Too many tumors to count... newbie here

[gemini47630]

I am new to this group and so glad that I found it. The last month and a half has been a whirlwind and I am scared and lost and I am looking for help. Please read my journey so far and let me know anything, anything at all even if you just want to say my post is too long, i will shorten it and repost, help...

In March 2017 I had ear pain, was always exhausted and nausea with vomiting almost every day, I was also under a lot of stress at work as well. Primary care doctor sent me in for blood work found out I was severely anemic she wanted me to see a digestive doctor, I wanted to see an ENT because I was sure everything tied back to my ear pain, who cares about anemia aren’t all women anemic anyway. I told her I would go and then I went to an ENT who actually came into the exam room with one of the metal circle things on his head that you see in cartoon doctors he told me I have nerve damage from the way I watch tv and would need shots in my neck again I felt the doctor was wrong so I left and after a few more weeks of the ear pain and daily vomiting I went to the digestive doctor who told me “you are bleeding internally and in danger we need to do an endoscopy tomorrow” well that scared the crap out of me thought this is crazy wouldn’t I see blood somewhere? But I agreed and did the endoscopy, (I am a HUGE chicken) nothing showed up that was causing the bleeding. Doctor told me you need a colonoscopy as soon as possible. I am 39, no way he’s crazy too. I told him I would schedule one later. After two weeks my family convinced me that I needed to have this done. I know it may sound like I am a know it all and it’s probably the way I am telling it but that isn’t it I am a chicken and work always comes first. I was exhausted, I couldn’t keep much food down, I was working 50+ hours a week and my ear was killing me. Preparing for the colonoscopy was a nightmare. I’ve never been much of a drinker (not alcohol) meaning I may drink two glasses of milk and a glass of lemonade in a day and keep in mind almost six months of not eating very much and vomiting all the time made trying to drink that stuff in the time frame and keep it down was pretty much impossible but I tired really hard and it was bad I ended up having to switch meds in the middle of the night. So I’m starting to wake up from the colonoscopy and I hear the doctor saying to my sister and mother I need to talk to you over hear. They walk away the nurse leans down and politely whispers “you have cancer sweetie”. Holy crap, this isn’t real I’m trying to open my eyes and see what is going on and find the doctor. I see my mom and my sister crying with the doctor and they are heading back in my direction. He grabs my foot and says well we did find a 3cm polyp and I brought it out if you want to see it we had to cut it in three places to get it out. I’m still groggy trying to keep my eyes open and focused. He then says we also found a rather large tumor in your transverse colon we had the surgeon come in to see if we could try to remove it he didn’t think it was a good idea right now. I have called over to the blah blah place and have scheduled you for a CAT scan and blood work within the hour. You need to go now you cannot wait. I have scheduled you with an appointment with the surgeon who came in during the procedure for Wednesday (today is Monday). I still didn’t really understand what was going on I was tired and groggy. The nurse walks me into the CAT scan tells my family I should be out in 15 mins top. After the first four hold stills she tells me to hang on she has to call the doctor and make sure she is getting what he needs. Next thing I know she comes in with a phone attached to her head and moving me all around scan hold still scan hold still about 30 minutes more of scans her smiles are gone she helps me back to the family and apologizes over and over about talking so long. Go to see the surgeon on Wednesday, I’m thinking how bad could it be cancer is cured everyday they will just cut it out and I’ll be okay. Surgeon comes in and looks like he is going to cry and tries to explain that I have a rather large tumor and it has spread to my lymph nodes and liver. Didn’t see the tumors in my lymph nodes just some spots but that the cancer could have only gotten to the liver thru the nodes. “So…. How bad is this?” he replies with “you have stage 4b there is nothing I can do, it can’t get any worse you are at the end stage. We have setup an appointment with an oncologist for Friday for you the hospital has set you up with an advocate that will help you. I am so sorry.” He looks like I hit him with a Mack truck not the other way around. I’m at the end stage what? I’m dying? I’m just tired; I don’t feel like I’m dying…. I meet with my advocate who is a lovely nurse who shows me in a book what stage I am at to try to help me understand. I’m still trying to come to grips with being told I have cancer and within 48 hours it the worst it can be? I meet with the oncologist who is down to earth and talks to me like I’m a human. She tells me 6 months of chemo will hopefully shrink the tumors enough so I can go off of chemo for 6 months and then it’s back and forth six on six off until it stops working. My family asks about transplants and radiation she says I am too far gone. I ask what happens if I don’t do chemo she tells me in her experience I won’t make it past January and explains what will happen as I die. She explains that the tumor in my transverse colon is so large there is barely any room for things to get thru and that my liver is riddled in tumors.

