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Had surgery -- now what???


Guest Hebbie

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Guest Hebbie

:shock:

Background info on me -- 33 years old, life-long non-smoker, divorced mom of a 6 year old boy......I was diagnosed in late January with Adeno. Originally believed to be Stage IA, I was very upset to hear during my surgical follow up visit that I had some lymph involvment and am now considered Stage IIIA. The surgeon is "confident" that he has removed it all and doesn't recommend any follow up treatment, but deferred to a panel of oncologist at the hospital. After reviewing my info, the oncologist don't recommend chemo, but have recommended 5 weeks of radiation to "increase the chances of not having a recurrence". Does this sound like the appropriate measures to take? I have read some information stating the chemo may also be necessary at this stage?

Any advice would be appreciated!!!

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Hebbie,

You case is EXACTLY like my moms. Diagnosed stage I. The pet scan was clear. Surgery for left upper lobe removal. Found lymph node involment at level 12 and level 5 - pathologically staged at IIIA after the lab report.

Recommendation: radiation and clinical trial with a vaccine. My mom had an agressive form large cell neuroendocrine carcinoma mixed with Adeno. I would ask about the grade. They should be able to tell by the mitotic rate (cell division rate). Also they might stain for Chromogranin and Synaptophysin (sp) to test for neuroendocrine features.

Or an Octreoscan will tell also.

In anycase my mom was all clear for a while. She went back to the Philippines. Came back a month later and her liver was 80% cancer.

Still not sure how this happened.

Make sure you get enough answers. If it does have neuroendocrine features then it can be sucessufully treated with chemo. There was a study out of Japan that indicated this. I saw the research and am still kicking myself for not trying to convince my mom more aggressively to get a 2nd opinion.

Additionally, I did not think the vaccine would work. It was supposed to target CEA, but they never tested for CEA. Other vaccine trials will test for specific targets and only proceed if they exist. This trial did no such testing.

I hope our experience will help you. Feel free to ask any other questions that may come up. In any case get a 2nd opinion at least and maybe 3rd

God bless.

John

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Hi Hebbie,

I, like you, was bitterly disappointed when the path report came back after my surgery and 2 lymph nodes in the hilar region were involved. I was restaged at IIa and informed that my chances for non-reoccurrence were now about 40-50% as opposed to 80%. Bummer! Nonetheless, my oncologist leaned toward no chemo unless a great-sounding Phase III chemical trial could be found. Same advice came from the 2nd-opinion onc in Seattle. Unfortunately, there weren't any neato-keen trials available for my stage and condition before the "window-of-opportunity" for joining a trial following surgery closed (usually about 2-3 months). Radiation was never mentioned, but I am staged differently from you.

The following is a quote from the book Lung Cancer: Myths, Facts, Choices--and Hope by Claudia I. Henschke & P. McCarthy, 2002:

Radiation therapy is used frequently at stage III, often with other treaments. When NSCLC has moved beyond the lung but is still on one side of the chest (stage IIIA), treatment may begin with surgery; afterward, radiation, chemotherapy, or both are given to kill any remaining cancer cells....p. 213

I think John's advice is vital: namely, that your first step should be a 2nd and maybe 3rd opinion. And, as John said, be sure to identify the "Grade" of your cancer, which is an indication of how aggressive your cancer is...tumor cells usually are graded on a scale of 1 to 4, with a higher number reflecting greater abnormality and hence aggressiveness. The sooner the better. There may be great immunotherapy trials or other avenues open that could be used concurrently with the radiation to enhance your situation. Best of luck to you and please keep us posted.

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  • 2 weeks later...

Thanks for your responses -- I have spoken with my radiation oncologist at length and he has recommended doing concurrent chemo as well to give it the old "double whammy". I meet with the medical oncologist next Monday and treatment should start within the next two weeks. Wish me luck! :D

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Debbie, be aware that both the chemo and the radiation will tend to dehydrate you. When you take them together it is sometimes hard to keep up the liquid intake. Lucie had both together in November and we got behind on the liquids, resulting in hospitalization for dehydration. You might even ask if a weekly IV of fluid might not be in order. That is what we would do now if we have to do them together again. Best of luck. Don

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