Newly Diagnosed from overseas. Moving back to the US

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CatherineG inAF
Posts: 34
Joined: Tue May 10, 2016 7:39 am

Newly Diagnosed from overseas. Moving back to the US

Postby CatherineG inAF » Tue May 10, 2016 3:41 pm

I had what I thought was going to be a routine colonoscopy. We know what happened next. Malignant tumor in the rectum.

They cut It off but the margins weren't clear and now I will be moving back to the States.

I have some basic questions. I have no caregivers in the area that I will work in the States. I am by myself. If I went to where family is, I have no work there.
I do have sick leave.

If I am looking for a colon rectal oncologist/surgeon- do I look for one where I will work or one where family is located?
53 & Female
Diagnosed in Thailand
DX: Rectal Cancer (RC)
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016. SCCA did a good job managing the pain. Waiting lab resulsts

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Newly Diagnosed from overseas. Moving back to the US

Postby Cowgirl918 » Tue May 10, 2016 10:59 pm

It would be my priority to find the best CRS (colo-rectal surgeon) and oncology program for your care.You will need a support system but it is safe to say that this will be a process rather than a one stop procedure. Think about what you can realistically maintain over a period of time. Even with cure there will be follow up etc. Sorry that you had the need to join our group but you will find support here. Good luck with all of the changes you are facing.
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

Nik Colon

Re: Newly Diagnosed from overseas. Moving back to the US

Postby Nik Colon » Wed May 11, 2016 12:34 am

That's a tough question. I don't work and can't imagine being on my own, so for me it would be an easy decision, but everyone is different. Also, it would depend on your diagnosis and what needs to be done like chemo or surgery, etc, as these may/will affect work.

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

Re: Newly Diagnosed from overseas. Moving back to the US

Postby ALW » Wed May 11, 2016 12:51 am

I was living in Japan when diagnosed and returned to the states within a week or so of my diagnosis. I know the stress associated with dealing with a diagnosis and uprooting your entire household. I'm sorry you have to deal with all of that. I don't know your exact situation but for me, I don't know what would have happened if I didn't have family to come back to. When I first got back to the states I had no car, no place to live, my furniture was on a slow boat that took a couple of months. It was a mess.

I wish you the best of luck whatever you decide. If you are on your own and living overseas then I am willing to bet that you are one tough cookie. You'll get through this.
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

CatherineG inAF
Posts: 34
Joined: Tue May 10, 2016 7:39 am

Re: Newly Diagnosed from overseas. Moving back to the US

Postby CatherineG inAF » Wed May 11, 2016 2:06 am

Should I be thinking about short term disablilty? Long term disabilty?

Should I consider having surgery near family, but when I'm able to move back to DC for work? I am assuming chemo/radiation based on what I'm reading.
Do people have chemo/radiation far from their initial surgeons. I've never had to be concerned about this and now I feel like I am entering the twilight zone.

I'm thinking of going to the Mayo clinic is Arizona. I have family very near the clinic. But I've read about John Hopkins as well in Maryland. I don't know how or what to think right now.

Everything is a blur right now and I'm scared for me and my daughter.
53 & Female
Diagnosed in Thailand
DX: Rectal Cancer (RC)
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016. SCCA did a good job managing the pain. Waiting lab resulsts

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Newly Diagnosed from overseas. Moving back to the US

Postby ktwmn » Wed May 11, 2016 6:07 am

I live alone, family of origin is far away. I work full time, go to the gym 4 x a week, get the yard work done, have chemo every 2 weeks. In other words it is doable even at stage 4.
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Newly Diagnosed from overseas. Moving back to the US

Postby Sams wife » Fri May 13, 2016 12:23 am

I don't know anything about the disability questions.
After surgery, my husband saw his surgeon maybe twice. It was a checkup a few weeks later, then another one after 2 months maybe? Anything could happen with surgery. You may be in the hospital for 4 days or a month. It just depends on what happens. My husband ended up with an infection after a month but the oncologist took care of it. We were watching out for it so I guess it didn't get to bad as it could have. I would have rather been around family but we just weren't.

