33 year old - Stage 4 - no family history

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ftp123
Posts: 2
Joined: Tue Nov 21, 2017 1:18 am

33 year old - Stage 4 - no family history

Postby ftp123 » Tue Nov 21, 2017 1:38 am

Hello All,

Just wanted to join and share my story.

I'm 33 years old, Vietnamese, youngest of 8, both parents are in their 70's(healthy), no family history, 18% body fat, I don't drink alcohol, no sodas, no smoking and generally eat really healthy.

I recently got married in June!

Everything about life up to this point has been perfect. I was a usual once a day pooper, within an hour of waking up. My body was like a clock, with no signs or symptoms of anything wrong. Starting in July I noticed a change in my bowel movement. I wasn't going every morning as I was before. Sometimes I would go 2-3 days before I could finally go. There was one day where I believe it was close to 4 days since I had gone #2 and took some laxative to help me with a bowel movement. That didn't help either. Eventually I had a bowel movement after lots of pain and suffering like I never felt before. I just thought it was constipation and tried to eat a little healthier. I never had any blood in my stool.

From July - October, I had good weeks and bad weeks of bowel movements after learning to control my stool hardness by diet.

In October I finally went to go see a gastrointestinal doctor. The first visit he put me on a bunch of fiber and sent me home for another appointment in exactly a week. When I came back and reported the fiber didn't help at all, he immediately scheduled me for a colonoscopy the following week(AMAZING DOCTOR).

He couldn't go past 7 inches into my rectum because there was a 2 inch tumor sitting in the sigmoid colon.

A few days later after doing a CEA(Level 25) blood test and getting the results back from the biopsy. It was confirmed I had colon cancer. As you can imagine, this came as a big shock to me. I won't go into all the details of all the questions that flowed through my head.

It's confirmed I have stage 4 Colon Cancer, there is 1 tumor inside the colon about 2inches in diameter(SUV 8.9) and an additional tumor right outside the colon in the fatty tissue about 1/2" diameter(SUV 4.6). This was done via PET scan

Since I've been diagnosed with cancer only 3 weeks ago, I've had a port installed, my first round of chemo and on the road to fighting this thing we all call cancer.

Just wanted to share my story with everyone and show that cancer can really effect anyone it wants.

Feel free to ask any questions

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: 33 year old - Stage 4 - no family history

Postby veckon » Tue Nov 21, 2017 2:39 pm

Have you had genetic testing done yet? If your tumor is MSI-H, you may qualify for Keytruda, but you might have to fail FOLFOX first if insurance complains. I also have spread into fatty tissue, and once that happens IV chemotherapy can’t reach soft body tumors well due to lack of blood vessels.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: 33 year old - Stage 4 - no family history

Postby fumaros » Tue Nov 21, 2017 3:27 pm

I am sorry this happened to you. This is a great place to be to ask questions and get comforted by people who understand what you are going through. All the best on this long journey. I pray you will come through this okay.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: 33 year old - Stage 4 - no family history

Postby NHMike » Tue Nov 21, 2017 3:40 pm

MSI-H can be determined by ImmunoHistoChemistry testing which insurance companies will cover more easily than genomic testing. The IHC testing should be standard practice on a biopsy with a colonoscopy (that's what they did to me). I think that genomic testing of the tumor is a good idea but I think that it can be a challenge to get coverage for it.

The original poster has several things going for him - young, healthy and no co-morbidities so he should be well able to handle treatment. It's overall a rough road but there are lots of long-term survivors here and lots of us going through treatment now so you have lots of company here. We understand how tough it is, the hard stuff going through your mind, how to deal with friends, families, co-workers, etc. Always feel free to ask questions.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: 33 year old - Stage 4 - no family history

Postby juliej » Tue Nov 21, 2017 3:45 pm

Sorry you have to be here but you have found a great place for info and support!

I'm a Stage 4 and also had no family history and lived a very healthy lifestyle. I had a hard time even convincing my doc to order a colonoscopy because I was so healthy. He thought I might have a bacterial infection in my GI tract. In fact, the last thing he did before the colonoscopy was to reassure me that this was not going to turn out to be cancer! :shock: Cancer is such a sneaky bastard.

