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New Diagnosed Stage 4 - 28 yo

Ugur
Posts: 62
Joined: Mar 2018

Hello everyone, 

I have just found this amazing community, and wanted to hear some opinions. 
I was diagnosed as S4 Colon Cancer with mets on my liver, on both side around 23 mm(sorry I'm from Europe).

I am waiting for biopsy report to learn which kind of chemo I'll have. 

I'm 28 yo, and I feel generally healthy except the pain in my abdomens, and both sides of flanks.

I'm not too much worried, just a bit scared. 

Now I'm having painkiller to avoid the unpleasant pain attacks. 

I would like to hear from you about what to expect in near future, and what should I add/avoid in my lifestyle from now on. 

Thank you all in advance. 

U.

Woodytele
Posts: 163
Joined: Apr 2017

im in the same boat as you, started chemo about a year ago.  The regime they put me on was FOLFOXIRI, this is what thy call “the kitchen sink”, basically throwing everything at it.  You are young, so this may be what they start you on.  They give infusion every two weeks, so it’s a lot to handle.  Takes a lot out of you.  Good luck, god bless. 

Ugur
Posts: 62
Joined: Mar 2018

Thank you Woodytele. I am not afraid of chemo for now, I hope it will work. Hopefully we will both get over it soon! Good luck to you too...

kyolcu
Posts: 112
Joined: Jun 2017

Hi Ugur,

Your nane looks like Turkish, like mine Kadir. I live in Houston, TX, and also have Stage IV colon cancer mets to liver and lungs. Having chemo at MD Anderson Cancer center for 2 years now. As Woodytele mentioned above most probably they will put you on first line chemo of Folfiri until it stops working.

Sorry to hear about your diagnosis but be strong and stay positive all the time. Good luck with your treatment.

Kadir 

Ugur
Posts: 62
Joined: Mar 2018

İyi günler Kadir Hocam, geçmiş olsun.

 

I hope you will get better soon. I don't feel like I am so ill or anything different than usual. I am trying to be positive about all this, and I know I will get cleaned soon.

I only have this pain attacks, other than that I am living my life as I used to. I am going to my job, I am caring the daily works. There is no need to whine and be sad.

 

We will see what the future bring. 

 

Thank you and I hope I will hear good news from you soon.

kyolcu
Posts: 112
Joined: Jun 2017

Merhaba Ugur, 54y dayim isminle hitap ediyorum yanlis anlama.

I hope you will have get rid of asap by having surgery and chemotheapy.2 years ago, I was told with my initial diagnosis I was told colon colon cancer chemo treatment has good quality of life with minimum side effects and it came through so far Although everybodies response to chemo might be different than the others. Some of  friends in this forum mentioned that they had difficult times.

Good Luck and please update us.

Kadir

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Twenty eight is so young, wow. I was 49 and felt too young. I'm so sorry for your diagnosis but being on here will definitely help you. There are so many varieties of treatment that it's hard to say what's next. Chemo for sure, maybe radiation, surgery I'd assume. Please keep coming back to let us know what's happening. We'll help as much as we're able to.
Jan

Ugur
Posts: 62
Joined: Mar 2018

Thanks Jan.

I know I will have to go thru a lot but I am not worried so much.

It is just a disease and we have to fight against, and so will I.

 

I will keep my status updated as much as I can.

tmckelve
Posts: 9
Joined: Jan 2018

 

Ugur,

 I have stage 4 colorectal cancer diagnosed at 51. I go for my 12th  round from chemo in two weeks like the others said it takes a lot out of you but keep yourself busy don't give yourself time for self-pity. I got lost in that hole for two weeks it makes you weaker. Remember keep your head up and your mind sharp. A positive attitude and kick cancers *** attitude will make the burden you and I and everyone else who has this disease much easier. Remember if you start to feel alone we are all here to help.

 

 2018-03-31

Ugur
Posts: 62
Joined: Mar 2018

Hello tmckelve,

 

Giving up is never an option. I feel same as before I was diagnosed, and I will never let this thing effect my life more than necessary.

We got married on April 2016 and we just bought our house with my beautiful wife. So, I got a lot in my future, and this cancer is just a challenge in my life that I gladly take it.

 

Thank you for your encourageus message and attitude.

