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Stage IV colon cancer with kidney metastasis.

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

My name is Kurtis and I'm 18 years old. When I was 16 I was diagnosed with stage IV signet ring mucinous adenocarcinoma of the colon. I had a few surgeries to remove the baseball size tumor on my colon, and they ended up removing part of the colon as well. I went through chemo for about 7 months and was in remission for about 10 months, until a routine PET scan showed that the same cancer has now metastasized to the kidney. There are only two small spots and the cancer in the colon hasn't returned. Apparently this type of cancer is really rare, anyone know anything about it?

AnneCan
Posts: 3693
Joined: Oct 2009

Welcome to this forum, but I am really sorry you need to be here. I don't know anything about this type of cancer but someone else will be able to talk to you about it. This is a fantastic support site. What is the treatment plan going forward?

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

it's okay. They are going to put me on the same chemo as last time (I don't know what it's called) and that's all they can do. It's inoperable this time.

AnneCan
Posts: 3693
Joined: Oct 2009

I hope the chemo knocks those spots right out of there. I am inoperable for my cancer, including the 2 colorectal tumours. Chemo has worked well for me.

Lovekitties's picture
Lovekitties
Posts: 2893
Joined: Jan 2010

I don't have any experience with your type of cancer, but hope you will hang out here with us and let us help you as we can.

You mentioned in your reply to Anne that the current occurance is inoperable. Don't let that get you down. Many here have been told that their recurrance is inoperable, but after chemo have been able to get surgery. So there is hope! For some they go into remission. For some they go on maintenance chemo for life until medical community finds the cure.

You have had a tough road for one so young. We have folks here of all ages and backgrounds. Our common ground is that we have/had cancer diagnosis.

Know that you are welcome to ask any quesiton, and hopefully someone can answer. Know that you are welcome to vent about doctors, treatment, life, whatever, and that we will try to give you emotional support.

Hugs to you.

Marie who loves kitties

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

Thank you.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

You will find all walks of life in here buddy, you will find all types of people in here, then, you will meet Kerry S, he is so special we call him "Special K", he will make you laugh. I figure that if we voted he might be considered the "jailer" in here...but sincerely Kurtis, we come here to support, love, laugh, and most of all be a close knit family that goes the extra mile for all of us...Feel at home with us, talk about everything or anything that you need an answer for with us. If we don't know we will find out for you. We talk about everything from Poop to Peanut butter, so pull up a chair and join us while I throw another log on the fire........Love, Hope, Peace, and a cure in 2011 for us all....Buzz

herdizziness's picture
herdizziness
Posts: 3389
Joined: Apr 2010

There was a woman on here in January, who's boyfriend Gus was in the same exact boat as you,
Diagnosed two years ago, NED then re-occurence with mets to the kidney.
Maybe you can find and talk to her. Her avatar name was emmangus.
Have you checked with different surgeons about your kidney tumor? The tumor is only in the kidney, correct, never hurts to have two opinions? I know that they talked about the possibility they would also be taking my right side kidney out due to my tumor on the ureter. (still a possibility as I'm still leaking protein like crazy).
I don't have signet ring as far as I know, I've never asked what type of cancer I had.
I of course wish you the best and if you can talk to Emma since you and Gus are about the same it might help you a lot!!!
Excerpt from Emma's post:
"My boyfriend was diagnosed with stage IV signet ring mucinoid adenocarcinoma of the colon almost two years ago. He went through chemo and was in remission for a while, but we recently found out that the same cancer metastasized to the kidney. This is such a trying time, and I'm wondering if anyone else has had this and can tell me anything about it? Apparently it's rare."

Also DoriW has signet ring and could be of help to you.
Winter Marie

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

This made me laugh a little, because that girl you are describing is my fiance. I am the guy she talks about in that post. She got banned because she wasn't 18 yet. but thank you :)

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

So rare that the recommended resource turns out to be your girlfriend!

Look in the "other cancer" forum as well. This does seem to be a strange mutation that may not be limited to colorectal, and you may find someone in that forum who knows more about it than we do.

As to the rest of the journey, whether chemo, radiation, or surgery, you will probably find someone here who has been there, done that and can give hints of what to expect, as well as tips on dealing with particular issues.

Personal opinion:

Beware of anyone offering medical advice, or alternative therapies. (I just know someone is going to shoot me now)

It may be that what they are offering has merit, but you should run everything by your medical team before making it part of your routine.

End personal opinion

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

Hey, Kurtis.

So glad you joined us! I don't have experience with your type of rare cancer, but I just want to tell you that I will pray for you. Please ask us anything or share any feelings you have. We're a family here, and we'll do what we can for you.

*hugs*
Gail

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

Thank you very much.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Original csn post:
http://csn.cancer.org/node/211747

Refers to a blog site- www.pmppals.org

Posted by DoriW:

"I'm familiar with the blog. I thought I'd mention, as a word of encouragement, that the woman who writes the blog is an 8 year survivor of stage IV signet ring appendiceal carcinoma.

D"

Apologize for not giving enough credit to the original posters, but I am hoping you see this!

DoriW's picture
DoriW
Posts: 12
Joined: Feb 2009

I actually just responded to the PM you sent today, so check your messages.

By the way, I'm second guessing myself because what I said was on the verge of medical advice, although it wasn't exactly. In any case, no one knows your situation as well as you and your doctors. I just mean to say that a second opinion can be nice to have if you have the resources available. I don't want to add stress to your life by suggesting that if it is difficult to do.

