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Metastasis, only 21, and desperate

andreae
Posts: 238
Joined: Sep 2003

Hi everyone. In January of this year I was diagnosed with stage 3 rectal cancer. I did 6 weeks of radiation and chemo (5FU) followed by a surgery which included a colostomy and partial vaginectomy. I finished up with four rounds of chemo. Two weeks after my last chemo a CT scan was done and it came back positive. Further testing revealed eleven small lesions on my lungs and one suspicious spot on my liver. I am devastated. I just turned 21 years old and I am very scared about the prognosis. I am at the mercy of the conservative and limited Canadian system and my oncologist has recommended that we delay treatment until January when he will redo the scan and reaccess. I am confused about the postponment of treatment and upset that I didn't respond to the major course of therapy I just had. I have given up my fertility, vagina and normalcy to this cancer and the doctors are now saying that I will have to sacrifice my future. I am a fighter, however, and very determined to live. I think it would be helpful to compare notes with someone in my age bracket (20-29) with rectal cancer because none of my doctors have ever even seen someone remotely close to my age with colorectal cancer. Also, if anyone has any suggestions on where to seek the best treatment or clinical trials, could they relay the information. Thank you.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Hi andreae

Although I'm 35, I still have the mind of a 21 year old, and understand how devastated you are. I am a true believer that as long as you are still here, there is hope. And you are no exception. I don't understand the Canadian healthcare system, but contact my friend, Lisa Rose on this web site, and she may provide you with some help.

My treatments were similar to yours, however, mine was contained after it spread to my liver. My heart goes out to you and your family, as you sound oh so brave and that could only work to your advantage.

My suggestion to you is to keep the faith, regardless of how tough it is, and try to seek other doctors in your area which may have a greater understanding of current clinical trials.

My prayers go out to you,

Stacy

Lisa Rose's picture
Lisa Rose
Posts: 594
Joined: Mar 2003

Hi Andreae,

Wow , You have been through so much for a young lady but you have to remain positive and stay focused . I also live here in Canada and I am very aware of how our medical system works . But I think you really need to seek a second or third opinion from another oncologist . You are your own advocate and no one knows your body like you do.... So don't take the advice of one DR and leave it at that . If your not sure how to go about seeking further advice go back to your family doctor .

March 20 , 2002 I was also diagnosed with rectal cancer stage 3 like yourself with 10 positive lymph nodes , I was 40 years old at the time .

Andreae this is a great site for support so you just hang in there . There are alot of people hear that can offer you some good sound advice .

Positive attitude is everything!!!!!

Please feel free to contact me if I can help in anyway.

Lisa

You can also check out my personal profile .

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

hello andreae,

So while you're waiting for your oncologist to get with the program start researching like crazy and find some alternative you can do to try to heal your cancer. There are plenty of them out there. It involves dietary changes, sometimes drastic, and detoxing which can sometimes make you feel lousy for awhile, and lifestyle changes but it's your life and worth living for right?

www.curezone.com has many healing approaches to research.

www.hacres.com was started by a man healing his own colon cancer through diet.

There is a lot you can do to take control of your disease to try and beat the wallies out of it while your doctor waits.....and waits.....

I have only done alternative approaches and said no to chemo so if you are at all interested in what my protocol is just email me and I would happy to share with you.

I was Stage III lymph pos colon ca.

peace, emily

athinoula
Posts: 3
Joined: Feb 2010

Can you please send me your protocol? Thanks my mom has cancer that spread to the lungs we are trying alternatives but not sure what is the best would love to compare.

Thanks

efw
Posts: 20
Joined: Jul 2003

Hi andreae. I was 29 when I was diagnosed with Stage III colon cancer last January. I've always exercised regularly and watched what I eat, and there is no history of cancer in my family. I had 27 out of 29 lymph nodes that were positive. I had a temporary colostomy and went through six months of chemo (5-FU, leucovorin, and oxaliplatin). After chemo, I had a CT scan, PET scan, MRI, and ultrasound, and everything came back negative. However, with so many positive lymph nodes, I'm certainly quite worried of recurrence.

I'm frustrated with how dismissive doctors are when it comes to diagnosing young people with colorectal cancer. People our age almost always end up with later stages of the disease, because it's not worthwile to test us when we show the symptoms; however, an older person with the symptoms will usually be recommended a colonoscopy.

