MR STAGE: T4 N3

Ohmy,

I just had a 9mm nodule biopsied and was told and also read that 9mm is the lower limit of what can be succesfully biopsied.  It is very small.  Mine was postive for squamous cell so I have metastasis.  Mine was in the right lung lower lobe but I also have a new nodule that is growing rapidly in the upper lobe.  My onc has a different kind of plan in mind.  I'll have a PET scan tomorrow to see if there are any other worrisome nodes or signs of new metastasis.  He plans to do the Cyber Knife treatment because I have 2 spots in different areas of the lung.  Then either chemo or immunotherapy.  I was not surprised when I got the news because I sort of expected it.  I hope you get beyond your depression.  Katheryn and others who have already travelled the road we face are a wonderful inspiration.

Katheryn,

Did you ever have immunotherapy or was it discussed this time?  What chemo did you have following the lobectomy?  It's good to know you are feeling well.  I hope you get good news from your scan.

eihtak said:

ACinNC...

Hi,

I must say that I am sorry that you as well, are facing this newest challenge. I wonder if hearing that more people are being dx with mets is a sign of more aggressive initial cancers or better follow-up care and diagnosis???

After my lobectomy, I was treated with Cisplatin/5FU (which for me is what I had the first time for my original anal cancer)  The course of chemo was a bit different schedule and lasted a bit longer. With this second more recent mets, the tumor was smaller and at the edge of the hilum (where all the complicated veins and arteries attach to the lung so really not easy to get to surgically.) I was treated with radiation "nano targeted" they claim, and meet with my doctor tomorrow to discuss the next step. Immunotherapy was discussed as the next potential treatment in my case. I believe my doctor is leaning towards Opdivo.

Thank you for the wishes for good news...so do I! However, I have become mindful of the fact that at least for me I am at a point of an unlikely long term cure, but rather finding a way to co-exist with this disease and keep on living while maintaining the upper hand. So far so good. I will let you know what I learn after tomorrow.

Actually, I do find all the current research and emerging therapies for cancer mets really facinating. I've been doing a lot of reading and think that there is great promise in the future to treat many returning cancers as more of a chronic (albeit serious) condition. 

Know that you will also be in my thoughts and prayers that there are no more new areas of concern after your PET scan and for successful treatment to follow.

Once again, I am so very thank ful to have you all and to never walk this walk feeling all alone.

katheryn

I have also wondered if getting the mets diagnosis this soon after the end of treament (14 months)is because of an aggressive cancer or because of close follow-up.  I have to say that I have received frequent scans that seem more than usual for what some survivors get.  But I would have to look at the guidelines again to see if it has been within the guidleines.  But I think my rad onc had concerns about my cancer from the get go because of my retroperitoneal node at L5.  The upper lobe nodule wasn't there 3 months ago and now it is 8 mm so that seems aggressive.

With your 2nd recurrence, the coexist viewpoint seems logical.  I believe that is what some of the colorectal survivors do with chemo.  Maybe at some point I will join that club.  We'll see how it goes after tomorrows scan.  I know if I have a local recurrence I have already nixed the apr suregery.

I was hoping to schedule an appt with Dr Eng at MD Anderson but after talking with them today and learning about out of network costs, I may have to put that option off until next year when I can get a different policy that has better out of network coverage.  I guess that's not that long to wait.  As it is, only one nodule at a time can be cyberknifed.  I had fiducials (marker pellets) inserted when they did the biopsy.  And fiducials have to be inserted at the other nodule before treatment.  The onc wants to treat the one and see how it goes before the other is made ready.  By that time it will probably be larger and have a better change at successful biopsy.

I personally want the immunotherapy.  After learning that you had a recurrence after receiving chemo for the first mets it made me lean toward that route.  Besides I got so sick with chemo and still haven't regained the weight I lost.

Thanks for your information.  If you have any articles in particular that you would recommend about emerging therapies for mets, I would appreciate knowing them.  A private message perhaps.

One other thing.  I think you mentioned a breathlessness before your latest mets.  Well I have a very mild breathlessness but even more telling is a chronic cough that I have had for years has become almost non-stop.  The procedure report from the biopsy mentioned that I started coughing and caused a very mild bit of pleural air to develop.  I was worried about coughing during the procedure and told the doctor.  He said the fentenyl given during the procedure would prevent me from coughing.  Little did he know.

Do let us know what your doctors recommend for the next step and how they plan to monitor you.