The Colon Club

I had a PET scan last week and you can see the history below. Sloane Kettering is reviewing my case as I am starting process to seek second opinions. I meet with my oncologist this week but initial call from him sounds like folfri with avastin for life and now says I am inoperable and incurable. I am just devastated and cannot seem to handle this new progression. Tumor board reviewing my info Tuesday but all I read is that too dangerous to remove. Anyone have better outcome? I did search and read older posts but anyone know a progressive surgeon that may take on a challenging removal? I don't know how large yet. Thanks for listening.

Brearmstrong wrote:I had a PET scan last week and you can see the history below. Sloane Kettering is reviewing my case as I am starting process to seek second opinions. I meet with my oncologist this week but initial call from him sounds like folfri with avastin for life and now says I am inoperable and incurable. I am just devastated and cannot seem to handle this new progression. Tumor board reviewing my info Tuesday but all I read is that too dangerous to remove. Anyone have better outcome? I did search and read older posts but anyone know a progressive surgeon that may take on a challenging removal? I don't know how large yet. Thanks for listening.

I am so sorry. I don't have any answers for you. I hope you can get some here. Many stage 4 here that may be able to help. I'm praying for you

I had spread to a para aortic lymph node and then lung mets. Once the lymph node showed up it was declared inoperable and chemo for life. I had opinions from 2oncologists and 2 surgeons and all said the same thing. I’ve been doing folfiri + avastin since the fall of 2015 and just stopped it last week as my latest ct scan showed growth so we are looking at other options now.

I am so sorry to read this. I hope Sloan Kettering can come up with a plan of action in dealing with this. The unknown is always the hardest part when dealing with this cancer. I don't have any real advice, butt wanted to give you a virtual hug.

(((Brearmstrong)))

You are in my thoughts and prayers,

Lee

Hi there, I'm so sorry about your news of progression. My husband also was IIIC and had progression on FOLFOX. He is now on clinical trial at Sloan Kettering, as he has the BRAF mutation. I want to send you a message of hope! Although yes, there is spread, I'm happy to see that you are seeking a second opinion. Sloan Kettering is one of the best, and sometimes when you get a second set of clinicians/doctors looking at your reports they might have a new or different approach. There's always hope. And I believe with all the new trials and medicines they are coming up with, even targeted therapies. Are they thinking of radiating the area? Or new drugs? Anyway, just want to lend some hope as they are coming up with new stuff all the time! Please don't feel discouraged, easier said than done, I know. It's a crazy time right now for you but once a plan is in place you will feel more in control. Don't let ANYONE steal your hope! Much love and gentle hugs to you, Mrs. Ziggy xoxoxo

Have you considered immune therapy? Maia might be able to help you if you are thinking about it. Keytreda helped BeansMama when all tradition chemo failed here. She went from surgery not an option, to now recovering from her surgery.

Lee

I got my wife's para aortic lymph nodes removed after several turndowns in 2011. There are several hurdles and they are as much or more about defensive medicine, skill, experience and adequate multimodal treatment planning, as any possible net surgical benefit/risk to you. We found a highly rated surgeon who had removed para-aortic lymph nodes many times for ovarian cancer patients and was willing to invest in our story.

First, surgeons and oncologists typically presume that p-LN have multiple metastatic sites or seedlings and that you will be on chemo for life anyway, with or without a surgery. So surgically futile in their eyes. What they fail to realize, is which chemo for control of fewer and smaller sites can be a huge difference. Of course our brand of oral chemo only cost $150-$200/mo in 2011 and oncologists couldn't be bothered either. (actually they actively ostracized any dr who did since the 1980s - it would destroy their IV services - I've been cited several examples by drs who were there). The off label generic drugs and immune supplements, ha-ha, oncs always laugh first. By the weeks before surgery, any time I talked with surgeons or insurance, I carefully called this a solitary p-LN site because there were papers by 2011 that showed some success with surgery on solitary para-aortic LN sites. ("it's operable", they may need a little guidance)

Second, they worry about the proximity of the major blood vessels. An MDA alum, a thoracic surgeon, turned me down. He cited concern that there might be involvement of the node(s) with the major vessel. I re-interviewed a week later, and told him our radiologist (with some MDA associations) said that the mass was separated - the surgeon changed his tune and said yes. However, with the surgical team at another hospital, the lead surgeon had said no insurmountable problem in any case and was prepared to remove involved mets and repair the major vessel if necessary !