Too many tumors to count… So I found this group and was scanning some posts and saw people gave details on sizes of tumors among other things. Right before my third chemo treatment I asked my oncologist about the size of the tumors and the amount she tells me there are too many on your liver to count (ummm okay) sizes all different sizes some small some large. She then tells me we have good news after your two iron infusions you are up a pint of blood you were over a liter low. WHAT no one ever told me that ever…? I asked my doctor on this visit as well are we doing this for a cure or a treatment she explains again treatment for some reason I cannot grasp the thought of living like this for the rest of my life. She kindly explains we are just trying to prolong your life. Just typing that sentence I am crying again. I was told I cancer on August 7th, in 1st chemo treatment by august 21st. I’m scared I don’t know what to do. I called the mayo clinic last week for a second opinion and they told me they would review my records and let me know if a trip was worth it they got my records and just called to tell me that the person spoke in error and they don’t do that but they have reviewed my records and are ready to schedule my appointment. My CEA has been rising started at 105, 157 now 213.

Help… anyone else out there with “Malignant neoplasm of transverse colon, Secondary malignant neoplasm of liver and intrahepatic bile duct” or any insight on what I should be or should be doing or what in the world that means. Should I be maxing out the credit cards and going crazy is there hope? Anyone know of any food I should or shouldn’t be eating? (doctor says stay away from nuts, popcorn and fruits and veggies but eat anything else you want. Problem is I don’t want to eat nothing sounds good.) Is there a expert doctor I should be trying to see? Should I go to the make the trip to the Mayo Clinic? I am so lost.

Thank you for taking the time to read this.

[susie0915]

Omg. I'm so sorry, I was in tears reading your story. I say you do everything you can to live. If the Mayo Clinic is willing to see you, go. There are many stage 4 patients here who have been cancer free for years. Please don't give up. New treatments are always being discovered and as you respond to treatment you may become a candidate for something else. I'm praying for you.

[Lee]

Not sure where you are, butt can you get a 2nd opinion at Sloan Kittering Memorial Hospital in New York City. Dr Kemny and team have had great success treating liver met, especially those people who have been told there was nothing more they could do. Or if that is not possible, please get a 2nd opinion at a Major Cancer Treatment Center. Some hospitals are better than others and some doctors are better than others.

Where are you?

Please don't give up the hope just yet.

Lee

[Kay1982]

I am very sorry to hear about your diagnosis. My heart is broken.
I have not been diagnosed but will see a gastro physician this week. I am petrified at what he may find. I have been having nausea, pain on my left near ovary, blood in stool and recent labs showed anemia. I've talked to my physician about all these symptoms which were blamed on a bad gallbladder. I will be praying for you, you're so young but I have read that stage IV survivors are very common. Do not give up sweetheart.

[gfpiv]

You are right not to give up...certainly not after just one opinion. Upon dx I had metastasis to my liver...also too many spots to count - as well as my hepatic portal lymph nodes. Thanks to the miracle workers at Sloan Kettering in NYC (and HAI hepatic pump treatment), I am still here - with no evidence of disease, knock wood - 7.5 years later. HAI is not right for everyone, and I'm not sure if Mayo would mention it, but at least they are a great hospital for a second opinion. Not sure what bile duct involvement you have, but I would definitely recommend looking into other potential options for treatment to be sure you have given it your best shot. This is a fantastic place to educate yourself, and there are a lot of nice, helpful and knowledgeable people here. Feel free to PM me if I can help at all. And best wishes as you meet the challenges ahead.

-Chip

[Mandabee703]

I am new to this all also. 38 yo single mother of 4, stage III colon cancer. I dont have the knowledge or resources so many others here have, yet. For what its worth, I am praying for you. Try to stay positive. Find anything good around you to focus on. It is the only thing that keeps me from losing my mind. Definately get a 2nd opinion.

