Diagnosed while working abroad

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jts
Posts: 17
Joined: Sat Aug 24, 2019 3:07 pm

Diagnosed while working abroad

Postby jts » Sat Aug 24, 2019 3:50 pm

Hi,
I really appreciate this board. The last 10 days or so have been difficult and reading this board is the main thing that settles me down.

I am an American working academic jobs in Europe, currently in Germany. 42yo, one wife and one 4yo kid. You could say my bathroom habits changed over the last few months, but I did not think much of it. Then about a month ago I went to the Hausartzt because I was pooping blood and uncomfortable, and got referred to the EDH Dr. Eventually I went to their emergency walk-in time because I was really not feeling well. The Drs said I had a large polyp in my rectum, but mostly downplayed it. They scheduled me for colonoscopy, CT, MRI, and did an ultrasound scan that day. At that point the thought of cancer was not on my mind at all, but I guess they must have known the likely outcome. The colonoscopy was fine except for the 6cm tumor. The Dr took biopsies, took pictures, said it would require surgery. Later that day I started looking up some of what this all meant, and it started to sink in that my chances of living 5 more years was about a coin toss. It was a difficult weekend.

Since then I have gotten the CT scan, which was apparently OK except some possibly swollen lymph nodes. I was thankful for that. I have to wait awhile for the MRI, but not so long that it would make sense going to another city for it. The biopsy came back positive for grade G2 cancer. The Dr wouldn't say anything else about it at the time. I don't know what else they test it for or how many of the biopsies were positive, or if that matters. The Dr said I would probably get radiation and chemo, and then have surgery to remove my rectum, but they need to see the MRI.

Anyhow, I feel a little stuck. My extended family and long-term friends are in the US, but it's not like I can pop back over there and expect to get medical care. OTOH my job here is a temporary contract, and my residence here is contingent on my job. It's a tricky situation. I am really really hoping there is a period of stability after the surgery where I will be employable again.

Does anyone know of a hospital in Germany that has good outcomes for rectal cancer surgery? My understanding is that they have a process for certifying "cancer centers", there are about 200 of them for CR cancer, but I have not found anything equivalent to "board certified" surgeons, which everyone in the US recommends. I know about darmkrebs.de, and know I need to spend more time on their discussion board.

Did anyone experience back pain, sciatica, and leg fatigue from rectal cancer? Around the time I went to get the referral to the EDH doctor I suddenly and inexplicably woke up with a knot on one side of my back and pain shooting down my leg. Also numbness, and partly unable to move my calf. Over the following month it got better, but I still feel this unusual fatigue from just walking or standing around. The EDH Dr says it is not related, but it's just so weird.

Thanks for any advice,
jts
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles

Lee
Posts: 5967
Joined: Sun Apr 16, 2006 4:09 pm

Re: Diagnosed while working abroad

Postby Lee » Sat Aug 24, 2019 4:52 pm

Hi and welcome, sorry for the reason you are here.

I am a 15 yr survivor of rectal cancer. Gotta up date my signature line. There are many of us out there, many of us move on from this board, butt just know you can beat this.

I'm in the USA, hopefully you will get answers regarding the best hospitals in Germany. The one piece of advice, try and find a board certified "Colon Rectal Surgeon" vs a general surgeon. They have advance training and that can be important when dealing with rectal cancer.

Does colon cancer run in your family? If you have siblings, they too may want to get checked out.

Good luck, know that you are not alone here, and that we have all walked in your shoes. You will find a wealth of information on this forum.

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!

jts
Posts: 17
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sat Aug 24, 2019 5:15 pm

Lee wrote:Hi and welcome, sorry for the reason you are here.

I am a 15 yr survivor of rectal cancer. Gotta up date my signature line. There are many of us out there, many of us move on from this board, butt just know you can beat this.

I'm in the USA, hopefully you will get answers regarding the best hospitals in Germany. The one piece of advice, try and find a board certified "Colon Rectal Surgeon" vs a general surgeon. They have advance training and that can be important when dealing with rectal cancer.

Does colon cancer run in your family? If you have siblings, they too may want to get checked out.

Good luck, know that you are not alone here, and that we have all walked in your shoes. You will find a wealth of information on this forum.

