New Diagnosis: Aggressive Stage Iv W/ Liver Mets

Hi,

My husband is 45 and has been told that he likely has Stage IV rectal cancer with mets to the liver.  We have five children.  We found out when he had a CT scan to see if the back pain he was experiencing was related to a kidney stone.  He had been hospitalized in September 2007 for his first kidney stone and the CT scan was clear then.  The scan on 13 Feb showed rectal thickening, mulitple hypodensities in the liver and visible presacral and perirectal lymph nodes.  We were floored.  He had been having some bowel symptoms for about 4-6 weeks (bloating, constipation, irregularity, infrequent blood on the tissue and stool that he thought was related to a hemorrhoid).  There is no family history of any kind of cancer.

 The urologist sent us to a local colorectal surgeon who told us that there was "no urgency" in getting in for a colonoscopy!  He scheduled the scope for the 27th and then had his office make appointments with the radiation oncologist on 3 Mar and the medical oncologist on 6 Mar.  We were concerned about the "no urgency" statement and made some calls.  With the help of our internist, who is anamazing advocate for us, and connections in the research community we were able to get him into Fox Chase Cancer Center this week for a scope and first meeting with the oncologists.

I trained as a nurse and have worked in pharmaceutical research for 20 years so I "know too much".  I am actively forcing myself to focus on the idea that while the 5 year survival rates are not good for this diagnosis, there is no reason why my husband can't be one of the ones that makes it.

Even though we haven't had the scope yet he did have MRIs of the abdomen and pelvis.  The abdominal MRI showed 6 lesions in the liver with the largest being 5 cm x 5 cm x 4 cm.  The local surgeon stated that he expected my husband would need chemo and radiation before surgery.

We have no idea how this could have gotten so bad so fast!  Because of his youth we're looking to be as aggressive as possible.  We're starting at Fox Chase in Philadelphia and will also seek consults in Pittsburgh because we have contacts to the cancer center at Pitt and we know that there are some very aggressive liver surgeons out there as well.

I would be interested in any suggestions regarding nutriotional support.  He has lost 25 lbs since January but we have been able to slow down the weight loss and keep his weight relatively stable by adding Boost and Ensure to supplement his caloric intake.

I am so thankful for this community because we are holding on to the fact that there are people on this board with success stories.  We know we have a tough road ahead but we have vowed to fight every step of the way and knowing that there is hope means so much to us. 

As you can tell, I am feeling a little scattered right now.

Juliet

 

Juliet,

I sent you a private reply.

Jaynee

Hello,

I was diagnosed in August at age 41 with stage IV rectal cancer w/ mets to both liver and lungs.  Now, 7 months later, I am considered cancer free- there is hope!  My progress has amazed all the doctors, but they say it is starting to become more common.  My oncologist also told me to ignore the 5 year survival statistics I read on the internet, not only because they are depressing, but because they are based on statistics of patients who were diagnosed and treated prior to some of the newer drugs coming out.  The newer drugs don't have 5 year survival statistics yet because they haven't been out long enough yet.  I was treated with "Foxfox plus Avastin".  I had a total of 10 rounds of it, once every two weeks.  I went from 12 tumors in my liver and several small nodules in my lungs down to everything gone in my lungs & just one tumor still showing up in my liver- but it doesn't show up at all on the PET scan, which means it's now noncancerous. 

I'm currently halfway through radiation and low dose chemo (6 weeks worth) & will have surgery on the original rectal tumor site 4-6 weeks after radiation ends.  After that, they will relook at my liver to see what, if anything shows up. If there's still something there, even "noncancerous", then I'll probably have cyberknife on it.

I was told that even if nothing shows up on the PET & they call you noncancerous, that there still can be microscopic cells there & that's why I'm still getting the low dose chemo during my radiation.

Fortunately, I haven't had the weight loss issue- I've actually gained a few (much to my dismay, but I suppose given the scenario, that's better than losing).  Anyhow- I know there are several nutrtional supplements available for the weight loss- keep experimenting with those.

God bless you both- I will keep your husband in my prayers.  The Lord has been amazing in the past few months of my life!

Best wishes-

Lisa 

 

 

Update:  My husband underwent his colonoscopy and biopsy on 29 Feb at Fox Chase Cancer Center.  The bx came back this week as adenocarcinoma (don't know the grade yet).  The docs at Fox Chase have been great and are being as aggressive as we had hoped for.  My husband got his port on 05 Mar and started his chemo (FOLFOX + Avastin) the very next day.  He just completed his first infusion yesterday.  The surgeon at Fox Chase looked at his films and said that even though there are at least 6 mets in the liver she thinks he is a candidate for resection because 4 are in the left lobe and the remaining 2 are in the segment adjacent to the left lobe (none appear to be on any major blood or bile vessels).  The surgeon changed my husband's treatment plan from 8 weeks of chemo then restaging to 4 weeks of chemo (2-2 week cycles) then radiation then at least 2 more 2-week cycles of chemo and then surgery.  We also found out that his chest CT is clear.  So far as bad a prognosis as we expected with Stage IV rectal cancer with mets to the liver, we actually got some good news this week.  God bless the folks on this board for their support and the folks at Fox Chase for caring so much.

