CSN Login
Members Online: 3

You are here

signet ring colon cancer

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

Hi, I have Stage 4 signet ring colon cancer. I was diagnosed on June 29th of 2010 at the age of 18. I've had the large mass tumor removed last year along with half my colon. On November 1st I had surgery to remove my ovaries, tubes, and uterus. The cancer spread that. They said my ovaries were pretty much "eaten" up with cancer. The doctor doesn't give me a time limit, which I'm glad. He says you never know from these kind of things. We didn't expect it to spread in the first place. He told me today that it will probably only get worse from here. My out look is very positive. I don't try to make a time limit for myself either. I would just like to talk to someone else that has something similar. I don't get to talk to anyone about it much. I'm considering trying to join a support group, but I'm a bit shy. Anyone else open to share their struggles with me? I would love to have someone to talk to and keep high spirits with.

Rosa1234
Posts: 11
Joined: Nov 2011

My mother has colon cancer which has spread to different parts of her body. She is scared and not very positive. I am glad to hear that you are keeping your spirits high. I think that is the only way to be. Live your life! No regrets! Turn cancer into a positive thing that pushes you to not be shy to try new things and meet new people.

Rosa

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

I'm sorry to hear that your mother isn't taking it in a positive way. I know that is a terrible thing. "All you have is now" is one of my favorite quotes. I don't know what these things happen, but you try to look on the positive side. It brought me closer to my family. I meet my biological father and my oldest brother at the beginning of this year. The main reason we got in contact was to deliver the bad news, but all that matters is I know them now. I hope that she will soon take it in a better way. I was in denial at first. I was just brushing it off like it was nothing. I was silly to do that, but I still try to keep my head up and keep going, if not for me but for my family.
You just stated another one of my favorite quotes too. "Life Life Without Regrets" I will be getting that tattooed on my wrist soon. I have "life is beautiful" tattooed across my chest. Sometimes I need that constant reminder that life is truly beautiful no matter how hard or unfair it gets.

janklo
Posts: 23
Joined: Mar 2010

Kayla,
my 27 year old daughter is in the same boat as you. Diagnosed Feb 2010 Stage 3C signet ring. Had her entire colon removed and had FOLFOX. Then she was clear until July 2011,when a 2 cm mass showed up in her abdomen. Surgery to remove that revealed peritoneal metastasis. She has been undergoing Folfiri with Vectibex since August and is scheduled for HIPEC surgery next week. Her tumor markers have gone down and she feels great. Her surgeon says he needs to remove the ovaries, one has something that shows up on an MRI that could be an ovarian cyst or could be metastasis. He has had signet cell patients cured with Hipec, so we are hopeful!

How did you discover your ovarian issues?

Janet

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

Oh wow. I'm sorry to hear that she had to have all her colon removed. I was very fortunate to keep half mine so I would have to deal with the bag. I'm already self conscious about carrying around the pump for my 5FU. I was on FOLFOX for about 7 months. Does she go through the one that makes your sensitive to cold? That was the worse for me! I'm more of a cold person than a hot person. I really hope that the surgery goes well for her. Would you mind letting me know how it goes? Maybe I can try to have that as an option for myself rather than going through this chemotherapy for "as long as it works". I really do hope it works for her! That's great that she is doing good so far! =]
With my ovaries, we kept tracks of everything over a CT scan every 3 months. We started to see a "cyst" grow on my left ovary. This was after I switched to an oral medicine called Xeloda and one IV infusion called Avastin. The "cyst" near the left ovary when away and one by the right started to form. They kept a close eye one it, then I started to have extremely bad pain on my right side. We kept up with the scans and ended up doing more test. They took tissue from my uterus to see if it spread there. The test came back positive so they scheduled my surgery. I told her I wanted all taken out so I wouldn't have to have another surgery later on (just in case). Ended up that my left ovary was worse than they thought. Everything got removed. The so called "cyst" ended up being tumor masses.
Please make sure that they keep up with her ovaries. I saw all the scans that they showed me and it spread so fast.

