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New to board: Stage 2a Rectal Cancer some high risk features

Sammy2067's picture
Sammy2067
Posts: 5
Joined: Jul 2018

Hello, Im Sammy DeFriese from Chattanooga, TN   51 years old

DX March 2018:  Rectal Cancer

MRI: April 25, 2018  T3(c) N0 MO

May 8-13: Short Course Radiotherapy

May15:  Surgery LAR with TME

Temporay Iliostomy:

Pathology:  T3 N0 M0 with 0/21 nodes negative, R0 margins, T3(c) N0 MO.  Well Differentiated Tumor Middle Rectal cancer.

Pahtology Concerns:  Lymphvascular: Present,   Pernueral Invasion: Identified.  Tumor Budding:  Extensive with score >10

July 20:  CEA .5,   CA19-9  2.9

Chemo:  July 10: Started Capox due to high risk features for Stage 2A with the LVI, PNI, and Tumor Budding.   Nodes and Margins were negative and T3(c) tumore is very good.  But still concerned about the other 2a "high risk features:

 

The Oxyplatin caused severe vomiting, naseau, jaw pain, and zero apetite.  Lost 14 pounds in 5 days.  Discontinued the OXY.  two week rest.  Starting Xeloda (oral Capacetibine) by iteslf on March 26th.  twice Daily.  I think you have to do the Xeoloda with Stage 2a if you have any high risk features such as LVI, PNI, Tumor budding, or a Tumor that is T3(c) or (d).  That just to much depth invasion into past the bowel wall.  Tumor size (depth of invasion) and the high risk features mentioned above are reasons for Stage 2a to to at least Capacetibine (oral pill) adjuvant therapy.

 

Hope this helps anyone on what IM doing with Stage 2a Rectal Cancer.  If I had caught it soon and only had T3(a-b) or T1 or T2 tumor with no high risk features, then I wouldnt do chemo of any sort and get on Diet, exercise, and nutrion hard.  Should actualy do that anyways.

 

plsletitrain
Posts: 253
Joined: Jul 2017

First, welcome to the board although I wished no other new members popped up.  I admire you because I'm even Stage 3B (diagnosed March 2017) and has shunned chemo--I did not finish it all and still doubtful if I want to get back to it.  Recently I just had a met to the lung removed (so I don't know if that makes me Stage IV already but who cares).

Anyway I'm glad you're listening to your docs.  The other factors you mentioned (diet, exercise, vitamins) are all essential aside from the chemo itself so keep on maintaining these.  Good luck on your further treatments and I know you'll be officially NED (No evidence of disease) soon.

Annabelle41415's picture
Annabelle41415
Posts: 6300
Joined: Feb 2009

My treatment was chemo/rad, surgery, chemo however they removed my entire rectum and part of the colon and then gave me a j-pouch.  I'm sorry to hear that you were having such a difficult time with the treatment.  Losing that much weight in such a short time is not good.  Oxy is hard on a person.  My doctor wouldn't reduce it even when telling her after 5 treatments that my hands and feet were going numb.  She told me it was "just a nusiance" well it wasn't and I'm dealing with pain from the neuropathy every day forward.  Welcome to the board and continue to come on here if you have further questions.

Kim

Twinzma
Posts: 220
Joined: Jan 2018

If they only caught it sooner....Please don't look at the past it will eat you up inside. My husband was stage 4 with 30 mets to the liver when he found out. Trust me we spent way too much time dwelling on what he should have done could have done but it makes no difference. It is what it is. Your on the right track now, found a great group for support. Glad you have a good medical team in your corner and are fighting. You're young so that factor alone will make all the difference in the world with this battle. My husband is 55, and I don't think he would have come as far as he has had he been even 10 years older. Staying as active as possible is so important so push thorugh it as hard as you can. 

I am so sorry that you are here, but know you found a great group of people here. I don't think I would be sane had it not been for the support I have found here. 

Sammy2067's picture
Sammy2067
Posts: 5
Joined: Jul 2018

thanks guys!  Hearing other stories is just incredible in helping to make sense of it all!  I appreciatd everyoines advice and thoughts.

SandiaBuddy's picture
SandiaBuddy
Posts: 953
Joined: Apr 2017

With your bad reaction to Oxi, it would not be surprising if the Capi gets to you as well.  Work assertively with your oncologist to adjust the dose to minimize the side effects.  You might want to read old posts to see what side effects to expect.  One piece of advice that worked for me was to use a heavy lotion (Eucerin for me) on your hands and feet.  The Capi sneaks up on you after a while, so watch out for it.  In the end I took about a 1/2 daily dose for four months.  Sorry you are here and good luck to you.

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  I had stage 3 as well and thanks for posting the note on it being well differentiated.  I had that too but couldn't remember the name for it. Chemo does that, makes you forget things and I knew I had 3 pluses coming out of surgery with that being one of them. 

  Xeloda has so many side affects and depending on the dose and general makeup of the person it could be next to nothing or beyond terrible. I had to have my dosage lowered for the follow up chemo.  They had me taking 3450 mg a day and droped it to 3000.  I just couldn't handle the exra 3 150 mg pills in the evening.  My feet would hurt so bad in the morning I couldn't stand without waiting at least a minute for things to calm down.  Dropping the 450 made that mostly go away. I still have a little touch of it to this day in my feet and hands.  That was back in January through late April.  Anyhow, stay the course and know that you're in our prayers and thoughts.

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I tolerated Xeloda well too but I think that the last four rounds put me in the longer-term neuropathy group. If it is going away, it is going away very, very slowly. It's very light in the hands and moderate in the toes. I can function with it but I'd rather not have to.

Canadian Sandy's picture
Canadian Sandy
Posts: 531
Joined: Jul 2016

I had a bad reaction to irinotecan but tolerated the xeloda well. 

 

annie4145
Posts: 157
Joined: Jul 2018

"If I had caught it sooner"... I totally understand that one as well.  I am 51, with a 10 year old and a 12 year old.  I went in for colonoscopy one day after my 51st birthday.  Originally diagnosed with stage 2a anal cancer, but then went to stage 3 after my PET scan.   I knew that I should have gone in a little earlier.  (I had some symptoms that should have had me in the doctor's office a 4-5 months earlier), and of course, I kick myself now for not getting right after I turned 50.  But this was exactly the last health issue I would have ever expected.  And really, how many people really go get a colonscopy when they first turn 50????  (Not my twin sister, and she is a doctor.  But I am all over her case now to get it done. )

And if you had gone in too early and they missed it during that colonscopy, you might be even worse off if you waited for a second colonoscopy in 10 years because it could have grown in that 10 year period.   

It is just so easy to put off health issues when you are busy with work and family.  I am glad that you caught it early!  Best wishes for  a speedy and complete cure.

 

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