Is John Hopkins in Baltimore ? If there are better surgeons there, I may pick them. You definitely want a good one. You would probably need to check on the disability either way, wouldn't you? Rectal surgery can be pretty invasive. Maybe you need to stop in Maryland for a 2nd opinion, then get one in AZ. The may have different recommendations for surgery. Good luck.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Ragman
Posts: 22
Joined: Mon Mar 21, 2016 9:01 am
Location: Baltimore, USA

Re: Newly Diagnosed from overseas. Moving back to the US

Postby Ragman » Fri May 13, 2016 8:18 am

Hello Catherine G,

I am so sorry to hear of your diagnosis. I second the advice of Cowgirl1918 and Sams Wife. Since you have already had surgery, it is not clear to me from your message whether you will need surgery again or not. But if you do need surgery, finding a top-notch surgeon is in my view really, really important. Because if the surgery is messed up, then your future life and treatment can be messed up as well, regardless of how well your prognosis looks. Ideally (again, my view) you would want the surgeon and oncologist to work together, preferably at the same institution. If that is not possible, then you have some choices to make. IF your diagnosis is cut and dry then sometimes you just need a competent colorectal oncologist, who are often just implementing and following established treatment protocols anyways. But if your situation is complicated, then having a top-notch oncologist who is on top of the latest treatments and perhaps clinical trials would be crucial.

If you do live/work in the DC/Baltimore area, then I would urge you to explore the following surgeon and oncologist at Johns Hopkins Hospital in Baltimore:

1. Jonathan Efron -- who is literally one of the best colorectal surgeons in the nation. I have had five major abdominal surgeries in my life and the latest one with Dr. Efron was by far the best experience. The guy is skilled, seasoned, and talented. Moreover, he saved me from having to have a colostomy bag. http://www.hopkinsmedicine.org/profiles/results/directory/profile/0024566/jonathan-efron

2. Ross Donehower - oncologist. Excellent and extremely knowledgeable and compassionate. http://www.hopkinsmedicine.org/profiles/results/directory/profile/0002087/ross-donehower

There are also plenty of other experienced and respected surgeons and oncologists in the DC/Baltimore area -- so, for what it's worth, this is a good area to be in if you have cancer. :( :?

As Cowgirl1918 said, you are probably in it for the long haul, so if I were you I would have my surgery (if needed) and treatment close to where you plan on living in the long-term. On the other hand, you will need some assistance especially after surgery and perhaps with the chemotherapy as well. Like, ktwmn, I worked full-time throughout my chemotherapy, but my workplace was super-supportive and I have a wife and her family nearby for support.

In terms of long-term/short-term disability that is often something I think you would apply for through work, so you should check out their policies. I am not very knowledgeable about these benefits on a Federal or Social Security level, however.

Perhaps in an ideal world, if you had enough finances/support to simply not work for a year so that you could concentrate on your fight and getting healthy I would go for that. But I realize that is rarely the case, and many cancer patients prefer to work through treatment anyways, as part of the healing process.

In any event, I really hope you find a path that brings health and happiness to you.

Ragman
44 yr. old male w/family to live for
Rhabdomyosarcoma - Stage III -- dx 21yrs old -- 1991 & 1992 (surgeries, chemo, & rad)
Colon Cancer - Stage IIC -- 2014
Small bowel and Transverse colon resection -- 2014 (w/adjuvant chemo in 2015)
2nd primary discovered in colon - 2015
Total colectomy w/ileorectal anastomosis - February 2016
*More cumulative exposure to radiation in my life than a resident of Nagasaki in 1945*
"You are only as healthy as you feel" - Travis Bickle from Taxi Driver

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Jacques
Posts: 581
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly Diagnosed from overseas. Moving back to the US

Postby Jacques » Mon May 16, 2016 1:45 pm

CatherineG inAF wrote:.. Malignant tumor in the rectum...They cut It off but the margins weren't clear ...
If I am looking for a colon rectal oncologist/surgeon- do I look for one where I will work or one where family is located?

Would you be able to clarify what has been done so far? When you say "They cut it off" are you talking about cutting off a malignant polyp (.e, a polypectomy) or are you talking about the removal of a large tumor by surgical resection (e.g., Low Anterior Resection)? It's not clear to me what you have had done so far, and what is still left to do.