Sasha46
Posts: 3
Joined: Nov 2011

Hi Janet,

I just replied to Kayla and she is an inspiration. I just want to know from you, where is your daughter getting her HIPEC surgery? After your post, I read about that and I think that may be an option for my sister. Her colon cancer grew out of her colon and into her abdom. and pelvis area. There not sure they can do radiation yet because of the widespread area. They never mentioned HIPEC at all!

Any info. you can provide would be appreciated!

Thanks so much,
Sondra

janklo
Posts: 23
Joined: Mar 2010

Sasha,
My daughter had surgery in Omaha, Nebraska at Creighton University with Dr. Loggie. It was last week. The ended up removing both ovaries. The left one was 20 times the normal size (weighed 480 grams) and totally cancer. The right looked normal but the biopsy showed it was cancer too, all signet cell. The uterus was fine though. They ended up not performing the HIPEC perfusion part of the surgery because the remaining disease is in the mesentery of the small bowel and the nodules are 3 mm which is just above the size limit the heated chemo would attack (goes to 2 mm deep). But, they feel the other chemo she has done is working because the other nodules showed they were shriveling up and dying. So they recommend she go back on FOLFIRI with Vectibex and add Avastin to the mix, starting in January. She got the estrogen patch and pills and she's all healed up and back working from home, feels great! So we move on - her doctor says there are new therapies coming down the pike really soon and now is the greatest age of discovery for GI cancer drugs. So keep up hope!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hi Janklo, just curious, did your daughters doctor mention what exciting treatments are coming down the pipe??

laurettas
Posts: 372
Joined: May 2011

My husband has stage 4 signet ring cell colon cancer also. He was just diagnosed in April so you have more experience with it than we do even though we are in our 50's!

You have a great attitude and we are trying to also. We have the time that we have and we don't know how much that is so we try to live each day as normally as we can.

You are so young that it is probably difficult for your friends to relate to your illness. My husband had Hodgkin's lymphoma when he was 24 and people were afraid to talk with us about it then. This time people are much more open to talking with us. On another cancer site, Colon Club, are quite a few younger members. Here is a link:

http://coloncancersupport.colonclub.com/viewforum.php?f=1

We would enjoy sharing with you our experiences but if you are looking for someone closer to your age the other site may have more younger people. Hope to "see" you often around here!

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

The main thing you can do is keep positive. I believe that it helps so much more than people think. My friends really don't understand. I had some that just drifted away from me because they didn't know how to handle it. Some seem to think that they can get it from contact, silly. The ones that are with me now try their best to understand, but I know that they are completely lost. I've noticed a lot of people are afraid to talk to me about it, I would rather talk about it with someone than to let them go on wondering. It also makes me feel better talking about it. I don't sharing experiences with anyone of any age. I just like to know that I can listen and learn from what they have been through and do the same with me. I will def check that website out, because it is nice to also talk to someone around your age. I hope for the best of your husband. Has your husband had surgery yet? Do they know what kind of treatments they have in store for him? I hope for the best! All you have to do is keep positive, it gets you so far!

laurettas
Posts: 372
Joined: May 2011

We learned right away when my husband had cancer the first time that it is easier for us to bring up the subject of the big C ourselves and just talk about it in a very normal manner, explaining what was going on at the present time. People usually seemed relieved when we talked about the elephant in the room!

Here is my husband's story. He had been having a little bit of bloating and was feeling just slightly funny for about two months. He went to the doctor for a physical and the doctor wanted him to have a colonoscopy just because of his age. We found out from the colonoscopy that he had a tumor. They did a CT scan and discovered that he had mets in his distant lymph system, so stage 4. A week after his diagnosis he had surgery--the tumor was in his transverse colon so they were able to connect both ends and everything works very normally. We saw from some photos that the surgeon took that he has innumerable mets in his peritoneum as well as his lymph system.

A month after surgery they started him on FOLFOX, a month later added Avastin. He did that through six treatments, had an allergic reaction to Oxaliplatin and a few days later found a huge blood clot in a varicose vein in his leg probably due to Avastin. So in one week he was taken off two of the drugs he had been on. They switched him to FOLFIRI and after checking for his Kras, put him on Erbitux. He did those through the next six treatments and then began maintenance. He is on 5FU and Erbitux now. His cancer has reacted strongly to the chemo and on a PET scan he had recently only one lymph node in his neck had any activity. His CEA went from a high of 40 after surgery to 3.2 a couple of weeks ago. So, we are happy with the results and enjoying the good news, knowing it can change quickly but just appreciating what we know today.

