Hello everyone. I am schedule for surgery on May 6th. I have taken note of advise I receive from CancerDad, Ktee and others in a previous post.

My medical oncl. told me after I finished chemo-radiation therapy that he will see me after I recover from the surgery and did not send me for any scan. He also mentioned that the pathology of my surgery would decide what course of treatment I would receive following surgery. When I asked my radiation oncl. at my last visit, he also did not refer me for any pre-surgical scans, will do a rectal exam (just a finger thing) at my next appointment. My rectal surgeon will do a 3d ultra-sound (already had one before my chemo-radiation treatment) on the 25th. This ultra-sound is a part of a study (pre and post chemo-radiation ultrasound to measure the effectiveness of the treatment) that I agreed to participate. But there were no mention of CT, MRI or any other scan. Is this normal? Could the surgeon go into surgery just based on Ultrasound? Their best doctors for colon/rectal cancer are treating me at MSKCC. I am hope they know what they are doing!!!

P.S.- Will appreciate more advise on how to handle pre/during/post surgical issues, need of homecare nurse, diet, where to get the stoma, upper or lower abdomen (someone mentioned at Sloan that the surgeon gives you the option to decide the location of stoma), use of dietary supplements post-surgery, and anything important I may have forgotten to ask. Thanks.

Pasha:
It is good to hear from you. I would certainly demand a CT scan. Ask them why they are not scheduling you for one. Don't they want to assess how much the tumor responded to the therapy you did? I had one prior to surgery. It gave the surgeon a better idea what he was dealing with, and when I came back with 6/10 positive nodes, it gave my oncologist some information that the chemo I had was not as effective as he thought it would be.

Best of Luck. Keep us posted.
--CancerDad

Hi pasha

Husband had CT prior to surgery (which was pre chemo and pre radioT) although this was to confirm diagnosis and to see whether there was any mets which there were. His sugeon schedulled his surgery based on digital and sigmoidoscope examination.... the CT they managed to squeeze in before surgery.

He has had post op scans but his liver surgeon relies on ultrasound to assess how his liver is doing.

I seem to recall that husband had some kind of scan using the radioT zapper????

Did you have a scan before your radioT?

Surgery is no day at the beach. Husband set himself little goals each day...... get rid of a tube a day, legs exercises every hour, a little further down the corridoor each day, a flight of stairs by day 4. It was a bit frightening but had good support both in and out of hospital.

good luck
ktee

Pasha,

I am surprised to learn that you will not be undergoing anymore scans at Sloan. I recommend you talk to your surgeon (team leader) about this.

Things that I have learned about concerning MSKCC: 1) Have faith in you doc but mistakes can happen, such as miscalculating the amount of fluids lost & replenished during surgury (can cause a problem in waking you up after surgury); 2) Get you doc to tell you upfront how long he expects you to be in recovery / intensive care so that your wife can be prepared to intercede on your behalf if necessary-- no one told my BIL that he would be on a ventilator for 11 days; 3) Once you come off a ventilator and before you are fed real food, you have to pass a "swallow" test (cost by the way = $400) and there are only 2 people at Sloan who administer this test-- You want nourishment in you to build up your body and if one of these testers in on vacation, it might take 4 days for the other to come and see you, and that means you go hungrey; 4) Get walking ASAP-- the longer you lie in bed the weaker your muscles become and the harder it will by on you later; 5) Tell your doc you are concerned about the quality of nursing care you will be receiving in the hope that they will start to get it right-- they don't tell people that this is an issue with them and they are trying to deal with it and unfortunately the patient pays the price; 6) Have a backup plan in case you find it necessary to transfer to another hospital in the unhappy event you are maltreated-- the surgeon discarged my BIL to the Valley Hospital in NJ (hospital records state on his admission cause of problem = malnourishment) because he had trained with the other doc-- you may need to hire an ambulance to transport you; 7) Strengthen yourself and your wife so that she is your guardian angel watching out for you during your hospital stay-- sometime docs like to pass the buck and have others not familiar with your case address your wife's questions; 8) Select a backup hospital specializing in physical rehab in the back of your mind in case you need it-- not all places take cancer patients.

I hope I am not scaring you with my comments. From your other excellent posts I get the sense you like to deal with things "head on" and are actively managing your illness. I offer these remarks as a friend in order to prepare you for those "what if" situations that could impact you. As always, you are in my prayers and am thankful for the info that you have shared with us. You control your spirit and you are doing a darn good job of it so I expect to see good reports from you in the future! Peace.

Pasha:
PCTech is absolutely right. It's best to have "what if" plans in place with the hope you will never need to use them.

My $.02 before surgery.

