hopie wrote:We haven't talked before, dear Lydia, but this thread helped me a lot when I first found out about mom's disease. Just wanted to check in and say I hope all is well!
weisssoccermom wrote:First of all, welcome to our site. I am sorry you had to find us but hopefully you'll find a wealth of information here that can help you.
Now, you didn't say where exactly your mass was located so it is difficult to give you some specific information. The reason is simple. IF you have a mass in the rectum or a mass that is located in an area that is classified as 'rectal cancer' your treatment will be different and there will be more testing before you begin any treatment. I truly do understand the whole 'I want it out NOW' line of thinking....I believe we all felt that way when we were diagnosed. Heck, when I woke up from my first colonoscopy that diagnosed my tumor, I wanted the surgeon to just 'come on down' and operate then and there. I figured that I had had the prep and was ready to GO. Fortunately, that didn't happen and I am now glad that it didn't. I'm 11 years out and I shudder when I think of how naive I was back then. I can't imagine what might have happened had my way (after waking up) had been what my surgeon had done.
IF you have a GP that you have a good relationship with, see him/her and ask him/her to order a CEA test for you. It is a simple blood test that tests for a protein that tumors often give off. However, please note that not all tumors express this protein so seeing a 'normal' value really means nothing. Over the years, there have been many members on this board that have had big or multiple tumors who have NORMAL CEA levels and then there are others with even just one small tumor who have elevated levels. This test is good for the future....to indicate if you may be having a recurrence. Before ANY treatment (surgery, chemo, radiation, etc.) you should have this test done to give you a baseline number. I would also suggest that if you have a GP that you trust/like, make sure that he/she is cc'd on each and every report. Sometimes, facilities don't want to give the patient a copy of the test...but if your GP is copied on every test/procedure, you can always get the copy from him/her.
My next piece of advice is to get to the center that did your colonoscopy and get a copy of the report for your scope. Next get a copy of the pathology report. Get a three ring binder...complete with dividers and start a section for pathology reports, CT reports, colonoscopy reports and blood work. You will be having more of these tests (and others) from now on. Don't rely on the doctor to give you the results....GET A HARD COPY OF EVERYTHING! Don't forget your CT report as well and whenever you get blood work done, get copies of those tests as well. From now on, you will likely be having blood drawn on a regular basis.....CBC, CHEM panels, CEA and other tests.
Now, if you do have rectal cancer, be prepared for more tests. You will likely get an endorectal ultrasound (also called a transrectal ultrasound) to help determine the depth of the tumor into the rectal wall and to better see the local lymph nodes around the rectum. Again, IF you have rectal cancer, you will likely have chemoradiation and that takes planning/mapping, etc. before treatment begins. Be prepared that if you have rectal cancer, all of these tests and planning could take another 2-4 weeks to accomplish before beginning any treatment. I know that it isn't easy to wait when you just want the dang thing OUT....but it is in your best interest to truly know what you are dealing with before starting any treatment.
If you have colon cancer, your doctor will still likely do blood work (make sure to get that baseline CEA regardless of colon or rectal cancer) before scheduling any surgery. Unless there is an imminent life threatening emergency, surgery isn't going to happen tomorrow...even with colon cancer. It may take another week....it may take another two....it's hard to say. Your doctors want to know that everything is planned well before they just go in and cut out the tumor.
As for whether or not you are going to need chemo....no one can tell you that until you have more testing (rectal cancer) or surgery (colon cancer). GENERALLY, those stage II and above generally do some form of chemo ....so just be prepared. I know its scary to hear that....its something that none of us want to hear but.....you have to be prepared for the likelihood that yes, chemo is a good probability for most cancer patients. One thing to remember.....not all chemos are the same. You've likely read stories or seen those made for TV movies about people with breast cancer and yes, the chemo for that disease tends to be harsher than the chemos for colorectal cancer. Don't fret about something now that you have no control over.
Right now.....take a breath, relax and take this one step at a time.
teacher2017 wrote:Update- CEA is 1.1!!! Scan is clear!!!!! Woohoo!
hopie wrote:AMAZING! I'm really happy for you!! Let the count down for "de-portation" begin!
Omg! When is that???? I want it out! Oh to feel completely normal-it May never happen....but to have the port out for a long time would be great! Stage 4 makes it very iffy.
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