Has anyone gone to Md Anderson for treatment instead of local?
Comments
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Hi Momof2+
Going to an NCI hospital should be kept as an option. See the following for a list of them that are in the South.
http://www.cancer.gov/researchandfunding/extramural/cancercenters#south
It also never hurts to get a second opinion.
You mention you are in Georgia. If you are being treated at Winship Cancer Institute at Emory University in Atlanta you are already at one.
Marie who loves kitties0 -
It is always good to get a
It is always good to get a second opinion. Experimental stuff? That's an odd thing for the doctors to say.
I looked at your first post. What is the overall plan with the current doctors. Did they talk about a future liver resection? If you have liver metastasis, the fewer the better, and you have only one tumor there.
I hope that your local doctors did not give you an expiration date, as I would then get a second opinion asap.
Right now you are probably getting the standard of care necessary. But are you only getting 5FU?
Even though you are Stage 4, it sounds like there isnt a lot of spread, so although this is a long road, please stay hopeful.
I had a lot of disease in my liver so I needed the MOST experienced team, so i couldn't stick with the local docs.
Some people go out of state for a treatment plan, and can still have treatments done locally. Nothing is simple, but it can be done.
I live in the same state as you. I travel to ny because they have the best option for my situation.
It takes a while to understand all that is going on. It's good you are asking questions. Ask anything, anytime
Someone should be able to help. Send a private message if you like. If you want to talk by phone, let me know.0 -
Radiation & 5FUjanie1 said:It is always good to get a
It is always good to get a second opinion. Experimental stuff? That's an odd thing for the doctors to say.
I looked at your first post. What is the overall plan with the current doctors. Did they talk about a future liver resection? If you have liver metastasis, the fewer the better, and you have only one tumor there.
I hope that your local doctors did not give you an expiration date, as I would then get a second opinion asap.
Right now you are probably getting the standard of care necessary. But are you only getting 5FU?
Even though you are Stage 4, it sounds like there isnt a lot of spread, so although this is a long road, please stay hopeful.
I had a lot of disease in my liver so I needed the MOST experienced team, so i couldn't stick with the local docs.
Some people go out of state for a treatment plan, and can still have treatments done locally. Nothing is simple, but it can be done.
I live in the same state as you. I travel to ny because they have the best option for my situation.
It takes a while to understand all that is going on. It's good you are asking questions. Ask anything, anytime
Someone should be able to help. Send a private message if you like. If you want to talk by phone, let me know.
Right now I'm getting 25 treatments of radiation & 24/7 chemo 5FU then surgery 2-3 weeks after. I am in north ga - a small hospital that. I worked at until this. Yes, I would love to talk to you- I don't talk to anyone and. My husband had. To go back to work after 3 weeks with me. Am I doing all I can???
Sandy0 -
Hi Sandy.Momof2plusteentwins said:Radiation & 5FU
Right now I'm getting 25 treatments of radiation & 24/7 chemo 5FU then surgery 2-3 weeks after. I am in north ga - a small hospital that. I worked at until this. Yes, I would love to talk to you- I don't talk to anyone and. My husband had. To go back to work after 3 weeks with me. Am I doing all I can???
Sandy
I sent you a pm
Hi Sandy.
I sent you a pm (private message).
Also, i have colon ca, not rectal, so I'm not qualified on the chemo standard for rectal, but others have rectal and i hope they will chime in. It's good to hear the various experiences.0 -
Sandy,Momof2plusteentwins said:Radiation & 5FU
Right now I'm getting 25 treatments of radiation & 24/7 chemo 5FU then surgery 2-3 weeks after. I am in north ga - a small hospital that. I worked at until this. Yes, I would love to talk to you- I don't talk to anyone and. My husband had. To go back to work after 3 weeks with me. Am I doing all I can???
Sandy
I think this has been
Sandy,
I think this has been mentioned before but the new standard of surgery after chemoradiation is 8-12 weeks after the therapy is over because the tumor continues to shrink after the chemoradiation is over. I went to Cleveland Clinic and they did my surgery 10 weeks out from the initial treatments. This is the one area I am familiar with as I have not had liver mets.