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

I try to just see an opening in a conversation to let people know. I don't want to just say "hey! I have cancer" but I think it is best to get it out of the way in the beginning. Mostly so people wont feel obligated to stick around. All that matters is the main people in my life have been here the whole time.
I'm sorry that they didn't catch it before stage 4. I was lucky also to have my parts of colon put back together. I don't know if I could stand to have the bag. My cats already try to play with my 46hr treatment bag I bring home. I hope the allergic reactions didn't harm him too much. It's scary how fast it can sneak up on you. I think everyone should get checked often, no matter what age. The signs usually don't show up until it has progressed. I'm very happy to hear that you guys are doing great right now. I hope that the chemo isn't too hard on him. I go though treatments every other week. It makes me sleep all the time! I sleep most of the days away. Even though it's hard, I try to get a bit of exercise in a day. The dog that I got right after surgery has helped me so much. He is very mellow sometimes and very active at others. He has done a great job of keeping me active and just letting me cuddle with him when I need it. Doing 15 minutes of walking a day works so well. It makes me feel so much better. Along with drinking lots of fluids!

laurettas
Posts: 372
Joined: May 2011

Yes, some people hide the fact that they have cancer for various reasons. We have never done that, for one thing, people always find out through the grapevine! We just talk very matter of factly about it--the most difficult thing is getting people to understand that it is usually not curable. They always want it to go away. Sometimes I think it is harder on other people than us!

Jake has tolerated chemo very well and seems to have no after effects from the allergic reaction, thank goodness. He is active most days, going outside and accomplishing something on the farm. He likes to be busy because it keeps him from thinking about the bad taste and other side effects. He has gained almost 30 pounds since his surgery--which he is not happy about! He wanted to gain some weight but now has a few more pounds than he wants. It's because he has found that eating makes him feel better faster so he is snacking all day long. We may have to find some lower calorie foods for him to eat, though!

Hope you are feeling well and we can talk again soon!

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

Yeah, I also feel that it is harder on others. I try my best to educate them as much as possible. That's great that he is moving around so much more. I hate that I've gained weight since my surgery also! I snake lots. Pretzels are my fav! they aren't too fattening and the salt helps lots. I've also found that sunflower seeds help out. I hope that all is still going well. I'm sorry for my late reply this time!

belindahill's picture
belindahill
Posts: 144
Joined: Jan 2011

Hi Laurettas, my husband is going through very similar treatment, colon resection aug 10 cecum, then 6mths chemo, then ct showed spread to peritoneal, he is on second line treatment, just one cycle remains then see how things are, hoping that it all works. Please keep me informed how things go for you. All the best.

laurettas
Posts: 372
Joined: May 2011

I would be happy to keep you updated on our latest happenings. Things have been pretty calm lately so I suppose we should be in for some excitement soon! Jake just started maintenance chemo of 5FU and Erbitux three weeks ago. We are anxious to see how his scans turn out with the change of drugs. So far none of the changes he has experienced--Folfox to Folfiri and Avastin to Erbitux--seem to have made a difference. His tumors have kept shrinking and his CEA keeps going down 3 or 4 points every month. He gets his CEA checked in two weeks so that should maybe tell us something. Hope it maintains because he tolerates this combo more easily than the Irinotecan. Am anxious to hear how your husband is doing on his latest protocol.