We will have more discussions in the future I believe.

 

I hope your chemo will make you better and you will get over all this soon, fingers crossed.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Sorry that you had to come here and at such a young age (I'm over twice your age). The options are typically chemo, surgery and/or radiation. There are some other exotic options like an implanted chemo pump, or laser surgery that is used in a few places.

The chemo drugs can do a number on you and there's a lot of experience here on which drugs have which side-effects. So folks can tell you what to expect when you get your plan of treatment. Surgery can be used to remove tumors but chemo is often used to shrink tumors so that it makes the surgery easier. There are also targeted therapies for people with certain genetic traits - the targeted therapies go after the tumor whereas traditional chemo hit all of your cells. I do not know if chemo is used for colon cancer.

Learning about it is quite a shock and it can take a little time to get over the shock and into what the treatment program will be like.

Ugur
Posts: 62
Joined: Mar 2018

Hi Mikenh,

Thanks for your message and for all the info. 
I guess, I am already over the shock phase and now I am just looking for the best practices to get this done for good.
We will see what the doctors will tell me next week.

I hope you will get better soon, and I am also sorry to meet you guys in this platform. However, I am glad that I found here.

Take a good care of yourself,

Uğur

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Treatment all depends on your country first off.  I'm sorry to hear of your diagnosis at such an early age.  That has to be a shock in a major way.  Depending on where the cancer is located mostly depends on the treatment they will give you.  If it is colon, it can be different than if it is rectal.  Treating other organs also depends on how and where the mets are located.  When you have more information, please come back on this board and share with us.  We can help you get through this. 

Kim

Ugur
Posts: 62
Joined: Mar 2018

First, I am in Czech Republic, and my friends ensured me that here the hospitals are good facilitized and the doctors are well experienced with colon cancer. So, at the moment, I will trust the doctors here and we will see.

At first it was quite a shock for me and especially for my family and friends. After the moment I learnt the news, I asked to my doctor "so what next", and they explained me the next steps.
So far I know, the tumour is located in my large intestine around 20 cm inside and it is 6 cm long, little more than 2 cm tick. Mets are located on both sides of my liver, they were not so big as the doctors said, around 23 mm each.

The first step for me will be chemo after the biopsy. Probably I will start next week, but I don't know for sure.

Now I and my wife are already fine, and researching how to get this over soon.

Thanks for your message again Kim,
Uğur

beaumontdave's picture
beaumontdave
Posts: 1063
Joined: Aug 2013

Welcome Ugur, as to your question about what to do and not do, I take a baby aspirin[81mg] every day. I believe it helps with inflamation and potentially with reccurances. The other basic stuff is less red meat, very little cured/processed meats, more fruits and vegetables, no smoking, and moderate alcohol use. Others have a number of natural/organic supplements they take, and as you read you'll discover them. I just follow the basic rules and am 10 years out from diagnosis[basically a stage 4] and 3+ years since the last removal of a met in my liver. Best of luck to you.....................................Dave

Ugur
Posts: 62
Joined: Mar 2018

Hi Dave,

Thanks for all the info.

I think I will keep generally as what you wrote and will pass the most of the alternatives. I am sure there are a lot of things what might be helpful, but first I want to deal with this by the doctors' way.
If I would feel like I need more support, I saw many discussions about diets, supplements, alternative meds etc in this forum. 

I wish you best of luck as well. Keep clean!

Ugur

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

  I was stage3c at diagnosis at age 48. My cancer whilst not overly large was very aggressive and had spread quickly thru 6 lymph nodes. My surgeon gave me three years maximum. I have just gone past 20 years still cancer free.  You seem to have a strong will to live and overcome your cancer. I believe mental attitude has a bearing on survival. My attitude at the time of dx was to do whatever was suggested and as much as I hated chemo I insisted on the full regime. In my day that consisted of 48 weekly bags of 5Flourouricil and over two hundred tablets of levamisole. I still have regular scopes and they still find and remove polyps regularly. I wish you and your wife the best of luck and that you will overcome this cancer. Ron.  PS idon't smoke of drink and at 68 I still work four days a week.

Ugur
Posts: 62
Joined: Mar 2018

First of all, thank you for your message and sharing your story.

