colon cancer stage 4 liver mets

   I am sorry that you have to come looking for us, but alas, you have and you won't regret joining our lovely little group. 

It sounds like your wife may start chemo treatment to shrink her tumours, and then they can assess to situation and see if they are operable. So, you are quite right to not give up on your dear wife of 30 years (I too just celebrated 30 years with my hub). 

Post often, and with as much information as you can, so that we can help you along the way. There are lots of us here, so you will find someone who is going through pretty much what your wife is. 

Trubrit

I was told not operable too when first diagnosed, that was over 5 years ago, I had mets in more then in liver and ended up with my operations and the gift of a longer life here on this earth, so don't give up hope.  Things change as time goes by and chemo does it work.  I did chemo for 9 months before first surgery.

I'my sorry about your wife's diagnosis, but I'm glad you found us.

If you have any specific questions, let us know, many have been there done that, some of us a few times.

Winter Marie

While I am certainly sorry to be here, I cannot stress enough what an amazing resource this place is.  Folks are knowledgeable and just great people.  You will find a lot to be hopeful for.  As for your current situation, it's quite common that treatment needs to begin before surgery is an option for any number of reasons.  I hope that your wife will respond well to treatment, and that the option for surgery will be available soon!

janderson1964 said:

Welcome to the forum. I am

Welcome to the forum. I am sorry about your wife. You have the right attitude. I hope she does too. This site is a good resourse for information and to just vent if you need to. We understand. Your should be optimistic. I am stage IV 9 1/2 years since diagnosis and there are other long term stage IV survivors on here as well. Longer than me.

Hello. Welcome to the forum. So sorry you have to be here.  It's not a club anyone wants to join.

I agree with everyone else who has posted here. There may be some hope. Or there may not be. It all depends on spread and location. 

Questions for you - which you don't have to answer if you don't want to reveal much personal information.

Where do you live (ie what state), and what sort of doctors are giving you this prognosis? Are you in a rural area visiting a community hospital, or are you near a major city and going to a hospital with a solid reputation in cancer treatment?  LIke someone said earlier, where you go and your first opinion really matters.  From personal and family experience, local hospitals aren't the way to go.  Medical care varies greatly across the United States, and if you can afford it, do the research and take your wife to a decent cancer care hospital, if you're not already going to one.  There are people here on the forum from many parts of the US who can give recommendations, based on their own experience. 

all the best to you and your wife

Karin

mom_2_3 said:

James

I am sorry that your wife is not currently operable.  There may be a few reasons she is currently inoperable including multiple locations (organs) with disease, number of liver mets (remainder of liver may be smaller than 20%) and location of tumors (ie too close to an hepatic artery).

That being said, just because she is inoperable now does not mean that she will always remain as such.  There are a couple of items to consider.

1.  You didn't mention whether she has started treatment.  It is quite possible that treatment will decrease the size/number of liver mets and she will become operable.  I would seek second opinions now or immediately after first scan (usually after 4 treatments) as the liver may become damaged over time from treatments and resection may be impossible due to compromised liver.

2.  Make sure any opinions regarding her operability are from a hepatabiliary surgeon.  Do not rely on a general oncological surgeon for opinion.  The extent of any liver resection can depend upon skill and past experience of the surgeon.  During my surgery I had the liver surgeon go first and then when he was done the colon surgeon came in and did his part.  My liver surgeon does over 100 liver resections per year.  This is more than some hospitals do in a whole year.  An experienced liver surgeon is crucial to success.  

This is also true of oncologists.  The first oncologist I consulted with had 0 (zero) colon cancer patients alive after 2 years.  He did not specialize in any particular cancer.  I found a new oncologist that specialized in colon cancer with mets to the liver.  She has tons of long-term patients.  Make sure the oncologist has a specialization in colon cancer.

3.  There is a treatment protocol called HAI (hepatic arterial infusion) which uses an implanted chemo device routed directly to the liver.  This protocol can be used to make formerly unresectable patients able to have liver resection.  See:  http://www.mskcc.org/cancer-care/doctor/nancy-kemeny.  This is my doctor and she specializes in HAI.  There is an informative video of her on the bottom of that page.  I am not sure of your proximity to NYC but many travel to Memorial Sloan Kettering for initial treatments and receive additional treatment at home under her direction.

4.  There are alternatives to liver resection for the treatment of liver tumors including RFA and SirSpheres treatments.  Google them.  While not the gold standard that liver resection is, these other treatment options can have positive impact on disease burden.

 

Have hope but do not relax in your quest for a cure.  Go for the best treatment first as one can never predict whether a person will have a negative impact to a treatment and be ineligible for other treatments as a result.  I do believe that the first place you go can make all the difference.

