AM I A WORRY WART OR WHAT

don09

I'm sure by now everyone on this forum must be sick of me, I think for the last four days I have posted either a question or concern regarding my treatments.  I am starting treatments this Monday, and having extra anxiety over it, I was initially diagnosed in September, the only scan I had was a pet-scan on the 28th of Sept. which revealed lympnode invasion, not only do I have a tumor in the anus, but also in my groin.  I don't think I would benefit from treatments if it has spread to other areas such as liver or lungs, since the radiation is pelvic region.  I have not had any additional scans prior the pet in Sept. I would of thought that would of been the standard protocol prior to commensing with treatments.  I would like to know if any of you had a scan right before you started your treatments to check for any other involvment.  Am grateful for any and all input.

eihtak

don09.....

You are not any more of a "worry wart" than any of us were or are.....you are also human! This cancer is still considered rare, (though I begin to question that based on the amount of recent new members) but the nature of this cancer still leaves one feeling alone and anxious......hope we can help ease some of your concerns.

I probably would have posted here several times a day prior to treatment but was unaware of this forum at the time, so.....NO we are not sick of you or your concerns, you just keep on posting here!

I was initially scanned just as you prior to treatment and mine also revealed pelvic lymph node involvement. Because of the location and size of my anal tumor I needed surgery to re-route my colon and create an ostomy, so by the time I was ready for chemo and radiation more than a month had passed since being diagnosed. The radiation will target the anal tumor as well as the pelvic lymph node(s) and the chemo will back that up throughout your body, along with the intention of killing any rouge cells before they grow and multiply elsewhere. I did not have another scan right before starting and believe that it sounds like your treatment plan is just as it should be.

I would love to say, just relax but I've been where you are and know better! There are some things in life that give us no other option than to just accept it and trust that we are in the most capable hands....whatever that means for you. Know that we are all here for you and will be sending out lots of positive vibes on Monday. Usually, from a physical outlook, the first day of treatment is almost uneventful as you go home feeling pretty much the same as when you went in, but on an emotional level, I at least felt a sense of relief, like now I was actively involved in fixing this thing.....I wish the same for you!

Try to busy your mind with a book, good movie, fresh air, food, or whatever it is that will give you some moments to NOT think about this tomorrow. Stay in touch......

katheryn

mp327

don09

I do not think your question is unreasonable at all, so you're not being a "worry wart."  Since we've all walked this path, we understand your concerns, questions and anxiety.  Please know that you can come here any time to check in with us, ask questions, etc.

I had my initial staging PET scan prior to treatment and that was it for scans before undergoing chemo/radiation.  IMO, your doctors are right on target with your treatment plan.  They know from that PET scan exactly what they are going after.  As Katheryn has said, the chemo will go after any rogue cells that may have found there way out of your pelvic region, as chemo is a systemic treatment.  The radiation will target the entire pelvic region at the beginning of your treatment, further decreasing the chances that any rogue cells will travel to other parts of your body and wreck havoc on other organs.  You will receive a certain number of radiation treatments that will cover the pelvic region (think of casting a broad net).  Once you are to a certain point in your treatment, your radiation will be coned down, meaning the area of treatment will be reduced and more focused on just the areas that contain cancer cells.  My last 5 treatments were directed right at my tumor like a laser beam, after my treatment area had been previously reduced one time from the beginning.  I hope this makes sense.  If you look at the NCCN guidelines (I think I previously gave you that website), you'll see this is explained in the treatment secion of that document.

I wish you all the best tomorrow.  As Katheryn stated, Day 1 is usually pretty uneventful, but the not-knowing part can cause some anxiety.  You'll get through it just fine.  Make sure you have your nausea meds at hand in case you experience a little queasiness.  I found hard candy to be helpful in quelling nausea too.  You will get through this.  Meanwhile, you have an entire day today to get some fresh air, good food, catch a movie or watch some football!  I will be thinking of you tomorrow.

Martha

nonichol

Don

I had involvment of one lymph node and tumor growing into another organ. Late stage 3. Treatment is the same. This is an excellent forum to find answers as people who have not dealt with this can't understand even if they would like to. It's a great place to not feel alone. Best wishes.

Ouch_Ouch_Ouch

Treated for stage 3B.

don09 - You must have finished a few weeks ago, now.

Like nonichol, I was also stage 3A and possibly 3B - mildly suspicious inquinal nodes but they weren't biopsied. The radiation oncologist treated me as though I were definitely 3B. My last radiation treatment was 9 July 2014 and so far, no sign of recurrence. And I still worry! I do have side effects from the radiation, though - scarring and a fissure.