I am really happy to hear that you are well and healthy. As you said, I have no doubt that I will get over with this, I know it will take much from me, but I will do it.
I am not afraid of treatments or the surgeries. I don't even mind that I will live with a hole on my chess for possibly a long time. The only thing that I know, when all of this will end, I will be happy with my family and friends.

I wish you won't have to deal with any of this ever again, and will enjoy the life.

Thanks again,
Ugur

optimist777
Posts: 38
Joined: Feb 2018

Hi Ugur, I was diagnosed with stage4 colon cancer in 2009, and still fighting this disease.  First, don't listen to the statistics, because the statistics are mostly based on people much older then yourself, so it can appear more dire then it actually is.  Remember you're a unique individual not a statistic.  There is always hope, and better, newer treatments are coming along all the time.  My best advice for you, is try to stay postive, just take things one day at a time, always trying to get stronger, eat lots of fruits and vegetables, exercise as much as is possible, take time to relax, get lots of natural sunshine and or vitamin D supplements.  Try to create a good support network.  Listen to your doctors, but don't be afraid to question them as well.  While these cancer message boards have lots of support and good information, I personally also find these message boards depressing at times-- so I don't spend much time on them, so that is just something to consider.  I think keeping a postiive attitude is so important, don't forget that, and miracles do happen.  Wishing you the best.   

Ugur
Posts: 62
Joined: Mar 2018

Thanks for your message and I am deeply sorry for you that we are in the same boat. 

I really don't bother to see the statistics. I did it at first when I had learnt about my situation, and I was freaking out nearly. But, I told myself "hey calm down, I am not going to die, I feel fine".
That was the moment, I knew this will over, hopefully soon. I am trying to keep myself busy with different worries. I could not tell my family back in home yet, because I don't want to worry them more than necessary, this is my biggest concern for now. I invited them and told them I need them. I hope they will be with me soon.

I am glad that I have found here. I don't think anyone else would understand what I am going thru than the most of the people here.

Wish you best of luck in your fight, and I would be glad if you could keep me updated about your status.

Thanks,
Ugur

Ugur
Posts: 62
Joined: Mar 2018

Hi again,

First of all, kindly thanks for every and each person who replied to my post!

Today I have talked to my oncologist, and she was quite positive and smiling all the time.
Btw, I am really glad that no doctor yet was any trouble-looking about my case. 

So, I will have my first chemo on this friday, the day after tomorrow. I heard she was ordering folfox.
She told me that I will have it every 14 days and for 3 months. Then, we will check how my cancer will react to chemo.
On 17th of April, I will get a vein port, so I will be able to get my chemo at home. Till then, I will have to stay at hospital during my chemo.

She also told me some kind of biotherapy will involve into my treatment but I didn't get any details.

The doctors also suggested me to stay at home during chemo, at least this first 3 months, that my body and immunity system would get used to it. For now I don't think it will be necessary but we will see.

That is all from my side for now. I know the doctors will use the strongest drugs on me as I understood, but I still can't believe that I will feel week as they described.

I will keep you updated once I know more.

Keep strong,
Uğur

Worriedchild
Posts: 56
Joined: Dec 2017

wish

you

good luck for this journey

God bless you

i would like to know what symptoms compell you to

doctor and hence diagnosed

Ugur
Posts: 62
Joined: Mar 2018

Thank you kindly

My diagnosis period took really long since no doctor was expecting colon cancer from a healthy looking man at the age of 28.
First of all, I always had some problems with my degestive system. The doctors were focused around my diet and inflamation posibilities for more than a month.

Since the doctors could not figure out what is the real problem, they appointed me for colonoscopy, and during the colonoscopy I was diagnosed.
It was unexpected, even the doctor who operated colonoscopy could not believe what she found out.

If you are asking about the specific symptoms, I could count like;
Blood and mucus in stool, severe pain in abdomens, feeling tired, diarrhoea

Annabelle41415's picture
Annabelle41415
Posts: 6531
Joined: Feb 2009

Thank you for the update.  Folfox is hard on the system especially with the oxi that they have you taking.  I'm surprised that your country lets you do your treatments at home as here in the states we need to go to a treatment center/office for infusion.  Most of us receive ports which are located in the upper chest area, not the vein.  It is true that you should stay away from germs as your immune system is going to be compromised, but for me that was hard.  Make sure you do try to stay active in some way just so that you don't become to much of a couch potato - that's not good either.  Thanks for the update.  As always, we are here to help you get through this.

