I have until next week to decide what to do . . . yes or no

[georgemma]

Hello, all -- I would be so grateful for any input from anyone reading. I simply could not come up with the right medical oncologist who could see me for a second opinion before time runs out and I have to give my final decision. I did make an appointment with someone at the University of Chicago, and perhaps he will have a cancelation within the next few days. As it is, the surgoen and one of his partners looked at my path slides together, then the medical and radiation oncologists (who work together in the same practice) concurred. I am T1 NX MO, meaning that the lymph node involvement is unknown. Because of the location of my rectal tumor, the only way to test the nodes is to perform another resection, with a colostomy. There may be no node involvement, and radiation and Xeloda might be way beyond what I need. If there is even one node involved, then perhaps the adjuvant treatment will have been the right decision. Okay, so I have presented you all the case . . . what is your tumor board decision? Thank you!

[Frank G]

Have they done a Pet Scan? That can show the Lymp involvement.

[georgemma]

Hi, Frank, yes I did have an MRI, PET and CT scans, and they were all negative. They were all taken after the Transanal Endoscopic Microsurgery to remove a tumor in the lower 1/3 of the rectum.

[wdt]

I am not clear on several things... Aren't you currently getting radiation? Are they giving you the Xeloda now, or are they talking about adding it to the treatment plan? The xeloda is given as a "radiation sensitizer", so that it why they give them together. It helps the radiation to work better.

The choice has to be yours with regard to proceeding with more surgery vs radiaion with surveillance (or so-called watchful waiting).

What are your current docs telling you -- or should I say what are they "recommending" you do at this point?

What kind of specialist are you trying to get in to see at Chicago? A surgeon or an oncologist?

You have to weigh your options, research the information to the best of your ability, and then at some point just go with it. ALL of us here could probably second guess at least some of the decisions we have made for ourselves and treatments. Sometimes there just aren't any "right" answers.

[PGLGreg]

I'd make sure your docs know you are willing to put up with the inconvenience and side-effects of the adjuvant therapy, and follow their recommendation, if they have one. If they just don't have any advice, then I vote to go ahead and do the adjuvant therapy.

[georgemma]

Hi, wdt: I met with the oncologists, but I haven't proceeded with anything yet. So far, the surgeon, his partner, and both oncologists (medical and radiation) said that it was my choice between LAR with colostomy (because or the location of the tumor) or radiation/chemo/surveillance. The surgeon originally suggested that I see another surgeon for a second opinion, while the medical oncologist pushed for me to meet someone in his field. The radiation oncologist was the only one who stated that radiation/chemo were probably more than I needed but nothing/surveillance wasn't enough. All have agreed that I fall into that gray area where nothing is emphatically proscribed.

I am sorry if I have offended anyone with this questioning, because it is relatively minor compared with what so many of you have been faced with.

[wdt]

I don't think you should be appologetic -- these are HUGE decisions about your health you are facing. Everyone on this board has had to make life altering decisions and no matter what the circumstances, they are all difficult choices to make.

You are in a a gray area, and that is a tough situation. They have this similar type of problem with early stage breast cancer...whether to treat or not. No one really knows for sure, I don't think. The experts are reluctant to "over treat" and are trying to study that in clinical trials.

Rectal cancer is notorious for recurring at the site where it originated. Even with a LAR there is a significant risk of recurrence. So, unfortunatley, there are no guarantees regardless of the path you ultimately decide on. Trust your instincts and question your doctors about how frequently they intend to follow you and scan you to look for a recurrence or spread if you chose surveillance. If you chose the watchful waiting, be proactive about getting your scans and scopes. Keep them on their toes! Don't leave their office until you are satisfied they answered all your questions.

I feel like the answer to your question will reveal itself to you. You will know when you feel comfortable with it. If you are a person of faith, ask God to give you direction and reveal the path you should take.

[bud]

I don't understand..it is my understanding that you have an anal tumor, that is too close for sphinctor saving procedures, therefore removal of a portion of the sigmoid colon and colostomy is a given..unless you choose to leave the tumor in there for a whie and watch and wait. If that's the only tumor you have, I would want it out by the most invasive procedures available, damned the clostomy.
am I missing something here? Can you do nothing w/o risk?

[PGLGreg]

I'm perhaps confused about the situation, Bud. Georgemma spoke of "another resection" to diagnose nodes and "adjuvant therapy", so I was thinking she has had the tumor removed and is now debating whether to have adjuvant treatment or just get periodic tests.

[Guest]

Have you had an ultrasound? My CT/PET scan showed no lymph node involvment (that scan is not sensitive enough) but during my ultrasound they did fine needle aspiration on my lymph nodes and found that three were cancerous so I have stage III rectal cancer. Before that they thought it was stage I. Do get an ultrasound. I could have done the transanal sugery where they just cut around the tumor but now I need a low anterieror resection with sphincter sparing technique. Can your surgeon spare your sphincter? The surgeon at the first hospital I went to was not capable of doing this but I got a surgeon that is really good at that procedure. Maybe you should look for a new surgeon as well. My tumor is pretty low as well but does not involve the sphincter and I get to keep mine- no bag. The ultrasound is really important. Becuase of the lymph node involvement I am on radiation and 5 FU.

shel28

[georgemma]

Thanks for all your input. The answer has still not come to me, so I am going ahead with the consultation at the University of Chicago. This reminds me of my father, who many years ago had two different cardiologists. One insisted that he was not a candidate for a risky surgery, while the other advocated having it. He sought out a third opinion. That specialist said that my father was playing 21; did he want to stop at 14 or continue?