Try to stay positive. I know it's tough. Good luck.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Andreae -

You have a great attitude - keep fighting. Although I am not familiar with the Canadian system, if LisaRose says you can get a 2nd and 3rd opinion, then DO IT! Find yourself an oncologist who isn't conservative and who will be a partner with you to FIGHT!

Like efw says, younger people aren't caught in the early stages of this disease like older folks are. I asked for four years to get a colonoscopy due to the high incidence of colon cancer in my family. I was always dismissed with a "You're too young to worry about it" (I'm in the US military and we have our own socialized medicine system within the service, so I can appreciate your position). Funny thing - four years later, they found two tumors that, had I been given a colonoscopy when I asked for one, they would have nipped them in the polyp.

You hang tough and fight - keep you attitude and seek out someone who will fight with you. Come here to vent anytime - there are lots of great people who will be here for you.

And in the meantime, look into some of 2behealed's (emily's) homeopathics.

Keeping you in my prayers...

- SpongeBob

iloveron
Posts: 12
Joined: Apr 2003

Hello Andreae, I'm the wife of a colorectal survivor. I would like to encourage you to ask your doctor about taking celebrex off label at 400mg, twice a day, that's 800mg a day. Our doc said there's no more possible sideaffects at that dose than at the recommended 200mg a day. Celebrex is a COX 2 inhibitor that has been studied to reduce the tumors ability to establish a blood supply. Also, have your doctors watch for FDA approval of Avastin and the Martha Stewart drug, Immclone's erbitux, not sure how it's spelled. Also, eat and juice lots of raw things, develop an exercise routine that's easy and fun and get your family and friends behind you. Take care of your body, heart and soul. Work on healing your whole self. My Prayers will be for you tonight.

sharon51
Posts: 1
Joined: Feb 2004

My nane is Sharon. My son is 28 years old and is newly diagnosed with colorectal cancer which is now considered metastatic. His liver is seriously involved, left lung, maybe pancreas. Devastated is not a true description of how we feel. When a young person gets this kind of diagnosis, we find ourselves running in circles not knowing what to do. Plus he has no insurance and can we really be sure that he is getting the appropriate care that someone who is insured would get. I asked that question to our oncologist, he assures me that we are. You just have to trust that the doctor is telling the truth. Chris started out on Oxaliplatin, Lukovorin, and 5FU. WE did two rounds of that and then has ct scans and mri only to find out that the original liver spots had multiplied as well as his lung and pancrease. Now we are getting started on carboplatin, gemsar, and another I cannot remember now. Our devastation is undescribable. Our whole family may as well have the MONSTER cancer to fight.

athinoula
Posts: 3
Joined: Feb 2010

I am so sorry for youre devistation. It is the hardest thing I have tried to deal with also.
My mom has had it for a little over five years and it's been a attle all the wya through.
Ask about RFA.

I will be praying

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athinoula
Posts: 3
Joined: Feb 2010

I'm not sure but proper diet and keeping your immune system strong can help.
They say cancer loves sugar witch includes all sweets and white breads, white rice,and pasta potaotos. Keeping your body alkaline also helps because cancer cannot survive in a a alkaline body. This would be like trying to eat less sugars and white starchy foods and meats.
Drink a lot of carrot juice and beats and brocolli mixed together. If you visit a natural health food store they may be a able to give you lot's of advice about keeping the body Alkeline and the role it plays with cancer.
You can also ask if your a candidate for RFA or cryosurgery and if they do it at your hospital.
If they don't ask who does?
Not sure what province you are in?

take care my sweet child and god bless you

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

That was a 6 1/2 year old post from a young gal who is no longer living. She had a saying that is brought up every once in a while. She'd say 'Cancer may kill me, but not TODAY'.

I LOVE that saying!

Lisa Rose's picture
Lisa Rose
Posts: 594
Joined: Mar 2003

Sweet baby girl Andre Elder passed away May 10, 2006 at the tender age of 24, she was an amazing your women.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

Yes Lisa, Andrea was an amazing young woman. She was a strength to many on this board.

As far as new diet information, I know of a great library, however it's in Russia, and I have no plans to visit there in the near future. Not sure why this post was pulled from so long ago...hmmmmmm, interesting.

Pretty cryptic I know, but those who know of it totally understand it.

Time tells all,

Stacy

victory10's picture
victory10
Posts: 75
Joined: Dec 2009

don't wait! Get another drs opinion as soon as possible would be my heartfelt suggestion to you.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

My heart skipped a beat when I saw this.

I hope this was an honest mistake.

Sweet Baby Girl, we love you!

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