Kim

Ugur
Posts: 62
Joined: Mar 2018

I will get the port, and it will be on my chess connected to one of the main arters. Then I will have to go to hospital for first round of chemo, and after 4-5 hours I will continue the chemo at home, as doctors informed.

I took your suggestion and will stay at home this week, maybe also next week. 

Thank you for your message again Kim

 

Ugur

Ugur
Posts: 62
Joined: Mar 2018

Hello again,

Yesterday afternoon I finished my first chemo session which took little more than 48 hours.
I had it from my arm since I don't have my port yet.

Except yesterday, I felt fine during the whole procedure, only I felt a bit heavy-headed.
Yesterday I felt nausea and tireness for whole day. I slept around 6-7 pm, I guess.
I felt like I was in a bad hangover.

Right now, I feel fine, still just a bit heavy-headed. I will have a small walk with my dog and enjoy the rest of the day.

I will keep you updated.

Thank you,
Uğur

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Its always a relief to get the first treatment out of the way; and then you know what to expect (as far as the procedure) for the following. 

We always like to suggest - and you may already be doing this - to keep a notebook handy, and write down all of your side effects, in fact, write down everything, including questions and concerns for your next visit. I always went through my list with the Onc before every treatment. 

What is your chemo cocktail? I was on FOLFOX with the 48 hour 5FU. 

Tru

 

Ugur
Posts: 62
Joined: Mar 2018

Hi Tru,

Thanks for your message and sorry for late reply.

I guess I'm having the same regimen as you did, the doctors here don't tell much details. Now I'm waiting for my second chemo to be ready. This time it will be with Avastin, so I hope the side effects won't worsen.  

We'll see how this one will go. 

Ugur

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Go in to your Oncologist with specific questions and make sure you get specific answers.  I hate that some Doctors think they can keep their patients in the dark. 

Do you research and go armed with knowledge.  Don't let them play around with your body without knowing what they are doing. 

I wish you the best as you try Avastin. 

Tru

FSUTom
Posts: 4
Joined: May 2018

Hello, 

 

I was hoping perhaps someone might be able to share some insight with the diag my Neice just recieved.  She is just 27 years old.

 

We are told it's poorly differenciated carcinoma with neuroendocrine features, originating in the ascending colon and metastized into the liver.  Liver has lesions over 80%.

She is anemic, they have started her on a two drug platinum based chemo.  She just finished the first rouund but we have not had any other scans yet to see how it's ressponding. 

Does anyone know how to translate that definition a bit better to understand her options for treatment and does anyone know the best facilities for this?  We are willing to go anywhere.

 

Thanks very much. 

BWD
Posts: 5
Joined: Aug 2016

Hi Ugur, I am sorry you are going through this at such a young age! I was diagnosed with stage 4 colon cancer when i was 48 (2 years ago) they told me if i didnt do chemo i had 6 to 8 months and if i did chemo 2 years. However 2 surgeries and many many Chemo treatments, and just about 2 years later I am still here. All cancer is gone except 3 tiny mats in my lungs, I am still on Chemo to get rid of them! It sounds like you are doing the same treatment as I am but they had to discontinue the Oxi after about 5 treatments because i had a bad reaction to it, But honestly the tumors reduced quicker without it! I to have the port and take the chemo home for 48 hours the do my own disconect which i thought i would never be able to do, and it was a bit scary at first but now easy peasy, just close my eyes and pull! LOL  You have a good attitude and that is the key! keep Smiling and god bless! :)

 

Ugur
Posts: 62
Joined: Mar 2018

Hi BWD,

I'm so happy to hear your story, although I'm sad that you had to go through all these.

When I see such people like yourself, I have even more encouragement. I am now just after my first and unexpected surgery, I left intensive care unit yesterday in the morning and I feel generally fine now.

I will try to talk my doctors in to continue the chemo next week already, because I don't want to give more chance to mets in my liver to expand more.

I wish to see you NED, and I hope I'll join you soon after. 

Thank you for your kind message, 
Uğur 

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