Newly Diagnosed from overseas. Moving back to the US

[CatherineG inAF]

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?

[Cowgirl918]

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.

[Nik Colon]

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]

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.

[CatherineG inAF]

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.

[ktwmn]

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.

[Sams wife]

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.

[Ragman]

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

[Jacques]

.. 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]

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.

[CatherineG inAF]

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.

[beck1965]

I'd want to be where I have family/friends to help me through and offer that moral support.

[Jacques]

...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]

Thank you Jacques. Your information is helpful.