Fighting4hubs wrote:H... a 3-4 tumor in his sigmoid colon.
We prepared ourselves for surgery & the chance that this may have spread to other organs & be a stage 4 - however we were completely shocked and unprepared to be told a CT scan has confirmed a second "soft tissue mass" in the lymph nodes next to the Aorta (I believe this is called Para Aorta?) this mass is 5cm x 3cm x 2cm
He said he believes this to be the lymph nodes coming together and creating another tumor and cancer spread.
That's also called a conglomerated mass (a cluster of nodes and gluey-weblike materials). The ordinary cyclic chemo treatments often weren't good at controlling para aortic nodes lymph metastases long term. Mild, continuous, immune and immunochemo treatments were an immediate priority for us, from day 1. (much of Life Extension + more)
The surgeon basically said there is nothing he can do for the bowel and surgery is not an option as it's spread .
Yes, they usually will not operate on the para-aortic lymph nodes and may not admit that it is possible, but it is possible. We got both resections done, the aorta part with difficulty (finding a real top gun). The first surgery was due to near total obstruction at diagnosis, but we managed to pre-treat it for a few weeks on immune therapies (like Life Extension with add ons) with a good result. Then a year later, with metronomic chemo and immune therapies at work, the para-aortic nodes. In some countries, the initial surgery may be historically easier to get because chemo is more expensive than surgery, more painful (no port) for "chemo forever".
The real issues involve treatment potency vs mildness, continuous treatment, endurance, and long chemo gaps near surgery. They can all be overcome but they are not standard
and offered at the first clinic. Basically they've often been giving up on patients without a realistic attack on these problems. You have to advocate.
...we have not been given a plan and just kept being told it's not good news and there is no cure!
We had to develop a plan for ourselves, after rejecting the norm, which we considered short term oriented, harsh and unaffordable.
I've spent most of my time on google trying to find some answers for him & a plan - I seem to be reading a lots about Chemo and Avistan?
Normal in 2010-12 was Folfox-Avastin then Folfiri-Erbitux (if Kras wild). More experimental drugs may be available now. We more followed the international literature, forums, and independent sources for more QoL and cancer inhibition.
Is surgery an option near the Aorta & What about Biopsy etc to see more on that Tumour?
Both near the aorta, and a block cut through an involved aorta, are possible (the aorta has to be patched). Just not every surgeon can or will do it. An MD Anderson surgeon might be good enough, we actually skipped the MDA trained guy, who was reluctant near the aorta, and used a Japanese trained talent who could do p-nodes like Zorro (almost a quick flick). The surgery is the biopsy and part of it can be shipped off to laboratories for chemo tests, even as a living tissue (we did this) arriving within ca 24 hrs.
We have not even met with an oncologist yet & no one seems to be contacting us! I spend most of my days on the phone trying to get help and someone to give us some answers !
It's easy to fall between the cracks once you deal with less familiar situations that have no good and easy answers.
If you go to a major cancer center, they'll have their
plan(s). At some level of expertise, multiple opinions and options are possible. Time, money, knowledge, communications, and self advocacy become the limits.
It's like we have been told it's spread and that's that and we've been sent on our way!
You have to find people that will actually help and do your own homework.
...something the size of 50mm is clearly not a good sign.
In our case, there was a lot of initial confusion and misunderstandings because of both the para aortic nodes, 25 mm at diagnosis, and other features that had receeded under immune therapy before first surgery. Basically, a year later they typically were not not eager on the p-nodes, ordinary surgeons washed their hands of us. As practical matter, one year in, it was important to focus them (insurance, drs) on the p-node cluster as a single active site, because even 6 years ago there were some successes reported in the literature.
The conglomerated cluster removed six years ago was 6+ cm and loaded with cancerous nodes, with extensions.
Some oncologists would rub their hands together while giving narrow, ugly options while failing to consider other promising treatments, both initially and a year later. We never talked to them again.
What we decided to do was something like ADAPT with more goodies until the biomarkers (CEA, CA199, LDH) stopped climbing or went down. A lot more goodies (a mild drug cimetidine for CA199, and high potency supplements, some beyond the Life Extension doses). And use medical services, and natural medicine, a la cart. We realized early on, what the journals call a "multimodal" treatment approach could be necessary.
You might want to search and read some of my previous posts, too.