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Newly diagnosed and need surgery

leslyelaw
Posts: 11
Joined: Oct 2019

Hello. I was newly diagnosed with signet ring cell carcinoma in my colon. Seems the terminal ileum, ileocecal valve and cecum ate affected. CT shows non metastatic. But when I read about this it’s scary. Diagnosis was from biopsy during colonoscopy. I have kaiser. I hear mixed things. I’m meeting several surgeons because I’m terrified of surgery. I have a partial blockage due to the tumor. What is the success rate for surviving surgery? I don’t want to die on the table or from complications after surgery. I want to hear your success stories. I wonder if anyone had this kind of colon cancer? What is the quality of your life with surgery and treatment? I’m so scared and need support. I’m 60, weigh 91 pounds, and mist of my bloodwork has been good. Trying to trust...since I dont have the funds to go to “the best“ hospitals. Thank you 

cinda
Posts: 33
Joined: Jul 2019

I'm sorry to hear your health brought you here. I was told I had colon cancer 1 year ago and to this day all I do is test after test. I have a partial blockage also.  There just now talking about surgery and I feel the same way you do.Mine is on the cecum area and also the opposite side in the lower colon. They can't figure out the cecum part as it showed on my pet scan and can't get a scope to this area. So they want to cut my colon and pull though a hole in my stomach and then put a scope through it. so I understand scary.. I 'm not much help , but to let you know your fear is normal and that someone cares. 

        Cinda

leslyelaw
Posts: 11
Joined: Oct 2019

I'm sorry to hear about this with you too. It seems we have similar things. How have you been living with the partial blockage? I've had to eat basically very low fiber foods and liquid diet. I weigh 90 pounds now...and I have pain when i try to eat new things. The pain is so bad sometimes...but it's in my stomach area. I had an endoscopy but no cancer in my stomach. My doctor got the scope as far as the cecum and took the biopsies from there. Couldn't get past that though. But the CT and MRI show thickening in the ileum too. Are they considering removing your colon? I will meet with one surgeon today and get more info. I have no idea, i'm lost, and having signet ring cell sounds like a poor outcome...so i hope to meet people who have this and have survived! I'm trying to stay hopeful and will update you when i get more info. Thank you for responding and sharing your care...I am here for you too!

Leslye

cinda
Posts: 33
Joined: Jul 2019

I went today for a pap test and pelvic exame at a specialist. He says it looks like the cancer and tumor has went to that area. have to get a urtasound to check. Just had that test on my colon. seems like they would of noticed, You should go though the postings and see if theres a listing talking about what you have,You can get a lot of info that way, Theres people on here a lot sicker then us that have made it and even became cancer free. read post and find some hope.I eat the low fiber diet .no nuts ,fresh fruit, raw vegs.no seeds.They say try to get your protein up,I can pass stool but only small bits at a time. so I get stomach achs from back up. one page has a page on idea of what to eat, I go look and write and tell you what its under.

 

leslyelaw
Posts: 11
Joined: Oct 2019

Same for me with the diet. And the poop. Every few days some passes. The doctor said as long as you don't start vomiting, and can pass gas, it's ok. I'm trying to get some variety...i bought some organic apple sauce and had a few spoonfuls because i'm getting tired of white rice and tofu. 

I also get stomach aches if i eat too much..or even if i don't. The dietician said to eat small amounts of protein (protein drink, egg, tofu) at a time, and graze thru the day. Also less fats at one time. I'm trying to put a lot of oil and butter in my food because i'm trying to gain weight. I lay down with a heating pad on my tummy. 

I'll look up old posts...thank you. And i hope you don't have cancer in your cervix or anywhere else. 

Butt's picture
Butt
Posts: 318
Joined: May 2018

It a tricky cancer and I strongly suggest the second opinion in something like MD Anderson.

leslyelaw
Posts: 11
Joined: Oct 2019

I met a surgeon today and really appreciated her. She said, because it's a rare cancer for colon cancer, she's bringing it to the tumor board before proceeding with any treatment. I'm really appreciating the doctors i'm meeting. I cannot travel to Texas in my condition so i need to stay local. I appreciate she took the initiative to do this...without my asking.

 

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

Welcome to the group and sorry that you are here.  I'm not able to help you with your type of cancer, but you have come to a great group and there are people on here that have dealt with what you are going through.  Wishing you the best.

Kim

Steelkiwi686's picture
Steelkiwi686
Posts: 52
Joined: May 2019

I had a mass in my cecum that broke through (my terms) the Colon itself and I also had a huge mass on my ovary - this was after going back and forth with various testing and biopsis and believing I had a gynecological cancer. Turns out it was colon cancer. It was determined through pathology after a full radical hysterectomy and a resectioning of colon itself. I also lost my appendix during the surgery as it was caught up in the large mass. I felt lucky to have my surgery quickly because by the time it was diagnosed I was in real pain those last few weeks.   

I was also lucky enough to have a gynecologist oncology surgeon who was also prepared and equipped to do colon resection if it was found to be necessary ( yeah it was) 

Next I started chemo 5fu with oxy and avastin with neulasta shots two days after each treatment. 