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

By the way, sorry for all the long responses. I haven't really be able to talk to many people about it and they understand what I'm talking about, for them most part. It's nice to get things out there. I like to help anyone as best as I can. It's great to learn about other people and see if I can recommend anything to my doctor.

julesio
Posts: 24
Joined: Jun 2011

Hey, my partner had what you had, my only recommendation is that you don't stop chemo for a break if you can. My partner was going well on the chemo and then when he stopped it he didn't go so well. As long as you can take it, take it. That's all I could recommend really. Eat as well as you can and buy the anti cancer diet servan shreiber book, it's brilliant, I read it in about 3 days and it's got lots of helpful stuff in it.
Jules

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

I will be sure to check that out. My doctor has told me the same thing. I shouldn't stop unless I NEED a break. I'm going to try for as long as I can to keep it up. I will probably go to the book store this weekend to see what kind of books I can dig up. I feel like I don't know nearly as much as I should.

Sasha46
Posts: 3
Joined: Nov 2011

You are amazing Kayla. My sister is going through what you are going through. She had the signet ring colon cancer surgery in January 2010. The cancer had grown out of the Colon, into the pelvis area and into one of the tubes from her bladder to her kidney. It was Stage 3C and was in 1 lymph node at that time. Her chemo was completed by September of 2010. She had a PET Scan in October 2011 and there was a mass around one of her Overies. She had that surgery on November 8th, 2011. They left the other overy and uterous. She was upset about that but the surgeon said they didn't need to be removed. She will be starting another round of Chemo, along with the tumor blocker drug. Her doctor told her she is in a fight for her life. Her spirits are very low. I think it's hard for her because everytime she gets positive, she takes another hit from the doctors. She is 54 years old. I'm going to encourage her to get on here and chat with you. I think you can inspire her!

Thanks for your inspiration!

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

I know exactly how she feels. I feel like I get hit with things over and over again. Not just medical problems. Aside from my cancer, I've always been extremely healthy. I told my surgeon that I wanted it all taken out to avoid needing to go back in. The surgeon was reluctant at first because of my age, but she said it was probably the best thing to do. Do they know how long she will be on this next round of chemo? I hope she takes it well. I know that it is hard to keep a positive attitude, but it will help a lot. I hope that she will soon have a better attitude about it. It's hard, but it is surprising how much it can help.

Sasha46
Posts: 3
Joined: Nov 2011

Hi Kayla,

Sorry I'm just now getting back on here. My sister will be on chemo again for 6 months. This time they are putting something in it that helps hinder the growth of tumors. I have been calling places about that HIPEC Treatment. Maybe you should ask your Oncologist about it. My sister asked her doctor about it and he wasn't real receptive to it at first but we started calling places about it. Cleveland Clinic has a doctor that does it. If it is in your abdomine and pelvis area and not in your major organs, you could be a candidate for it. You are young and I think the procedure sounds promising for colon cancer.

simplykayla's picture
simplykayla
Posts: 12
Joined: Nov 2011

I've been looking around for some places for second opinions. even if I have to go out of state. I don't want my options to be limited to just one doctors opinions, even if he is a great doctor. Hopefully the chemo will not be too harsh for her. Positive thinking honestly will get very far. If she ever needs some more support (or anyone) just send me an email and I will be happy to learn more about everyone. My email is kaylasimplyrocks@aol.com =]

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kayla,

So sorry you're having to experience this at all, but especially at such a young age. Check out my post with the title "new treatment I'm taking", posted earlier today (Nov 30). This is something that I'm quite excited about! I don't know if this treatment can work together with chemo or not (I didn't ask that question, since I had to stop all chemo), but it's worth checking into and asking that question. If it doesn't work with also taking chemo, then it's still something to keep on the back burner in case you get to the point where you can't take any more chemo.

I'm 45 & mom to three kids- ages 18, 16, & 11. I can't imagine any of them going through this, although they will have to watch out and be checked at fairly young ages, since I have it (I was diagnosed stage IV 4-1/2 yrs ago). They're going through a lot just worrying about me and if I'm going to make it or not. I have hope!!!

You seem to be a brave and fairly upbeat person. It does help to share your thoughts, worries, and questions with others who understand because they're dealing with it too. I recently started a cancer support group at my church. Didn't feel the need to do that until recently, but I have gained sooo much by coming on this csn board the past 2-1/2 years now. Please feel free to send me a private message anytime you need support, want to talk- whatever. I'm a pretty good listener.
I will be praying for you-

Take care,

Lisa

Subscribe to Comments for "signet ring colon cancer"