I agree with others you may want to get a second opinion.
Sending light and prayers your way.
Laura0 -
Lauralauragb said:Sandy,
I think this has been
Sandy,
I think this has been mentioned before but the new standard of surgery after chemoradiation is 8-12 weeks after the therapy is over because the tumor continues to shrink after the chemoradiation is over. I went to Cleveland Clinic and they did my surgery 10 weeks out from the initial treatments. This is the one area I am familiar with as I have not had liver mets.
I agree with others you may want to get a second opinion.
Sending light and prayers your way.
Laura
Ten weeks after the completion of treatments or 4-5 weeks after treatment was complete - my oncologist surgeon said 3 weeks after 6 weeks of chemoradiation.
Sandy0 -
Sandy, how many radiationMomof2plusteentwins said:Laura
Ten weeks after the completion of treatments or 4-5 weeks after treatment was complete - my oncologist surgeon said 3 weeks after 6 weeks of chemoradiation.
Sandy
Sandy, how many radiation txs have you had? Has the Dr. talked about a temporary ilestomy while your bum heals? I did the chemo/radiation/surgeries/chemo route with an ilestomy for a year.
I'll help you if I can.
TommyCat0 -
I Would Travel
I would travel to a "Well Known" Cancer Center for another opinion. Most of the time, if you go with a Cancer Center that is has made a reputation being on the forefront of cancer treatments you are at an advantage than if you go to a local hospital. Not always, but most of the time. That's all they do and they often have the latest or most successful options.
I was one of those (along with others) who first heard their prognosis was not very good but second opinions and went with them and are having success. Many hospitals will follow the directions of a "Lead Oncologist" and perform the treatments at a local hospital. Then often the scans are reviewed at the Cancer Center where their Lead Oncologist is. I've been going to Sloan Kettering in NYC for a long time and am very happy with my treatment. While they offer many treatment options and trials, not all of them are new. The HAI pump therapy has been around for a while and SK has very good track record with it. I know someone who travels from Atlanta to NYC for consultations.
I'm a very big believer in what you do first makes a big difference in how well you fare. It's easier to get a good start instead of having to undo what another place screwed up.
BTW - What stage are you? Sometimes people have success with alternate treatments but like going the mainstream chemo route your results really are on an individual basis. As you probably know, there are no guarantees at all and like people, no two cases are alike.
-phil0 -
Sandy,Momof2plusteentwins said:Laura
Ten weeks after the completion of treatments or 4-5 weeks after treatment was complete - my oncologist surgeon said 3 weeks after 6 weeks of chemoradiation.
Sandy
I had the surgery 9
Sandy,
I had the surgery 9 1/2 to 10 weeks after treatment was completed. Last treatment, beginning of September, surgery was November 15. I had an MRI three weeks after my treatment was finished (this was my surgeon's preference for planning the surgery) and the tumor showed shrinkage between the time I had the MRI and the surgery so the radiation did keep on working after three weeks.
I did my chemoradiation at a small cancer center too and was very happy with the treatment there but chose to go to a large hospital for the surgery where this type of surgery is commom place because removing a rectal tumor is a very tricky surgery. There's a smaller space to work in and the pelvic bones to work around. At the larger hospital, they had WOCNs (stoma nurses) who were a Godsend and got me off to a good start adjusting to having a temporary ileostomy.
Since I don't know what's available to you where you are I'm not sure what other types of info you want. But please keep asking. It hasn't been that long since I was in your shoes and the boards sure cleared up a lot of questions for me. And still do....
Laura0 -
Oncologist with experience
As long as your oncologist has experience with your situation before, and you feel comfortable with your team. (Oncologist and Surgeon) Stay where you are at.
I had an unusual cancer, and interviewed several Oncologists before I chose my team. Even then, they misdiagnosed my cancer and caused me future surgery. The second oncologist might have killed me. She had so little experience and to be on her own was mind numbing, or arrogant.
Exercise, Diet, and attitude play just as important part to the battle.
Best Always, mike0
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