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Update, Met Dr. Lowy for second opinion

kale1972
Posts: 36
Joined: Jun 2012

So we fell in love with Dr. Lowy!! His game plan was way different than the gastro/onco at UCI, and we liked it better! Dr. Lowy said he does not believe I need to start chemo, but rather he wants to give me about two and a half months to just heal, then he wants to go in to do the HIPEC. We explained that Dr. Bristow said the tumors are numerous, large, and some are intertwined with other organs and it sounds messy. He said he thinks he can handle it. (He had already viewed the CT, path and surgery reports.) BUT, he needs to confirm with Dr. Bristow that my small bowel is not affected by the cancer, or this changes everything. He said Dr. Bristow's surgery report was VERY detailed, and he believes if the small bowel had anything on, Bristow certainly would have noted it, but confirmation is a must! He will order an MRI prior to surgery. He said it will be probably be at least a 12 hour surgery, and he may even need to do it in two separate suergeries if it gets complicated. Dr. Lowy is having his path team review my path reports to just confirm the findings to be low-grade. He was thorough, compassionate, and just plain awesome! I am quite scared of such a huge surgery, but so relieved that he does not want me to do chemo beforehand!! So, we are waiting, healing, I am supplementing and eating insanely nutritious, preparing for the big day!

On Tues I got my port checked and I am cleared to finally shower! I got my staples out, but not the drain. I am still outputting quite a bit of fluid, so they said a few more weeks for that.

Please pray specifically that my small bowel is not affected, and that Dr. Lowy's game plan can move forward smoothly. Also for the path report to confirm low-grade. Please pray for financial provision to help with our almost $5,000 a month share-of-cost insurance. Many thanks!

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

Hang in there. You have had lots of info and things to deal with. Kim

Ruffy7
Posts: 126
Joined: Sep 2011

So happy for you... it really makes a difference with appendix cancers to talk to the right doctors! So glad you connected with Dr. Lowy and, it sounds like you are more hopeful now. Still a very tough road ahead but you are on the right track and can do it!! Even though it's rare... you still are not alone. I found 2 other people in the area where I live that also had appendix cancer. All cancers are scary but it is harder, I think, when it is rare and many drs don't know what to do with it. Keep us updated... I'm routing for you :).

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

So glad that things sound so hopeful for you with this new doctor. I am praying for you!

Kelly

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

and I will pray that you get the best possible results.

Karen

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

GI oncs, even the best of them, if they don't know appendix cancer want to go the "Colon Cancer" route, which is not the best route for appendix cancer. One of my initial consultations was with one of the country's top oncs, but not an Appendix expert, and he was pressuring me to do the systemic chemo first. Fortunately, I also consulted with an Appendix Cancer expert, who explained, and guided me down what has been a very successful path.

While I didn't have HIPEC, I did have major debulking/cytoreductive surgery followed by multiple 3 day sessions of IP (Intra Peritoneal) chemo, which Sloan Kettering feels, at least in my case, is just as effective as (and less traumatic than) HIPEC. I had a very difficult time with my surgery and IP chemo, but am doing everything now. (Off to a curling - on ice - tournament in Cape Cod this weekend!)

You are now in the right hands. It will be very difficult. But you will get through.

All the best,
Alice

kayandok
Posts: 1223
Joined: Jun 2008

I'm so glad you found Dr. Lowy! I attribute my 5 year suvivorship to the right doctor and the right treamtment for my tumor. It truly makes all the difference.
Praying for a strength and peace for you and your family!
Hugs,
Kathleen

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