re: Any Stage IV rectal cancer survivors w/liver, lung mets?

[musiclover]

My friend Mark is going through a rough time after being taken off his last trial and told he has days to decide between two other regimens, neither of which are sounding good. Can any of you out there who have been through this and survived please offer some encouraging words?? It would be so appreciated. He has extensive nodules in both his liver and lungs. A new spot they found looks suspcious and the doctor has implied it is a new sort of cancer, i.e., lung cancer. Thanks so much!

[Holly]

Kathryn,

As a stage IV colon cancer survivor, I would encourage you to encourage Mark to be PROACTIVE in the management of his health.

Kathryn, as much as you care about Mark and as wonderful of a caretaker you sound like you are...What you need to do is to make Mark want this more. Make him believe that ALL things are truly possible.

I would recommend that Mark gets a second, third, fourth etc. opinion. Why?

From your post, Mark sounds like he is going through a difficult time in his journey. Too, what I read is that Mark has allowed his current oncologist to have much too much control in the management of his health. I will reiterate that Mark needs to be PROACTIVE in the management of his health. Mark's oncologist is treating Mark based on his knowledge and experience. Mark and his medical team need to be just that a 'team.' I believe that a healthy and mutually satisfactory team is a partnership 50/50 if you will. Mark must take his 50%. When I read that Mark has been removed from his latest trial and has been given days to make a decision, it screamed to me that Mark is not taking his 50% but rather giving 100% to the oncologist.

You have written that Mark has extensive nodules in his lungs, liver and now a suspicious new growth that has yet to be determined. Correct? It would be helpful for Mark to find out the extent of lung and liver involvement. Specifically how many nodules on each lobe of his lungs and liver. What is this suspicious new finding? Metastisis to the lungs and a second primary cancer are very different. How to determine and differentiate? A petfusion scan would identify location and quantity. Then, a biopsy of the growth would specify and identify type.

There is so much HOPE! At 30, I was dx with stage IV colon cancer and was not expected to live through December 2003. There are technologies available today newer drug combinations, SIRT spheres, RFA and surgery that may be available to Mark. It is my hope that Mark will be proactive in the management of his health and seek another opinion.

Holly

[musiclover]

Holly
Thanks for your reply. I've sat with Mark's first doctor as they looked over the scan prior to his trial. There were nodules everywhere - too many to count. Surgery was out of the question. When that news hit Mark he was paralyzed. I saw it happen at that moment and his spirit began to shrivel from then on. Since then, the nodules have grown, more have appeared and the new suspisious spot has been discovered. RFA is out of the question - I've already contacted Kettering Sloan about a trial using this and they said Mark was inelligeble - too many lesions.

He's relatively "up" mentally after all he's been through. Aside from feeling week from the many treatments and the disease itself, he, just does not have the "proactive" personality which is why I've stepped in. I am not making decisions for him, I am merely presenting all available options so he can make sound decisions, asking a LOT of questions, being a thorn in the doctor's side(s), etc. I'm going to try to contact MD Anderson to see if he can go there for a second opinion. That will be difficult as the hospital here has taken all his records hostage. In the County Hospital world here in L.A. it is so congested it takes weeks (months in Mark's case) to get a copy of anything. I'll need a lawyer and a lot of time to get what I need.

As important as it is to be proactive it is equally important to believe that what the doctors are doing is working. I so appreciate your input. Can you please tell me what kind of treatment you had, how extensively the cancer had spread (no one on any board has had mets as bad as Mark's that I've spoken with)? Thanks and hope to hear from you soon.

[Holly]

Kathryn,

I have included a summation found within the hhs website regarding medical records and your rights. You must be specific in your request. Ask for exactly what you want. Leave no room open for interpretation. I have had to request my records twice from the same office before because they failed to send what I originally requested. Ex: ask for a complete copy of the medical record to include but not limited to: You should not need a lawyer but you do need to PUSH! When I consulted at MD Anderson, I was getting ready to leave and asked for a complete copy of the my medical records within the facility. Talk about a big facility! The medical records department manager told me it could take days and that there would be a charge of X per page. I told her she was freakin' crazy. I marched back to my oncologist's office and explained the situation to him. He called medical records, told them they were my records and to make a freakin' copy now. My records were available within an hour. MD Anderson is, like many major medical facilities, paperless (for the most part). All the medical records department had to do was look up my registration number and push print. Please see below:

I hope this helps!
_____________________________________________________________

There are answers to these questions. It may seem strange, but the answers lie in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA applies not only to health insurance, but privacy and medical records issues as well. So, let's answer those questions...


HIPAA gives you the right to see your medical records in your doctors' offices.

HIPAA not only allows your doctor to give a copy of your medical records directly to you, it requires it.

In most cases, the copy must be provided to you within 30 days. That time frame can be extended another 30 days, but it's required that you be given a reason for the delay.

You may not be able to get all of your information in a few special cases. For example, if your doctor decides something in your file might endanger you or someone else, the doctor may not have to give this information to you.