Third they are worried about surprises. Since my wife had earlier peritoneal involvement they were especially concerned that about disqualifying mets being found during the surgery, an "open and close" situation. I cited the advantages my wife had had chemo wise, and her scans' absence of evidence of spread. In actual fact, the physical mass was a lot larger than the scans showed, and what the drs assumed was a solitary node, was an LN cluster with extensions - bad news in their eyes - but the surgery was already done.

Fourth, we ran various (milder) cancer related treatments as close to surgery as possible, hours and days, not weeks or months, before and after. We even got the surgical team to accept cimetidine for the surgery itself as a replacement drug to the usual proton pump inhibitor.

In 2011, this took homework, practice on interviewing skills, and shaping perceptions with several sets of drs. Each option was explored with multiple opinions and papers and it paid off. The surgeon did require us to interview their oncologists on both chemo and radiation since surgery was usually last in consideration.

Never give up hope. Incurable doesn’t mean untreatable. Treatment for us at stage IV is all about global control of the disease. If you can achieve some level of control from treatment, you can live for many, many years. Life slowly adapts to the new normal.

A big blow for you, but the fact that you have the opportunity for 2nd opinion @ Sloan is good. Hold onto hope even if not a surgical candidate now. Some good input here from folks. Also like Veckon's point.

Keep us in the loop.

Big Hugs
BS

I am sorry you received this news. Pretty tough stuff to deal with. You don’t mention your MSI status in your signature. I am MSI high. This summer I had multiple involved nodes that were growing very quickly. It went from one in April to numerous infected by July. After 2 treatments with folfiri it was evident that it failed. I had very little hope for a good outcome but I pushed for immunotherapy. After 3 rounds all of my nodes had shrunk around 50% and the largest much more! I am now field with hope for the future. Even if you are not MSI high I would encourage you to look at trial options. There might be something that could work for you. Especially as it seems your cancer is fairly active.

Beth

I am sorry to hear your news. My mum has nodules in her lungs and doc said inoperable. I do remember how disappointed we are and we did search for second opinions which told us similar results.
Now she is in Folfox with Avastin. Luckily she is doing fine temporarily. Although her lung nodules did not gone for the last CT scan, I still searching for surgery options. It is not easy but I do see hope from cases in the forum. I know lung nodules are properly very difficult to operate but there are patients who can stay with cancer for long years. Just dont lose hope yet. Take the advice and always stay positive, then search for further options. May be it can be cure or operable after few years.

I know I don't have the answers you need. But never give up fighting and looking for them. There are experimental treatments occurring around the world, keeping searching and don't give up hope.

Thank you everyone who responded! I did find out more information that there are 2 nodes with the larger one at 1.3cm. At the tumor board, more genetic testing was ordered to see if I have Braf mutation or others that might benefit from immunotheraphy. MSK got back to me and wants to see what my scans look like in 3 months and I started on Folfiri w/ Avastin last week. One sparkle of hope is that my oncology surgeon who is at the forefront of robotic and laproscopic procedures (liver resections being his specialty) did say that he's not against trying removed the lymph nodes. I'm pushing to see him as soon as possible to get more information on his thoughts/timing. I'm just worried that in three months, there will be spread to lungs or liver and then he won't consider surgery. I know this doesn't mean cure but can't long term remission even be a possibility?

They are also not against trying radiation in the future. Again, I hope they aren't just saying this as they know it will have spread by three months and are just giving me something to hang on to. I need something to hand on to though so I'll take it! I have yet to find any success stories of these para aortic node involvement (sounds like 1-2% of colon cancer ends up there as a recurrence which is pretty rare) but if there are any stories here, please please send them my way!

Rp1954- your posts are always great to read. What daily chemo is your wife currently on? How is she doing?

-Brenda

The genomic tumor testing could be important so that they can know exactly what they are dealing with and maybe better target with more appropriate chemo drugs or chemo drugs in clinical trials. TIL at NCI might be an option when they know as well.

Brearmstrong,

I am so praying that you are able to get into a trial or that they can work on what you have.
You can fight this too.

{{{ hugs }}} Having a recurrence always sucks.