Still longterm NED after a lung met

[stu]

Hi,
The first international clinics trial is underway . Comparing surgical removal with the control arm being observation and if the disease progresses you will be removed from the trial and reviewed for treatment options. I have no idea how this got through ethics but it is an international trial running to 2020. The aim being to see if surgical intervention is the the best treatment option.
They tried to sign my mum up to it as she had a solitary slow growing met. However it was the first time she has been operable without chemo and having spent years trying to keep the disease under control she wanted it out before it became invasive. However it also injected a lot of doubt and it was singularly the most stressful consult she has had in seven years. My husband is a consultant and able to guide us through the other side but not everyone has this resource.
Whilst acknowledging the scientific need to answer the question on efficiency its a big ask of a stage 4 patient when there is already a lack clinical pathway to follow and each step a clinical judgement. What if it becomes invasive does the surgical option pass you by? Just something to consider as I initially thought it was a UK trial but then noticed it was an international trial.
Certainly gave us a lot to think about. This was the easiest surgery she has had . She will be scanned in August.
Kind regards
Stu ( Lynn)

[tigerpaw]

I discussed surgery with the leading thoracic surgeons in both departments at Oslo university hospital which perform metastasectomies. They are willing to operate if the metastases grow and reach a size of 1-2 cm. SBRT may also be an option. But it seems as if my lung mets are really slow growing, no change in more than a year. I don't think chemotherapy at this point in time would change my prospects significantly.

One of the surgeons told me that the surgeons responsible for the PULMIC trial which Stu mentioned, noticed that some people with lung mets lost to follow-up still did fine when they were finally tracked down and re-examined.

And yes, Mys, I am a Norwegian- Norwegian.

Kristin

[Annemiek]

Fitflops, never heard of them, they look good! I've been having a hard time finding shoes, my pumps are now useless, they hurt too much and don't fit with the orthopathic soles I've been fitted with, size 43 doesn't help.
My chemo brain is still there, and gets worse if I'm physically tired, and short term memory are still shot to pieces.
Other than that, I'm back at work, colostomy is behaving, we're about to gi in holiday to the states. Life is sweet.

Thanks for the shoe info!!
Annemiek

[cecioboe]

Fabulous news!! Thanks for sharing.

Continued good health to you.

[Pita]

(((Mys))) here's to you and job, friends and love!!!

[teri3]

Wonderful news as very happy for you. Your story came at a good time for me , I've been dxed with a .8 cm malignant nodule in both lungs. I know a bilateral recurrence isn't as good as a singular but at least I have some hope. I'm waiting to talk to my oncologist Thursday. Prayers for your continued NED.

[Sams wife]

Thank you!

Crazylife: my impression is that it's common to watch and wait a bit after a pulmonary nodule is found.

In my case, the doctors weren't sure if the nodule seen was indeed a met (I had another small nodule that had been there all along during chemo, not changing size. It was later removed and found to be benign). At 5 mm the nodule that turned out to be a met was to small to be diagnosed via PET-scan, so waiting gave more information (if it grows, it is more likely a met). I think that the main reason for waiting may have been to see if other lung mets appeared so that they could be removed at the same time. They also had me do a PET-scan to rule out metastatic activity elsewhere before surgery. In my case, the six month wait has seemingly worked out fine. I don't think there are enough studies to say exactly when suspicious nodules should be removed, but I didn't want to wait any longer than six months myself (the surgeon actually wanted to wait even longer, but I pushed for surgery and got it).

Exciting news! I was gonna ask the same thing. My husbands just grew from 4x4 to 5x5. But a lymph node by it also grew some. I'm glad you decided to show up at this time. I was wondering about a pet scan. He's never had one.
And it is 6 months later. I'm not happy about waiting much longer either!