Are Cancer Treatment Centers a good idea?

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molly7511
New Member


Date Joined Apr 2011
Total Posts : 8
   Posted 5/13/2011 11:37 PM (GMT -6)   
My husband and I were floored after the doctor informed him that he had colon cancer which had spread to his liver.  The m.d. called it Stage IV cancer, which is the worst.  When we asked the m.d. about his life expectancy, he replied, "This is Stage 4 ... the End Stage". (Terrible bedside manner).
 
He is still in the hospital and was scheduled to come home today, but at around 4:00 pm, he had to have a blood transfusion (since is RBC count was low).  He had surgery on Tuesday to remove the mass on the colon.  The doctor called me and told me that the surgery went well and hung right up.  I had many questions about this cancer.
 
At this time, the local hospital has assigned 4 doctors to manage his care; an oncologist, his internist, a GI doctor, and the cancer surgeon (with a terrible bedside manner). It's very difficult to reach any of these doctors. I have left messages with all of them and only 1 returned my call.
 
My husband is in a considerable amount of pain and the doctor doesn't want to increase his doses. He was given IV dilaudin for post-surgical pain and the following day, they reduced him to 1 10 mg Oxycodone pill every 12 hours with 1 5 mg. percocet (6 hours after oxy pill) for breakthrough pain.  I returned from the hospital a few hours ago and contacted every one of his "assigned" doctors.  He's badly in need of pain relief.
 
He's still very "gassy" and the gas moving through his bowels is like torture. But his doctors simply refuse to increase his doses.
 
Anyway, their plan is to treat him radically with chemo.  I asked one of the doctors if they'll be scanning him any more to see if the cancer has spread anywhere else in his body. The doctor replied, "We'll be scanning things every so often".
 
I have a bad feeling about this "team" of doctors that have been assigned to him. Each one contradicts the other. 
 
I'm seriously considering taking him to a specialized cancer treatment facility. My husband was in such a bad mood tonight, he told me that he'd rather go home and die if he has to spend another day in a hospital.
 
Can anyone suggest a good cancer treatment center ... some kind of medical facility which specializes in cancer treatment.  I'm very worried that they'll send him home with inadequate pain relief.  Why are they letting him suffer?
 
One more question:  if they removed the "mass" from his colon, does that mean the cancer is gone (from his colon)? I'm so confused.
 
Thanks in advance for any help!
 
Sarah

flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 5/14/2011 3:21 AM (GMT -6)   
Sarah,
I am so sorry that you and your husband are going through this, especially with such an insensitive doctor! My heart goes out to both of you. sad

If my husband and I were in the same situation, we would start by finding another oncologist. You can choose your doctors and don't have to stick with the ones who were assigned to him in the hospital. The doctor who was assigned to me when I was diagnosed with Crohn's was terrible, so I found a gastroenterologist who cared, and had my records transferred to her.

If you live in a small town and do not feel that you have access to the best cancer treatment available, then I would look into finding an oncologist in the largest city nearby (so that you can still live at home) or look into going to MD Anderson in Texas or one of the Cancer Treatment Centers.

Please keep us posted on how things are going. You are both in my thoughts and prayers.

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 5/14/2011 5:32 AM (GMT -6)   
Sarah I am so very sorry to read this. The last thing your husband and you need right now is insensitive doctors and lack of pain medication.

You almost have no other options but to get him out of there and go somewhere that will give you both the attention and level of care he needs. I hope that is easier done than said for you. What a position to be in. It is almost like they are just giving up on this. Regardless of the seriousness of the stage he is in, this should be handled so differently by that team at that hospital. If they are ill equipped to help they should be helping to line up a transfer and referrals to another facility.

Good Luck in being able to get this straightened out quickly. This is a tough situation for you to have to do by yourself. You both are in my thoughts and prayers. Take care Sarah.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/14/2011 7:53 AM (GMT -6)   
I'm not sure about the credibility of those cancer centers that advertise on TV but I do believe you need to get your husband to a metropolitan hospital, preferably one that has high ratings for oncology. What state you do you live in? This group might be able to assist you in a recommendation if we know where you are.

