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I was told I am incureable, I may not do chemo or surgery

kale1972
Posts: 36
Joined: Jun 2012

Yesterday I met with the new hematology oncologist as well as my original gyno oncologist. After explaining that they are not 100% certain of the cancer origin, but most likely it is the appendix, which is extremely rare, due to how much it has spread throughout my abdomen, that I am a stage 4. They described the plan to do chemo every 2 weeks, and at every 2 months I need a CT scan to determine if the tumors are shrinking. When they feel that the tumors have shrunk enough, they will consider doing another debulking surgery with HIPEC. We point blank asked what my survival rates are, and he said 6 months to 2 years depedning on how I respond to treatment. I asked what if I do nothing, how fast will this kill me. My gyno onco said probably slow, maybe I would start having problems in 1 year. The issue would be organ failure would start. I currently have a drain coming out of my stomach. They will take that out on Tues. I am afraid of my stomach continuing to fill up with ascites and how that will affect my organs and my discomfort, as I had much discomfort before from the massive ascites. My gyno onco was super supportive of my considering not doing anything, he understood why I would not want to go through treatments if in the end, I die anyways. My tumors are large and numerous, they are not even sure that I am going to be able to have another surgery. I am getting a 2nd opinion with Dr. Lowy at UCSD next week. I am also starting holistic care at The Whitaker Wellness Institute tomorrow. I know there are many people who have lived long lives after HIPEC, but I just can't see myself going through all of that, and chemo beforehand. I would rather live whatever time the Lord gives me with my 5 young children and husband, and not in constant treatments. I am praying that my holistic treatments will support and build my immune system and give me more time. I am currently reading a book, Natural Strategies For Cancer Patients, by Russell Blaylock M.D. I highly suggest it! Thanks to everyone here who have answered all of my questions and been a great support system. I will keep updating as things go along. I'd appreciate tons of prayers, especially for my 5 precious children, my husband, and my mother. Many thanks!

Ruffy7
Posts: 126
Joined: Sep 2011

Please don't let this get you down.... I have talked to people (despite how rare this cancer is) that also were stage 4 and have recovered from the surgery/chemo, etc... This is so scary, I know. I'm so glad you are meeting with Dr. Lowy. I think alot of docs never see this type of cancer and often don't give much hope for it.. that's why it's so important to see specialists with experience with it. Keep fighting, especially for your kids' sake! As others have said, just take it one day at a time. Sometimes the big picture is too overwhelming to take all at once. My prayers are with you and your family! Hugs, Ruffy

Tethys41's picture
Tethys41
Posts: 1053
Joined: Sep 2010

Kale,
I suggest you see what Dr. Lowy says. He may have a completely different perspective, as he specializes in this type of cancer. If his prognosis is as dismal as this one, I suggest you consider some heavy duty alternatives. My friend's husband was diagnosed with inoperable pancreatic cancer. His doctor offered chemo, but said it would only give him, maybe, another 9 weeks. My friend did not like what the doctor was offering, so she sent her husband to the Oasis of Hope hopsital in Mexico, for two weeks of alternative treatment. He returned for two one-week followup visits. By the third visit, his cancer was gone, without chemo. I went to the same hospital for integrative treatment during my chemo.
You will get many people on this board who will urge you to get chemotherapy. Frankly, those of us here are fortunate in that ovarian cancer is generally very responsive to chemotherapy. Many other cancers, however, are not. Studies even show that for many cancers, chemotherapy does not affect survival rates. Yet, the AMA allows oncologists the option of treating, if they choose to.
Consult with the experts, but research your alternative options as well. The oncologists only know how to treat with drugs, but there are other, effective options available as well. Good luck.

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

whatever decision you make for yourself, I too urge you to check out all the possibilities. And even though it is almost impossible at times, I agree that you should try to take a day at a time. It is a lesson I have learned. I try very hard to stay in the moment and not look too far ahead because when I do I drive myself crazy.

My best to you. You have so much on your plate. The hardest part for me to deal with is watching my family go through it so I cannot imagine what it's like for you with your five babies.

You are in my thoughts and prayers.

Karen

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

with extensive mets throughout my peritoneum, omentum, outside of my colon and small intesting, on my ovary.

Oncologists who are not specialists in this type of cancer DO NOT KNOW. Even renowned experts in other areas of cancer, even colorectal specialists don't know this one. I am glad you are seeing Dr. Lowy.

My year of treatment - surgeries, chemo, intraperitoneal chemo - was the hardest thing I ever did. If it would have only given me a few months, it would not have been worth the pain and suffering I went through. But I am now living a normal life.

On another note: mine was a slow-growing tumor type. I was told without further treatment it would likely be years before it came back; with treatment, they are hoping to extend 5 years to 15-20 years, or possibly never coming back. The same tumor type that I had, if it were in my colon would have had a poorer prognosis.

Speak with Dr. Lowy. He is an Appendix Cancer expert.

Alice

Plan to be here for your kids and husband for a while.

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

I know it is hard to hear and you have your children to consider (you wanting to spend qulity time w/them) but please do not give up all hope. I was told that were my new tumor is they will not be ableto remove it I will be in treatment for the rest of my life. I am not ready to die so I will continue and who knows they may find the one I need to be healed. The choice is always yours and I am praying for you and your wonderful family but please do not give up hope because without hope you have nothing.

Much
Love, Hugs, and Prayers
Anne

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I am so sorry you have to make such difficult decisions. There is a man on our street who had appendix cancer and it had spread to the peritoneum and he saw a doctor at the University of Pittsburgh and had surgery with HIPEC after some chemo and to the best of my knowledge he is doing well. Your situation may be very different but at least I hope you check out all the options and at least get a second opinion. Praying for you.

lovesanimals's picture
lovesanimals
Posts: 1209
Joined: Sep 2011

My heart goes out to you and your husband and your five precious children. Please, please let us know what Dr. Lowy says.

Sending you prayers and big hugs,

Kelly

marieinlv
Posts: 39
Joined: Aug 2011

Oh Kale, I'm so sad to hear how low you are at this moment. My Mother had neuropathy after some strokes and heart attacks that nearly killed her. There was a moment when the pain was too relentless, she said to me, " I wish I hadn't survived". I said to Mom, " I'm so glad you did, my kids are cray about you". When Mom did go to our Savior my kids were old enough to have awesome memories that they cherish.
I was dx with UPSC stage IV, 11/17/10. I did surgery, chemo, and 6mos of Femara. I do have days of sadness wondering. Mostly I Love this Crazy Beautifull Life! I won't give up untill Jesus comes calling like Moms, when it's too dark to play outside anymore. You're thought of more highly than you think and Loved even more! Gods Peace,
Marie

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry you've got some tough decisions to go thru, take your time and seek other opinions. Not every doc is "doom and gloom", so keep on moving until your gut tells you this is the right direction.

I'm the ultimate optimist, never ever giving up....you need to get the fire under your butt and be here for your 5 beautiful children. I've seen many, many cancer patients looking at a death sentence with a cancer diagnosis, only to find they are beating the odds and continuing to live way past the days the doc told them they'd be gone.

Keep the faith as remember -- YOU ARE A STATISTIC OF ONE!!!!!

Sending positive vibes...
Jan

susan rose
Posts: 6
Joined: Jun 2012

You are incredibly strong and I am adding you to my prayer list along with my aunt and best friend. They are going through chemo right now. I lost my brother in a car accident 15 years ago. Here one day and gone just like that....didn't get to say goodbye, so none of know how many tomorrows we will have...we all must make the most of each day a time.Susan

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