Traveling for treatment

Clovergirl

I'm wondering how difficult it is to travel for treatment. I see that many of you have. Where did you stay? Hotels? And did u have to have a caregiver with you? Thanks for any info.

Lorikat

Clover girl, I traveled for
Clover girl, I traveled for treatment to MDA in Houton Tx. The first thee days I was there my husband and I stayed at the rotary house hotel which is attached to the hospital. After that we rented an apartment for the duration of he treatments. There are Temp Housing apps fully furnished including Linen, dishes, telephone and Internet service. I believe the hospitals also have lists of reduced cost housing units. When I go for my 3 month ck ups I just stay in the hotel. It's easier and I don't have to rent a car.

I personally, other than the cost, think that being away from home for the chemo and radiation may have been easier than being home. I could rest, exercise or even throw tantrums and cry without upsetting the family. When bowel movements hurt sooooooo bad I screamed and cried only my husband and myself knew. Also, as I am in remission, I think of Houston as the "cancer place" and not my home so much. I know this is really weirded thinking but kinda gives me down time when at home. Kinda like Scarlett when she said " I'll think about it tomorrow", I tell myself I'll think about it in Houston.

My Husband was with me all through the treatments, but I would have been ok by myself up until the last 2 or 3 weeks. MAYBE could have made it then but would not have wanted to. There are shuttles from most hotels and apt complexes to he hospital and home as well as to some shopping. Good luck, Lorie

Marynb

Clover
Hi. I went out of state for treatment and had someone with me at all times. I am from a big family and everyone took turns staying with me. For the first few weeks, it was pretty much fun for me being in the city. Getting out of town lifted my spirits and was a distraction. It was really good for me not to be alone. I was going out to restaurants with my chemo pack hidden under my sweaters. If I had been alone, I would have focused more on aches and pains, etc.

What was most important to me is that I had complete confidence in the hospital and doctors. Absolutely crucial to avoid stress and second guessing, etc.

Angela_K

Traveling for treatment

I traveled 200 miles for treatment and got an extended stay rate ($45 per night) at a new Candlewood Suites right across the highway from the hospital. Drove myself home the first few weekends. My husband would haul me home on a couple of weekends toward the end of treatment. Walked to radiation most every morning.  I had help from friends and family sporadically.  Mentally having them there helped me tremendously and it was a huge help to have them go to the grocery store and help with juicing and fresh food preparation.  It would have been difficult to have done it without them but if I had to, I could have.  The hotel provided shuttle service if I didn't feel like walking or driving myself, which I used maybe once.

I have known others who have either rented or taken their own RV and have stayed near their health care facility in a RV park.  Some parks provide transportation to and from the hospital. Some hospitals have special rates at nearby apt complexes.  An oncology social worker can be a fantastic resource.

I am grateful that I was out of my house for treatment.  I would have put too much stress on myself being home with three teenage boys and I know I would have tried to do too much around the house and not focused on healing like I could when I was away.  It is a time to be a little self centered, I think.

Blessings.

Clovergirl

Thanks for the great info.....
alot of what all of you said was exactly the things I was thinking. I think being away from home may be the way for me to go. Now to decide where!!!!!

sephie

md anderson

that is where i went... 7 hour drive from my home BUT  i stayed with my sis in law for first week and the 1 hour drive in traffic killed me and was too hard on her ( i felt guilty making her drive back and forth and stay all day just for 2 appts)...also i needed a prescription really badly that only MDA had and it would have been another hour drive up and hour back for her to take me back to MDA   so i stayed at hotel across the street because i was by myself for 5 days out of each week.  last 2 weeks , i needed more help.... needed someone with me but was just could not  ask... did not want to bother anyone. hubby had to work ... he drove down every saturday and back on monday.    yes,  you will need help later on unless you do not react to radiation like me.    hugs  sephie 

Clovergirl

sephie said:

md anderson

that is where i went... 7 hour drive from my home BUT  i stayed with my sis in law for first week and the 1 hour drive in traffic killed me and was too hard on her ( i felt guilty making her drive back and forth and stay all day just for 2 appts)...also i needed a prescription really badly that only MDA had and it would have been another hour drive up and hour back for her to take me back to MDA   so i stayed at hotel across the street because i was by myself for 5 days out of each week.  last 2 weeks , i needed more help.... needed someone with me but was just could not  ask... did not want to bother anyone. hubby had to work ... he drove down every saturday and back on monday.    yes,  you will need help later on unless you do not react to radiation like me.    hugs  sephie 

Hotel
What hotel did you stay at?