You should check out that blog. It's appendix-cancer.blogspot.com.

Take care,
Dori

hopeforcure49's picture
hopeforcure49
Posts: 111
Joined: Jan 2011

Sorry you had to join, but this is a great site to seek answers and friends. I joined in Jan.2011. and it has helped me with venting and hearing of other stories. I'll keep you in my prayers. get second opinion. Blessings from Lourdes.

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Kurtis,

Welcome to this board, where no one wants to have to join. But since you did, you'll be glad, I believe. People here can be very supportive and helpful. It's harder when you have something more rare, but even so you have a better chance of finding someone who's got what you've got just because people chime in from all over the world & share their diagnoses, symptoms, side effects, and different ways their doctors have approached things. It's interesting that the west coast and east coast in U.S. seem to have a couple of procedures that they tend to do differently & I've learned so much from others on this board. I now enjoy being of help and support to others whenever I can.
I've recently gone to see a naturopath doctor (ND) in addition to the oncologist I've been under treatment with for a long time (I was dx w/ stage IV colorectal cancer with mets to the liver and lungs in Aug. 2007). Anyhow, as was already mentioned, if you haven't ever gotten more than one opinion from other oncologists and/or surgeons, I would highly recommend that. It's always good, I think, to hear other opinions. Before I had my liver resection in 2008, I was told that most surgeons wouldn't operate on me (because I also had mets in my lungs), but a surgeon did agree to do it after all.
About the naturopath, that is something completely new for me & I heard about them from a few others on this board. Some people go totally the natural route, but I feel most comfortable by continuing the chemo I'm doing and having the naturopath add in what he can do to help support my body naturally and build up my immune system (and hopefully fight the cancer too- although the jury is still out for me on that since I just started with him). But by boosting my immune system, I think that will help my own body fight the cancer better & my naturopath said that by doing the cleanse I'm almost finished with (an 8 day cleanse) and then screening me for allergies and all sensitivies next week, I'm supposed to gain valuable information about what to avoid, what to eat, and what supplements will be best for me. It's not cheap, since insurance won't ever pay for natural medicine, but I'm still doing it. FAR cheaper than oncology, but the difference is my insurance pays for that, even though it's thousands of dollars every time I get one chemo treatment. My initial visit with the naturopath cost me $165, but then adding in the supplements and things for the cleanse, I ended up paying a total of $540 that visit. I'm going back next week for a follow up (post cleanse) visit and to get the screening tests for finding out all my allergies and sensitivities (it will be $94 for the follow up and $180 for the tests). So not cheap, but if it helps my body, I think it will be so worth it. I'm told to cut out processed sugar, processed foods, and red meat (plus a lot more, but those are the main things). I've heard about avoiding those things for the past 3 years, but have never gotten serious about really trying until now.
Especially if you don't know what kind of results you're getting with the oncologist or where this is all heading, why not seek out alternatives? Just my opinion of course, you have to go with your gut feeling on that one. I know some have said to steer clear of anyone who offers medical advice here, but I don't think I'm offering medical advice (which I can't do because I'm not familiar with the signet cell form of colon cancer), but I'm just sharing my thoughts and opinions here and I think that we learn and get new ideas from each other (as I have many times). Again, you have to seek out information yourself and there is SO much information out there that it can be dizzying. I've had many well meaning people (who are very much into the natural approach) that I need to totally qui my chemo and go all natural. I have thought long and hard about that and have felt so confused. I've been on chemo nonstop for three years now. My cancer isn't all gone, but the chemo is acting right now like a dam wall- holding it back from growing any worse. Whenever I even take a chemo break, my tumors start growing and that scares me to death. So, I finally went with a naturopath who will work together with what my oncologist is doing (so he says anyhow). My oncologist knows I am seeing the naturopath and wasn't overly enthused, but not against it either, fortunately. Not all naturopaths are alike. I've just seen the one, but know that not all are as thorough as others. Then you have to watch out for those who want to charge you for every little thing a lot of money. I will watch out for that with mine the next time I go in, as I know many supplements that he also sells could be purchased online for less money. That is what I will try to do, when/if possible.

Best wishes to you- my oldest child (son) turns 18 next month (I also have a 10 yr old and a 15 yr old), and I can't imagine someone so young having to go through this. I'm so sorry about that. But we never were promised that our lives would be all roses, I guess. It just seems so hard and unfair though especially when it happens to someone so young. Ah, but I won't ever pretend that I understand the ways of the world- we live in a faulty world full of bad things and disease, so I guess no one is immune to that. I hope and pray that you have a lot of good support in family and friends. If you have a belief in God, rely on Him to get you through- that's what I do each and every day and never have I blamed God for what has happened to me. Take care and know that I am thinking of you and praying for you (I say that because there was a lot of controversy over that lately on the board, with some being offended. I am not wanting to offend, just to reach out & share that it's hard personally for me to even imagine getting through such difficult things in life without a belief and faith- I won't say anymore on the subject to you after this unless I sense that you appreciate it).
No matter what- remember that there is always HOPE. Just because a doctor or surgeon says one thing (especially about being inoperable) doesn't mean it will stay that way- seek out other opinions and other information.

Take care and cyberhugs to you,
Lisa

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

Thank you very much for the replies to my post. Everyone is so nice and supportive here and I'm glad that I joined. I'll make sure to keep you updated. Take care.

Sonia32's picture
Sonia32
Posts: 1064
Joined: Mar 2009

but welcome Kurtis.

Hugs

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