Is this really happening?

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Is this really happening?

Postby ALW » Tue Aug 11, 2015 9:14 am

Last edited by ALW on Fri Sep 18, 2015 8:58 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

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Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Is this really happening?

Postby weisssoccermom » Tue Aug 11, 2015 9:42 am

First of all WELCOME to our forum. Here you will find a wealth of information AND a great group of people who will be here for you, day or night.....whatever you need. We may not always have the answers but we will try to find information and resources for you if we don't know.

As to starting treatment, take a deep breath, try to calm down because you are in for the long haul. Next, I would suggest you get a three ring binder, complete with dividers (the kind like we all got before school started in the fall). You'll be getting lots of different test results and it is really a good idea to have a place where you can put the actual test results in...rather than just trying to remember what the doctor said. For example, the blood tests that you mentioned are generally the following:
CBC - complete blood count (will tell you things about your blood...white blood count, red blood count, hemoglobin, etc.)
CHEM or METABOLIC PANEL - (same thing....will give info about your liver, kidney function, sodium levels, etc.)
CEA - cancer marker (be aware...about half the patients have tumors that don't express the protein so it doesn't necessarily mean much)

In addition, you will likely get an endorectal ultrasound that will help stage you. Rectal cancer is generally CLINICALLY staged prior to treatment as most stages (except generally stage I) undergo neoadjuvant (presurgery) chemoradiation to shrink the tumor and to 'sterilize' the nodal field surrounding the rectum. If you didn't do the pretreatment staging, you honestly wouldn't have any idea what the stage was. Don't be surprised if all of these tests AND the appointments with the radiation oncologist (the one who will be in charge of the chemoradiation if you need it....different from a radiologist) takes a few weeks or more. There are tests to be done, results to be interpreted, planning for the radiation, etc. Take all of this ONE STEP AT A TIME and don't start stressing about the 'big picture'. Oftentimes it seems as though rectal cancer treatment is at a snail's pace....and honestly, it is. However, you don't want to rush into surgery if your case warrants pretreatment.

As far as being alone, I have no idea if the military would consider sending you to California so that you could be near family. Is that something you can request?? I might suggest once you find out exactly where you will be sent, reach out to members on this forum. We are literally EVERYWHERE and who knows....there likely is someone in Hawaii that you can turn to for advice, help and support.

You won't yet be able to PM anyone but I hope you will continue to post and become a part of our 'club'. It certainly isn't one anyone wants to join but we are really glad you are here. Take are NOT alone and like us before you, you can do what lies ahead of you. WELCOME again.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Re: Is this really happening?

Postby sadysue » Tue Aug 11, 2015 10:59 am sorry that you have to be here but you are in a good place to get support and useful information. I think the best thing for your right now is to go with the flow as best you can and accept help that is offered to you. Some people have a rough time dealing with cancer and for others, it's is not so difficult. You own your cancer and we all have different reactions to it and it's treatment. Drop in as often as you need to as there are many here who have gone through similar to what you are going through now. I had stage 3 rectal cancer and I will be 4 years cancer-free on August 18. I think right now you are going through one of the hardest stages - the initial shock of learning you have cancer and not knowing what's in store for you in upcoming weeks and months. Once you have a solid plan, it becomes a little easier. You know exactly what you are dealing with and you have a goal set in place. Good luck.
Mary Ann
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012

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Re: Is this really happening?

Postby canadiandaughter » Tue Aug 11, 2015 11:10 am

I can't really help you with your diagnosis but I wanted to welcome you here and send you a hug for support. I remember a year ago when my dad was diagnosed it felt like we were in a dream until we had a plan and knew where we were going. As already mentioned, things will be better once you have a plan. This board is an awesome place to come just for emotional support so I am so glad that you have found it. I pray for you that you are able to go for treatments where your family is. Take care of yourself!! xxxx
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

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Re: Is this really happening?

Postby Crystald » Tue Aug 11, 2015 11:34 am


Breathe. There are a lot of great folks here who will answer your questions and provide tons of valuable advice. Sorry you are here in this group, but Welcome!

I want to thank you and your husband for your service! I would suggest you contact your ombudsman (but you probably already know this) and advise them of the situation, they can help you out.

Sending you hugs, strength and prayer.
Age 58
DX Jul 2014 Stage IVb CRC metastatic, unknown primary, CEA 1826
Inoperable, Chemo for life
MSI: not tested
29 Jul 14 Port
30 Jul - 19 Jan 2015 Folfox (12 cycles) CEA 164.5
9 Feb 15 - 20 May Flofiri failed (6 cycles) CEA 417.0
17 Jul 15 - Initiated Vectibix CEA 555.5
17 Jul 2015 - 14 Jan 2016 Vectibix
8 Feb 2016 - 11 Apr 2016 Xeloda
26 Apr 2016 Hospice

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Joined: Tue Aug 19, 2014 9:41 am

Re: Is this really happening?

Postby testing765 » Tue Aug 11, 2015 1:19 pm

Hello AngiLouWho. I am sorry you are going through this. I have not been in the military, so I am not familiar with its procedures. But if you have Tricare, which is the military's form of health insurance, you may want to see if they have a provider list in the area where your family is located in California. I had colon, not rectal, cancer but i think you would need a board certified (ideally) colorectal surgeon, an oncologist, and a radiation oncologist.

If you were required to be treated in Hawaii, could a family member from California come out to help you in Hawaii if necessary?

Just try and take things one day at a time.
male-age 44 at diagnosis
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
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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Re: Is this really happening?