Lee


Thank you for the message. No history of CR cancer. There have been some cases of other cancers in my extended family, but I will be the first in my generation. I haven't told my family in the US yet. I figured I would wait for the full diagnosis before I upset them with this.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles

jsbsf
Posts: 15
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

Re: Diagnosed while working abroad

Postby jsbsf » Sat Aug 24, 2019 6:26 pm

Jts,

Sorry to hear your news. Unfortunately, I am not aware of Germany’s system, but my husband went in for his first colonoscopy yesterday and was told he has a 5cm mass on his colon. It’s still a bit of a blur, but I am pretty sure she said it was on his rectum. He had his lab work done over a month ago and the only test off was blood in the stool sample. Not much, but enough to warrant a colonoscopy. Since he’s had a bad hemorrhoid for about three or 4 months, he believed that was the cause. Another blood test following the procedure showed perfect numbers, which gives us hope. The colonoscopy paperwork said polyps were removed, but no indication of how many or the sizes. We expect an email with biopsy results. Next step is to schedule an MRI and a CT scan.

He didn’t experience the symptoms you are describing. He mentioned that a month or so ago he felt a snap in his lower back, behind the left side pelvis, that felt like a rubber band, and was thinking it might be a hernia. It wasn’t painful, but alarming. He’s been taking a stool softener which relieves pain which he also blamed on the hemorrhoid. He’s experienced constipation and blockage. He says he knows there is more, but feels everything close up, but he can’t push because it becomes very painful. The laxatives have helped. Now we feel pretty sure the hemorrhoid is a side effect of the tumor.

He was in agony and always thought it was the hemorrhoid. I was surprised because I didn’t think they were as painful as he described. Now I am pretty sure the hemorrhoid was a red herring all along.

He’s had this situation for about a year that when he gets stressed out, he needs to go to the bathroom. Stress has seemed to be a big factor in all this.

He’s been unusually fatigued and wants to go to sleep as early as 8pm for most of the past year. He’s lost about five pounds, but is a good weight. He stomach has been distended. It’s been this way for awhile, but I’ve lost track of how long.

I am also concerned about the quality of medical care, especially since my mother died from colon cancer in 2012 at 65 after a 10 year battle which started off with stage 3. We have Kaiser insurance. The sad part is I have had 3 colonoscopies because of my mom but couldn’t convince him to get his first. If we’d done this when he turned 50 like we were supposed to have, we probably wouldn’t be here.

I think you should take your paperwork to another doctor for a second opinion. That’s what I plan to do. I still want to know how Kaiser Permanente compares with other hospitals, especially when I’ve heard so many great things about UCSF.

I like Lee’s advice about finding a board certified Colon Rectal surgeon. I wouldn’t have thought about that on my own. My main feel is to get the tumor out. I want it gone yesterday.

I hope your family is out there with you. It’s hard to imagine him by himself, even though he seems less worried than I am, I think my being with him helps.

This site seems valuable for people like us just starting out on this frightening journey, and I’ll be spending a lot of time here hoping to update my signature for him with that NED like see so much. I wish you the best.

Jsb
DH 61
8/23/19 Colonoscopy, 5cm mass
8/26 CT, pot’l liver met
9/6/19 PET: 2.7cm liver spot looks like stage IV
9/16/19 MRI
9/23/19 Port, tag liver spot for removal est. 3 months.
9/30/19 Start FOLFOX6

Lee
Posts: 5967
Joined: Sun Apr 16, 2006 4:09 pm

Re: Diagnosed while working abroad

Postby Lee » Sat Aug 24, 2019 8:39 pm

jsbsf wrote:Jts,

I like Lee’s advice about finding a board certified Colon Rectal surgeon. I wouldn’t have thought about that on my own. My main feel is to get the tumor out. I want it gone yesterday.
. . . .
This site seems valuable for people like us just starting out on this frightening journey, and I’ll be spending a lot of time here hoping to update my signature for him with that NED like see so much. I wish you the best.

Jsb


Hi and welcome, also sorry for the reason you are here.

I hear you about wanting it out yesterday. Radiation prior to surgery is the standard "protocol of care" when dealing with rectal cancer. It's a small area and vascular, lots of blood vessels. One of the reasons for radiation, it reduces the chance of those nasty cells finding a new home in your lungs or other parts of your body. It helps the surgeon get clean margins.

