Son is ill and I am scared

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

Son is ill and I am scared

Postby TXLiz » Mon Jan 22, 2018 9:27 pm

I am getting ready for a new scan, but right now I am so low cancer is my last worry.

Our 20 year old son is experiencing severe, and I mean severe, constipation, along with testicle pain, urinary frequency and nighttime urination, a swollen red throat with a small lump on the front of his neck, an eye disease his optho is battling with 2 different drops...so odd, all these unrelated symptoms.

He’s having a colonoscopy next week, because even though my genetic counselor said I was negative for Lynch, my tumor had all the markings of Lynch and tests for genetics aren’t ever perfect. She recommended colonoscopy for all our kids definitely by 25. Ex-lax doesn’t even make him go, it just hurts his stomach and rectum. Linzess makes him have diarrhea, so at least he’s not getting impacted.

We saw a rheumatologist today on advice of the optho, and he did loads of blood work since my son’s ANA was weakly elevated. He has other symptoms of inflammation and I guess we will know in a few weeks if that’s a factor.
It seems as if his body is attacking itself.

How do you deal with such uncertainty knowing your cancer could come back and your loved one may be ill and you won’t be able to care for them? I don’t know if I will have a cancer reoccurrence, but it weighs heavily.

And his constipation? The worst. He just cannot go. Even mag citrate takes a day to make him have a hard bowel movement. He has to strain terribly, and he seems to have lost the urge to move his bowels at all.

I am a mess. Thanks for letting me vent.
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

JustJen
Posts: 7
Joined: Mon Jan 22, 2018 2:24 am
Facebook Username: JenWEsq

Re: Son is ill and I am scared

Postby JustJen » Mon Jan 22, 2018 10:27 pm

I’m so sorry. Watching our children suffer is heartbreaking. Remember, you did not create your genes. Our genetic makeup is out of our control. And while I need to heed my own advice here, worrying about what may happen tomorrow robs us of our lives today (says the women who is obsessing over tests that won’t happen for weeks and a diagnosis that is only possible).

Regarding constipation, I have found the best solution for me is fleets enemas. It is literally the only thing that gets my bowels moving. I pray your son finds some relief soon and his colonscopy is clean.

Jen
Married 18 years
Mother to 2 boys
Awaiting diagnostic colonoscopy
Family Hx of digestive diseases. Mother died at 63 of cancer of unknown origin
No genetic testing performed

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Son is ill and I am scared

Postby WriterGirl1969 » Mon Jan 22, 2018 11:10 pm

So sorry that you are going through all of this. My son is still young, but I know I would be much more worried if he were having health issues than I ever could be over my own. That's just the mom in us, isn't it? My prayers and hugs go out to you and him. Hopefully they will be able to find out what is causing all of those strange symptoms, and they can treat it and get him on the road to recovery.

Hugs and prayers from me,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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

Re: Son is ill and I am scared

Postby TXLiz » Mon Jan 22, 2018 11:48 pm

Thank you Tracy. I feel selfish complaining here among those fighting for their lives, losing loved ones, and our own dear members departing, but it’s so scary. I know this sounds awful but I’d rather have health issues and deal with them than watch my 20 year old really struggle, and having the specter of (perhaps) my medical issues whisper that I may not be around at some point to help him.

He’s autistic also, and I do so much for him. He has a very hard time communicating and understanding large amounts of information. He looks “normal” and I don’t think the docs like it when I speak for him when I know he’s struggling to find words or recall details, even though we always put his diagnosis on his paperwork.
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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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Son is ill and I am scared

Postby susie0915 » Tue Jan 23, 2018 9:19 am

So sorry you are having to go through this. I hope they can find what is going on with your son. I know I still worry about all three of my children's health and they are 32,30,27. Two of them are married. It's just the mom is us and we always want to make things better for them. Please keep us updated on how he is doing.
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

SweetC80
Posts: 103
Joined: Fri Sep 01, 2017 1:28 pm

Re: Son is ill and I am scared

Postby SweetC80 » Tue Jan 23, 2018 9:36 am

I'm sorry you are going through this. It's hard enough when it's yourself but to see your child suffer is awful, so never feel bad about talking about it. I haven't been around long but I know the members of this community are an amazing support system.