1) Make sure they keep that cath in for at least a week. I thought the sooner to have it out the better. But follow-up reading of ColoRectal Surgery handbooks from the Med School Bookstore suggest at least a week to allow the bladder complete rest. It's a pain, but mine was in 4 or so days, and I couldn't pee for the life of me when they took it out. I still have damage to the nerves, and must self-cath.

2) Get up and walk around the day after surgery. Walk as much as you can up and down those halls. And use your breathing apparatus they give you in the room to prevent lung fluid build up (atilectisis sp?). Walking will help with that too... taking deep breaths... it will hurt. You shouldn't be on a ventilator unless there is a complication (PCTech, was that the case with BIL? Was/is he a smoker?) You shouldn't require any swallow tests, again unless there was a problem during surgery or with intubation. Most likely not. I've seen many tubed.

3) Use a pillow on your chest and abdomen to cough, sneeze, etc. It helps ease the pain. Cough semi-frequently to keep things moving in your chest--again prevent fluid build up.

4) I know you are going to want to eat/drink right away... be prepared, they won't let you for your own good. Temp ileostomy needs to heal for a few days.

5) Make sure you get adequate pain control. I had an epidural that didn't take right. The anes. wanted to "re-adjust" that thing 5 times. By the 6th time I said forget it, I want it OUT. Be forceful with what you want. I then went on a PCA. Patient Controlled Analgesia. They put morphine or something like in the pump that auto delivers it to your IV. Don't forget if you have a Port in your chest, they can access that too. During the procedure, the anestisiologists prefer to have a larger line open, so they stick you with an IV. But you can use your port on the floor otherwise. Anyway, back to PCA's....You can push the button to get an extra dose now and again. Don't worry, you can push it as much as you need, you won't overdose as it is programmed to only deliver an extra dose every hour or so. I suggest pushing it before getting ready to get up, or move. This is all valid unless you decide to go with the epidural. (mine kept on shifting and I would only be knumb on the right side, in agony on the left. The nurse on the floor told me in her years of experience, PCA's are the way to go for this type of surgery.)

6) Make certain (and I know they will at sloan) that your surgeon plans to take at least 10 surrounding nodes to test for cancer. I believe 8-10 is the minimum (again from my reading!)

Can't think of anything else right now... if I do, I'll post again.

BEST OF LUCK TO YOU! PLEASE come back to the board when you can and let us know of your progress. :)

Warm Regards,
CancerDad :angel:

CancerDad,

I know my BIL smoked at one time and I believe he started late in life in his 20's but for how long I am not certain. I want to say he has not smoked for the past 10 years but his sister suspects he has taken a drag or two recently. I still have not received a good explanation as to why he was on the ventilator for 10 extra days-- he has 3 guardian angels watching over him and 2 of them reported the doctors & nurses are blaming the amount of anethesia he received during his 11 hour operation and the fact big men retain this drug in their system for a much longer period of time. They reported that every time an attempt was made to remove him from the tube, his blood pressure would shoot sky high! There was talk he suffered a stroke or blood clots but subsequent MRI did not show any damage. I truly believe that being on a ventilator for such a long period of time did great harm to him and in the end will cost him 6 extra weeks in the hospital(s).

Peace

Thanks to all of you for your valuable and sincere advice. I know I can only control a number of things, at the end I will have to depend on the hospital system to do their job. Unfortunately, mistakes are made often due to many different reasons, but the patient pays the ultimate price. You try to go to the best place to avoid such incidents, but nothing is full proof.

I will try my best to prepare for the 'ifs' and express my concerns to the surgeon about the scans and other points that you raised, got my little note book going. Thanks again for all your support.

PCTech:
Thanks for the info. Doesn't add up though. :confused: If they took him off the vent and his pressure went sky high, I would think they would correct via antihypertensive agents and supplement with O2 if he had atalectesis (sp?) fluid build up in the lungs. I think there's probably more to the story then they are telling. But who knows?? Sometimes, things go on that we need to have privacy with. I'm glad you respect this. As a survivor, I feel for your BIL. At the same time I understand your curiosity as a loved one (just like my loved ones, too). It is nice to see you gaining different perspectives and respecting his right to privacy, though. I'm just glad he made it out ok. :)

In any event, I sincerely meant it that if he wants to speak with another male who also suffers similar after-effects-- difficulty with urination (maybe he wants some advice on self-cathing (I CAN'T BELIEVE HE WENT 3 DAYS Before they recathed him!! :nono: That alone caused damage to his bladder with hyperextension I'm sure!! ouch!), etc. I also had a hell of a time healing due to pre-op chemo and radiation and post op chemo, etc. If you can get him to try out the www, I would love to talk with him. It has been loads of help for me, and difficult at the same time to find people with similar experiences to talk with.

I think you catch where I'm coming from, and I know you'll do your best to get him online. I commend you for caring so much. :)
Regards,
CancerDad :angel: