I (37 year old male) was recently diagnosed with rectal ca and after a month of juggling through choices of doctors and hospitals, I ended up deciding to get my treatment at Sloan in New York City.
I am not quite sure about the stage as the ct scan says there is no evidence that cancer has spread beyond the rectal wall. But, 3D ultrasound revealed that it has penetrated the wall a little and may or may not be touching a few lymph nodes. Briefly, my treatment plan is 5 weeks of chemo-radiation followed up with surgery and then another three months of chemo. I will receive the standard 5-fluorouracil through continuous infusion. Radiation will be administered 5 days a week simultaneously with chemo. I was told that Chemo is given to enhance the result of radiation. I will be going by train every day to New York city to receive my treatment and donít know what impact it will have on me physically. From reading some postings here, it seems radiation is not that difficult, but I am concerned about the continuous infusion. Please share your experience or opinion, thanks.
I'm sorry to hear of your dx. Sounds much like mine. I am now 32. I did the same regimen of radiation and continuous 5 FU/Leucovorin in the beginning too and they added oxaliliplatin. It is different for everyone. I found the second month into radiation, I had to stop working because I was so fatigued. Wearing the pump was no big deal though.
It doesn't matter on Ultrasound if the tumor is touching the lymphnodes, all that matters is the space it has entered, which allow the lyphatic fluid to come in contact with the tumor, spreading the cancer cells to other areas. My US only showed one small inflamed node, but 6/10 were positive.
The radiation and chemo should help to get cancer that has spread to the nodes, but is NOT fullproof, as you can see by mine.
How were your CT and PET scans?
I'm sure this is pretty overwhelming right now... my advice...take it step by step. You are young... I hope they encouraged you to freeze some sperm at a local bank before you begin treatment. I have two boys, but my wife and I always wanted that third... I am now 32 now.. dx at 31. So I froze some, that's an experience in itself!
Keep in touch. This is a GREAT resource for you, as there are many people who have great experience to share. And don't be afraid to ask questions. We are not shy.
Thanks CancerDad, it was really good to hear from someone who went through the same experience. My pet scan, bone, mri and ct scan did not show any spread of cancer other than that part of rectum (about 7.5 cm from the anal verge). This was revealed through colonoscopy I had gone through in December. The surgeon at slaon was pretty sure that I wouldn't need a permanent colostomy, but will end up with a temporary one. Ultrasound is the only test that is showing that the cancer has penetrated the wall a little, doctor wasn't sure whether it had spread to the lymph nodes.
I was advised to bank my sperm as well. I have a week to do that. We have a 6 month old and sure want to keep our options open.
This board is full of kind and sympathetic people, I am glad I bumped into it.
Husband had radioT/5fu post operatively. He suffered little or no nausea and loose bowels although this may have been more to do with surgery. He takes meds for the diarrhea. He also got sunburn in his nether regions. He used a lotion that the hospital recommended. Also no metal based soaps/gels/lotions/shampoos/etc.
His therapy was 90 mintute drive by car but the hospital arranged the transport for him. The treatment itself only takes few minutes.
Hi Ktee, appreciate your response. Glad to hear that your husband did well through chemo-radiation treatment. I am just a little concerned about infection and catching something during my ride to nyc. I plan to wear a mask on the train and the subway. Did your husband gain back some of the weight he lost during the treatment? I have already lost about 12lbs in two months. I am 6 feet tall and about 165lbs. I have been eating a lot, but can't seem to gain any weight, couple of years ago this would have been great thing! Anyway, best of luck to you and your husband.
husband did not get infection during chemo but took a lot of precautions against it. i would think a mask is a good idea. try to avoid touching door handles as much as possible (a difficult thing to achieve i know but i did prove a point to DH once by walking through the hospital without touching a door knob....... just as well that i am pretty good at the old high-kick routine and have big elbows )
he gained weight consistantly once his first chemo started just after his bowel resection. he is now back up to his original weight. his diet was pretty normal although he had a low fibre diet for a month or so after his liver resection but that suited his unhealthy preferences anyway.
I too lost weight during the stay after surgery but did not gain or lose due to chemo.
I suffered no infection post-op and had one bout of tonsillitis during chemo. My greatest precautions was watching that I did not touch my mouth, nose, eyes too much and washed my hands a lot.
How are you doing... where are you in treatment. I'm sorry, I kind of fell off the boards for a while. I posted your answer on the other thread, but like you said... since our experience is so similar, please feel free to ask ANY questions. I know how overwhelming it is in the beginning, and even now for me!
7.5cm from the anal verge is PLENTY of room, esp for a skilled rectal surgeon, unless he/she encounters something when they are in there. But you too are having radiation, which will shrink the tumor.
My tumor was 3cm from the anal verge (colorectal surgeon said it was even lower than anyone of his associates had thought), but he spent an extra 3 hours on me in the OR and saved a portion of my rectum. I am having difficulties now still, but not even a year after having my temp ileostomy bag removed... I'm told I should expect this. I ended up having a coloanal pull thru, where they strip the mucous lining on both ends and pull the top thru to the bottom and hand sew a cuff to close the two sides. It was a unique way to do things...he says he saved the sphincters, but I'm experiencing difficulty with the rectum staying large enough for stool passage, and a problem with incontinence. Again, the surgeon says that I definitely have damage to the nerves, but he still thinks in time I may recover full control, and be able to keep open enough to let business happen "normally." Although he says it will never be "normal" again. Nothing that you can really do... I would have been ****** if we hadn't tried saving it, always wondering whether we could have kept it.
Anyway, you have a long way to go before you get to that, but I just wanted to assure you that it was more than likely they will be able to reconnect you-- although the proper way is to have a temp bag for about 3-4 months. I'm glad you are going to a good place like Sloan... I did consult their regarding chemo regimens. I am just a couple states North of you. Both Eastern Seaborders!
Thanks for detailed description of what you went through. Hope your BM turns to normal, just scared even thinking about what is there to come. Today is my first day of treatment. I am writing this post as I wait for my first chemo regimen of continuous infusion. I will then head out to radiation building on 67th to get my radiation. Hopefully it will seat well through out the day, I am trying not to think too much about the side-effects.
My surgeon here at sloan did mention about temporary colostomy to allow the cut to heal for 3/4 months, then he will sew it back in place. I really had to fight with my company to switch my insurance so I could be treated at sloan. HMO that I had previously did not approve my appeal to go see the surgeon at sloan.
I like to thank you again for taking your time to share your experience, it is very helpful to have someone to ask questions who went through similar ordeal. May God almightly bless us all through these tough times.