I am glad he is getting a colonoscopy. I am already getting them since my mother's diagnosis and her father died of colon cancer. It is great to advocate and be proactive about you and your families health. I see you mention ANA, eye problems and lump in his neck. Is he suffering from autoimmune diseases? I have Graves and thyroid eye disease (mild) and know ANA is elevated when one of my autoimmune diseases is active. Maybe some of the stomach pain and constipation could also be the result of ulcerative colitis or diverticulitis. I know when my mother was first diagnosed with rectal cancer they also told her she had ulcerative colitis. She already knew she had RA and autoimmune disease runs in our family. Obviously I'm not a doctor and have no idea what could be going on, but trying to give thoughts other than cancer as to what might be going on.

I hope your son is ok and they can find an answer to his problems and it is not cancer related. So many good thoughts and prayers to you both. Please keep us posted.
My Mom
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum & Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met & 7mm Lung Nodule CEA 197
9/17 FOLFIRI CEA 160
10/17 Confirmed KRAS Pos CEA 210
11/17 Met growths Liver 10cm & Lung 8mm CEA 425
12/17 FOLFOX again Met growths Liver 13cm & Lung 1cm CEA 405
12/17 Xifaxan due to Hepatic Encephalopathy
12/17 New 2cm liver Met
1/18 CEA 992
2/8/18 Passed Peacefully

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

Re: Son is ill and I am scared

Postby TXLiz » Wed Jan 24, 2018 1:14 pm

Thank you for chiming in guys, it means a lot.

We are going to get lots of bloodwork today. Only the Lord above knows what it may show.

Prayers and good thoughts to all of us here. The saying “your health is your wealth” sure it true.

Medical problems stink. Give me money, relationship, whatever problems over health problems.
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: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Son is ill and I am scared

Postby Lee » Wed Jan 24, 2018 2:19 pm

I hope they find the underlining problem, butt mostly I hope it's nothing serious, easily treatable.

As parents, we want to protect our kids and not have them suffer. I'm so sorry he has so much going on at once.

He will be in my thoughts and prayers.

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 - 10 years and counting!

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: Son is ill and I am scared

Postby Hey Daddy » Wed Jan 24, 2018 10:09 pm

TXLiz, I am very sorry about your son's problems. I know what it is like to watch your son struggle with health issues and feel helpless to fix it. I cannot imagine, however, having to deal with this on top of the ordeal that your own issues have put you through. You will both be in my prayers. My understanding is that autism is often accompanied by significant digestive problems and that some studies even suggest that chronic digestive issues can trigger and/or exacerbate the autism itself. My hope would be that something as simple as a dietary solution might be found that would give your son digestive relief and, in doing so, have the added benefit of lessening the severity of his autism symptoms. At any rate, I hope he gets relief soon and that it has nothing to do with cancer.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17

Hey Daddy
Posts: 37
Joined: Wed Nov 30, 2016 8:42 am

Re: Son is ill and I am scared

Postby Hey Daddy » Tue Feb 06, 2018 9:58 pm

TXLiz, Don't mean to pry but wondering how your son's colonoscopy went.
DS dx CC Stage IIB (T4N0M0) 3Aug16, 21 yr old
poorly differentiated, lymphovascular and perineural invasion
CEA 29
Colon resection 4Aug16
CEA 2.5
Genetics testing negative
6 mo FOLFOX Sep16 - Mar17
CT Scan Mar17 clear
Colonoscopy Apr17 clear
CEA 1.8
NED
Emergency appendectomy Jun17
Adhesion surgery to clear small bowel obstruction Dec 17


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