Rectal Cancer & TME
My father was dx'd with rectal cancer in Sept. 06. I have gotten a lot of great information from this site in the months since his diagnosis. I am now hoping that I can get feedback from other members who have received treatment similar to my father's.
I am overwhelmed by the complexity of everything. Forgive me for giving only a limited amount of details in regards to my father's condition and treatment. After 6 weeks of chemo and radiation that started on 10/19/06, my father had laparoscopic TME surgery exactly a week ago (on 1/16/07). He has a temporary ileostomy. He is anticipating a reconnection surgery in 2-3 months. I have so many questions and I would be grateful to get a response to any of my questions.
1) My father is 75 yrs old. We were told by the surgeon that it was not that unusual for someone my father's age to have this surgery, especially since he was in otherwise good health. Now that we have entered the recovery phase, I question the doctor's judgment. His recovery has been miserable and I am certain that a lot of this has to do with his age. Has anyone been through this surgery at this age? Or know of someone who has been through the surgery at this age?
2) The pathology report came back with no traces of any cancer. It appears that the chemo and radiation had completely killed the cancer. I have been told that this is rather rare. It's also rather surprising since we had been told by another surgeon that my father may have a Stage 2 or 3 tumor. Has anyone experienced a similar outcome? This outcome should make us rather happy. It's offset by the recognition that my father didn't even need to have this surgery. This is made even more frustrating by his difficult and painful recovery. It has also been hard for my sister and I since we had pressured him into having the surgery in the first place. My father either didn't want to have any surgery, at all or he was looking into an excision-type procedure. Is anyone familiar with excision?
3) We were prepared for a surgery that would take 3 to 4 hours. It ended up taking 6 hours. The delay was explained to us in a very technical way that didn't make a whole lot of sense. Has anyone experienced a similarly long surgery?
4) As a result of the surgery (and the length of the surgery), one of my father's two vocal chord became paralyzed. We were told that this was not unusual and his vocal chord would eventually recover on its own. Has anyone experienced this?
5) My father's bowel has still not started functioning on its own. As a result, he still cannot take liquids or solids. His stomach is also filling with liquid and gas and causing incredibly painful gas pains. Two times, they had to insert an NG tube in order to drain his bloated stomache. This has been rather uncomfortable for him and is further irritating his vocal chord. We are continuing to be told that his bowel needs to "wake up" from the trauma of surgery and there is nothing he can do to speed this process up other than walking. They have taken an X-Ray to rule out the possibility of a blockage. Now that we are on day 8 of a hospitalization that wasn't supposed to last more than 7 days, we are starting to lose hope. Has anyone else experienced a similar delay in bowel function?
6) Has anyone else felt that the surgeon did not do a good job of preparing the patient and family for the trauma and recovery from surgery? Was this our responsibility to make sure we ask the right questions? I would hate to suggest that the surgeon exploited my father's condition by viewing him as a paying customer.
7) Is anyone familiar with the recovery from open-surgery and how it may compare to the recovery from laparoscopic surgery? Choosing between the two procedures was difficult for us. We specifically chose laparoscopic surgery because we had read that the recovery was shorter and easier. It has been anything but easy and short. Has anyone else experienced similar complications from laparoscopic surgery? I have been told that laparoscopic surgery takes longer than open surgery. I would think that being under anesthesia for more time would cause additional complications. That's what appears to have happened in my father's case. I'm just wondering how unusual this is.
I am sure I will have more questions as my father's recovery continues, but that is all for now. Thanks to everyone for all of the great information that has been posted to this message board.
Re: Rectal Cancer & TME
All of your father's issues are very normal. If it's only a week since surgery you really can't expect too much. It took me at least a month before I had any energy - and I mean it was even difficult to stand for a shower! I was in very good health and 51 years old. Your dad will probably have a longer recovery due to the treatments he had before surgery. I was in hospital for 7 days when I had my temporary loop ileo done (I now have a colostomy) but they let me out too soon as I was back in a day for 5 more days after a blockage. I was put on solid food too soon.