My own situation was that I was diagnosed with 5 liver mets across both sides of my liver, the larges being 5 cm.  I had no other disease sites other than the original colon.  After 1 year of treatments including systemic chemo (FOLFOX), colon/liver resection, HAI implantation and liver specific chemo, I was NED (no evidence of disease).  This was in 2009.  As of Feb 2015 I have been in remission for 6 years.  There is hope.

 

Best of luck to you and your wife.  Please PM me if you want further detail or would like to chat by phone.

Amy

James, this is the best advice you can ever hope for.  Amy has nailed it.  Get an optimistic specialist involved from the start, it WILL make all the difference.  Best of  luck.

Linda

james1113 said:

your story

Hello Marie I have read your story you are a survivor you been threw so much, but seem so strong you live more in a day then most live in there whole life! Keep keeping on my prayers are with you . james 

I appreciate that.

Winter Marie

mom_2_3 said:

James

I am sorry that your wife is not currently operable.  There may be a few reasons she is currently inoperable including multiple locations (organs) with disease, number of liver mets (remainder of liver may be smaller than 20%) and location of tumors (ie too close to an hepatic artery).

That being said, just because she is inoperable now does not mean that she will always remain as such.  There are a couple of items to consider.

1.  You didn't mention whether she has started treatment.  It is quite possible that treatment will decrease the size/number of liver mets and she will become operable.  I would seek second opinions now or immediately after first scan (usually after 4 treatments) as the liver may become damaged over time from treatments and resection may be impossible due to compromised liver.

2.  Make sure any opinions regarding her operability are from a hepatabiliary surgeon.  Do not rely on a general oncological surgeon for opinion.  The extent of any liver resection can depend upon skill and past experience of the surgeon.  During my surgery I had the liver surgeon go first and then when he was done the colon surgeon came in and did his part.  My liver surgeon does over 100 liver resections per year.  This is more than some hospitals do in a whole year.  An experienced liver surgeon is crucial to success.  

This is also true of oncologists.  The first oncologist I consulted with had 0 (zero) colon cancer patients alive after 2 years.  He did not specialize in any particular cancer.  I found a new oncologist that specialized in colon cancer with mets to the liver.  She has tons of long-term patients.  Make sure the oncologist has a specialization in colon cancer.

3.  There is a treatment protocol called HAI (hepatic arterial infusion) which uses an implanted chemo device routed directly to the liver.  This protocol can be used to make formerly unresectable patients able to have liver resection.  See:  http://www.mskcc.org/cancer-care/doctor/nancy-kemeny.  This is my doctor and she specializes in HAI.  There is an informative video of her on the bottom of that page.  I am not sure of your proximity to NYC but many travel to Memorial Sloan Kettering for initial treatments and receive additional treatment at home under her direction.

4.  There are alternatives to liver resection for the treatment of liver tumors including RFA and SirSpheres treatments.  Google them.  While not the gold standard that liver resection is, these other treatment options can have positive impact on disease burden.

 

Have hope but do not relax in your quest for a cure.  Go for the best treatment first as one can never predict whether a person will have a negative impact to a treatment and be ineligible for other treatments as a result.  I do believe that the first place you go can make all the difference.

My own situation was that I was diagnosed with 5 liver mets across both sides of my liver, the larges being 5 cm.  I had no other disease sites other than the original colon.  After 1 year of treatments including systemic chemo (FOLFOX), colon/liver resection, HAI implantation and liver specific chemo, I was NED (no evidence of disease).  This was in 2009.  As of Feb 2015 I have been in remission for 6 years.  There is hope.

 

Best of luck to you and your wife.  Please PM me if you want further detail or would like to chat by phone.

Amy

Hi:

I have a friend that is battling colon cancer with mets to liver.  Recently they implanted a port in his groin area for a procedure where they deliver the drugs (chemo/radiation) directly to the liver to kill the cancer cells.  He has had one treatment so far.  Recent scan showed 2 small tumors on other side of the liver.  Oncologist wants to go in throught he port again and deliver chemo meds to the tumors (embolization?). 

Now, after the extensive surgery and costs to implant the port in his groin area, they have rejected the 2nd procedure 3 times!!!  Has anyone else experienced this type of BS from the insurance companies?  Thing is, Medicare has approved it (which will be paying the majority of the costs) but its BCBS where the hold up lies.  I am so frustrated by this and can't even imagine how my friend feels. 

Is there anyone out there experiencing the same from their insurance companies playing God?!  I would love to hear any suggestions on your experiences/success stories when dealing and winning with the insurance companies when trying to help a loved one gain cancer treatment.

Thanks,

Shelana1221