At one point early in this process, a scan showed two lymph nodes with issues and a suspicious smudge on my liver.

This made me stage 4.

By following JanJanand others on this forum I started shifting my thinking to accept I may be one of those who are on chemo forever. 

I never realized how many people Live with cancer and so I figure I can do the same if necessary.   :) talk about an understatement 

On the day of my one year anniversary of undergoing chemo I unexpectedly was declared NED (no evidence of disease)and I was given a two month break from chemo.  That break is almost up and I go back in about two weeks for new scans and to find out if I get another chemo break or I go back to the once every two weeks routine.  Obviously I hope I get another break but feel like the support in this group and the stories I have read have helped me keep a cool head and enjoy this time whether or not it includes chemo. 

There IS Life with cancer and where there is life, there is Hope.

 

Trubrit's picture
Trubrit
Posts: 4859
Joined: Jan 2013

I travelled 300 miles to chemo and then had to live in the big city for Radiation. I could not afford to go across country to the 'better' hospitals.

I was pretty much 100% happy with all of the treatment I got at the hospitals, Chemo center, Radation Oncologist. Both my bowel resetion surgeon and liver surgeon did their job right, and I am now Stage IV surviving 5 years. 

While you do have a more complicated diagnosis, when you can't afford to travel, you do have to find the best that is closest and then trust that they do their job. 

Learning things here on the forum, will help you 'know' what is right.  Don't be scared to speak up if you feel something is'nt going how you think it should be.  Make sure your Oncologist/Surgeon/Rad Onc gives you the time you need to go over all of your concerns, every time you see them.  Be your own advocate. 

I will address some of your questions.

Success rate for surviving surgery is HIGH. I think that is the least of your concerns right now. I have had 11 surgeries (not all Cancer related), and lived through every one. 

Quality of life after surgery:  Well, that depends on your body. Every one is different. I have several long-term side effects from surgery and treatment. Every one of them I can deal with because I am alive and happy. Annoying, yes. Inconvenient, yes, but being alive beats being dead, and if I have to suffer through a few things, so be it. 

Support: You have found a good place to come to for help and support.

Weight: One of our forum members - Grace - weighed 72 lbs.  She was tiny to say the least, but my oh my, she was wirery and tenacious. She was on chemo for life, and still did yoga, gardening and managed her chickens. Learn all you can about diet and nutrition and find what works for YOUR body. There will be times when you don't want to eat, or just can't face it, so drink those protien drinks - Ensure is one of them, or make your own, using yogurt, milk.  You can do it. If our dear Grace (she was in her 70's) can do it, so can you. 

Welcome to the forum, I am sorry you have to be here, but here is good.

Come to us often and we will be with you all the way and then, one day, you can be here for someone new.  

Tru

leslyelaw
Posts: 11
Joined: Oct 2019

Thank you for all your wisdom and word of encouragement. I’m so glad I found this forum, to hear people’s survivor stories, to hear what people go through and still have all the hope and resilience. It means so much to me. And yes, I hope to be able to offer comfort and hope to others as well. I’m forever grateful to have found all of you. It feeds my spirit when I'm feeling down, it is balm for my soul. To feel understood by so many, to get helpful advice about proceeding into scary places...thank you!!!

leslye

SoCal42's picture
SoCal42
Posts: 60
Joined: Jul 2017

I have Kaiser also, and in Southern California, they really are one of the best hospitals. Oncologists will often take a question to the Tumor Board, where they can get experienced opinions from a wide range of other specialists all at one time. Not just other oncologists, but raditaion oncologists, surgeons, pharmacists, etc.

leslyelaw
Posts: 11
Joined: Oct 2019

Thank you. The surgeon I met with did say she was taking my case to the tumor board before scheduling the surgery. It makes me feel better hearing how much you like kaiser too. Sometimes, friends tell me I could/should look into other options and I get overwhelmed and feel unsettled. I am happy with the Cate I’ve gotten at kaiser so far. I’m going to soak in your positive words and begin to trust and try to let go of my fear and worry about surgery. Sometimes I get feelings of “I can do this!!” And sometimes I break down and feel defeated. I’m going to focus on the I CAN DO THIS more! I see on this forum the strength and support. Thank you!

SoCal42's picture
SoCal42
Posts: 60
Joined: Jul 2017

So I'll also reveal that before ALL THIS happened, I was a doctor and a department chief at Kaiser, so I know how everything works behind the scenes, including everything that's done to maintain high quality and deal with any quality questions or issues. No doctor or healthcare system is perfect, even though they want to be. Some things can go wrong, sometimes things are out of everyone's control. But one good thing is that doctors there make the decisions. The doctors all understand they need to make effective decisions and not be wasting money on treatments or tests that don't make sense, but the doctors really do make the decisions.

cinda
Posts: 33
Joined: Jul 2019

Someone put a list of food ideas under the heading( beginning radition for rectal cancer) Check it out it might help. My thought and prayer our with you.

 

leslyelaw
Posts: 11
Joined: Oct 2019

Thanks. I’ll check it out!

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