Sounds like you're doing the right things and off to a good start, but here's a bit of advice.

If you have surgery, confirm that your surgeon is a board certified colon rectal surgeon, not a general surgeon.

Lynch Syndrome, MYH-Associated Polyposis, and Hyperplastic Polyposis Syndrome are all inherited types of colon cancer so you're not likely to have them since you have no family history. However, get tested anyway to make sure.

Other genetic tests you should have include: KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. KRAS is especially important since it determines whether you can take anti-EGFR therapy like Erbitux. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab, a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now.

You've had your CEA tested, but you might ask for CA19-9, LDH, and 25 hydroxy vitamin D tests also.

You have a port (smart!) so your veins are protected from the chemo. If you got a "power port" it can also be used for the contrast during CT scans. Your oncologist should have given you a bunch of meds (antiemetics, antidiarrheals, etc.). If they didn't give you a script for Ativan you might ask for it too. It helps with anxiety and nausea (2 for 1!). Make sure you stay hydrated after chemo treatments. Drink water, or even better, drink an electrolyte drink, even when you don't feel like it. This will flush the excess chemo from your body and make you feel better.

I know it's overwhelming at this point -- the shock of the diagnosis is more than enough to handle without the steep learning curve of treatment types, drugs, tests, etc. but hang in there. We have all walked in your shoes and can help answer your questions and concerns. Please know that you are not alone. I was diagnosed Stage 4 in 2010 and I am still very much alive and doing well today!

Hugs to you!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

taexali
Posts: 17
Joined: Thu Jul 12, 2012 1:41 pm

Re: 33 year old - Stage 4 - no family history

Postby taexali » Tue Nov 21, 2017 4:08 pm

Hi ftp123,

I’m very sorry to read about your cancer.

I spent 4 years of misdiagnosis before it became very obvious early in 2007 that I wasn’t suffering from hemorrhoids/IBS/stress/depression/dysentery/etc., and
instead I had a very bad case of stage 4A rectal cancer with lung mets.

Fortunately by chance and by changing doctors, I luckily found specialists that I was very comfortable with, and I trusted them completely.

I put myself completely in their hands, and endured all the radiation/chemo/surgeries that they dealt out to me.

I never questioned them, and never delayed or put off treatment, even when my body was crying out that it had enough of it.

It wasn’t easy for me (I was 61 years old at the time), and I almost reached the limit of my endurance once or twice.

But that was more than ten years ago.

I feel that it’s really important that you find doctors and specialists that you like and trust.

It looks as if you found a gastroenterologist that you like: I hope that you find more doctors like this.

You probably have your age to your advantage when it comes to putting up with your treatment.

I got the feeling from the style that you wrote about about your situation that you’re already mentally prepared to deal with your future.

I hope that your spouse is ready to help you through your treatment: it might get difficult because you might become a very different, and even difficult,
person when things get uncomfortable and unpleasant. But these days will pass, and return, and pass again until it’s eventually all over.

I thought that I’d be an invalid for the rest of my life if I ever got through my treatment.

But in 2010 I got married.

Last year, even though I don’t have a rectum, and I’m missing a big chunk of my lung, I climbed up two steep 9000’ mountains in Oregon, and my wife
and I go canoe-ing in the lakes.

There are several 10 year survivors on this blog, and I hope that one day you’ll become one too.

Taexali
Male 77 yrs.
DX 7/11/2007 at age 61 with Stage IVa Rectal with mets to lung
8/2007 to 9/2007 Chemo (Fufa?) & Radiation
12/2007 LAR + Colonic J-Pouch + Ileo
1/2008 to 9/2008 Chemo (Oxaliplatin) 15 Sessions!
11/2008 Ileo reversal
5/2009 Left lower lobectomy, with two(?) lymph nodes removed.
11/2022 Still NED
01/21 Skin Cancer- ugh!

