The Colon Club

I'm trying to find some words to comfort my friend with stage IV rectal cancer. It would be so helpful to talk with or hear from someone that is going through this or, hopefully, that has overcome this. My friend has many lesions in the liver and both lungs, is inoperable and is on chemo indefinitely. Luckily, he has no pain yet. Would love to hear from others out there.

Do you know specifically how many tumors he has in each place? Although historically mets to liver and lungs meant "the end of the line" that is not necessarily the case any longer.

Depending on a lot of factors, but mostly the number/size/location of the tumors, it could be possible to deal with both sites. Systemic chemo can sometimes shrink mets enough to become operable - and some are already small enough to be attacked with new types of surgery and interventional radiology.

Let me know more about his situation, and I will try to help more. Also, I just found out about a site that you might want to check out that is specifically set up for patients who have been "written off" - www.ifadd.org. Their website says "IFADD fights for the lives of late-stage cancer patients by helping to manage the complexities of their disease with cutting-edge information and the most relevant resources to be found anywhere."

Lastly, I just emailed an 8-year stage IV survivor in Los Angeles to check out your previous post about finding someone in L.A.

Hannah

Hanna
thanks for the referral. I checked out the site and it looks promising.

Mark has so many lesions that the doctors cannot count them. He is not eligible for surgery. This has been confirmed now by four doctors - two in one hospital in L.A., one on the other side of town and one in Portland Oregon who specializes in cutting edge ablation treatments and resections.

I wanted to know if there was anyone out there who had been given such a similar outlook that has recovered. Thanks and hope to hear from more.

hi,
how about hepatic artery pump for mark along with systemic chemo to help shrink liver lesions? if he could do that and have significant shrinkage then maybe he would be operable. i wish i had something to help you the only other thing you could do would be to mail marks records to md anderson and maybe they can just reveiw scans to see if they can offer opinion call them and see if it is possible without bringing him there.

missjv

If there are numerous small tumors in both lungs and both sides of the liver, there are definitely not a lot of options for a cure at this point. However, there is always hope - there is still hope for a cure, and after that is gone there is always hope for a good quality of life, regardless of how long or short that might be.

Surgical removal is still the best chance for long-term survival, so if that is what he is still working towards, his concentration should be on trying to get those spots to the point where they could be surgically removed.

I am guessing that is what he is already being told, and it is probably correct from the limited info I have. I would guess that his best - or only - choice is to have systemic chemo, which I think you said that he is having. From that point, the hope is for the miracle that some of the spots will shrink and/or disappear in at least one of the locations (lungs or liver) to the point where they can be surgically removed. With systemic chemo, there is a chance (although to be honest it is pretty small) that this could happen. If it happens in either the lungs or the liver and the tumors at the other site don't grow, he could be in a position to reduce his situation from two metastatic sites to one. IF all of this happens, that means that he then only has to deal with the lung or liver, which is good.

Obviously this is a lot of "ifs" and "hopes" and "maybes" - and believe me, I know first-hand how hard all of that is to hear about someone you love. I do not take it lightly for one single second. I believe so deeply in always having hope, but what "hope" means can definitely change as cancer progresses. I like to be realistic and educational, and to continue to hope while not giving false hope (the kind that wants to believe something that is next to impossible).

Again, I know how crappy this all is - I hate having so few options, and such bad options, for people we love. I also hate the "wait and hope" aspect of this disease - just do the chemo and wait around and hope that the tumors might shrink or maybe even, hope beyond hope, disappear completely!

All of that said - YES, this does happen for some patients, and it is happening more and more often with the number of drugs that we have available to fight metastatic colorectal cancer. It sounds like your friend is doing all of the right things, making sure he has the education he needs, and getting second opinions. As long as he has a doctor who is up on the latest things and is not afraid to use combinations of chemo, surgery, radiological intervention, RFA, etc, he is probably in good hands.

Please keep us updated and let us know if there is anything else we can do.

Hannah