Sue

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 5/14/2011 12:45 PM (GMT -6)   
If it were my husband I'd have him transferred to another hospital. I don't know that I'd go the cancer treatment center route, but I'd see about getting into Mayo, Cleveland or somewhere similar.

Like suebear said, let us know where you are located, and maybe someone has suggestions.

Follow your 'gut feeling'...they're usually correct.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 5/14/2011 1:31 PM (GMT -6)   
     Sarah, I am so sorry to hear this.  I agree with Suebear.  I'm not so sure about those Cancer Treatment Centers.  My neighbor received terrible treatment from Fox Chase Cancer Center in Philly when she had Lymphoma.  She was able to transfer to Jefferson Hospital in Philadelphia and they helped her.  She has been cancer free for twenty years.
     Stage IV is the worse stage, true, but I have a cousin in AL who was diagnosed with Stage III+ colon cancer ten years ago and she is doing fine.  The cancer did return to  her lung four years ago but they were on top of things and removed the cancer.  She did have to go for more chemo but, thank God, is cancer free today.   Periodically, she has tests done, I believe every three months.  She went to a hospital in Birmingham.
     Where do you live?  Perhaps someone in this forum could lead you in the right direction for a treatment center for your husband.  God bless.  I will keep you both in my prayers.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/14/2011 8:42 PM (GMT -6)   
im so sorry to hear about this, it's horrible and i will keep you in my thoughts.
i have a friend who took their mother to one of those, i think it was in arizona, somewhere out west, maybe texas, and they were really impressed. i think just check it out really well before you go
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 5/14/2011 9:46 PM (GMT -6)   
Hi Sarah, so sorry to hear about your situation! Shame on those doctors for acting that way. Where in the US do you live? If you could get to a nearby teaching hospital or major university hospital, I think you might get much better care somewhere like that. I had terrible issues with doctors but I got referred to UNC and the care I have received there has been wonderful. And if I can remember correctly, that hospital has an entire building dedicated to cancer treatment/research/etc. Much like most other teaching hospitals.

If you or your husband are not comfortable than as soon as he is feeling well enough I would suggest seeking help elsewhere, no doctor should ever treat a patient like that.

My thoughts are with you and your husband!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/15/2011 6:07 AM (GMT -6)   
Sarah, just seconding what everyone said, I'm so sorry, what a lot to be dealing with. If you're near Boston there's the Dana Farber cancer center here, as well as several excellent teaching hospitals. Both he and you deserve better care and better communication. You're already dealing with so much, but it's worth it to prioritize finding an excellent medical team.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 5/16/2011 6:48 AM (GMT -6)   
     Sarah, I didn't want to sound like I was totally against the Cancer Treatment Centers.  I saw the commercial for them last night.  I found my colorectal surgeon online because my GI doctor refused to send me to one and I had already gone through soooo many meds with the ulcerative proctitis but he said he wanted to try more...enough already.
     Look online for the best rated Cancer centers near you and investigate the oncologists they have on board. 
     How is your hubby feeling today?  Praying for both of you!

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 5/17/2011 1:15 AM (GMT -6)   
Hi Sarah! I'm another Sarah! And I have also had my own diagnosis of cancer. Depending where you are located, will have a lot to do with where you seek treatment.

I sought treatment for my cancer near home but ultimately I went to the Dana Farber Cancer Institute and Brigham & Women's Hospital. I was treated well there and have no complaints! Good luck Sarah! Don't be afraid to seek outside care and opinions...don't be afraid to be 'pushy'! :)

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 5/17/2011 6:52 AM (GMT -6)   
     Riddle, you said a mouthful....if you aren't "pushy" you just get looked over and forgotten about.  That is what I have run across in life.
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