[Lee]

. . . She explains that the tumor in my transverse colon is so large there is barely any room for things to get thru and that my liver is riddled in tumors.
.

Chemo should help shrink the tumor, butt if it gets to big, there is a surgical procedure where they by pass the tumor, thus you can eat again. It's either going to be a colostomy or ileostomy.

Please know there are immune type therapies that are changing the landscape of cancer. There are a few people here who months earlier were told there is nothing more to be done, yet one is going into surgery in about one week.

My advice, food wise, look up info for Low Fiber Diet, it might help passing food easier.

Do you know what chemo you are getting?

Lee

[peanut_8]

Gemini

Please don't give up. Lots of folks here with liver mets have had remarkable success with HAI treatment at MSKCC. Dr. Nancy Kemeny is the woman to see.

Here is a link to a previous Colon Talk discussion regarding the treatment. Please note that the 5 year survival rate is 80% with the HAI treatment protocol. That's amazing in my book.

viewtopic.php?t=51430

Best of luck to you
peanut

[Achilles Torn]

This is horrible and scary. It will take time but you've had horrible news so grieve for a while and then get proactive. The silver lining is that you are just starting wih treatment. There are significant stories of chemo shrinking tumours and making non surgical patients candidates for surgery and even the rare "complete response to chemo". You have many options to pursue and don't be surprised if your local oncologist doesn't know them all. Push for full genetic testing as it can lead to amazing treatments that have a chance at seriously extending your life.

This is far from over. You are just starting, and though you may be an underdog now you have every reason for hope.

Hope that helps
AT

[stu]

Hi ,
From reading here for eight years I would be taking the advise to consult with Dr K . I don't live in the US but have read here over the years what she has achieved .
Have a read of my signature . My mum's CEA level went up every time she had chemo . It is not always a reliable tool when chemo commences. Chemo itself can cause it to rise . My mum had in fact tremendous shrinkage .

The beginning is awash with fear . But I hope my mum's story gives you some courage . She always got another opinion .
Take care,
Court

[Shana]

Hi Gemini,

I am a Gemini too and we are relentless optimists so don't you dare give up! There are so many great people here who have already shared their experience and have offered great advice for second opinions. Do whatever you need to do to get the best possible medical treatment.

Your story brings tears to my eyes because I know the fear that you feel but there is also much hope so hang in there and fight! I also suggest that you meet with a counselor to help you deal with the emotional side of this. I am finally seeking help after 9 months to help me learn how to "live with Stage IV cancer"

Sending hugs and prayers to you!

Shana

[Robino1]

On my first visit with my oncologist I asked if we were going for a cure or palliative care. She was honest and said that she didn't know until after we see how my tumor responds to chemo. I asked about what the next steps will be and she said let's get you into remission first.

With those words, I knew she was fighting WITH me for my life.

My advice is to get a second opinion with a high rated cancer center. Stage 4 doesn't need to be a death sentence. It just means we have to fight harder. It is doable.

I'm halfway through chemo and it is doing a great job on this cancer.

{{hugs}}.

There are some very knowledgeable people on this forum that can help you by pointing the way to some great options. It will be up to you to fight your way through. It is a battle and you can do it.

[DarknessEmbraced]

I'm so very sorry to hear of your diagnosis!*hugs* We are here for you! I agree with everyone else that it would be good to get a second opinion. I wish you all the best!*hugs*

[AlmostAmazing]

It is very sad to read your story, many of us have been there but when it 'happens' to us, we feel we are alone - fear is very debilitating. You've come to a great place for support and additional insight from those who are also on this journey. Roswell Park Cancer Institute is pretty amazing, and I would highly recommend either Dr. Borland. Second opinions are incredibly valuable.

My prayers are with you and I will look for future updates on your journey.

Hugs

[plastikos]

Echoing what others have said. Don’t know where you live but get yourself to the nearest major cancer center for an opinion. Do not stick with a team of doctors who tell you it’s “hopeless” and there’s nothing they can do. Theres is always hope. If they can get a sample of tumor I would suggest having it tested for MSI status. Look into trials. Good luck to you.