Lorikat

Hotel...

If you go to MD Anderson the Rotary House is across the street from the hospital.  The hotel and hospital are joined by a "sky bridge" so you don't even have to go outside to get from one to another.  Makes things simple and I Always feel safe.  Lorie

lizdeli

Lorikat said:

Hotel...

If you go to MD Anderson the Rotary House is across the street from the hospital.  The hotel and hospital are joined by a "sky bridge" so you don't even have to go outside to get from one to another.  Makes things simple and I Always feel safe.  Lorie

Cleveland Clinic

I think I read in one our posts that you may be going to the Cleveland Clinic.  When I was first diagonosed I was very forturnate to have the help of my empoyer reach out to a well known university and to inquire about the best hospitals and doctors treating anal cancer since it is so rare.  They came back with 3 recommendations:  MD Anderson, Cleveland Cliinic and Dana Farber. I chose MD Anderson since I had lived in Houston and was very familiar with the area and the hospital's reputation.  Dr.Cathy Eng was also recommended as extremely knowledgable about anal cancer and she sees 4-5 patients anal cancer cases per week.  Other doctors might see 4 or 5 in their career. 

 Just wanted to pass that on.  Cleveland Clinic could very well be a great place for your treatment.  Ask them how many cases they see, what their treatment protocool is, etc.

Wishing you well.

Liz

Marynb

Hospital ratings
I am reposting this here for you. Dec 28, 2012 - 9:39 pm
Ratings of Hospitals for Cancer
Hi clovergirl and EricL,

I just want to tell you the 2012 ratings for hospitals for cancer treatments.

1. MD Andersen
2. Memorial Sloan Kettering
3. Johns Hopkins
4. Mayo Clinic
5. Dana Farber
6. Cleveland Clinic
7. Mass General Hospital

Also, for anal cancer some top research comes out of University of California San Fransisco.

You can't go wrong with any of these hospitals for treatment. Good luck.

Angela_K

Marynb said:

Hospital ratings
I am reposting this here for you. Dec 28, 2012 - 9:39 pm
Ratings of Hospitals for Cancer
Hi clovergirl and EricL,

I just want to tell you the 2012 ratings for hospitals for cancer treatments.

1. MD Andersen
2. Memorial Sloan Kettering
3. Johns Hopkins
4. Mayo Clinic
5. Dana Farber
6. Cleveland Clinic
7. Mass General Hospital

Also, for anal cancer some top research comes out of University of California San Fransisco.

You can't go wrong with any of these hospitals for treatment. Good luck.

More!

There are MANY more hospitals that successfully treat anal cancer than those listed in the above posts.  Do your research, ask questions, then trust what you know (combined with your gut instinct) with which will work better for YOU as far as finances, logistics,  support network and health care.  For example:  I chose to go to Scott & White Hospital in Temple, Texas because it was closer to my hometown in East Texas and my long time residence in West Texas, close family in Austin and much easier for friends and family from all over the state to get to and especially my teenage children -- which was vital to me and to them.  Scott and White is a teaching hospital and is ranked nationally.  My radiology onc attended medical school at Albert Einstein College of Medicine where she focused on AIDS research and treated countless numbers of anal cancer patients, then moved to Sloan Kettering, then Texas A&M and then was currently treating 2 others at S & W for anal cancer when I met her for consult. Upon meeting her I just KNEW Scott and White was the place for me. And I could have gone to MD Anderson.

 

It was the right fit at the time.  And I know you will find yours!

 

God Bless.

Angela

 

Marynb

Angela_K said:

More!

