1st colonoscopy -chemo/radiation or surgery?

[sirash]

I have been feeling quite awful since my diagnosis - but have felt better since i found this forum. Its amazing how how supportive and helpful everyone is - really helped me !
Now I have to make a decision. I was diagnosed with cancer in the recto sigmoid area about a month ago. THE ERUS doc said it seems to have gone thru the muscle wall,and maybe one node is involved - trying to be conservative so T3N1M0..
The crc surgeon at UCSF has said the tumor is small enough that they can do surgery right away - no radiation and then maybe chemo later. She did go in with a probe, but not sure if it measured the depth. Think I should have asked more questions.
Stanford tumor board said chemoradiation before, then surgery and then chemo again. They looked at all the results, but no otehr screening - they said they dont recommend surgery without pretreatment becuase of the T3N1M0 staging.
The tricky part is that the tumor is located at the lower end of sigmoid area - top end of rectum and since the two areas are treated so differently, we could go either way. Both UCSF and Stanford said it is higher than previously thought and rate of recurrence there is lower.
I am a woman in my late 40s, but my kids are young because I had them late. And I tend to worry - i have to decide on something that will give me peace of mind..
I would love to avoid radiation and the long term effects esp since it will affect QOL for my kids, but dont want to worry about recurrence.
So I would really appreciate any thoughts/experiences. Thank you so much!!

[Valorie]

Sirash- welcome to this forum. As you've seen - there are a lot of wonderful people on this board that are giving, caring, and at times, really humorous. I cannot speak to your dx as mine was higher up on the sigmoid. There are several here with a similar dx as yours and am sure will be along soon to give you some advise based on their own experiences. I will tell you that I know you may be frightened about your diagnosis, but try to breath and take each step as it comes. We are here for you when you need us.

Valorie

[O Stoma Mia]

I sent you a PM

[meatie]

@sirash
How big is the tumor? How far from the anal verge is the tumor? Was a CT scan of the pelvis, abdomen, and lungs done?

[sirash]

THank you all so much for helping me !! Cant tell you how good it feels ! I hope I can be of help some day when I know more about all this.
ERUS doc said my tumor is about 8mm thick , I think he meant wide. It is circumferential and he thinks it has gone thru the muscle wall. He thinks but not sure, that one node maybe be involved( it is about 4 mm) .
Cant remmerb how high theysaid it was -remember hearing stanford surgeon saying 7 cm from something .
UCSF said it was mostly in the shadow? ( is this the area sort of in between sigmoid and rectal area?) so they would treat as colon cancer . they feel comfortable suggesting that. My regular onc said it is not i an area that my sphincter muscle(sp?) would not be affected.
Thank you again,
A

[weisssoccermom]

Sirash,
You need to get a copy of the colonoscopy and ERUS report. It is your right and YOU need to have that in front of you (get a 3 ring notebook, complete with dividers to keep all this type of information as well as future information in...there will be a lot more reports in the future) to know what exactly the report said. IF the report said 7 cm in from the anal verge, then there is no way that that should be considered colon cancer....however, that is IF that's what the report/doctor said.

You should know that chemoradiation has been proven by many many studies to reduce the rate of LOCAL recurrence....by about half and generally, it is done prior to any surgery for rectal cancer. You should also be aware that when radiation is given AFTER surgery (again for rectal cancer) the studies show that while very effective, it is not quite as effective as having it prior to surgery. In addition, patients who have adjuvant chemoradiation (after surgery) tend to have more bowel issues and strictures than patients who have neoadjuvant (prior to surgery) chemoradiation. Take the time to make sure you have all the facts and know exactly what is what.

BTW - the 8mm is probably how deeply the tumor invades the rectal wall.....not how wide it is. The one node that is 4mm is iffy......we all have nodes in that area that are about that size BUT....they have to be err on the side of caution. Before you make any decision, you should verify the credentials of the surgeons that you have seen. ALL surgeons are board certified in GENERAL SURGERY but most on this site, including myself, would recommend that you see a surgeon board certified not only in general surgery but also in COLON AND RECTAL surgery. Below is a link that will be able to give you that info.

http://www.abcrs.org/verify-a-physician-2/

I understand you want to avoid radiation but I would caution you to think VERY carefully about that decision. A local recurrence is NOT something you want to mess around with....think about all the structures in the pelvis.....bladder, vagina, ovary, etc.......and ask yourself if you would want to take the chance that a local recurrence could occur?? Just something to think about.

[raym]

I was in a similar situation an initial diagnosis. The tumor board discussed how to treat me since it was on the edge of colon versus rectal cancer. They had concerns that the sigmoid area was not fixed enough for effective radiation. At the time I was relieved as the treatment scared me. Now looking back I sort of wish they had treated with radiation if they could as the cancer reoccurred in the same area less than a year later (perhaps never fully removed) as well as peritoneal spread..which could have been from surgery or just there but too low of a level to detect at the time. But I also can't argue with the review of the tumor due to the worry of not being able to effectively target the cancerous area. So I guess I really don't have an answer, but your are not alone in this dilema.

[PGLGreg]

My tumor was also ambiguous as between rectal and colon cancer, before surgery. The colonoscopist's estimate was 17 cm above the anal verge, and I did not have radiation before surgery. However, surgery showed that the tumor was 5 cm above the anal verge, thus it was clearly rectal. So I had radiation after surgery, instead of before. (My surgeon was not at all surprised that the first estimate of the tumor's location was pretty far off -- he warned me before surgery that it might turn out that way.)

[sirash]

Thank you all for the many helpful messages and info links.
I am leaning toward the chemo/radiation before surgery, just worried because Ive heard a lot about long term effects of radiation and also because I am a prime candidate for osteoprosis as it is and this is going to add to it. Guess thats not as bad as cancer though.
Thanks for the tips on being organized - I really need those - yes I need to ask for more of my reports.
Thank you all , so much !
I log out often -worry that my older one will accidentally see something on my screen and be scared.
Goodnight and God Bless!
A