Newly diagnosed and scared stiff

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Newly diagnosed and scared stiff

Postby BeansMama » Thu Jun 23, 2016 6:39 pm

I am so sorry you are here, but glad you found the site. The people here are amazing and so supportive.

I echo what the previous poster said, definitely get tested for Lynch! The family history and your age at diagnosis are huge red flags. It is something you need to know.

What you are feeling is completely normal, especially right now while you are waiting for the full picture. Don't bottle it up, you need to have at least one person you can say anything and everything to. My husband was my rock those first few months while everything was getting sorted out, and he still is now.

We were age appropriately honest with the kids. I was pretty sick before we got the diagnosis so they knew something was wrong anyway. They have handled it pretty well, if anything it has made our family stronger. We fight this together, they give me the strength and purpose to keep going.

Don't worry about being brave. I always say one day at a time. Some days I do better than others. Most importantly it is ok to cry! It actually helps a lot to get it out.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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melmo
Posts: 1
Joined: Tue Jun 21, 2016 2:54 pm
Facebook Username: melsutton

Re: Newly diagnosed and scared stiff

Postby melmo » Fri Jun 24, 2016 11:42 am

Sending love. I don't have answers, but I do know that this community cares for its members well. You are not alone!
Mel, 34
DX: Serrated Polyposis Syndrome 12/2015
Colonoscopies: 12/2015 (22 polyps), 6/2016 (14 polyps, granular mucosa of cecum)
mom to 3 kids (7, 6, & 4)

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: Newly diagnosed and scared stiff

Postby AngelaN » Sat Jun 25, 2016 8:55 am

I think others have said it but please make sure you do this first.
NO SURGERY UNTIL YOU SEE AN ONCOLOGIST.
Surgeons want to cut. Oncolgists want to save your life. You need a CT and staging PRIOR TO SURGERY. Surgery may be the WRONG option depending on your stage.
PLEASE promise us...oncologist FIRST.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

rp1954
Posts: 1526
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly diagnosed and scared stiff

Postby rp1954 » Sat Jun 25, 2016 1:29 pm

Angela's comment deals with staging unknowns before surgery and metastatic disease risks. There are several professional tensions between surgeons and oncologists about initial colon cancer treatment. We favor the surgeons even with some met load, but with more advanced chemistry in place.

The way we dealt with metastatic disease risk was to do several things, like much of the Life Extension presurgical cancer protocols including things like cimetidine, heavy vitamin D3 and other nonstandard chemistry. And it worked much better than "standard" presurgical preparation (very little chemistry there) could have, because there had been a lot of metastatic disease.

One problem implied here may be one of medical marketing control - like saving the CT for just before surgery, cutting out your opportunity for multiple outside opinions, and other providers. However, too much negative medical information, too soon might cancel an otherwise successful surgery, at least if sufficient advanced (nonstandard) nutrition and chemistry were in place. The primary reason we escaped this latter cancellation situation, was because of an impending obstruction.

The "extra" blood tests that overpriced, cattle class medicine won't run upfront at diagnosis, ones that repeatedly cause grief years later, include LDH, CA19-9, ESR, hsCRP, quantitative D-dimer, and 25-hydroxy vitamin D3. AFP, CA-125 and others have been helpful for some here. All these tests are commonly available labs.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

Natural Woman
Posts: 2
Joined: Sat Jun 25, 2016 12:41 pm
Facebook Username: CYNTHIA SHORT

Re: Newly diagnosed and scared stiff

Postby Natural Woman » Sat Jun 25, 2016 3:46 pm

I'm so very sorry you have to go through this. I just went through it myself, my surgery was March 9, 2016 - my 59th birthday.
The only people who will truly understand your fear, panic, anxiety, etc. are people who have already been through it. 3 1/2 months later and I am still experiencing all those terrible emotions, even though I know I was extremely lucky. I had no surgery complications, they were able to re-sect and did the surgery laparoscopically. I physically healed so rapidly it amazed my doctors, and the best news was all margins were clear and all 28 lymph nodes were clear, stage 2A, so no chemo.
Still, I struggle. My sleep is horrible and I have times of blind panic. Those that have been here before me say it's still early days and each new day and each test milestone you pass the bad feelings will get less and less. I'm counting on that and relying on prayer, exercise, and clean eating to get me through.
My prayers are with you at this frightening time. Feel free to pm me whenever you need to.

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horizon
Posts: 1539
Joined: Tue Apr 12, 2011 10:10 pm

Re: Newly diagnosed and scared stiff

Postby horizon » Sun Jun 26, 2016 2:26 pm

juliej wrote:As others have said, please make sure you go to a board-certified colorectal surgeon, preferably at a major cancer center. And make sure to get a CT scan to see if there is spread to other organs. Also, since you have a family history of colon cancer, make sure you are tested for Lynch syndrome, a genetic condition that is passed from generation to generation.

I know how you feel. I was gutted by the news. Thoughts like “What do I want for lunch today?” were quickly replaced with “How did I not realize I was so sick? I’m too young for this! What stage is it? How long do I have? How do I tell my family?"

The next few weeks will become an exhausting series of medical appointments and waiting for test results. There will be lots of paperwork, appointments, and test results to keep track of. If at all possible, have another person, a close friend or family member, accompany you to your appointments. Sometimes it's easy to shut down while the doctor is talking and miss important information. That's when the extra person comes in handy. They can write notes or just remind you of what the doctor said afterwards.

