The Colon Club

I keep lurking -trying to absorb other posting, but just looking for more advice
seen at University MD Med Center-was happy there but have liver mets (about 12 small)-they referred me up to Univ. of PA for liver resection/ablation-saw MD 1/4, he advised surgery in March-no date, no follow up apt, no pre-op visit set etc- (and we've called as has oncologist) -starting to feel we are sitting to long on this
past advice has been kemeny @MSK so I've e mailed up there for appt

Am I just being to impatient--I'm starting to realize this liver mets is really serious and may indicate a time line on life... Univof PA doctor was blunt but also glad that we were not throwing in the towel
so question how patient should you be before running for another consult??
mike

My patience would be exhausted at this point.

mike218 wrote:saw MD 1/4, he advised surgery in March-no date, no follow up apt, no pre-op visit set etc- (and we've called as has oncologist) -starting to feel we are sitting to long on this
past advice has been kemeny @MSK so I've e mailed up there for appt

Am I just being to impatient--I'm starting to realize this liver mets is really serious and may indicate a time line on life... Univof PA doctor was blunt but also glad that we were not throwing in the towel
so question how patient should you be before running for another consult??
mike

The MD you saw on the 4th is way too disorganized - he/she hasn't even answered your oncologist's call? That ridiculous. Run, don't walk for another consult.

I agree get a consult fast and Dr. Kemeny seems to be the one for liver mets. Good luck and always trust your gut.

Teri

Hi Mike,

I am sorry your are experiencing this. You are not being impatient at all.

I would call every day, several times a day if necessary. I would also set up appointments with other oncologists/facilities. You don't have to go if your original plan works out. I find that having several back up plans makes it a little easier when waiting for the next intervention.

I am not patient about anything for my guy when it comes to his illness or treatment. The times I have been, stuff was missed, follow up appointments were not made, certain issues fell through the cracks and metatisies spread. I learned early on that no one is going to make sure you are getting what you need (as far as your trearmenr goes)but you and your loved ones. I sure have upset medical staff along the way. But if it helps my guy then that's ok. I'm not rude but I do hold his doctors accountable for the treatment plan they have recommended.

So to answer the question "how patient should you be"? My answer is not st all. This is your life. The cancer sure isn't patient. You shouldn't have to be either.

My heart goes out to you... I wish you the best.

Mike,

Dr. Kemeny at MSK is the person to see, especially with multiple small mets that would hopefully respond to resection and HAI. I remember as clear as anything the day 2/09/09 when I went to see Dr. Kemeny for scan results after 4 treatments (FOLFOX). Saw her on that Monday and she said my mets were responding and I was heading into surgery the following Friday am (2/20/09). What? Surgery in 9 days? I started to bluster in my response to her and basically she asked if I had anything more important to do than save my life. Um, no.

When I told her we would go ahead with the surgery I discovered she already had the appointment scheduled with the liver surgeon and colon surgeon for that afternoon for pre-surgical consults. It was a frenetic 11 days preparing (cardiac workups, signing authorizations, more bloodwork, colonscopy, preparing my home and family for me to be away for a week, etc). But I had the surgery and remain NED today, almost 8 years later. I have had other similar experiences there. Had a cyst show up on one scan and she already had the ultrasound scheduled for me when I got there for scan results. Walked in one time with a swollen eye (and office staff terrified I had shingles but I had actually gotten Drano in my eye) and I was sent immediately to one of the eye doctors and when I walked into that appointment 1 hour later they had all my records and were ready to see me. I like the efficiency there although it can be somewhat overwhelming.

I love Dr. Kemeny. She is a genius and while not warm/fuzzy, I would recommend her to anyone. My feeling after having been treated there and also from speaking with the staff and other patients is that MSK doesn't (to use vernacular) "F--- Around." If it makes sense and will give you a shot, she will throw the kitchen sink at you.

You are not being impatient. You need to move. Call the appointment telephone number at MSK. Ensure you have all medical records on hand and ready to send over.

Best wishes,
Amy

mike218 wrote:
Am I just being to impatient--I'm starting to realize this liver mets is really serious and may indicate a time line on life... Univof PA doctor was blunt but also glad that we were not throwing in the towel
so question how patient should you be before running for another consult??
mike

No, you are not being impatient. In fact, you are being way too patient. You saw this guy over 3 weeks ago and no word? that would not fly. I would run, not walk, to Dr. K. After a bad experience with MD Anderson, our next stop was MSKCC (we are 30 miles from Houston, 1500 miles from NYC). I was calling them as we were leaving MD Anderson in fact. It did take a bit of time to get all his info sent over to them, but from the time I call, to the time we were in the office consulting with Dr. K was about 25 days, DH's HAI pump surgery was scheduled for 5 weeks later ( would have been sooner, but he had had Avastin the week before and they make you wait 6 weeks for surgery after Avastin). He had 4 FUDR treatments to shrink his tumors (Bi-loblar, I think they counted 9-11 on the first scans) and he was ready for his resection. He had that in May, where the surgeon removed all the tumors or ablated them. DH would not be alive right now without MSKCC. Or, if he was, he would still be on chemo, and that would probably have stopped helping by now.

You are your own best advocate. No one cares about your life as much as you do. Do what you have to, everything you can to preserve it.

Just echoing all of the above as another MSKCC - Dr. k survivor's wife. Read signature below. Get there as fast as you can. Don't wait because if you get too much chemo you might miss the right timing for them to help. Good luck! Let us know...

Just echoing all of the above as another MSKCC - Dr. k survivor's wife. Read signature below. Get there as fast as you can. Don't wait because if you get too much chemo you might miss the right timing for them to help. Good luck! Let us know...

I crossed the ocean to seek Dr K's help when I was told that I have unresectable liver mets (largest 7.5cm) and nobody wanted to try to remove them, to give me hope. 10 months after I had my first appointment with Dr K, after my 4th, and last surgery I was NED...

Good Luck!

thank you all--UofP still without surgical date-or call back---hoping for call back today (my wife can get pushy) and she has run out of patience, have contacted MSK and asked for appt with Kemeny-they took insurance info and waiting on callback-already faxed up some history-MSK had previously said no to seeing me because we used them as 2nd opinion 2 years ago and did chemo with our oncologist (as MSK Basking Ridge said) --now seems like it could happen, hoping to hold Avasitn this week in hope for surgery mid March-that was the target date with UofP so I, hoping someone, somewhere will get the ball rolling-feel like everyday is another day lost (even though we're on chemo)

mike