Are you now at the stage of selecting and starting a chemotherapy regimen? Or are you at the stage of having a surgery to remove what was not removed in the first intervention?

Thanks for clarification.

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Newly Diagnosed from overseas. Moving back to the US

Postby jhocno197 » Tue May 17, 2016 7:14 am

Some people can get through treatments without help; some cannot. You unfortunately won't know that until you start.

If your daughter is young, I would definitely go to where you have family.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

CatherineG inAF
Posts: 34
Joined: Tue May 10, 2016 7:39 am

Re: Newly Diagnosed from overseas. Moving back to the US

Postby CatherineG inAF » Wed May 18, 2016 11:51 am

Sorry, I typed something and confused everyone. I have not had any surgery yet. They cut off the polyp is all. They did not get clear margins.
53 & Female
Diagnosed in Thailand
DX: Rectal Cancer (RC)
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016. SCCA did a good job managing the pain. Waiting lab resulsts

beck1965
Posts: 25
Joined: Mon May 16, 2016 2:37 pm

Re: Newly Diagnosed from overseas. Moving back to the US

Postby beck1965 » Wed May 18, 2016 2:05 pm

I'd want to be where I have family/friends to help me through and offer that moral support.
*50 y/o Female
*Sigmoid Mass found on routine colonoscopy/Feb 2016
*4cm villious lesion found at the rectosigmoid
*Surgery three weeks later to remove 13" of Sigmoid/resection
*Used DaVinci Robotic surgery
*Stage 1 rectosigmoid cancer/T1/N0/M0 = 18 negative nodes
*Acute renal failure during recovery, unknown reason[/b]
*Clear colonoscopy one year post resection!!
*Normal CEA's since surgery
*NED two years out.

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Jacques
Posts: 581
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newly Diagnosed from overseas. Moving back to the US

Postby Jacques » Thu May 19, 2016 2:54 am

CatherineG inAF wrote:...If I am looking for a colon rectal oncologist/surgeon- do I look for one where I will work or one where family is located?

Wherever you decide to look, you should definitely look for a Board Certified Colorectal Surgeon. This is especially important when the tumor is in the rectal area.

Here is a link to instructions for finding Board Certified physicians. You can follow the instructions indicated, but use your own location (e.g.,Arizona or whatever you choose)

How to find a board-certified colorectal surgeon in your area:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

You can also use the same template for searching for Board Certified Medical Oncologists and Board Certified Radiation Oncologists. Since you have a rectal tumor, you may have a need for all three kinds of doctors: a Radiation Oncologist (for neo-adjuvant or adjuvant chemo/radiation), a Colorectal surgeon for performing the rectal surgery, and a Medical Oncologist (for adjuvant chemotherapy after the surgery). The keywords for these three specialty areas are: "Radiation Oncology", "Rectal and Colon Surgery", and "Medical Oncology"

Typically, for rectal cancer cases they often (but not always) want to do the chemo/radiation intervention before they do the surgery. In this case, the specialist you would be dealing with first would be the Radiation Oncologist.

Whatever you decide to do, you should go to your next appointments with the knowledge that there are three different types of intervention that will probably be considered in your case, but the timing and sequencing of the three may be up to discussion.

In choosing a hospital facility for this, I would think that it would be preferable to go to a hospital that has all three kinds of specialists on the staff. Preferably, it should be a hospital that is a fairly large cancer center, not just a small local hospital. That's just my opinion.

CatherineG inAF
Posts: 34
Joined: Tue May 10, 2016 7:39 am

Re: Newly Diagnosed from overseas. Moving back to the US

Postby CatherineG inAF » Thu May 19, 2016 9:22 am

Thank you Jacques. Your information is helpful.
53 & Female
Diagnosed in Thailand
DX: Rectal Cancer (RC)
Tumor Location: Rectum
Tumor type: invasive adenocarcinoma
Tumor size: 4 mm
Tumor grade: low grade
Baseline CEA value (4.46) 5/2016
CEA 6/2/2016 4.8
Lynch- Negative.
LAR 7/13/2016 in Seatle, Wa
Home 7/18/2016. SCCA did a good job managing the pain. Waiting lab resulsts


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