Stage 4 Stable ?

[Alreadyhere]

Hello everyone. DH has been stage 4 since 2012 diagnosis. He has been stable for several years , since 2016, and has been off all treatment for an entire year. The dr has moved him to yearly scans vs every six months and asked if he’d like his port removed. He is Leary on removing it if he will need it again in the future. Is this a situation where they can ever say will be cured or is that only for those who have no evidence of disease. He is an olymphian, and no organs are involved. However the distant lymph nodes that are involved are always present, treatment has not affected them but they also have not grown whatsoever. Any insight would be greatly appreciative as his dr does not give us a response other than “it is in God’s hands not his” .

[Nohogirl]

Hello and happy to hear your husband is stable and doing well. A question though. How do they know.the distant lymph nodes were cancerous and not inflammation. Did they biopsy them?

[Alreadyhere]

Thanks for your response. They actually never biopsied them except for the ones removed during the original colon resection in 2012. At the time he had 2 large distant lymph nodes remaining that could not be touched do to close proximity to aorta. They have essentially stayed there and occasionally spread up and down that chain which he has combated with radiation. I believe they are assuming they are cancerous as they have remained for so many years and originally were growing and shrinking. Tho some now have signs of necrosis. He has never had organ involvement but did have bone metastasis that was resolved several years ago, though the distant lymph nodes remain.

[stu]

Just want to say that your husband’s story is quite incredible. I wish you both well .
Sorry I can’t be of any direct help but it amazed me to read this .
Stu

[Brearmstrong]

Hey there Alreadyhere,

I have only distant node spread as well but I had them surgically removed. Even with them removed (5 of the 8 were cancerous and thus made me stage IV) I am still on chemo likely forever or until something new pops up and then who knows what the plan will be as I'll be out of chemo lines... I guess what I'm saying is that both MSK and my team at Smilow Cancer Center both agree that I'm still considered incurable and just hoping to keep treating it and keeping it from spreading to major organs or to nodes that can't be removed or radiated. Mine were by my aorta and difficult to remove but my surgeon is a rock star! No talk about my port even being removed even though and I'm just on oral xeloda and don't qualify for immunotherapy so maybe they are letting me keep my port so that I keep hope... who knows... You guys need to decide what's best for your situation and comfort level. Does he have PET scans and if so, are the nodes lighting up? My SUV in my nodes was 12 which was HIGH so there was little discussion that they might just be inflammation. Wish you the best!!

-Brenda

[jep]

Hey everyone,
Just want to chime in here, as my husband is currently in a similar situation. We just met with his surgeon today, and he feels that surgery is doable, but very risky given the nodes close proximity to his aorta. I was not happy to hear the work "risky" . . . I know that all surgeries are risky to some extent, but after his emergency surgery back in May 2017, I figured nothing could be more intense and scary. We did meet with a doc at MSK; both the oncologist there and the surgeon agree that surgery is possible. All want him to finish his chemo, have a scan in April, and then we can decide what to do. The nodes have not gotten smaller or bigger . . . I feel like we're in limbo and we just don't know what to do at this point. My husband wants them OUT, and of course I support whatever he decides . . . I'm just honestly really scared right now
Any input or thoughts would be greatly appreciated.
Thanks so much,
jep

p.s. Brenda, may I ask where you had your surgery with the rock star surgeon??

[dliu]

Any insight would be greatly appreciative as his dr does not give us a response other than “it is in God’s hands not his” .

I'm sorry I don't have an answer to your query but I can't stress enough how an answer like this from your doctor really unnerves me. I had a similar situation with our oncologist, when I asked about potential liver resectability after treatment. He said "perhaps if your dad is looking down from above he'll make a miracle happen". I understand it is a nice way to say "it is unlikely", but I don't really think this is ever appropriate if you're openly asking for straight answers.

I am sorry this is happening to you!

[boxhill]

Has this doctor discussed possible courses of treatment going forward and the studies that support why they might work for your husband? Does he have any idea about what might get your husband to NED? That's what I'd want to hear from him, not remarks about"God's hands." Personally, I'd be looking for a second opinion from a major cancer center, at the very least. (Actually, I'd be telling him that such passivity and religiosity doesn't sit well with me, or firing him, but that's me and we are all different.)

[lovelife789]

Hi Alreadyhere,

I just went to my consultation today, thought I can share a few points for reference.

1. A lot of patients stay stable for a long time (longer than 5 years) and is seen as equivalent to cured.

2. It's not necessary to resect the nodes if they are no longer active. The nodes sometimes can be seen as harder to reach R0 than the mets in organs depending on their locations. So sometimes resecting them but with positive margin can "wake up" the cells.

3. He has seen many patients go recurrence free for more than 6-7 years. From his view, it's very close to cured.

I know your husbands situation is a bit different. But I can understand why you want a resection, I thought sharing these may give you peace of mind.

Good luck!

Lovelife

[fumaros]

It is amazing to hear your good news, and that is a good dilemma to confront.
Stage IV is often considered as incurable, but the longer out he is from activity of the disease then that is the goal. If those lymph nodes are removable, particularly through laparoscopy or some other not to invasive surgery then it would be a good feeling to remove them. Otherwise, if the disease is not impeding his life in any noticeable way, then it is good to live a healthy lifestyle, stay health and keep checking in with the oncologist regularly.