Postby Brandiherbert » Tue Aug 11, 2015 1:37 pm

Hi Angi,
I can relate to your feeling of is this really happening. I am also 41 years old and was diagnosed mid June with Stage IV B colon cancer. Mine began with feeling run down and rectal bleeding in February 2015. I went to see an internal medicine doctor in February and was told I was depressed, which I told the doctor I was NOT depressed. Went to a gastro doctor in June, he ordered a colonoscopy and found I had a 5cm tumor which was found to be adenocarcinoma.

Then began MANY other tests. They had originally planned on doing surgery to remove the tumor, but CT/PET scans showed nodules in both my lungs and liver as well, which by biopsy were confirmed to be the same type of cancer, so surgery is no longer an option at this point. I am right now having my second chemo treatment, Folfox with Avastin.

I feel for you as I know how devastating it is that in one day your life can change so drastically. I do not know if the military has any type of family medical leave or not, but would be worth checking into. If not, as another reader suggested, you may want to go to where you have family or friends to help you through this time. I am a single mom and have a 13 year old son, but I do have family and friends that have been very supportive. I am new to this forum as well.

Dx 6/18/2015
Stage IVB sigmoid colon w/met both lungs and liver
7/2015 Folfox w/ avastin

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Joined: Thu Jul 31, 2014 3:36 pm

Re: Is this really happening?

Postby jillbugs4110 » Tue Aug 11, 2015 1:55 pm


Yes your life changed in a day mine to. My vote is to go home to cali you need support unless you have strong friend in HI to assist you. If you néed someone to talk to lmk pm me your number I like online but sometimes you need a real voice who you can talk with. Good luck this site is amazing lots of love in support.

Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

Posts: 3584
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Is this really happening?

Postby DarknessEmbraced » Tue Aug 11, 2015 3:11 pm

Welcome to the board Angi, sorry for the reason you're here. I remember how overwhelming it was when I was diagnosed with colon cancer on October 28th, 2014. It felt like it couldn't be happening to me. It took a while for the feeling to go away. Just try to take everything one step at a time. You have received some wonderful advice and you will receive a lot of support here. I can't be much help in discussing treatment since I was diagnosed with colon cancer but I am here to support you.*hugs* I had my colon resection surgery November 20th, 2014. I was diagnosed as stage 2a with lymph vascular invasion undetermined. I had no chemo. My post surgery colonoscopy this year was clear. I have my yearly ct scans October 5th. I have my CEA and CA 125(tumor markers) checked every 3 months.
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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Re: Is this really happening?

Postby rp1954 » Tue Aug 11, 2015 3:23 pm

I would go see the Japanese doctors (surgeons, oncologist) again and see what they offer. It could be a very valuable experience, even just once. They have inexpensive blood tests, CA19-9 and CSLEX1, that can be extremely useful to your success that aren't available to US patients. Be sure and get them in Japan, you won't have the chance in the US and done now, it could make a BIG difference. You might prefer some local care in Japan to Tricare alone in HI. Also their basic chemo pill, tegafur-uracil aka UFT, is a lot nicer, and can be used to advantage over US options.
Last edited by rp1954 on Tue Aug 11, 2015 3:34 pm, edited 1 time in total.
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

Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Is this really happening?

Postby cathy123 » Tue Aug 11, 2015 3:33 pm

So sorry. I am also too young (so I thought) for this disease and remember the shock when I was diagnosed last fall. Things get easier to handle once you start treatment. It is a long process though - unless you are stage 1 you will likely have 6 weeks of radiation, then a break for 6-8 weeks, then surgery (with a possible colostomy bag), then a month off, then 4 months if chemo, then a month or so before your reversal if you have a temporary colostomy. I am telling you this because unless you have support in Hawaii I would definitely try to find my way back to California so you have people to help you through this. Plus I am guessing there may be more/better treatment options in California. You want a good colorectal surgeon.

Hang in there. Please use this board for any support, questions, or just to vent. It has been so helpful for me.

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

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Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Tue Aug 11, 2015 7:51 pm

Last edited by ALW on Fri Sep 18, 2015 8:58 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

Nik Colon

Re: Is this really happening?

Postby Nik Colon » Wed Aug 12, 2015 5:17 am

Welcome but sorry you have to be here. If they have to send you to HI, is there a way you can get a flight to CA? I hope you can as I know it would help having family there to help you through this time. Best wishes

Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Is this really happening?

Postby PainInTheAss » Wed Aug 12, 2015 5:40 am

I'm so sorry you are going through this.

I went through treatment without any family in Arizona other than my nearly useless kids. I really only needed help with rides on the tail end of radiation, to and from surgery, the first few weeks after surgery and my chemo appointments. But guess what, you can take a cab for any and all of those. It was tough getting out of bed to make food after surgery, but I did it. You really don't NEED family or really anyone. You are stronger than you know. You find a way to do what you have to do. There are many single patients who have gone through treatment without a caregiver or family to help.

That being said, I'm sure they will allow you to get treatment near your family. It's a long process. This is just the start and you will never be the same person you were. It's very difficult to explain how this changes you, but it does. You have joined a club even before you joined this forum. We all get what you're feeling and going through and that's something even your family or husband will never fully understand.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Posts: 51
Joined: Tue Aug 11, 2015 9:07 am

Re: Is this really happening?

Postby ALW » Wed Aug 12, 2015 7:15 am

Last edited by ALW on Fri Sep 18, 2015 8:59 am, edited 1 time in total.
Aug '15 Dx rectal cancer stage 2a @ 41 years old
Sept '15 Radiation & Xeloda
12/3/15 LAR with temp ileo - 0/20 nodes
1/5/16 reversal done early due to complications
2/16 Started 5 rounds Xeloda

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