Getting a 2nd opinion is ALWAYS a good idea. When I got staged, I asked my surgeon would she be offended if I got a 2nd opinion. She responded "I think that is an excellent idea. I can set you up with someone or you can find someone on your own." I ended up getting that 2nd opinion via a phone call with a surgeon with Mayo Clinic who confirmed my treatment plan is what he would have recommended.

Good luck, again know you are not alone here.

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!

CF_69
Posts: 80
Joined: Sat Dec 22, 2018 9:44 pm

Re: Diagnosed while working abroad

Postby CF_69 » Sat Aug 24, 2019 10:15 pm

I was also abroad when diagnosed. I was working on a ship and we were in Spain at the time. I had my colonoscopy and biopsy done there.

I was sent back home to Canada, but I had no health insurance because I was out of my province for too long, and they figured it out.

Luckily my company’s insurance did cover me until my 3 month waiting period went by. I had to pay with my credit card and more or less hope that my company would reimburse me.

It’s definitely a tough situation to be in. You should talk to your HR department. Surely they have a plan for these situations.

Might not be a good one, but then again maybe it is.
47 year old male
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Sat Aug 24, 2019 10:40 pm

Hi jts,

My situation was almost identical to yours, except replace Germany with the Netherlands, and the US with Australia. I chose to come home for treatment as all my family is here, my employer was happy to repatriate me, and I still had citizenship so coverage was fortunately no issue.

I don’t have a lot to add about Germany except to say that lots of overseas surgeons still get US colorectal board certification - my surgeon here has it, along with the UK (he trained at the Cleveland Clinic and St Mark’s). There may be surgeons in Germany that have done similar?

Viel gluck,
Rob
Last edited by Rock_Robster on Sat Aug 24, 2019 11:23 pm, edited 2 times in total.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Sat Aug 24, 2019 10:43 pm

Also the European treatment protocols for RC can be quite different to the US - not necessarily better or worse, but different. Happy to give more info if this is a factor for you.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Diagnosed while working abroad

Postby MetastaticEquilibria » Sat Aug 24, 2019 11:18 pm

jts wrote:Anyhow, I feel a little stuck. My extended family and long-term friends are in the US, but it's not like I can pop back over there and expect to get medical care. OTOH my job here is a temporary contract, and my residence here is contingent on my job. It's a tricky situation. I am really really hoping there is a period of stability after the surgery where I will be employable again.


That does sound tricky. Is there any chance you could apply for permanent residency in Germany? Might be difficult under present circumstances, I imagine. Alternatively, are your wife and kid there as dependents on your visa, and if so, any chance your wife could become the primary visa holder, and you a dependent on her visa? Or if your wife is a German national, can you switch to some kind of spousal visa? I have no idea about German visa requirements, so feel free to ignore if these are ludicrous questions.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

jts
Posts: 17
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sun Aug 25, 2019 4:15 pm

jsbsf wrote:Jts,
He’s had this situation for about a year that when he gets stressed out, he needs to go to the bathroom. Stress has seemed to be a big factor in all this.

He’s been unusually fatigued and wants to go to sleep as early as 8pm for most of the past year. He’s lost about five pounds, but is a good weight. He stomach has been distended. It’s been this way for awhile, but I’ve lost track of how long.

I am also concerned about the quality of medical care, especially since my mother died from colon cancer in 2012 at 65 after a 10 year battle which started off with stage 3. We have Kaiser insurance. The sad part is I have had 3 colonoscopies because of my mom but couldn’t convince him to get his first. If we’d done this when he turned 50 like we were supposed to have, we probably wouldn’t be here.
Jsb


Thank you for your message. I wish you both the best. I can relate to the stress and stomach problems issue, but in my case I feel it was reversed. My guts seemed to have a mind of their own. The tumor makes it feel like you always need to go to the bathroom, and it's hard to tell the difference between needing to pass gas and diarrhoea. So whenever my guts started acting up, whatever I was doing became really stressful. The side-effect was that I would plan ahead for situations where I would be away from a bathroom by just not eating; also not healthy.

Yes, lots of regrets. I spent at least several months ignoring what I now know were clear signs of a problem.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles

jts
Posts: 17
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sun Aug 25, 2019 4:43 pm

Rock_Robster wrote:Hi jts,

My situation was almost identical to yours, except replace Germany with the Netherlands, and the US with Australia. I chose to come home for treatment as all my family is here, my employer was happy to repatriate me, and I still had citizenship so coverage was fortunately no issue.

