friends who have been treated there have been kind enough to put calls into their physicians and it looks like he should be in Houston sometime next week.
Thank you all for your encouragement and advice,
SarahSarah,
I am currently a patient of Dr. Davendra Sohal at the Cleveland Clinic Taussig Cancer Center. Prior to that I was a patient at the Mentor UH/Lake Hospital Seidman Cancer Center.Dr. Sohal is good, but not as aggressive as my desires are. If I all things were equal (but they seldom are) I would go to MDA. From what I read here, they are far more knowledgeable and aggressive. Up until the Fat Lady (valkyrie Brünnhilde) steps up for her aria, I’m going to try everything I can.
You need to determine what you expect from an oncologist and find one who delivers. And remember, this is all about the life (quality and quantity) of a loved one – accept nothing but the best.
Forget the statistics. Some of us pass only weeks after initial diagnosis. Others live for 10+ years. Since you and your husband are the “nerds”, don’t get hung up with “analysis paralysis”. Do the best you can and don’t look back. Right now I’d say that getting started now is more important than finding the best treatment. Have your FIL keep a journal with dates and people and what was discussed, symptoms, what he ate, how much he moved arougn, Depending on the diagnosis, he may be able to slide out with a “simple” surgical procedure. Or he may have to undergo chemo (cisplatin/gemcitibine is the “standard” for initial chemo). Once you get a firm diagnosis, search in here for more details/recommendations.
You can reach any of us privately by e-mail if you don’t want to go public.
You are in good hands here and better hands at MDA. Get moving. You are at step 1. There’s more for you to learn.
Peace,
DukeSara……Second opinions are common practice for confirmation of diagnoses and treatment. Option 1 seems a logical choice. Already they have a relationship with MD Anderson; it is close to where they reside and perhaps can retrieve to when possible. Additionally, they see a high volume of CCA patients (more than any other center in the State of Texas.)
You want to make sure that a multidisciplinary team is involved in the treatment options. If surgery is not advised, I would search for an additional opinion from a surgeon “very” familiar with this type of cancer.
Most likely molecular testing will be recommended. If not so, then I would make sure to mention it.
If radiation is recommended, I would ask what outcome is to be expected.
Have you downloaded the biliary book? It is easy to do and answer many questions you may have. I strongly believe that anyone diagnosed should obtain the information provided in this booklet. You may also order a hard copy.
This link will lead you there:
http://cholangiocarcinoma.org/news/foundation-resources/Hugs,
MarionHi Sarah,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your FIL, but glad that you have joined us here as you are in the best place for support and help and will get loads of each from all of us. I am from Scotland so will not really add anything to the recommended place of treatment for your FIL, but just to say that I would be happy if it was me at either facility. And from what you say re Houston, house and your FIL’s association with MDA already perhaps they would feel easier? Here is a thread regarding treatment facilities mostly in the US that was created by our members here that should be of interest to you –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Like Lainy says, we will be able to answer questions better when your FIL gets more info on his CC re staging and treatment options etc. But of course he should ask about surgery and that being an option etc but I am sure that he will be told that when he is given all the info. From what you say, it does sound like your FIL is in good health and that certainly helps a lot I would argue.
Good on you and your husband for seeking as much info as you can as the better informed you are the better you will be able to help your inlawas when it comes to decision making etc. Good point re the stats, just don’t read them!
Do keep coming back Sarah, we are here for you. Please let us know what is said about everything and I look forward to hearing from you more.
My best to you and your FIL,
Gavin
Thank you! He’s 65 and otherwise in mostly good health (mild high blood pressure and asthma but a very healthy diet and quite active). We’ll know more later this week or next week but are trying to get information for them to go into the first few appointments with.
Dear Sarah, welcome to the best place to be for CC support but sorry you had to find us. Both the Cleveland Clinic and MDA are very good and we have members at both. So, guess I would just let the In Laws be where they are most comfortable. Good for you to have already done so much homework as knowledge is our best tool for fighting this CC. I think a lot of questions depend on how old your FIL is and the form of treatment they want to start. My husband was 73 when we started this journey and his favorite question to the ONC was always, “what would you recommend if I was your father?”. It seemed to work. I think we can better give advise on questions after the staging and DX. Below is a site you may find helpful and please do keep us informed on your FIL.
http://cholangiocarcinoma.org/newly-dx/
Also I’m Sarah! Hi!
My husband and I are both 27. We have a 14 month old who is the light of our lives. We’re both working (him full time, me part time) and graduate students (me full time, him part time). We’ve been together nearly 13 years (yes really) and known each other our whole lives. My in laws are truly like a second set of parents to me, and I could not love them more. I want to do anything and everything I can do to help them through this process.
Hello all! I’m new to the forum. My FIL was given a preliminary dx of cholangiocarcinoma following an endoscopic biopsy/stent placement on Saturday. He’s home now and has his first follow up on Wednesday to get official biopsy results and staging information. My husband and I are the “science-y folk” in our family and are helping out by filtering through the information online to help my ILs know what is helpful and what questions to be asking. He’s currently in Austin, Texas and we’re in Cleveland, Ohio.
Firstly, it sounds like he needs to end up at a cancer specialty center from what I’m reading. My mother and stepfather have ongoing relationships with people at MD Anderson, where my stepfather’s first wife received treatment for pancreatic cancer. My stepdad has continued to fundraise with the pancreatic cancer folks at MD Anderson, and my parents own a second home in Houston where my ILs would be welcome to stay during treatment. My brother lives in that home and my stepsiblings are nearby so they would have a support network. So that is option #1.
As I mentioned, I’m in Cleveland. I have some professional colleagues involved with cancer research at University Hospitals and the Cleveland Clinic here, and my in laws would be of course welcome to stay in our home in their own space throughout treatment. That’s option #2.
All things considered, which center and physicians would you recommend? They have good insurance coverage and are able to take an extended period of time away from work during treatments.
Secondly, as I mentioned, my husband and I are the research team for the family. My ILs have specifically asked us to put together a 1 page work up of information on CC without including mortality/outcome statistics (which they don’t want to know at this point) as well as questions to ask in the first few appointments. I have some good background information from the CCF website and other clinical research center but I’m at a bit of a loss for questions. What would you recommend as first questions to ask in these first doctors appointments?
Thank you for your help!
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