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Rectal Cancer

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

New Here. Rectal cancer 1 cmm from anal verge. T2 N0 M0 and still the standard protocal is a APR. Come on give me a break. Thank God for a enlightend surgeon who gave me options. I'm not looking forward to radiation ,chemo and then surgery but the other option was out of the question. I have been reading a lot of the posts here and wanted to say thanks for all the info I have gotten from you veterans.My hats off to you. Thanks again for all the info.

AnneCan
Posts: 3693
Joined: Oct 2009

Welcome 462lt! I am glad you feel good about your surgeon; that is really important. Good luck with your treatment. When do you begin it? I am glad you have found the forum useful; I have found it a godsend. Take good care!

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Hi! Just want to welcome you to the board. I hope your treatments won't be as bad as you might be imagining at this point. Please let us know how things are going.

*hugs*
Gail

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Hi, very similar to my situation. What options were you given? What's your plan?

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Started 28 session of radition treatments M-F along with 5 weeks of chemo Xeloda and IV infusion Oxalpatin weeks 1,2,4,5. M-F. I get to take the weekends off. After that if all goes as planned a transanal excession to remove the cancer free scar tissue. That is the plan and I'm sticking to it. lol let's hope the big one is on board with that plan. Good luck to you. Laura

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

Welcome and yes, you'll find a lot of good input on this board as well as the colon club forum. I just had my surgery for a T3, Nx,M0 yesterday.

This thread shows the soul searching on APR vs other options: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11804

Just a limited perspective with a lot of links to research so you can make your own decisions. What I chose may not be the best for anyone but me, but at least you can see the decsion processes and some research by a few folk agonizing ;-) over the treatment/surgical options.

The last few posts get a bit passionate and off topic, so best read in order from beginning.

A ton of other posts on this board and colonclub on quality of life and surgical options.

I wish you the best!

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Thank you for the link.I hope your surgery went well. Everyone has to make there own decisions based on what they expect out of life and they're life situation.
That is why this board is so powerful. Again I hope your surgery went well and thanks again. Laura PS Both of my parents died of cancer so this whole process nothing new to me. The good news is that with the information age we are so much more informed and the medical community has to give us info that my parents didn't get. My mom died in 1988 even before I had my first computer.,but the sad truth is they are still using the same drugs from 22 years ago.

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I read your old post and liked your whole decision making on the surgury options. I hope all worked out and you are recovering nicely. Laura

khl8
Posts: 809
Joined: Nov 2009

Welcome to the club that you never wanted to be a member of! Nothing is off limits if you have questions! Ask Away! We all have differnet experiences with our treatments and can really help you along on this journey!
Kathy

Fight for my love
Posts: 1307
Joined: Jun 2009

Welcome,462it.your case is similar to my husband's.He was diagnosed last May,and he finished all the treatments in this April.My husband's diagnosis was T3,N0,M0,but after preoperative chemo and radiation,he was downstaged to T2,N0,M0.All his treatments went very smoothly and I got great support from this board.Your cancer is at stage 1,you have almost 100% chance to beat this up and leave this behind as a bad memory.My husband's primary doctor told my husband that he found the cancer at an early stage,usually after treatments,the result will be good.Good luck to you with all the treatments and be cancer free soon.Take care.

Aud's picture
Aud
Posts: 476
Joined: Oct 2009

...and sorry you have to be here but a good place to be.
I didn't do any research (well, maybe just a little), just trusted my surgeon and the team. I wouldn't recommend that, of course--the more information, the better. A second and third opinion can be helpful too. I had a T2 tumor, very low in the rectum. Initially, my surgeon talked about radiation, chemo, followed by APR and colostomy. I was devastated, trying to process all this. I simply followed orders, asked questions, and trusted my surgeon and rest of the team. My surgeon said it was an "ideal tumor in an unideal location." I found out that staging isn't so necessarily straight forward. It was difficult for them to tell if it was a T1 or T2 tumor through ultrasound, MRI, but my surgeon thought that it was a T2 just by the way it felt. The team decided that, based on the information we had, my surgeon could do a transanal excision (sept. 2009). There were positive margins (laterally, not depth-wise), which is not a good thing. My surgeon said that if I went to 5 different doctors, I would get 5 different opinions. Again, I trusted my surgeon (he has a good reputation) and he did a re-excision about a month later with clear margins (oct. 2009). However, he could only cut so far without damaging the anal sphincter so how clear is clear, in my opinion, is questionable. I then had 6 weeks (30 treatments) of radiation treatment along with oral Xeloda (chemo). I was told that there was approximately 80% chance of cure. Did I make the right decision? I don't know. If I have no recurrence, of course I'd feel like I made the right decision. If a recurrence happens, would I kick myself for not asking for and pushing for APR/colostomy? Whatever the outcome, the decision was made. Now I am followed very closely by my surgeon. The good thing about transanal excision is quick recovery and no colostomy. The bad thing is that there is no way to know for sure if the lymph nodes are involved.
I wish the best for you. Please feel free to PM me if you want.
Holding you in the Light for healing.
~Audrey

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I noticed your picture and think you have beautiful child there on your lap lots of reason to live. Don't beat yourself up about your decision what will happen will happen. As long as they watch you close can always have an APR. My mother had breast cancer when the standard treatment was radical mastetomis (sorry spelling) now women have lots of other options. Everyone has to make that decision for their life and life style. I must have in big letters on my file no colostomy because every nurse and doctor comments about that which I think is amusing. The truth is I have no parents, no children, now no boyfriend, and I do very physical work for a living I just don't think it would work with my life so I will avoid it at all cost. Yes I understand the if it doesn't work someone said I would be pulling a Bob Marley, again my decision not right for everyone. I love the internet and the information age. So much info and sharing with other people really didn't have any of this when my mother had breat cancer and my dad lung cancer, sure makes a difference in how much info health care providers give you. It is alway good to know whatt they are talking about. I wish you the very best. Laura

Annabelle41415's picture
Annabelle41415
Posts: 4244
Joined: Feb 2009

Sorry to hear of your diagnosis but glad that you were able to find us. We have a lot of knowledgeable people here that can give you their experience. Not sure what an APR is. You are going to have a journey ahead of you, but you will get through it. Keep us informed as to how you are doing.

Kim

Aud's picture
Aud
Posts: 476
Joined: Oct 2009

APR is "abdominoperitoneal resection," where the rectum is removed followed by a colostomy. It's often done for low rectal tumors.
~Aud

Annabelle41415's picture
Annabelle41415
Posts: 4244
Joined: Feb 2009

I had my rectum removed followed by an ileostomy, but had a reversal. Never heard of that. My cancer was very low too, but surgeon was able to do temporary.

Kim

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

But, 2cm tumor in the first rectal fold. Squamous cell carcinoma. Pre-surgical rads and chemo COMPLETELY eliminated the tumor (squamous cell is VERY radio sensitive). Questionable local lymph node involvement.

Based on my age (49) and life expectancy, my surgeon suggested to go ahead with the J-pouch procedure, even tho there was nothing to be seen of the tumor at the site. I did, rectum and sigmoid colon removed, as well as a total hysterectomy, and descending colon made into a 'new' rectum.

It took some work, but I am celebrating 5 years clear from cancer this year. I needed to find the foods that worked and didn't with my 'new plumbing'. But, at this point, I would be willing to put my bowel's performance up against anyones, even people with all of their parts.

My first surgeon said I had a 50% chance of a permanent colostomy. I did my homework, called around to local GI surgeons, and asked where they sent their low bowel resection patients. After 3 telling me the same name, I called. After exam, etc, he gave me a 3% chance of a temporary colostomy, and I didn't even have that...was using my new plumbing the night after surgery.

Feel free to ask any and all questions of us here, there are many that can help.

Welcome to the semi-colons!

Hugs, Kathi

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

T2N0M0 is what I was, too, but my cancer was 5 cm above the anal verge. 1 cm is, of course, much more iffy, for avoiding a permanent colostomy. I sure hope you can avoid it, but if it should turn out that your surgeon doesn't think you can avoid it, well, you don't want to paint yourself into a corner. You're fortunate to have a surgeon who can give you options.

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Thanks for all the replys. Should start rad and chemo on Wednesday. Small Insurance issue so may not start untill next monday. Ready to get this show on the road I hate limbo land.I am a get on with it person. Again thanks for all the support I feel like a baby compared to all you guys.

MontyG
Posts: 2
Joined: Jun 2010

462lt - I'm new here too - just diagnosed a few weeks ago. Rectal, 7cm up. T3N2M0. Hope to get started with chemo and rad soon and get this show on the road. Still digesting what to expect in terms of side effects, etc.

AnneCan
Posts: 3693
Joined: Oct 2009

Hi Monty,

Welcome to the forum. I think you will find it very helpful; I know I do. What chemo will you be on?

MontyG
Posts: 2
Joined: Jun 2010

I met with the oncologist for the first time today......She is planning to treat me with xeloda. I really don't know the difference. I really don't know the difference at this point. I guess I need to do a lot more research. Does anyone have experience with this medication?

AnneCan
Posts: 3693
Joined: Oct 2009

I haven't been on xeloda but many on this forum have. If you want to find out their experiences you might want to start a new thread; this question might get missed here. I wish you all the best with your treatment + hope you will find this forum helpful.

z's picture
z
Posts: 1250
Joined: May 2009

Hi 462It,

Do you have rectal or anal cancer? I am a anal cancer survivor Stage II NOMO. The cancer was right at the anal verge. I was treated with the standard treatment (Nigro), of 2 96 hour drip cycles of 5FU, with an infustion of mytomicin on 1st chemo day, along with 30 radiation zaps. I completed treatment on 6-30-09 and show NED to date. With your cancer being 1 cm from the anal verge, and from what I understand the anal canal is 4 inches long, I was just wondering why it is considered rectal cancer. I know that the tx is different for rectal. With anal cancer the tx used to be immediate colostomy, which this was decades ago. Lori

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

I think it depends a bit on the type of cancer...as well as where it is....

As I metioned, mine was squamous cell carcinoma, which is usually anal cancer. But, it was in the rectum. I Confused the heck out of my treating docs...which way to treat? So, the 'first strike' was chemo/rads, as is done for the type of cancer, the 'second strike' was surgery to remove my rectum, as is done many times for rectal surgery.

I prevailed by finding the best team I could find. With low colorectal/anal cancer, you really need to find a team that specializes in this...my sister was dx'ed with anal...and hers was just a bit down from mine...totally different treatment...

I'm so glad that you are dancing with NED!!!

Hugs, Kathi

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Hi Z, It is rectal cancer. Started Rad and Chemo yesterday the drugs are alittle different for the 2 types of cancers. Xeloda pills and Oxyplatin IV 28 zapsof radiation. Good luck to you. Laura

z's picture
z
Posts: 1250
Joined: May 2009

Hi Laura,

Thank you for replying. I hope your treatment will zoom by and the cancer will be destroyed. I post on the anal cancer discussion group. When I 1st came to the Cancer Survivors Network there was no anal cancer discussion group, and then JDuke had the ACS set one up. Anal cancer is rare. There is some good advice for creams and ointments to use as you go through the radiation zaps. I'm sure your radiologist would recomend some to you, and the proper time to use them. I never used any before my radiation tx, because that will cause you to burn more. I took baths everyday which was soothing. I really didn't have pain from the radiation until the 3rd week. I took 4 pain meds a day, which I could have taken 12, but the 4 was the right amount for me. I wish you well, and please take a look at the anal cancer board, theres a lot of surviovors there. Lori

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I went to the anal cancer board first because I was curious at the options for you guys. Seems like different drugs. I hope you are doing will. Thanks for your support. I had my first infusion of Oxalitpatin (spelling wrong sorry). Went well I feel pretty good. Watched the world cup with a sweet lady from Spain we gave the nurses a heart attack when we started yelling at the TV. Love it. Thanks again Laura

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

for The Netherlands...we are here now...you should have heard the noise from our neighbors!!!

We go to Spain soon, I can't remember who they are playing, but I'm certain we will hear it...in Italy, I won't mention it...ROFL!

Hugs, Kathi

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Thanks again I should have called you Lori.

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Laura,

Welcome to the board. I've already seen some of your other replies to posts. I wish you all the best with your surgery and follow up.
I'll look forward to hearing more from you. I was diagnosed in August 2007, and have been on this board since approx Dec. 2008- wish I found it earlier, but it's been great- everyone here is great. Take care and God bless-
Lisa

wifeandmom
Posts: 31
Joined: Apr 2010

Hi and thank you all for the opportunity to join this great site!

I was diagnosed 14 months ago (at age 49) with T2/T3 N0 M0 low lying rectal cancer (about 2 cm from the anal verge). I did the neo-adjuvant 6 weeks of Oxaliplatin/Xeloda/radiation (with about a 95% response), followed by LAR.

I really struggled with the transanal excision option. Wish I'd gotten a second opinion just so I could have avoided this long year of questioning if I did the right thing. I developed a recto-vaginal fistula which necessitated giving me a second temporary ileostomy so that I could get through the six months of adjuvant chemo. Finally finished the chemo last week and will have my PET/CT on Tuesday, and get my results the following week. I keep wondering if I'd had the TAE, maybe I wouldn't have developed the fistula. I've also developed alot of scar tissue at the anastomatic connection, so in September I will have surgery to fix both that and the fistula. Then, the plan is to try for another reversal three months later.

Because I was considered "young" and I have 3 relatively young children (19,16, and 11), my first surgeon advised the LAR as the risk for recurrance was relatively high. He said that if I was elderly (e.g., shorter life expectancy) he might be more likely to advise TAE.

I keep telling myself that it's too late now for second guessing; what's gone is gone. But the fistula really threw me for a loop and so unexpectedly changed what I thought would be my course of recovery.

I'm wondering if anyone here has had experience with this kind of fistula, as well as ileostomy reversal. My current surgeon (head of colorectal surgery at Johns Hopkins) seems very confident in his ability to fix the fistula and take care of the scar tissue (though he isn't sure what kind of connection he'll be able to make; he said it depends on how much colon I have to work with in terms of being able to create a colonic j-pouch or not). I have alot of confidence in this surgeon, but I'm still apprehensive especially because he was much more cautious regarding future bowel functioning (not pessimistic, just more cautious).

Anyway, thank you all for the chance to vent a little, and hopefully get some advice.
Best wishes to all of you!
---Dorothy

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Hi Dorthy, I was 35 at diagnosis with a stage 3. I also did chemo and radiation for 6 wks, a break and the a resection with ileostomy. I never developed a fistula, but they were able to reverse the ostomy 3 mths after the resection. I am 10 mths from the reversal now and things are getting better all the time. I had no urgercy/incontinence issues that alot of people have, but dealt with constipation and getting the muscles to work again.. My tumor was rectal also, about6 cm in.. So try to be positive about it, anything is possible. I'll keep you in my prayers .. Take care. Petrina

wifeandmom
Posts: 31
Joined: Apr 2010

Hi Petrina,
Thanks for the encouragement! So glad you're doing well!
--Dorothy

wifeandmom
Posts: 31
Joined: Apr 2010

Hi Graci,
Thank you!
--Dorothy

z's picture
z
Posts: 1250
Joined: May 2009

Hi Graci,

I'm Z-Lori, I had anal cancer, and I normally post on the anal discussion board. Laura is 462it who is being treated for rectal cancer. It does get confusing. I wish you well. Lori

khl8
Posts: 809
Joined: Nov 2009

Dorothy,
I was diagnosed at 44. rectal cancer here, 6 weeeks radaiton and Xeloda, resection thorugh major incision and simultanius hysterectomy, temporary ileostomy, Folfox chemo and reversal. Whew! Sounds like a lot when you type it all out.
As for the reversal, it seems as if everyone is differnet in how they react to the surgery. For the first few weeks I struggled with incontinence but the muscle strengthened and it did get better. I have noticed a few things, such as red meat makes me constipated so I am avoiding that more than I did before, but for the most part I am so happy I had this reversed! What else would you like to know?
Kathy

wifeandmom
Posts: 31
Joined: Apr 2010

Thank you, Kathy. I really appreciate it.
You're even younger than me --- are you able to get out and take care of everything you need and want to without worrying about leakage or accidents?
Thanks again,
Dorothy

khl8
Posts: 809
Joined: Nov 2009

Yes, my life is Normal for the most part. Every so often I go to thebathroom and go alot, and for some reason this happens when I am at home. But I can go out, go to work, I have time to "find" a restroom without having to scope it out when I walk in someplace. I am comfortable being away from home. In fact I am taking my first trip to Jamaica in a few weeks for my son's wedding, and not worried about it one bit! My ileostomy was reversed 10 months ago. It took a bit of time to retrain myself but it worked. It does take patience and you have to be prepared when it is first done, to have an accident or two. I had my reversal on a Wednesday, spent 2 nights in the hopital, home recovering for a week then I went back to work. Just in case though, I carried ( past tense now) a change of clothes, but I did not ever have to use them. I did have to when I had the ileostomy!
Kathy

wifeandmom
Posts: 31
Joined: Apr 2010

That's great! I can only hope that I do as well as you have. Enjoy Jamaica and congratulations on your son's marriage. Thanks, Kathy!
Regards,
Dorothy

khl8
Posts: 809
Joined: Nov 2009

any questions? please ask, my treatment and recovery are an open book!
Kathy

wifeandmom
Posts: 31
Joined: Apr 2010

If you don't mind, I would be curious to know how similar our anastomatic connections are. My tumor was quite low in the rectum (about 2cm from the anal verge). I am having a repeat coloanal anastomosis in order to treat a fistula and clear alot of scar tissue. So the surgeon (a different one from the one who did the first 2 surgeries) is planning a pull-through procedure and may be able to create a pouch 'depending on how much colon he has to work with'. Is your situation similar or quite different? Thank you so much for allowing me to ask such personal questions. That's very generous of you!
Warm regards,
Dorothy

iHope2012
Posts: 2
Joined: Aug 2012

I had a low tumor as well... T2, no chemo or radiation. Cancer removed with surgery in Nov 2010 along with gaining a temporary ielostomy. Ielo reversed Jan 2011, but had to be brought back 3 weeks later due to the development of the recto-vaginal fistula. To date I still have the ielo and the fistula. My surgeon has tried several repairs like stitches, mesh, and using a fold of colon tissue to create a "flap" to repair. We were hoping these "lesser" repairs would work, but It doesn't seem so. Now my cancer surgeon has scheduled me an appt. to consult with a reconstructive surgeon. Looks like I'm headed for a more invasive repair, but whatever it takes. I so want to move forward in life "whole" again. My prayers go out for you all and gracious thanks to our Lord for His countless blessings :-)

Annie_777
Posts: 2
Joined: Jan 2013

I'm Annie - 35 y/o full-time working single mom of 5 & 10 y/o boys.  I just got diagnosed with stage 1 rectal cancer (T2N0M0).  My tumor was 2.5cm in diameter and 10cm above anal verge.  Because I also had a fair number of precancerous colon polyps excised from colonoscopy and my "young age", I received recommendation for LAR w/TME.  I went for it w/o any chemo/radiation therapy.  In fact, I was having uncontrolled artery bleeding at the biopsy site that makes an emergency surgery a clear path with no other options.  I am experiencing a lot of difficulties with bowel functions right now - 2 weeks after my LAR surgery.  It's always hard to balance the quality of life and risk of treatments against the risk of cancer recurrence.  But for my kids, I'd do anything to ensure that my risk of recurrence is at the lowest.  My 5 y/o wants to become a doctor (actually a "pediatric dermatologist" in his words) when he grows up.  And I am looking forward to seeing that day when his dream comes true!

steved
Posts: 836
Joined: Apr 2004

Welcome Annie. Just thought I would point out that you have posted this on an old fthread that has beenresurrected so may not be seen by many and get the replies you arelooking  for.

 

 It sounds like a rough journey for you so far but youto young age and good attitude will bode well. I hope your situation settles with your bowel habits as it is early days yet. Give yourself time to heAl andrest.

 

All the best,

Steve

 

 

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