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Stage IV Rectal Cancer with Bone Metastasis Diagnosis

Nick5407
Posts: 2
Joined: May 2016

I am struggling with treatment opinions. I was diagnosed in Jan 2016.  I have FAP (grown to over 1,000 polyps in the colon and several on the rectum) which one of them developed to stage IV cancer with bone Metastasis(spine, shoulder, arm, rib, hip) before I sought treatment. The initial plan was to undergo chemo radiation therapy (28 treatment days) and based on the results of treatment, determine which surgery was appropriate to remove the colon and/or  rectum(illeanal pouch or full colectomy with ileostomy) and  then systemic chemo after for the bone Metastasis. At the end of chemo radiation, I met with surgeon who advised just moving forward with ileostomy. This confused me as no additional tests or scans were done. I was told that it was because the initial plan was developed before they identified the Metastasis in the bone through a PET CT. I confirmed this with my Oncologist. This caused me seek a second opinion from another practice who feels systemic chemo to treat the Metastasis is the priority and surgery to remove colon later, which surgery would to be determined. I am hesitant to have full ileostomy unless totally necessary as I am only 27, husband and father of 2 (soon to be 3) and live a very active lifestyle which a colostomy would significantly impede. I am trying to decide what will give best quality of life with having a young family I need to support and can't decide which is more appropriate. My original oncologist is with a well respected practice, but second opinion is actually from a cancer treatment center, roswell park. Considering switching my treatment there instead. The opinions are directly conflicting opinions on the amount of time following each surgery until I could be administered the systemic chemotherapy. This is and the difference in opinion between the bine metastasis or colon being the priority to treat next I have been told are the driving factors in their differing opinions. Any input is great appreciated!

Trubrit's picture
Trubrit
Posts: 3887
Joined: Jan 2013

27! So very young. And not beating around the bush, very sad. 

Sorry, I remember being put off with all of the sympathetic looks and expressions, when I was first diagnosed. It gets old, especially when all you want is postive support and to get on with fighting and living. 

But my heart aches for you youthfulness and your young family.  BUT saying that, you have age as a great fighting factor. Us oldies, well, it gets to be a struggle cause our bodies just don't have quite as much fight as we did when we were younger. 

It is awful when you suddenly realize that there is no one way to fight Cancer. Its like, surley all the Doctors will agree, but no. It is so frustrating, because all you want to do it get on with it, and now you have to make a decision that will effect your life and may even be the difference between life and death. 

What you are expereincing ins out of my realm, and all I can offer is that you might want to think of a third opinion. 

There are folks here who will be able to advice you in a more succinct way. I hope they post for you soon. 

What I can offer though, is support. This truly is a wonderful forum, and worth sticking with, as we have folks who have been through or are going through or have watched their loved one go through all kinds of treatments. 

You are in for a rough ride, and I will send good thoughts (Prayers if they are what you want) and be here for you with my limited knowledge and experience. 

SUE

lp1964's picture
lp1964
Posts: 1212
Joined: Jun 2013

I am truly sorry that you have to deal with this at such a young age and with family. You sound very strong and that's big part of making it. I am a 51 year old man post rectal cancer and with colostomy. 

Even though ostomies don't necessarily hold you back from doing anything you want to do, but in your situation it's not what I would start with. I would go and do the chemo to get rid of most of the cancer cells. If you get a favorable response, you may consider the surgery to further relieve your cancer load. But you can make that decision then. Your life will be entirely different in a few months, hopefully better and more optimistic. Don't start with something irreversible now.

I wish you all the best and your family.

Laz

vtspa6
Posts: 161
Joined: Aug 2015

Maybe the doctors are thinking chemo will shrink the main tumor as it will also shrink the mets?  My husband's tumor disappeared thru chemo, but he did have a colostomy put in place due to the possiblility of a blockage before the chemo took effect.

Nick5407
Posts: 2
Joined: May 2016

Thank you all for your input. I am very fortunate to have a tremendous support system of family, friends and colleagues, with the charge being led by my wife. As I have learned early in this process, a good attitude and faith go a long way!  Starting with the chemo instead of surgery was where my wife and I were in agreement, but wanted to open it up for input from others who had experience fighting this. My primary tumor seems to have responded well to the initial chemo and radiation, as it is now near flush with the surrounding tissue. I have not been able definitively confirm that as no scans or tests have been done yet. 

swimmer22
Posts: 60
Joined: Oct 2011

First off, I am so sorry you are facing this health issue at such a young age. However, as another poster said, your young age and positive attitude can greatly help in your cancer fight!  My opinion is different than what you have received but felt compelled to share. Surgery to treat cancer is considered by many the gold standard in cure/remission. A positive response to the chemo radiation treatment is wonderful- so why not follow-up with surgery to remove tumor scar tissue and microscopic cells within the tumor margin.

I was diagnosed stage IV at age 46- coming up on 6 years ago. I had rectal cancer and lung mets. I first had surgery to remove the lung mets, 6 Folflox treatments, and then the 28 days chemo radiation for the rectal cancer. Like you, I experienced a positive response to the chemo/radiation.  I then moved to surgery to remove the tumor scar. I too had an ileostomy for just about a year.  Following my rectal cancer surgery, I completed 12 treatments of Folfiri.  Then had my ostomy reversed. 

I am very fortunate to say, all scans and tests post-surgery have showed no evidence of disease (NED).  I was treated at a large cancer institute-- I attribute my success to faith in God, great surgeons, and doctors. I was told initially, surgery is optimal and have it if you can. Removal with clean margins is what to aim for, then chemotherapy to attack microscopic cancer cells in the blood.

At the end of the day, you need to do what is best for your peace of mind. Just please don't be short-sighted and put off by the idea of an ostomy. Many Stage IV cancer patients want surgery and are unable to find those experienced surgeons willing to complete it. Granted, an ostomy was something I never in my wildest dreams ever thought about having to deal with, but at the end of the day it really wasn't that difficult. Like you, I was an active male and honestly the ostomy didn't slow me down.  I biked, swam, and still enjoyed activity with the ostomy. Adaptability was key along with a positive attitude.  Best of luck in your treatment!

 

lizard44's picture
lizard44
Posts: 336
Joined: Apr 2015

I'm sorry you  are going through this and having to make such decisions at such a young age and with a growing family.  I hope your treatment goes well and that you feel confident with the decision to go ahead with chemo.  I was diagnosed with rectal cancer a year ago, with mets to the liver.  My medical team is going with a non-surgical approach for now and it  has allowed me to receive both  8 rounds of  FOLFOX plus Avastin, and 28 radiation treatments  with 5-FU.  The rectal tumor has shrunk so that the last two CT scans state it is "not well seen" although the liver mets has  grown.  I'm now on irinotecan and cetuximab (Erbitux) and have received  four treatments.  I've  been feeling pretty good thouroughout treatment with minimal side effect and a good quality of life.  So far the Erbitux rash is the worst side effect I've had, and it is now under control with prescription drugs that have reduced the dreadful itching. I've been able, by pacing myself, to   keep up  activiites like gardening, attending events, shopping,  and all the other daily activitesthat old folks do. Memorial Slaon Kettering has been conducting trials with  rectal cancer patients using a non-surgical management approach.  I haven't seen any results   published yet, but my surgeon attended a conference where it was discussed and he is very enthused about it for certain patients, including me.  Here's a link to the study, if you're interested, although I'm not sure how to  make it a link, it's more like a cut and paste.

https://www.mskcc.org/clinical-updates/toward-curing-rectal-without-surgery

Again, good luck with your treatment and hang in there.

Grace/lizard44

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