 

On 3/6/2008 lisaann wrote:

Hello,

I was diagnosed in August at age 41 with stage IV rectal cancer w/ mets to both liver and lungs.  Now, 7 months later, I am considered cancer free- there is hope!  My progress has amazed all the doctors, but they say it is starting to become more common.  My oncologist also told me to ignore the 5 year survival statistics I read on the internet, not only because they are depressing, but because they are based on statistics of patients who were diagnosed and treated prior to some of the newer drugs coming out.  The newer drugs don't have 5 year survival statistics yet because they haven't been out long enough yet.  I was treated with "Foxfox plus Avastin".  I had a total of 10 rounds of it, once every two weeks.  I went from 12 tumors in my liver and several small nodules in my lungs down to everything gone in my lungs & just one tumor still showing up in my liver- but it doesn't show up at all on the PET scan, which means it's now noncancerous. 

I'm currently halfway through radiation and low dose chemo (6 weeks worth) & will have surgery on the original rectal tumor site 4-6 weeks after radiation ends.  After that, they will relook at my liver to see what, if anything shows up. If there's still something there, even "noncancerous", then I'll probably have cyberknife on it.

I was told that even if nothing shows up on the PET & they call you noncancerous, that there still can be microscopic cells there & that's why I'm still getting the low dose chemo during my radiation.

Fortunately, I haven't had the weight loss issue- I've actually gained a few (much to my dismay, but I suppose given the scenario, that's better than losing).  Anyhow- I know there are several nutrtional supplements available for the weight loss- keep experimenting with those.

God bless you both- I will keep your husband in my prayers.  The Lord has been amazing in the past few months of my life!

Best wishes-

Lisa 

 

 

Lisa,

I would like to know where you are treated.  My husband has the same diagnosis except the spread to liver is not confirmed.  His tumor recently spread to his right lung (not affected when initially diagnosed) during his recovery from his surgery of his left lung.  He was then given chemo (the same thing as yours) last Friday but could not tolerate FOXFOL because he experience vasalspasm that could lead to heart attack.  The chief oncologist sounded grim.  He is 46 and relatively strong.  I think if we find the right place and the right team, he may have a chance.  I am not giving up yet but he is really depressed.

God bless.

Cecilia 

 

Hi Cecilia,

I've been treated through Pacific Oncology in Vista, CA (north San Diego County).  I also have seen two specialists at UCSD in La Jolla, CA (Moores Cancer Center).  Since I wrote last, things have changed a little for me, though.  The CT/PET scan I had in January was apparently done without contrast (the CT portion of it) & I was told I only had one spot on my liver that showed up on the CT, but not the PET.  Well, I just had another CT (they didn't do a PET again yet- insurance reasons) & this time 3 spots showed up in my liver.  Upon carefully re-reading the report from my January scan, I discovered that there was no contrast given & they called it a "limited CT".  It turns out I don't have new liver lesions- they're in the same place as an earlier CT I had in Nov.  I was bummed that I was given false info based on a bad scan!  Anyhow- I am now scheduled for a liver resection on May 23. I have decided against having Cyberknife (as I had mentioned as a possibility in my other posting).  With other liver tumors that had shrunken away during chemo, I felt that liver resection vs. cyberknife would possibly better address any microscopic cancerous cells that may remain where I previously had tumors.  Also, my liver specialist said that it's happened to him before where during surgery, he discovered additional tumors that never showed up on any CT's.  When he does my surgery, he'll use a handheld ultrasound device to check out my entire liver.  Hearing this is what made me decide on the liver resection.  Dr. Andrew Lowy of UCSD will be performing the surgery.  I know he was at MD Anderson for a while before coming to San Diego & also in Cincinatti- anyone know of him or his work?  Anyhow- not to give you depressing info, after I was so excited with my news in my last posting.  I still have good news re. not needing the rectal resection- that tumor did completely disappear!  IMRT radiation, if radiation is needed, is definitely something to talk about to your Dr.  I had 28 doses of it for the rectal tumor (along with weekly cisplatin infusions- which caused neuropathy- that's another story).  But, anyhow, I tolerated the IMRT radiation very well- I didn't have any burned skin until the very last 2 days of treatment & only about 3 days of diarhhea, when I was told it could be a lot worse.  Comparing my situation to others I know of who had traditional radiation, I believe the IMRT radiation was a definite blessing.

Best wishes to you!!

Lisa