34 year old with recent diagnosis. So many questions

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34 year old with recent diagnosis. So many questions

Postby level » Fri Jun 02, 2017 6:01 pm

So about two months ago I found out I had colon cancer. My only symptom was anemia and pain that they thought was diverticulitis. They removed the tumor and found out it was colon cancer. They pulled 20 lymph nodes and scanned my liver and other areas and found 4 nodules on my lungs. All of which they feel are too small to biopsy. So they are treating me as if it is Stage 4. I was in pretty good health before this. And today I feel fine. But I start chemo, "using a pump" this coming Wednesday, and I'm told I will be on chemo for life.

I guess my questions are below, I know you can't answer them all accurately, but any feedback from you would be beneficial:

1. How bad is this chemo going to be?

2. Will I have to stop working, lose my job etc? Without my job I won't have medical insurance.

3. How long will I have to live? Should I be giving up hope of getting married? Having children?

4. Should I get a second opinion? My friends and family keep asking me if I want to, they seem to believe that the lungs aren't related because there was no cancer in my liver and nothing in the lymphnodes. I wonder if that's a big waste of time when I have to get treatment anyway.

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: 34 year old with recent diagnosis. So many questions

Postby TXLiz » Sat Jun 03, 2017 12:17 am

So sorry you are here. You must be reeling. You are extremely young!

1. Chemo "badness" depends on type of chemo and your reaction to it. Some people don't feel so poorly during, some get hit hard. Take it treatment by treatment and take care of yourself. Generally, chemo makes you fatigued, nauseous, makes you lose your appetite, etc. I had 5 FU and had fatigue, appetite loss, and felt generally unwell, the day of treatment and for a few days afterward. As my treatment went on I felt weaker and more unwell. I developed neuropathy ( numbness and tingling) in my hands, feet, and legs. Any cold liquid or food made my throat feeling as if I were swallowing broken glass. These symptoms are receding now I no longer have chemo. Your doc or the chemo nurses should give you an info packet on what to expect and issues that may arise.

2. People here have worked through chemo. Will your employer work with you to arrange a schedule that is flexible so you can have chemo days off? Allow you to have a lighter schedule? Allow you to go home if needed? I know at my oncology center they had a social worker who could help patients with questions like yours. I know your chemo is different than mine, but soon someone who knows more will answer you.

3. Do not give up hope of marriage and kids. Don't give up on the future! You have a lot of work ahead fighting cancer and none of us, none of us, cancer patients or not, are promised tomorrow. Just because you have cancer, doesn't mean your life is over. It's shocking and terrible but don't give up. Your life expectancy will depend on your diagnosis and response to treatment. And even then: NOBODY TRULY KNOWS. Lots of people here have fought through cancer and against odds stacked against them.

4. If you feel you need a second opinion, get a second option.

One good thing is you found this forum. There are many super smart pros here, members who have been to hell and back, that are informed and generous with insight and experience. You are among friends and people who know the deal here.

I am less than a year out and still learning and understanding this disease. Although you want to educate yourself and understand things, stay away from Doc Google.

Good luck and hang in there. Hugs and positive thoughts to you.
Last edited by TXLiz on Sat Jun 03, 2017 11:00 pm, edited 1 time in total.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: 34 year old with recent diagnosis. So many questions

Postby TXLiz » Sat Jun 03, 2017 12:21 am

Also: ask your oncologist if your tumor has been tested and is MSI high. MSI high tumors are thought to respond well to immunotherapy, a new cancer treatment.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

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Posts: 5
Joined: Fri Jun 02, 2017 5:53 pm

Re: 34 year old with recent diagnosis. So many questions

Postby level » Sat Jun 03, 2017 8:33 am

Thank you both so much for just taking the time to respond. I'm in tears just from the fact that you're willing to share. If I can ask another question, did you all feel fine, normal prior to diagnosis? I guess the hardest part of this for me is that they are telling me I have this condition and I don't feel anything unusual.

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: 34 year old with recent diagnosis. So many questions

Postby KElizabeth » Sat Jun 03, 2017 11:28 am

Hi there,
I was 34 when I was diagnosed and I'm a chemo lifer.
Chemo and work are totally doable. I work full time, in fact I am the family bread winner. I take chase my kids,work in the garden an go out with friends. Life is not over! I got married to my best friend a year and a half ago, and I've never been happier.
There are many here on this forum who can offer advice on getting the best treatment. It's up to you to be your own advocate and ensure that your treatment plan is the best it can be. For me doing research helped ease my anxiety some by helping me feel in control of what was and is happening to me. There's no saying what time frame we have. Many statistics are out of date and based on a population much older than we are. You Wil find many here who have survived many years and some who have been cured. Don't give up hope or your desire to live life to the fullest.

Take care.
~Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 34 year old with recent diagnosis. So many questions

Postby Lee » Sat Jun 03, 2017 3:31 pm

Can you get a PET scan? If cancerous, those 4 nodules should light up. Sometimes people can have nodules in there lungs and NOT be cancer.

And yes, if I were you, I would get a 2nd opinion at a major cancer treatment center.

Do you know if you are getting FOLFOX? How about Avastin?

I would recommend eating prior to chemo, I usually grabbed an breakfast egg cheese sandwich on the way to chemo. For me, keeping food in my stomach, kept nausea at bay, Thus I ate several small meals vs 3 meals a day.

Good luck, let us know how it goes with your first chemo treatment.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

level
Posts: 5
Joined: Fri Jun 02, 2017 5:53 pm

Re: 34 year old with recent diagnosis. So many questions

Postby level » Sat Jun 03, 2017 3:37 pm

Lee wrote:Can you get a PET scan? If cancerous, those 4 nodules should light up. Sometimes people can have nodules in there lungs and NOT be cancer.

And yes, if I were you, I would get a 2nd opinion at a major cancer treatment center.

Do you know if you are getting FOLFOX? How about Avastin?

I would recommend eating prior to chemo, I usually grabbed an breakfast egg cheese sandwich on the way to chemo. For me, keeping food in my stomach, kept nausea at bay, Thus I ate several small meals vs 3 meals a day.

Good luck, let us know how it goes with your first chemo treatment.

Lee


I have had a PET scan. 3 of the 4 lit up. I am getting folfox and avastin.

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: 34 year old with recent diagnosis. So many questions

Postby betsydoglover » Sat Jun 03, 2017 3:53 pm

Sorry you have to be here. As someone else said, please get a PET scan - it can give a lot of insight into whether or not "spots" are possible mets. They are actually very reliable - occasionally some people say they are unreliable, but in my experience with a good radiologist they are highly reliable.

I also think a second opinion would be advisable. I'm not a doc,but it seems wrong to me - based upon my experience (see signature) - to be told that you are "chemo for life" when you haven't had a single treatment, so have no idea how effective it will be, and have no confirmation that your lung spots are actually cancer.

Even if the lung "spots" are cancer, they can still be treated via surgery, RFA etc.

IMHO please seek a second opinion, preferably at a major cancer center (unless you are in a major metropolitan area with many oncs to choose from).
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 34 year old with recent diagnosis. So many questions

Postby Lee » Sat Jun 03, 2017 4:01 pm

level wrote: . . . they seem to believe that the lungs aren't related because there was no cancer in my liver and nothing in the lymphnodes. I wonder if that's a big waste of time when I have to get treatment anyway.


Somehow I missed this piece of information.

Generally when someone has a met, lymph nodes are involved, not always, butt 99% of the time they are involved. The cancer travels from primary location, to the lymph nodes, to a new location (met). Since you have no lymph node involvement I would be suspicious about your lung met.

And yes, generally colon cancer tends to travel to the liver, while rectal cancer tends to travel to the lungs.

Again, I would really get a 2nd opinion (at a major cancer treatment center) and push for a PET scan if you can.

Good luck,

Lee

P.S. Edited to add this comment. If it turns out those nodes are NOT cancerous. You are looking at a stage II. That is not a "chemo for life" person. Just mope up chemo, maybe 6-12cycles.

Butt if they are cancerous, as others have said, there are options for getting rid of them. Many go on to NEDville (No Evidence Detected). Not all Onc are the same. Some are a bit more knowledge than others. And a "major cancer treatment center" is on the leading edge of the best ways for treat cancer aggressively. And at your age, that is who you want fighting for you.
Last edited by Lee on Sat Jun 03, 2017 5:07 pm, edited 1 time in total.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: 34 year old with recent diagnosis. So many questions

Postby Tdubz » Sat Jun 03, 2017 4:18 pm

I was 36 when I was diagnosed in march. I've had 2 rounds of chemo so far with the third one Monday. Go into chemo with a positive attitude. I found that I felt worse when I was worrying about side effects. With that said, make sure you keep track of all your side effects and let the doc know. They will usually have a medicine they can give you for most side effects.

As for work, I just went back this week. I'm taking treatment weeks off for now, and going into the office on my off treatment weeks. I'll start working from home on my off treatment weeks once my work approves it.

The whole diagnosis is a lot to take in and it can be hard, especially being so young, but don't give up, you can make it through this

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ANDRETEXAS
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Location: Austin, Texas (University of Tennessee alumnus)

Re: 34 year old with recent diagnosis. So many questions

Postby ANDRETEXAS » Sat Jun 03, 2017 5:05 pm

You can do this !!!! Stay positive and keep with the program. Talk to your oncologist before each infusion...and communicate !! Tell them everything you want to discuss. Please take one day at a time...and again, most importantly....stay positive!!! If you can, exercise as much as possible. I continued to walk 3 miles a day even with the pump. Any exercise will help -- your body's ability to recover and your mental state. You can worry about any "chemo for life" later. Pulling for you..... Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy

ONE DAY AT A TIME !

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 34 year old with recent diagnosis. So many questions

Postby Lee » Sat Jun 03, 2017 6:12 pm

level wrote:
I have had a PET scan. 3 of the 4 lit up. I am getting folfox and avastin.


Okay, yes your are a stage IV, butt you are not out of options yet. As Betsy wrote, there's surgery, FRA.

There is a lot of advancements being made immunotherapy. This is Celine's journey along with a few other people, She is NED today. You might want to read her thread.

viewtopic.php?f=1&t=49736

Where are you, in the USA? Sorry for harping, butt since you are a stage IV, get that 2nd opinion.

You are not alone, you will find a lot of information and support here. Feel free to vent anytime here.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: 34 year old with recent diagnosis. So many questions

Postby TXLiz » Sat Jun 03, 2017 11:07 pm

level wrote:Thank you both so much for just taking the time to respond. I'm in tears just from the fact that you're willing to share. If I can ask another question, did you all feel fine, normal prior to diagnosis? I guess the hardest part of this for me is that they are telling me I have this condition and I don't feel anything unusual.


I had a complete blockage from a huge tumor in my abdomen and never felt any abdominal pain. Crazy, right? I was diagnosed with IBS around 2010/11 and have had diarrhea or constipation on and off. I never saw any visible blood in my stool. I didn't have any nausea or vomiting except for the day I went to the ER and was diagnosed. I think the only sign may have been fatigue, but nothing that alerted me.

You'd think a person with a giant tumor growing inside them would be sick and in pain but nope, not I.

I have read many accounts of people who have advanced cancer and feel ok.

Hope you are feeling ok, it'll take some time to wrap your head around.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 34 year old with recent diagnosis. So many questions

Postby Lee » Sun Jun 04, 2017 12:01 am

TXLiz wrote:I had a complete blockage from a huge tumor in my abdomen and never felt any abdominal pain. Crazy, right? I was diagnosed with IBS around 2010/11 and have had diarrhea or constipation on and off. I never saw any visible blood in my stool. I didn't have any nausea or vomiting except for the day I went to the ER and was diagnosed. I think the only sign may have been fatigue, but nothing that alerted me.
.


Make no mistake, this cancer is a "silent killer". My PCP was not worried. All those tests that should have been a warning for colon/rectal cancer came back negative or normal. My only symptom was bleeding hemorrhoids. As my PCP put it, those bleeding hemorrhoids were my excuse for getting my baseline colonoscopy early in life. That referral saved my life. When my husband told our PCP a few weeks later, our PCP turned a few shades white.

Believe me I've been around here a few years now, when a young firefighter (35ish),who was a runner and a healthy eater (vegan) gets this disease, no one is off limit. The only people who might have a chance (note the word "might") are people who eat/are healthy eaters and not overweight. This did not help me as I loved my veggies and was NOT overweight than. I am 10+ pounds heavier today than when I was diagnosed (menopause is a bit***), butt still within a healthy range. That and my blood work were major reasons why my PCP was not worried about cancer.

It is a silent killer. I had no pain & felt healthy,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: 34 year old with recent diagnosis. So many questions

Postby ACPdiddy » Sun Jun 04, 2017 11:01 am

I don't have anything new to add, but just please, please get yourself to a major cancer center (or even two, e.g. visit Dana Farber and MGH in Boston). Different hospitals have different techniques they use, different doctors can be more or less aggressive in their treatment strategies. I'm not a doctor, but I've read a lot of peoples' colorectal cancer stories. Based on your description of your situation and the stories I've read, I'd guess that there's a very real chance of getting you to NED (no evidence of disease, or remission). But that's going to take some proactive work on your part.

Even if you don't get to NED, cancer is probably going to be much less horrible than you're imagining right now. Chemo side effects aren't pleasant, but for most people they're not that big a deal. You continue working, you continue with your hobbies (unless you were an ultramarathoner or something), it's still fun to hang out with friends.

So take a deep breath and think about what's good in your life. That's probably not going away anytime soon. Enjoy it. Take comfort in it. Then start making your plans for the big cancer center(s). If you like being in control, you might enjoy researching lung tumor ablation and surgery on the internet. Or FOLFIRINOX, an non-standard chemo regimen that can improve your chances of becoming eligible for tumor removal. And read about the great results some people get with immunotherapy in MSI-high colorectal cancer, and all of the new trials of different immunotherapies that are being developed for the majority of us who are MSS.

There are no guarantees in the world of cancer, but it's all likely to go much better than you're fearing. Still, it will probably go much more better if you get yourself to a major cancer center.


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