You may be charged for making and mailing copies.

[missjv]

HI,
WELL AS FAR AS HIS RECORDS BEING HELD HOSTAGE THE HOSPITAL CAN'T DO THAT THEY ARE HIS THEY BELONG TO HIM. I WOULD GO STAND IN THEIR FACE EVERYDAY UNTIL THEY MADE COPIES. ALSO IT WOULD NOT BE DIFFICULT FOR THEM TO FAX HIS RECORDS TO ANOTHER HOSPITAL THEY MIGHT ACT LIKE IT IS A BIG BOTHER BUT IT IS THEIR JOB AND IF THEY WON'T HELP YOU KNOWING HOW SICK YOUR FRIEND IS I WOULD NOTIFY THE NEWSPAPER. HAS YOUR FRIEND BEEN ON CHEMO YET? HE MIGHT RESPOND AND HAVE SHRINKAGE OF HIS LESIONS. I WISH I HAD ANSWERS FOR YOU AND I WISH YOUR FRIEND WASN'T GOING THROUGH SUCH HELL TO GET HELP IT IS HARD ENOUGH KNOWING YOU HAVE THIS DISEASE AND THEN NOT TO BE ABLE TO GET YOUR RECORDS IS JUST WRONG. I WOULD CONTACT MD ANDERSON AND EXPLAIN THE SITUATION MAYBE THEY WOULD HAVE LUCK IN GETTING THE RECORD COPIES. THEY SHOULD STILL SEE HIM ANYWAYS WITHOUT HIS RECORDS. THEY WILL HAVE TO RUN ALL THE SCANS AND SUCH AGAIN BUT IT MIGHT BE EASIER AND QUICKER FOR MARK TO START OVER. GOOD LUCK AND YOU ARE A GREAT FRIEND FOR DOING ALL THIS HE IS LUCKY TO HAVE YOU, AND MARK WILL BE IN MY PRAYERS.

MISSJV

[musiclover]

Wow, thanks for the quick reply! I am dealing with a County hospital that is inundated with insurance-less poor people (like my friend). I've already discussed the hell I am having getting the records with the doctor. He did say the the records were the patient's property but was unwilling to help me get them. He's new and overwhelmed and probably doesn't even how to resolve this one. I will dig my heels in harded to get them, thanks for lighting the fire in me again.

[missjv]

HI,
WELL I THINK THE BEST THING IS GET HIM TO MD ANDERSON AND LET THEM EVALUATE LIKE IT IS HIS FIRST TRIP TO ONCO. I HATE TO SAY IT BUT HOSPITALS, AND SOME DOCTORS TREAT THE UNINSURED LIKE GARBAGE IT IS DISGUSTING AND WRONG BUT IT HAPPENS. IF YOU ARE IN CALIFORNIA THEY HAVE MED CAL WHICH IS RUN BY THE STATE DID YOU CHECK INTO THAT? I SAY GET HIM ON A PLANE AND GET HIM TO HOUSTON AND START SOME FORM OF TREATMENT MARK SOUNDS LIKE HE HAS ALOT OF CANCER AND IT WILL GET WORSE IF LEFT UNTREATED CAUSE WHO KNOWS HOW LONG THE CRAP HAS BEEN GROWING ANYWAYS BEFORE HE WAS DIAGNOSED. HOLLY IS RIGHT EVERYTHING IS DONE BY FRICKEN COMPUTER NOWDAYS AND GETTING HIS RECORDS THAT ARE HIS SHOULD NOT BE A HASSLE IT IS THE PEOPLE WORKING AT THE HOSPITAL WHO JUST DON'T CARE CAUSE IF THEY DID THEY WOULD BE MORE HELPFUL.

MISSJV

[northern lights]

I think your friend is very lucky to have you advocting for him. There have been times in my own journey that I just wish someone else would take over for me, even if it was just for a few hours.

I also think it is great that you attend medical appointments, as long as your friend is willing. I have a friend come with me and she writes down everything the doctor is saying. I sit and listen, confirm what I think I heard and then I can discuss everything with my friend afterwards. It has been really helpful, especially as more doctors get involved.

I have 5 doctors monitoring my care, plus since I am in the military I also have a medical administrator who manages my file. It is great when I can refer back to the meticulous notes and be able to fill in gaps that one person or the other may not know about. (and sort out conflicting info) I have a folder that has all the info sheets, medication facts, leaflets etc.

Believe everyone when they say you need to be proactive about his care. The more informed you are, the better decisions you will make. My docs were considering a second dose reduction (Folfox) and I was really worried about its diminished effects. I found out about a drug that would boost my immune system (Neupegin) and allow me to carry on at the current dose. The doctors never presented this as an option. Neupegin has worked fabulously for me and I am 2 treatments away from finishing.

I wish you both success in your journey. You must believe that cancer can be beaten and focus energy on the things you can control, stay positive and informed.

If you are religious or believe in any higher power, I believe "If He brings you to it, He will bring you through it"

Sharon