My surgery took 5 hours and was an open surgery. I lost 20 lbs. in 2 weeks and had no energy as anything I ate went through so quickly I wasn't absorbing any nutrients. It can take the body awhile to adjust to not having the colon hooked up.
The vocal cord issue is common as well as the tube that is in the throat for breathing during surgery can cause irritation.
Please don't rush liquids or food. It does take awhile for the intestines to start functioning after surgery. To put anything down there too soon will cause serious problems. The first thing that will happen to announce the intestine is working again are farts! They are right in suggesting walking. My sympathic nurse suggested I walk for 20 minutes then go back to bed with a warm pack on my tummy for 40 minutes then repeat. I did this numerous times until I started to pass gas. This was way easier than the NG tube! Always remember everyone's system responds differently and some people's bowels take longer than others to get going.
As for being informed about surgery it seems the norm that most people are not properly informed nor do they even know what questions to ask. I got way better info after my surgeries from internet support boards such as this one and another one for ostomies. As a result I now belong to a support group that has put together a patients' handbook for ostomies that we hope to get in the hands of people before surgery.
My best advice is please be patient and don't try to rush recovery. Once your dad is able to eat start slowly with soft, bland foods and lots of liquids. Make sure he chews everything very well and eats small meals throughout the day. A good liquid or chewable multi-vitamin is a good idea and if he seems too tired ask your doctor about a Vit. B-12 shot. You should receive diet recommendations from either the hospital nutritionist or the ET nurse. Try Googling for ostomy support boards to get excellent tips on managing ostomies and related issues.
I'm sure your dad will do just fine!
Re: Rectal Cancer & TME
I am 34 and had rectal cancer and a tme last november - your father's situation sounds identical to mine! I had chemo/radiation, then the surgery. My surgery was also done laproscopically (Lahey Clinic - I see you are in the Boston Area). I had an ileus post surgery (bowels not waking up) which lasted a month. I was eventually sent home w/TPN (IV nutrition) and the ileus resolved itself at home.
Unfortunately, your dad needs TIME. Believe me, I know how frustrating it is to wait it out, but as my surgeon always says, "If we wait, we win!" His bowels WILL wake up when they are ready. Until they are, have him keep NPO (nothing to eat or drink) and try walking, walking, walking, and a heating pad, and lay off of the narcotics if he can tolerate it.
My surgery was supposed to take 4 hours and it took 8 - though I had a hysterctomy and appendectomy at the same time.
The ileostomy will take some getting use to. Be sure he sees an ET nurse so he feels comfortabe caring for his stoma. This was very difficult for me to adjust to.
My cancer was also gone at the time of the surgery. I still had 8 months of chemo post-operatively, but that was aggressive treatment, due to my age and not knowing if the exact stage of cancer prior to treatment. Feel free to read through my posts to hear more of my story.
I am sure your dad is frustrated, but things WILL get better - I promise!
Re: Rectal Cancer & TME
I had a right Hemicolectomy, laparposcopicially on March 2006 at 28 years old. They thought they might have to do open with all the surgical scar tissue I already had. The surgery took 5 hours. I was in the hospital a week for this before my bowels woke up. I started to run a fever, but was sent home on day 8. I was back in the E.R. a couple of days later because my pain from the surgery had spread. It no longer hurt in my lower abdomen as much as it hurt from there all the way to where my gallbladder used to be. My potassium levels had dropped and I was malnourished. I had 3 abscesses from the surgery that landed me in the hospital for another 2 weeks on TPN until I could recover. I could not even walk. Even then I went home with a pic line for antibiotics and one incision got infected and had to be torn opened and packed for a month. Surgeries like these are tough surgeries and with your dad's age he is probably do the best his body can at the moment. I believe the other poster's are right in it takes extreme amounts of time to recover. I was not back to normal for 3 months. I also have a step grandfather I took recently for a colonoscopy and they found some huge adenomas that should be removed, but he is 73 and he decided he did not want to go through what I went through. I hope your father recovers well, but understand this surgery takes alot out of anyone regardless of age. It knocked me down, at 28, flat to my feet, literally. I cried more over the lack of being able to tend to my family than I did about the pain and hospital stays. I wish you and your family the best of luck as I have several members of my family battling this condition.
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