I don’t have a lot to add about Germany except to say that lots of overseas surgeons still get US colorectal board certification - my surgeon here has it, along with the UK (he trained at the Cleveland Clinic and St Mark’s). There may be surgeons in Germany that have done similar?

Viel gluck,
Rob


Thank you for the message. I'm not sure. When I search the ASCRS I find several doctors in Germany, but they seem to all belong to small clinics.The search form on the ABCRS does not have Germany as an option (it has about a dozen other non-US countries though). I am not sure yet which of those is the important one.

You mentioned in your other post that there's different treatment protocols in Europe vs the US for CR cancer. Yes, I would be very interested in that!

Thanks,
jts
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles

jts
Posts: 17
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sun Aug 25, 2019 5:43 pm

Thank you to everyone that replied. Sorry it took awhile to reply. My IP keeps getting blocked.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles

Rock_Robster
Posts: 340
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Tue Aug 27, 2019 5:08 am

jts wrote:
Rock_Robster wrote:Hi jts,

My situation was almost identical to yours, except replace Germany with the Netherlands, and the US with Australia. I chose to come home for treatment as all my family is here, my employer was happy to repatriate me, and I still had citizenship so coverage was fortunately no issue.

I don’t have a lot to add about Germany except to say that lots of overseas surgeons still get US colorectal board certification - my surgeon here has it, along with the UK (he trained at the Cleveland Clinic and St Mark’s). There may be surgeons in Germany that have done similar?

Viel gluck,
Rob


Thank you for the message. I'm not sure. When I search the ASCRS I find several doctors in Germany, but they seem to all belong to small clinics.The search form on the ABCRS does not have Germany as an option (it has about a dozen other non-US countries though). I am not sure yet which of those is the important one.

You mentioned in your other post that there's different treatment protocols in Europe vs the US for CR cancer. Yes, I would be very interested in that!

Thanks,
jts

Sure jts, I’ll have a go. Just remember these are generalisations and may not apply to every country/hospital/doctor.

The protocols for stages I-III will be pretty similar. The main two differences are:
- Europe tends toward “short-course” radiation before surgery (ie higher daily dose over 5 days, then surgery soon after). The US favours long-course radiation (lower daily dose over 25 days, with surgery typically following 8 weeks later after the radiation has had full effect). There is evidence to suggest the two have very similar outcomes; obviously the EU approach is much faster, but patients do tend to report more side effects - some temporary, some permanent). I suspect (?) The EU approach would rule out the Watch & Wait protocol to potentially avoid surgery.
- I believe Europe favours FOLFIRI over FOLFOX for chemo. In the neoadjuvant setting they’ve been shown to be similar, but I believe FOLFOX has the edge in adjuvant (after surgery). FOLFOX has the downside of a greater risk of long-term side effects.
- Surgery-wise, I suspect the two are similar. Lapro or robotic are pretty common for RC now, and the choice of surgery (LAR, ULAR, APR, TaTME) would depend on the height, size and stage of your tumour.

I suspect the US is also a bit ahead on Total Neoadjuvant Therapy, if this is something of interest after research (or questions!).

If we’re talking stage IV then things change up a notch. But I’ll hold off on that here, and let’s hope we never need this conversation.

Best of luck,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

DarknessEmbraced
Posts: 3348
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Diagnosed while working abroad

Postby DarknessEmbraced » Tue Aug 27, 2019 11:51 am

Welcome to the group and sorry for your diagnosis!*hugs* I don't know about cancer surgeons but I wanted to send you support and hugs! I hope it all works for 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

Pyro70
Posts: 144
Joined: Mon Jan 21, 2019 4:25 pm

Re: Diagnosed while working abroad

Postby Pyro70 » Fri Aug 30, 2019 9:06 am

I was in a similar situation. I was working in Indonesia when diagnosed. Obviously staying in Indo wasn’t an option so I came back to the US. At first I was worried about Insurance, but with the ACA it’s really not an issue if you can afford it. For about $12k/year you get access to the best oncology care in the world. If you move to the US now you’ll be eligible for special enrollment. Or you can wait until January - which would have some benefits. I also have German citizenship and I don’t care what people say about US healthcare, it’s better here for cancer treatment than anywhere else.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak


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