seeking advice - meeting surgeon

[MY]

An associate of mine was just diagnosed today with cc (I don't know specifics) but she has a meeting with the surgeon next week. Does anyone have advice on some questions they should be prepared with to ask of the surgeon? The family will want to be proactive in this diagnosis.

I recommended the family check out this website but since it only happened today, I'm not sure they will yet. Any information is appreciated.

[RK]

When I was first diagnosed with rectal cancer on 2-2 of this year the doctor told my wife and I to go find a surgeon. Well I didn't just find a surgeon I found a team and I jumped on a full service cancer center to get the ball rolling not some local surgeon.

In my case I researched local cancer centers (LA) and decided after exhausting everything I could find, that the City of Hope in Duarte fit my needs.

I immediately had a surgeon, an oncologist and a radiation doctor assigned to my case. I was examined my each and given a plan of attack immediately (Now remember I was diagnosed on the 2nd of Feb, I had my tumor staged by ultrasound by the 9th, I was at City of Hope on the 12th and started my first radiation and Chemo round on the 19th.

I was so happy I decided to o for the whole team approach as everyone was in on it from the start. They all talk to each other, they evaluate my progress and each and everyone of them cares.

I believe this would be true if you went to John Hopkins, Sloan Kettering, UCLA, Cedars or any of the primary cancer hospitals...they know cancer and they work to get rid of it!

Don't piece your care together by finding one doctor and then another and then another....find a team and get involved. I am going on the surgery now and I plan a 2nd and 3rd opinion on the procedure before I commit, so don't think once you get this team together there isn't room for more opinions. There are and you should remember...It is your life, you need to get involved and most importantly you need to ask questions and do you own research.

Good Luck!


Rick Kulis
Stage 3 T1 rectal cancer.

[sean]

This forum is a great resource & I hope your friend uses it.

Before meeting the surgeon I would make sure they are one of the best in the area for the surgery that is to be done and that they do a lot of them. I would check the state licensing board website if there is one (in VA you get education history, awards or teaching, and malpractice claims). Another good source of info about surgeons is doctors and nurses. A good surgeon can make a real difference. I changed mine based on what I found at the state certification site & am very glad I did.

I would ask for a pre-surgery CEA blood test if one has not been done.

When your friend is in the hospital ask them (or their spouse) if they want visitors before you go or call. I was drugged up and tired and sore after my surgery. I appreciated the fact that friends were concerned & took the time to visit, but I'd really have rather been left alone. I unplugged the phone to get no calls. The nicest thing was to just sit and quietly watch tv holding my wife's hand. Next nicest was pushing the button for dilaudid to take the pain away.

If your friend ends up being Stage II or III they will have some post-surgery decisions to make about chemotherapy and maybe radiation. Stage II cc decisions can be frustrating because oncologists don't agree what to do. In general, statistics aren't helpful because we are each individuals, but when deciding about chemo they do have a place. Here is the best statistical resource I found for adjuvant chemo info:

http://www.mayoclinic.com/calcs/colon/index-ccacalc.cfm

I hope your friend chooses their oncologist with care and talks to more than one before deciding. Being comfortable with your oncologist & their style is very important. Oncologists are all over the map even in the same practice. Some aggressive, some not, some are more open to patient input & decision making than others. I would start looking for oncologists now so that appointments can be made as soon as practical after surgery. A good oncologist can be booked up far in advance & if chemo ends up being needed it is best to start it sooner than later. It is a very stressful time between surgery & meeting your oncologist to get some answers. The shorter the wait the better.

Cancer sucks. Hope your friend does well with the surgery & ends up with a low staging.

[MzApe]

When I was diagnosed I found out that my hospital has what is called a tumor board. This consists of a panel of surgeons, specialists and oncologists who present special cases each week. If your case gets presented, a dubious honor, you are getting the specialized opinions of a team of doctors. I've found this to be like getting a 2nd, 3rd, and 4th opinion all at once. My oncologist has told me that because my surgeon presented my case he decided to call me into his office on his day off and "see" me, just to decide if I was as otherwise healthy as my surgeon presented. Because of this, my onc decide to start chemo before having surgery - a bit unothodox, but the rest of the tumor board agreed that was the best plan. So, I've been presented twice and have to say that I love the fact that my onc is on the cutting edge and admits he doesn't know it all. Time Magazine this week had an article about people living with cancer and the article mentioned that Tumor boards are pretty common. This really works well into the team approach.

I also have to mention that I worked in Pharmacy for 13 years and I can tell you that Pharmacists know who the good docs are and who the quacks are. If you know the hospital you are going to have surgery in, go to the hospital pharmacy and ask for a consultation with the pharmacist. You can ask him/her about a certain surgeon or better yet, "who would be your first preference if you were having surgery?" "Who would you stay away from?" It's confidential, and you'll usually get a very accurate answer. The plague doesn't travel as fast as hospital gossip, so if a doctor isn't great, the staff usually knows.

Sorry for being long winded, but make this decision carefully - it's important.