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susie0915
Posts: 945
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: 33 year old - Stage 4 - no family history

Postby susie0915 » Tue Nov 21, 2017 4:52 pm

I'm so sorry for your diagnosis. It always makes me sad when I read about someone so young dealing with cancer. However, know that treatment has come a long way in the past few years, and as you will see on this forum, there are many stage 4 patients here that are doing well and have been NED for years. I am always so inspired by how so many here deal with their diagnosis with such positivity, strength, and dignity. As many of already told you, be persistent and in charge of your care. If you have questions about any part of your treatment, ask and research if there are other options. Good luck with your treatment and don't be afraid to come on here to ask a question, complain or vent about anything. Sometimes you just have to scream at the sky, and this is the best place to do it.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: 33 year old - Stage 4 - no family history

Postby veckon » Tue Nov 21, 2017 6:37 pm

NHMike wrote:MSI-H can be determined by ImmunoHistoChemistry testing which insurance companies will cover more easily than genomic testing. The IHC testing should be standard practice on a biopsy with a colonoscopy (that's what they did to me). I think that genomic testing of the tumor is a good idea but I think that it can be a challenge to get coverage for it.

The original poster has several things going for him - young, healthy and no co-morbidities so he should be well able to handle treatment. It's overall a rough road but there are lots of long-term survivors here and lots of us going through treatment now so you have lots of company here. We understand how tough it is, the hard stuff going through your mind, how to deal with friends, families, co-workers, etc. Always feel free to ask questions.


Two things:

1) You need the tumor tested for MSI-H if you actually want to get your insurance to cover Keytruda. So unless you are in the 1% and can pay for everything out of pocket, your oncologists will have your tumors analyzed if they want to use Keytruda or similar and not pay for it themselves.

NOTE: At MSKCC (and I'm sure other major cancer centers), they will take care of all of this for you. I didn't have to ask for any of this; my oncologist and team made sure I was getting the treatment I needed regardless of cost. I never deal with my insurance directly. I just pay the co-pays until I hit the max out-of-pocket limit, and that's it.

2) I'm young, have no co-morbidities, and have spent much of this year in unbelievable agony. Treatment is tolerated differently by everyone, and I'm glad you're doing well, but I've been told "but you're young and look good!" so many times when I've wanted to just die already, that the suggestion has become offensive to me.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: 33 year old - Stage 4 - no family history

Postby susie0915 » Tue Nov 21, 2017 6:55 pm

veckon wrote:
NHMike wrote:MSI-H can be determined by ImmunoHistoChemistry testing which insurance companies will cover more easily than genomic testing. The IHC testing should be standard practice on a biopsy with a colonoscopy (that's what they did to me). I think that genomic testing of the tumor is a good idea but I think that it can be a challenge to get coverage for it.

The original poster has several things going for him - young, healthy and no co-morbidities so he should be well able to handle treatment. It's overall a rough road but there are lots of long-term survivors here and lots of us going through treatment now so you have lots of company here. We understand how tough it is, the hard stuff going through your mind, how to deal with friends, families, co-workers, etc. Always feel free to ask questions.


Two things:

1) You need the tumor tested for MSI-H if you actually want to get your insurance to cover Keytruda. So unless you are in the 1% and can pay for everything out of pocket, your oncologists will have your tumors analyzed if they want to use Keytruda or similar and not pay for it themselves.

NOTE: At MSKCC (and I'm sure other major cancer centers), they will take care of all of this for you. I didn't have to ask for any of this; my oncologist and team made sure I was getting the treatment I needed regardless of cost. I never deal with my insurance directly. I just pay the co-pays until I hit the max out-of-pocket limit, and that's it.

2) I'm young, have no co-morbidities, and have spent much of this year in unbelievable agony. Treatment is tolerated differently by everyone, and I'm glad you're doing well, but I've been told "but you're young and look good!" so many times when I've wanted to just die already, that the suggestion has become offensive to me.


Veckon,
You must be able to hide your pain pretty well. You are young, and probably do look good. But, I understand how it feels when people don't really know all you are feeling inside, and going through when no one is around. I can't profess to know what and how you are feeling, but I hope you have the strength to continue fighting and receive positive news in the future.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

ftp123
Posts: 2
Joined: Tue Nov 21, 2017 1:18 am

Re: 33 year old - Stage 4 - no family history

Postby ftp123 » Tue Nov 21, 2017 11:57 pm

Thanks for all the warm welcome.

I did do a cotton swab for genetic testing a few weeks ago by a company called GPS? We haven't gotten the results back yet, but I'll report back what they find.

Being the youngest one of 8, I have such a big support system with family and friends. In addition, my wife has been amazing through this whole process and has gone with me to every single one of my visits to make sure we both hear everything and not miss anything. We're also fortunate that we own our own company which allows us flexibility in our schedule.

I'm currently on the following chemo combination (5 FU, Avastin, Oxaliplatin). The plan is to make sure the cancer doesn't spread and shrink it to a manageable size before surgery.

I wanted to share what has really helped me physically through this.

My physical stats before I was diagnose was 6' tall and about 156lbs. Right now, I'm down to 142lbs. The doctors want me to stay as close to 150 as possible and eat as much as I can to maintain my weight, in preparation for surgery because I'll probably lose 10 more lbs at that time. It's a catch 22 because the more I eat, the more poop i'll have and I have a blockage. Even with a high fiber diet our body naturally wants to create regular size poop. What has helped me through this is the following.

Every morning I drink about 4-5 ounces of this aloe vera drink on an empty stomach and do the same before bed. It doesn't taste like anything and has helped me with my bowels movements and cramps. I have absolutely no pain or cramps since I started drinking this.
https://www.amazon.com/gp/product/B0001 ... =UTF8&th=1

In addition, on days that I feel really backed up and it's been more than 1.5 days since my last poop, I'll drink about 3 ounces of magnesium citrate, you can buy it at CVS. After about 3-6 hours I have a really soft bowel movement, no diarrhea.

In some cases when I want an immediate relief, I give myself an enema which helps loosen up the stool and adds extra moisture to help the poop move past the tumor.

Between these 3 products, I'm able to have a normal day pretty much every day. I feel like I have full control of my poop.

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horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: 33 year old - Stage 4 - no family history

Postby horizon » Wed Nov 22, 2017 10:15 am

I can relate to a lot of what you said. It really sucks and I spent a lot of time at the beginning saying "why me?" because there wasn't an explanation as to why this happened to me. You'll find a lot of people who can relate to what you're going through here!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: 33 year old - Stage 4 - no family history

Postby NHMike » Wed Nov 22, 2017 10:25 am

veckon wrote:
NHMike wrote:2) I'm young, have no co-morbidities, and have spent much of this year in unbelievable agony. Treatment is tolerated differently by everyone, and I'm glad you're doing well, but I've been told "but you're young and look good!" so many times when I've wanted to just die already, that the suggestion has become offensive to me.


I'm often told by others that I'm the healthiest person they know. A manager told me several years ago that I looked like a college student. I ran 40 miles the week before my diagnosis and am aware of how painful treatment can be. But I've read about the difficulties that older people and younger people with co-morbidities go through and it's usually a lot tougher for them. The wife of a friend died of cancer a few years ago and I asked why she died as her condition sounded treatable but she had co-morbidities that made it difficult for her to get through treatment. It can be quite a challenge driving yourself everyday for radiation treatment, or giving yourself daily injections or even traveling to another city for top-notch care.

Your body starts to degrade in your 30s and the degradation accelerates as you get older unless you actively work to try to retard aging. It's tough to recover if you don't get your act together by the time you're 50 as you may have chronic and structural issues which make it a lot harder to repair your body.

I'm sorry that you've had such a hard time with treatment.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: 33 year old - Stage 4 - no family history

Postby NHMike » Wed Nov 22, 2017 10:36 am

juliej wrote:Lynch Syndrome, MYH-Associated Polyposis, and Hyperplastic Polyposis Syndrome are all inherited types of colon cancer so you're not likely to have them since you have no family history. However, get tested anyway to make sure.

Other genetic tests you should have include: KRAS, BRAF, MLH1, MSH2, APC, MSH6, PMS2, and MUTYH. KRAS is especially important since it determines whether you can take anti-EGFR therapy like Erbitux. Additionally, testing for MSI or MRI status (MLH1, MSH2, MSH6, PMS2) lends information for the option to use pembrolizumab, a PD-1 inhibitor, and part of a new set of exciting immunotherapy drugs that are coming out right now.
Juliej


One aspect that I just learned about in another thread here today is KRAS G12V which is associated with worse prognosis than the other KRAS mutations. BRAF V600E is also an aggressive mutation. NRAS, though not that common, is also associated with worse prognosis. CRC often grows slowly so Oncologists may seem like they're not moving as fast as they can. I think that that's okay for most mutations but there are a few where you don't want to wait long for treatment.

The Genomic Tumor Tests aren't always part of standard care and insurance may not cover them. I asked my Oncologist about getting tested and he didn't order the test. He did order the MSI-High tests from the Mayo Clinic and one or two others in relation to Xeloda but it's clear that it wasn't a standard thing to do as it wasn't done. I had it done outside of my official medical care.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: 33 year old - Stage 4 - no family history

Postby GrouseMan » Wed Nov 22, 2017 11:23 am

You are a lucky young woman from the standpoint that the doctor got you scoped pretty quickly. Otherwise healthy clockwork folks when things start going strange should get that colonoscopy ASAP. My wife was a very healthy physically fit woman - though older than you. She went regularly to see her doctor. Pap smear breast exam etc. She was a life time runner, and we always ate pretty healthy though we tended to probably eat more red meat than most - however we knew where our beef came from (ie pasture raised for us). My wife in fact was training with a group and coach to run a marathon at the time she was diagnosed.

She and her doctor talked themselves out of the age 50 colonoscopy - her doctor mainly because my wife was so seemingly fit and healthy - my wife because of all the horror stories about how terrible it was to go through the prep for it! The next couple of years she started to go through a change in bowel movement issues - she was also going through menopause. She chalked it up to that initially but three years later her symptoms had manifest to bloody stools and she confided that to me. I having spent quite al lot of my career as an Anticancer Drug discover chemist talked her into making another appointment with her doctor and getting the referral to the GI doctor for a colonoscopy. Still the doctor thought my wife was to healthy for it to be cancer - made some dietary suggestions and said she thought it could be diverticulitis. But she did go ahead and get her scheduled for that colonoscopy. Well - Ya - turned out to be Stage IVb colon cancer. Mets to Liver and Spleen - and initially they thought her lungs.

She put up quite a fight for almost exactly 4 years from diagnosis. But finally the peri mets had spread and at that point little could further be done. Her Liver mets had calcified because of the chemo and the mets on her spleen completely disappeared. The spots they thought were mets in her lungs were not cancerous as they never grew or shrank while she was under treatment. 4 straight years of chemo without a break. Now - turns out after the fact that her mothers brother develops polyps like a farm and has a scope every year. At the time we didn't know that. Her mother had breast cancer and her father bladder and prostate cancer. But her doctor was unaware until too late. Goes to show you the importance of family histories.

Ive no doubt that had her doctor known of these family histories and my wife had had that colonoscopy at age 50 rather than at 53 - she would be here today, as they probably would have caught it before it broke through her colon and spread. She was one hell of a tough fighter - rode a horse for a week at one field trial, then another in Canada a couple days later then following that up by judging one again off horseback all just 4 weeks shy of me taking her to the ER before things went really sour, and I brought her home to pass away in June.

Overall - the healthcare situation I feel failed us. But based on what you have said - looks like you got seen too earlier and as Juliej said - get the genetic testing done, and a plan in place for your treatment. You are young and they can probably be more aggressive in the treatment options they will have available for you than with someone 20 years older despite them being physically fit. - I won't lie - Chemo and immunotherapy treatment will be hard. Surgery will be a cake walk in most instances unless you end up going the HIPEC route (Go to Pittsburg as they are the experts in this procedure in the US).

Good luck in your journey.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017


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