Nervous again...

[drw]

Hello, I have been a faithful reader for the last few weeks. I have read a lot of helpful comments and become slightly educated about my situation. Although, I find I am usually in the "one step forward, two steps back" mode. I have a follow up appointment this afternoon with my surgeon to discuss the pathology from my transanal excision, but I found myself wide awake this morning at 2:40 - obsessing. My doctor called me last week after the pathology report came back to say that I have stage 1 rectal cancer and that she wants me to have genetic testing and she is going to send me to an oncologist. She said she got the entire tumor and she had clear margins and that I won't need any chemo or radiation. This is all great, but I'm concerned because I have not had a CT or MRI, which almost all the posts I have read that was a constant. Plus, I am concerned about a swollen salivary gland that has suddenly gone away. So my question is has anyone ever just had an excision and endorectal ultrasound without checking for other areas of cancer? And, does that sound normal that a swollen salivary gland that has been consistently swollen for at least 3 years just disappear after surgery?

Hopefully, I'll have some answers later this afternoon. I just can't stop thinking about it. Thanks to all - have a great day

[weisssoccermom]

Good morning and welcome to our site. I am truly sorry that you had to find our 'club' but hoping that you will find a lot of helpful people here.
As to your questions, no a surgeon cannot tell you, with any comfort, that you are a stage I, II, III or IV without some sort of scans....either an MRI, a CT or a PET. Simply put, the staging is based on three components....TNM.
"T" stands for the tumor depth....how far the tumor extended into the rectal wall
"N" stands for the number of LOCAL nodes were affected
"M" represents any distant metastatic disease (either in a distant organ or lymph nodes)

A person could have a small tumor and have one or more positive nodes. Another person could have a large tumor with no local nodes affected. Still another person could have a small tumor, no nodes but a met in the lung. There's so many different 'combinations' that you can't say definitively that you are/aren't a stage I without some diagnostic imaging tests on the rest of your body.

Like you, I also had an excision, however, I had CT scans done routinely to check for any metastatic disease....both before and after my surgery. I am certain that your oncologist will order a baseline CT scan to ascertain what, if anything, is going on in the rest of your body.

Although your surgeon indicated a stage I, that was ONLY based on the "T" part of the overall staging and shouldn't be taken as a definitive answer. You very well may have had a T1 or a T2 tumor and your surgeon may feel that there is nothing else there, but one 'drawback' of the excision is that no nodes (or very very few) are taken so unless you've had an endorectal ultrasound and a CT scan, there is no way that your surgeon, simply from the excision, can tell whether or not any local nodes are/aren't affected.

Finally, depending on the results of all the tests AND the pathology results, you may be recommended to undergo a course of chemoradiation. Later stage I patients who have excisions are routinely followed up with a course of chemoradiation just to be safe. If, for example, your tumor was a T2 and all the other imaging tests prove negative, the 'standard of care' after an excision for a T2 patient is to have the routine 28 days of chemoradiation. I just don't want you to be surprised if that treatment is recommended. Honestly, a surgeon shouldn't be advising you on whether or not you need/don't need chemo or radiation. That is the call for the oncologist and the radiation oncologist. PLEASE make sure that you keep the appointment with an oncologist and hear what he/she has to say.

Good luck. Please keep us posted.
Jaynee

[drw]

Thank you, Jaynee. I have read many posts from you and that's why I was certain I wasn't finished with my staging. I did have an endorectal ultrasound, right before the excision. This has all been kind of fast, but I feel like I should have had the CT scan before the excision. The doctor didn't give me alot of information, she basically said that if I wake up from my procedure and I had the excision then I did not have cancer and if I wake up and only had the ultrasound, then I had cancer. So, when I woke up, I knew I had the excision because I was sore, the doctor never came in to see me (at least, not that I could wake up and speak to her) and she never spoke to my husband. She did return my call after I was at home that evening, but she was short and just said she would know more after biopsy. She said that although my tumor (polyp) was large, it did not go through the muscle and she got it all and the lymph nodes all were fine (from the ultrasound). I am getting more concerned as the days go on because I feel lilke I'm getting rushed through. Did I make a huge mistake? If I do need chemo and/or radiation, will it not be as effective because I had surgery first? I'm kind of concerned that maybe I didn't have a swollen salivary gland, but maybe it was a lymph node? I never had it tested, my primary just felt it each time and said that was what it was and suck on sour candy. Between my symptoms of my cancer, that I have had for much longer than I care to admit, and this gland that I had for at least 3 years, I am back to being scared.

Thank you again for all of your information, it is very helpful and I appreciate your concern.

[dianetavegia]

The salivary gland or lymph node going away would not have anything to do with rectal cancer. It MIGHT have something to do with all the fluids you had pumped thru you during surgery and recovery. A stone in a salivary gland can break up, come out a little at a time and begin to drain. Some doctors are now breaking them up with something that vibrates like your electric toothbrush and once the stone moves, the swelling goes away. New ones can form, tho.

I would insist on a CT scan. Too many people go from Stage I to Stage IV due to doctors not being vigilant.

[weisssoccermom]

Well, right now you can't do anything more. At least you had the endorectal ultrasound and have the information on the local nodes. By any chance do you know if the surgeon was board certified in colon and rectal surgery?

I am guessing that the oncologist will order a CT scan so please try to put your fears at ease about that. There really is nothing more that you can do about the imaging tests at this stage.....just try to relax about it. Let's assume the onc will order a CT scan in the next week or so.....no harm done. Sure, it would have been nicer to have all the tests done first but the most important thing is to get the test done. Trust that the onc will cover all the bases and order the test. If he/she appears not to be ordering the test, then push for one.