There are MANY more hospitals that successfully treat anal cancer than those listed in the above posts.  Do your research, ask questions, then trust what you know (combined with your gut instinct) with which will work better for YOU as far as finances, logistics,  support network and health care.  For example:  I chose to go to Scott & White Hospital in Temple, Texas because it was closer to my hometown in East Texas and my long time residence in West Texas, close family in Austin and much easier for friends and family from all over the state to get to and especially my teenage children -- which was vital to me and to them.  Scott and White is a teaching hospital and is ranked nationally.  My radiology onc attended medical school at Albert Einstein College of Medicine where she focused on AIDS research and treated countless numbers of anal cancer patients, then moved to Sloan Kettering, then Texas A&M and then was currently treating 2 others at S & W for anal cancer when I met her for consult. Upon meeting her I just KNEW Scott and White was the place for me. And I could have gone to MD Anderson.

 

It was the right fit at the time.  And I know you will find yours!

 

God Bless.

Angela

 

Hospital Rankings
When it comes to choosing a hospital, there are a lot of factors that will be considered. Ideally, you want a hospital that is recognized by the National
Cancer Institiute as a comprehensive cancer treatment center. If you go to US News and World Reports Hospital rankings for 2012 and choose the rankings tab, you can see the rankings specifically for cancer.
There are a lot of reasons why this is so important. I will use my own case as an example. I had not been feeling well for years and bounced around from specialist to specialist in my home state. I was finally diagnosed with anal cancer and after a couple of mess ups by the hospital where I live, my family insisted I get to a top rated hospital out of state. To make a long story short, after several types of scans( which I never would have had at the hospital in my state), I was diagnosed with another very rare cancer that is totally unrelated. So after treatment for anal cancer I had surgery for the second cancer. There is no known protocol that is effective in curing the second cancer. I know for sure that if I had stayed at the hospital where I live(which is unrecognized by NCI), I would not have been properly diagnosed.
The bottom line is that when it comes to cancer treatment, anything can happen and you really want to be at the best place possible! I am glad that I went to a top rated hospital! Thank God my family insisted.

Angela_K

Marynb said:

Hospital Rankings
When it comes to choosing a hospital, there are a lot of factors that will be considered. Ideally, you want a hospital that is recognized by the National
Cancer Institiute as a comprehensive cancer treatment center. If you go to US News and World Reports Hospital rankings for 2012 and choose the rankings tab, you can see the rankings specifically for cancer.
There are a lot of reasons why this is so important. I will use my own case as an example. I had not been feeling well for years and bounced around from specialist to specialist in my home state. I was finally diagnosed with anal cancer and after a couple of mess ups by the hospital where I live, my family insisted I get to a top rated hospital out of state. To make a long story short, after several types of scans( which I never would have had at the hospital in my state), I was diagnosed with another very rare cancer that is totally unrelated. So after treatment for anal cancer I had surgery for the second cancer. There is no known protocol that is effective in curing the second cancer. I know for sure that if I had stayed at the hospital where I live(which is unrecognized by NCI), I would not have been properly diagnosed.
The bottom line is that when it comes to cancer treatment, anything can happen and you really want to be at the best place possible! I am glad that I went to a top rated hospital! Thank God my family insisted.

Hospital Rankings

Mary ~ Absolutely. I am glad that you went to a top rated hospital, too and so happy that you found YOUR right fit for treatment. 

Blessings and above all, peace.

 

Angela

Marynb

Angela_K said:

Hospital Rankings

Mary ~ Absolutely. I am glad that you went to a top rated hospital, too and so happy that you found YOUR right fit for treatment. 

Blessings and above all, peace.

 

Angela

Angela

Hi Angela, I like your new pic! Actually, because my second cancer is so rare and treatments are, for the most part, clinical trials, I may end up at more than one hospital, depending on how things progress. There is no effective cure for the second cancer that I have. I pray they find a cure as effective and side effect free as the treatment for anal cancer. I would endure any side effects in a heartbeat!

The point is I would NEVER go to a hospital that is not recognized by the NCI as a comprehensive cancer center after what I know now. The risk is much too high. So, I highly recommend that anyone looking for treatment, stick to a highly rated comprehensive cancer center, recognized by the NCI. It really is a life and death matter!