Second Opinion

So you always hear people tell you to get a second opinion before you do anything drastic.  We talk a lot of talk, but when time and emotions get strained that doesn't always happen.  With Tommy, we just didn't have the time to get a second opinion.  Luckily we had the best doctors in our area to perform his procedure and save his life.  I know that the cancer in my body needs to be dealt with swiftly but on Thursday night I told my doctor that I wanted a second opinion.  I just am not ready for such a drastic surgery that would require a permanent colostomy and a permanent lifestyle change.  My doctor seemed a bit hesitant at first, her main concern is time.  She stated that the longer it takes to get a second opinion the longer it will take to start treatment and thus giving the cancer a chance to spread.  However, she also said that she would have a referral put in on Friday and recommended a place in Fairfax that she was familiar with.  She said don't worry about Tricare for the moment, make the appointment and we'll figure out the insurance side later.  She also said she would call the place in Fairfax and make sure that they have all the information necessary to formulate their opinion, MRIs, CT results, etc.

Next morning, before I even had the chance to wipe the sleep out of my eyes, Dr. H calls. She has already talked to Dr. S in Fairfax.  Not only can he squeeze me in today for a consult, but he can also do a rectal ultrasound there (instead of waiting to do it on Tuesday in the military hospital).  I should mention here that the place in Fairfax is called Fairfax Colon and Rectal Surgeries; this is their specialty they deal with cases like mine all the time.  So I gave them a call and scheduled the appointment.  Couple hours later I'm in the office for my second opinion!  I've never seen military medicine move so quickly!

When I arrived at the clinic, first thing I had to do was sign a waiver for my insurance.  Since my referral for care wasn't quite thru the system yet, the waiver pretty much said if my insurance doesn't approve the visit than I will have to pay for it myself out of pocket.  Whatever, I would like my insurance to cover this visit, but if they don't well we will figure it out.  After the paperwork was done I went in to see the doctor.  He talked to me a bit and said that he had talked to Dr H about my case.  He said the the big determining factors for treatment was a. the location of the tumor and b. the stage (i.e. how deep it is and if it has spread).  After that little chat, you can imagine there was yet another digital exam.  I don't think I can count how many times I have one of those this week.  Way to many fingers up my butt this week!  Next they did the ultrasound.  Sorry folks no sedation.  I will say that compared to the scope Dr. H used the day before, which seriously was the size of a baseball bat, the ultrasound was a walk in the park.

So on to the important stuff, the doctors findings.  Dr. S showed me the ultra sound photos, he explained that my tumor was fairly deep and actually butted up to vaginal wall.  That isn't great, because if they did surgery now, he said it would be likely they would have to take out part of the vaginal wall as well.  (WTF!  Sorry, but really?  We are going to have to mess with that too?)  He also showed me the two enlarged lymph nodes that were also suspect on the MRI.  The nodes are still indeterminate, but to be honest with you I don't think they will be able to say my lymph nodes positive for cancer until they take them out and test them.

So what does all this mean?  Here is his recommended plan of action:

1.  Chemo-Radiation for 6 weeks.  There was no question in his mind about this one.  All the tests show that in cases like mine, chemo-radation would save my life and give me the best possible chance of beating this thing once and for all.
2.  4-6 weeks recovery.  During that time I would see the surgeons again, either Dr. H or himself to determine if they would have to do an abdominal perineal resection and give me a permanent colostomy or if they would be able to do a low anterior resection and save my ass (or in this case my asshole).  He did tell me there was a chance that he would be able to stitch me back together, but it will depend on how the tumor reacts to the radiation.  He also warned me that nothing will be certain until he is actually performing the surgery.  He could get in there and find that it just isn't possible to save my hind end.
3.  Next would be the surgery itself and recovery.  Recovery time is about 4-6 weeks.  Depending on the type of the surgery they do I will either have a temporary or permanent ostomy.
4.  After I recover from surgery I will need full dose chemotherapy for 4- 6 months!  This had not been mentioned before (or at least I don't remember it being mentioned) so that news was a bit shocking.  At the end of chemo, if I had a temporary ostomy, than it will be removed at that time.

Full length of treatment: 9-12 months

Some other things he mentioned.  Dr. S said that with rectal cancer you have to attack it aggressively, if you don't it will most likely have a local recurrence that will kill you.  He said with radiation therapy I could drop my chances of a recurrence from 30-50% down to about 3%.  I asked about the chemo after surgery and he said, yes that is absolutely imperative in order to treat the rest of my body.  If I make it 5 years after treatment without a cancer recurrence that I will have officially beaten this.

After our visit he talked to Dr H and discussed his findings and his recommendations for treatment.  She than called me just to let me know she was aware of his recommendations.  The ultrasound findings pretty much confirmed her suspicions about the lymph nodes and her recommendations for chemo-radation.  On Tuesday she will be talking to my oncologists to go over my case again.  She said to be "on call" because she will be pulling me in at some point to have another consult and if possible she will arrange for general surgery to have my catheter put in place for chemo.  She also said that she would continue to send me out for second opinions if necessary to get the answers we need (chemo-radation upfront gives us a little more time for this) and that when it does come time for surgery that if she was not comfortable performing a particular procedure that she would send me back to Dr S to do the surgery.  All sounded great to me....ok well maybe not "great" but it was nice to know that I had such an aggressive advocate in my corner.

So until next week I am going to spend my time in denial.  It is Christmas after all and I want it to be a joyful holiday.  On Monday we will return to the issue of my treatment, but until than Merry Christmas everyone.