A few things I might suggest. First, get a copy of the pathology report. If the surgeon doesn't give it to you, then have your GP get a copy for you. Secondly, if you have a good relationship with your GP, get him/her involved. Have ALL test results sent to your GP and make sure that you have a copy of each and every test, report, etc. Get yourself a three ring binder, complete with dividers and have a section for each of the various reports/test results. Read the pathology report and make 100% certain that a FULL THICKNESS excision was done.

Take a breath. While this may all seem to be happening very fast, just know that if something was left out....some test wasn't done, etc. the onc can now order one. You should make sure that you have (ideally had) a CEA test as soon as possible. If one was done prior to surgery then that was the optimal time. Hopefully, your onc will make sure that all of your blood work was done and if not, will order those tests as well as making sure a CT is scheduled.

[Mrsrob1000]

I hope you were able to get a copy of the Pathology report which should include what Stage, T and N factor on it. It should also explain what type of tumor it was poorly, mild or well differentiated. Your CEA should have been taken before the surgery, after and should be monitored. CT Scans and PET scans can also be done to verify nothing else is happening. One more thing, they cannot determine if the lymph nodes are cancerous by ultrasound only via the pathology.

[weisssoccermom]

Mrsrob1000 - with an excision, no lymph nodes are taken so the pathology report won't have that information on it. With an excision, the pathology can't give the patient or doctor an accurate staging (actually no pathology alone can without some information from a separate imaging report).....it can only give information with respect to the "T" stage and other information about the tumor itself.

[drw]

Good morning and thanks to all of you for reading and replying. I feel very lucky to get so much expert advise. I saw the doctor and she said it was a full thickness excision. I did get a copy of the pathology report and requested that a copy be sent to my primary. The report states that I had a "moderately-differentiated adenocarcinoma arising with a tubulovillous adenoma". It's a G2 and pT1. I will call the oncologist today and schedule an appointment and hopefully have a scan set up.

Also, my primary doctor ordered blood work before my surgery, my CEA was .9. Everything was normal, except for my iron which is always low. So, I'm feeling better after my visit and reading all of your comments. I know I won't have full answers until I get a scan, but the surgeon said it was a very early stage 1 and she got it all. She said to follow up with the oncologist and to set another colonoscopy in 6 months. I will be very cautious from now on and follow through on all appointments. This was a huge eye-opener for me... seriously terrifying.

Again, thanks and best wishes to all.

[alphagam]

My story is a bit different from most. Three+ years ago! during a screening colonoscopy, a 5cm polypoid mass was found in my rectum. Small biopsies were taken. Those biopsies showed cancer in situ and dysplasia. Had rectal ultrasound. Lymph nodes seen were unremarkable, but Dr said I had a T3 tumor. PET showed high uptake at the tumor site. First opinion, chemo/rad, APR surgery, more chemo. My husband and I decided to get another opinion. That team stated that they didn't like the ultrasound as it was an unreliable test. They wanted more definite pathology. TEM surgery was scheduled. Colorectal surgeon found the tumor had only attached to the lining, muscle was clear removed tumor. Pathology was Stage 0, Cancer in situ. Follow up with regular colonoscopies and PET scans. Still clear today.

Kathy

[drw]

Kathy, that is wonderful. I am happy that you got your second opinion and all is well. Thank you for sharing your story

[drw]

Good morning. I thought that I was done with worrying because my cancer was so early, but I'm still waiting to see if it's gone. I met with my oncologist and he ordered a CT scan and said my plan was just to watch and have a CT every year for three years and a colonoscopy in 6 months. After my CT, my doctor called and said that a lymph node was slightly enlarged in the area of my surgery. He said it was probably trauma and no need to worry, but he wanted a PET scan to be sure. I just met with him yesterday to go over my PET and get the all clear. Unfortunately, I had 2 lymph nodes light up in that area. I am praying that it is because of the surgery as I am still having blood and still healing from the TAE. I have an appointment with the surgeon next Friday to discuss more surgery and I am very nervous. Although this surgeon is very good and very nice, she does not discuss anything with me. I am the kind of person that needs to hear what you are saying and I need a few minutes to process it and then I need to hear it again so I can ask questions, but she's already out the door. My husband is going to go with me to her appointment so I can have an extra set of ears, but he's worse than I am because he's completely freaked out by this whole situation. I don't think the surgeon is board certified... I checked the link that someone posted earlier and she didn't come up, but a newspaper article I found on the internet said she was, and all of my doctors like her, including my primary. Does anybody know what kind of surgery I might have if they are going in for lymph nodes in the rectum? I know I will have the answer next week, but I'm so nervous. I was told the TAE was no big deal, just a little worse than the colonoscopy - NOT! It's been 6 weeks and it took me 5 weeks to be able to sit on the floor comfortably and play with my grandson. Both the surgeon and the oncologist were adamant that surgery was a must... wouldn't chemo take care of any and all cancer cells lingering? I was told that even though my cancer is a very early stage 1 (hopefully) that there is a 10 percent chance of spread to the lymph nodes and that's why the want to go remove them and biopsy before they start any chemo. Sigh... I don't know... I apologize for the rambling. I'm just a little on edge that my very lucky stage 1 could be stage 3 just like that. Anyway, thank you again to everyone and good luck to all.