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Rectal Cancer - Lymph Node Recurrence - Any advice and/or stories to share?

Nino75
Posts: 3
Joined: Nov 2012

Hello everyone!

I am brand new to the message board.

I am a 37 year old male who lives in Los Angeles.

I was diagnosed with Stage One T2 N0 low rectal cancer in May of 2010.

In July of 2010, I had a lower anterior resection surgery. The da Vinci surgical machine was used to perform my surgery.

I had an ileostomy bag for seven weeks following the surgery. The ilesotomy reversal surgery was performed on September 7, 2010.

My many follow-up appointment with my oncologist went well, as did my CT scans.

At the end of this past October, I had a routine CT scan. It had been a full year since my last scan.

This recent scan showed that the cancer had metastasized. There is a new 2.8 x 2.1 cm left external iliac lymph node that is cancerous. This is, basically, near my left hip area.

I have been told this is technically called a "Stage 1 rectal cancer with a lymph node recurrence". My oncologist said the staging is the same as whatever my original staging was in 2010.

I have been told that this new adenocarcinoma is very, very likely something that metastasized from my original rectal tumor before my surgery in 2010.

They are currently comparing my recent biopsy to my pathology "block" from 2010, to absolutely, positively confirm that it is from my rectal cancer.

My oncologist's purposed plan of treatment is 5.5 weeks of radiation - which would include taking xeloda.

Then after a break from completing the radiation treatment - I would begin 18 weeks of chemo. I would be given xeloda again. And, I would receive oxaliplatin by vein once every three weeks.

He doesn't feel that my new cancer can be cured surgically.

And, he is uncertain that the radiation and chemo can rid my body of the cancer cells 100%.

He says that I am a rare case. Rare, due to the fact that the stage 1 cancer has returned. And, even more rare, is the location on my body where it has metastasized.

This afternoon I have an appointment with the doctor who performed my resection surgery in 2010.

This Friday, I will be seeing the radiation oncologist that my regular oncologist referred.

I plan on getting, at least, 2 or 3 more opinions from other oncologists.

I am posting here today for two reasons.

One is to share my story with my fellow colorectal cancer brothers and sisters.

And, two, is to see if there is any advice that you guys may have to share with me.

I am open to any and all advice and information that you are willing to share.

Please let me know of any Dr's, hospitals, clinical trials, etc that you may be aware of.

Thank you very, very much for your help and time.

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Sorry we let your post slide so far down before responding to it.

I caught it and wanted to address your post.

Stage I with recurrence?

Just goes to show you that anything in the world of cancer is possible. There are few scant stage I's on this board...I know of 2 and they are not posting regularly at this time. Perhaps, they will see this post and respond to you.

From what I remember of their cases, they were surgery only...they did not chemo or radiation of any kind. Surgery cleared them and both have remained clear.

So, I agree with you...you're the first Stage I that I've ever known to have a recurrence.

As far as the protocol you described for your treatment program...sounds good and to spec. Xeloda is the pill form of 5fu, which is Flouracil. This is also administered via IV...the debate is out as to the efficacy of one over another...both have their side effects...I preferred the IV over the pill...the pill will give you some bad blisters on your feet.

You better start putting some Bag Balm or another type of moisturer on your feet...once they go bad, it takes time to get them back...start now and you might head off some of the later problems with taking it.

Of course, it's uncertain as to whether any surgery or treatment (of any kind) will eradicate cancer 100%...keep in mind that even healthy people have cancer cells floating in their bodies...so forget about the 100% of all cancer being gone...ever.

The issue will be to eliminate as many as possible in the hopes that your immune system will then be able to re-engage and police the area.

As you have already seen with what you've done...you recurred...once you recur, you can continue to recur...I've recurred 3 times myself, but currently clear.

While surgery may not be a viable option right now...the role of chemo is to shrink the tumors to possibly allow a surgical intervention...and if not, then it can greatly reduce, or hold the line for a time.

Inevitably, when one faces a 'chemo for life' scenario, the body takes such a tremendous pounding and without time to recover, that can be a challenge. And of course, over time (unknown how long with each individual)cancer cells can become desensitized to the effects of chemo and stop working altogether.

Right now, you've got some challenges, but you are nowhere near the end point...you've got a lot of fighting to do...and I wish you the best in your fight.

-Craig

Nino75
Posts: 3
Joined: Nov 2012

Thank you for the bits of information and advice, Craig! I appreciate it.

This week I am going to speak with a couple more Dr's to get their opinions.

I will post an update soon.

Take Care!

Joy1216's picture
Joy1216
Posts: 283
Joined: Mar 2006

Hi, Nino75. I was diagnosed with Stage1 colon cancer six years ago. I haven't had any recurrence so I don't know anything about what you are going through now. My oncologist told me the chances of recurrence were 5% or less, but that may have been for colon as opposed to rectal cancer. Sorry that I don't have any advice, but I wanted you to know there are some Stage 1ers here. I'll be following how you're doing.
Joy

Nino75
Posts: 3
Joined: Nov 2012

thanks for the note, Joy!

i will keep you guys posted.

:o)

Chelsea71
Posts: 1170
Joined: Sep 2012

Your situation seems very unique. I think you are wise to seek several opinions. Welcome to the group. You will get some great information here. Good luck and please seek us posted.

Chelsea

smokeyjoe
Posts: 1428
Joined: Feb 2011

Just wanted to say Hi, I'm Stage 1V so I have no input into your situation. Have the biopsy results come back yet from your node?? I guess nothing will go forward till those come back. I did Xeloda pills (contrary to Craig, SORRY CRAIG, love you!!) I had no side effects from the xeloda, although I was only on it for 3 months. No peeling of hands or feet, and I was in and out of the lake all that time, wearing wet water shoes for hours etc., but as they say everyone reacts differently to each of the meds. Xeloda wasn't as effective on my cancer though so I went back to folfiri. I've never had the oxy .... I think Craig has had that through a vein ..... just curious if they're recommending a port at all, from what I've heard this drug can be extremely hard on the veins. Craig can give you better advice on that one. Good luck with your treatments.

Sundanceh's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

I had done Xeloda about 11-months and the toxicity really built up in my feet and the med tore my guts up real good with nausea etc.etc.

Yes, please don't do Oxaliplatin without a port...my first infusion of that minus it was unbelievable...my onc didn't have the common sense to give me a heads up on anything to expect...it was snowing that day with ice....no gloves...you know what happened...ouch!

Chemo is extremely caustic on the veins...I guess everybody's is different, but mine have gone subterranean over the years and a blood draw for those that can't access the port is very challenging and often painful.

Whether you are doing Folfox or Folfiri, it makes administration of such much easier with a central line.

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