I also recommend using a notebook or a 3-ring binder to keep track of all your medical information. Get colored tab dividers for the notebook and make several sections: Schedules (dates of appointments you have had, when the next ones are due, etc. ), Test Results (CT, PET, pathology, etc.), Medications (drug names, dosage, schedule, etc.), Medical History (handy when you're filling out forms that ask for that info). Being organized gives you a sense of control and helps you feel more prepared for doctor's appointments.

Remember that the common factor in all of this is you. It’s your health. It’s your life. You've just been told what no one ever wants to hear. Give yourself a few weeks to process everything. Cry, vent, scream, let it all out. It's unfair. It sucks. There were days at the beginning when I didn't even want to get out of bed. But then I got in battle mode and fought the cancer with everything I had.

I know you don't want to be here, but you have found a great source of support and information in this forum. Talk to us when you get sad or upset or have questions or need advice. We're here for you!

Hugs to you!
Julie


Julie saved me a bunch of typing!

The part you're at is the worst. You have to deal with shock, all this new info, and worst of all you have to WAIT while things get underway. You'll get a lot of support here.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Lee
Posts: 6051
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newly diagnosed and scared stiff

Postby Lee » Sun Jun 26, 2016 2:50 pm

motherducky wrote: I talked to a person today from Cancer treatment centers of America. She was very helpful but now I'm worried about the surgery Monday. She seemed to think that I don't have the full picture yet as there are some tests that my doctor has not done.


I agree with this statement. You need a CAT scan & CEA blood test now, not after your surgery. Please as AngelaN stated, see an Onc now.

I was diagnosed over 12 yrs ago, Can't remember who I saw first, Onc or surgeon, BUTT I did see BOTH within a few days following my diagnoses. Because I had rectal cancer, also saw radiologist BEFORE I started any treatment. Due to all the testings I had done, we knew I was a stage III going into this. There was a plan of action that all Dr were on board with. It is VERY important to get a clinical stage as it can have an effect on your next course of action.

Cancer Treatment Centers of America is a major cancer treatment center. They deal with this every day. I would be going there if I were you. You will be in the best of care with them

All the best,

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!

Nik Colon

Re: Newly diagnosed and scared stiff

Postby Nik Colon » Mon Jun 27, 2016 11:37 pm

AngelaN wrote:I think others have said it but please make sure you do this first.
NO SURGERY UNTIL YOU SEE AN ONCOLOGIST.
Surgeons want to cut. Oncolgists want to save your life. You need a CT and staging PRIOR TO SURGERY. Surgery may be the WRONG option depending on your stage.
PLEASE promise us...oncologist FIRST.

My surgeon was the one who first seen me and ordered all the tests. It wasn't til after the tests I seen my onc (whom I didn't like). Yes, I did do chemo first, my surgeon was great and didn't just want to get to surgery right away. So, I guess it depends on who you see. I thank my surgeon.
Also, I had a CT and PET before any treatment.

testing765
Posts: 314
Joined: Tue Aug 19, 2014 9:41 am

Re: Newly diagnosed and scared stiff

Postby testing765 » Tue Jun 28, 2016 8:47 pm

my thoughts and prayers are with you. i know how stressful this time can be, im some ways, it is the hardest part. if you cant talk with family or friends about all of this, you may want to see a therapist and/or join a support group. and feel free to vent your anger, fear and frustration on this board. it can help.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

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Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: Newly diagnosed and scared stiff

Postby Marylandmaniac » Thu Jun 30, 2016 8:51 pm

Motherducky I am in the same boat as you. Went in Wednesday for a colonoscopy because I thought I had two internal hemorrhoids which was causing bleeding and also my dad died of esophageal cancer 2 years ago and my GI was concerned. I seriously thought it would be just a routine screening and a banding. Woke up and got the shock of my life. There is a 7cm mass in my rectal area. Dr is a good one and says he is sure it is cancer but sent the biopsies off to confirm. In the meantime I got bloodwork today and will get a CT scan with contrast next Friday. I hate waiting but he wanted me to wait 10 days to heal. I am assuming once results are back then I will be referred to surgeon and oncologist but I am still not sure. I may call next week just to find out the plan. Seems many people on here comment they saw someone within a few days.
I am trying to figure out how to deal with the fears I have. I now notice people in their 70's or 80's and I am envious of them. I want to live to see my kids graduate and have kids of their own (I am 46 and 2 kids (15 and 17). I lost my mom at age 52 to lung cancer and dad at age 65. They both smoked and ate terribly and didn't exercise much. I have done the opposite. Never smoked, don't really drink, eat healthy 80% of the time and work out every day. How did this happen to me?? I am trying to stay strong in front of my kids and husband. I hardly slept last night. How do I deal with this for the next 2 weeks....the not knowing. And of course I go back and forth to hoping it is minor to feeling like what if it is really bad?? I read statistics and get depressed. And this is only day 2.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

DarknessEmbraced
Posts: 3466
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newly diagnosed and scared stiff

Postby DarknessEmbraced » Fri Jul 01, 2016 9:46 am

Marylandmaniac,


I'm sorry for what you're dealing with now. It is so very hard to wait for biopsy results!*hugs* I would stay away from reading statistics since many are outdated and everyone is different. Unfortunately you won't know more until the biopsy results are back.*hugs* I find it helps to vent about your fears on here and to have someone in your daily life to support you. *hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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