Diagnosed March 27th

[BBTN]

Hi everyone,

I've been reading on this site for a couple of months now while going through the process of ct scans, pet scans, biopsy, etc. and I just want to say that you guys are so inspiring.  I would be lying if I said that I wasn't very scared. My tumor is 1.7 cm and is adenocarcinoma in the RLL. No biomarker testing yet as I have a consult with the surgeon on Tuesday. Any thoughts or tips would be much appreciated as I am just now processing this and I'm absolutely not sure I'm handling it all that well.

[Tom Galli]

BBTN,

Welcome here, and for the record, no one handles a lung cancer diagnosis well.

A summary of my best tips is an old blog shown here. My advice about learning about your disease can start here.

You've got a single small tumor, or large nodule, in the right lower lobe. It is adenocarcinoma so there may be a lot of treatment options.  Here are all the treatment options. The first curative to suggest is surgery to remove your right lower lobe. These days robotic surgery reduces pain and recovery trauma. Your treatment team is doing the right thing by performing biomarker testing. That determines which targeted therapy or immunotherapy treatments are appropriate for your adenocarcinoma. Surgery is our most effective treatment and it can often be one-and-done. But lung cancer is so dangerous because it recurs after curative treatment. If you choose surgery and are offered post-surgical chemo, I'd take it. I had 5 recurrences after supposedly curative treatment and each one was a nightmare. I believe the objective is to hit your lung cancer with everything you can to ensure the chance of recurrence is minimized.

Stay the course.

Tom

 

[LouT]

BBTN,

You've gotten great information from Tom so please take the time to read it and learn from it.  If you do wind up needing surgery there are some tips you can take advantage of pre, in-hospital, and post-surgery.  They can be found here.  My lower right lobectomy was in May 2019.  My diagnosis was Stage 1a, so I was not offered adjuvant chemo.  If I had been I would have taken it.  The good news is that my scans (now done annually) have been clear and I'm NED (No Evidence of Disease).  Stick around, ask questions, and please share your updates with us as you go through your journey.  We'll be here to support you.

Lou

[BBTN]

Thank you Tom and Lou for the advice. I will definitely be reading these to try and prepare. My oncologist did mention that if I am eligible for surgery and once complete we would look at additional treatment to take care of any cells that may have gotten away. I guess he is waiting on the surgery to order the NGS panel as the pathology report said that specimen is borderline-sufficient for a limited NGS panel so a larger sample would be better? Is it normal for every step to seem to take so long? It seems akin to running against the wind and taking one step forward and three back. 

[LouT]

The diagnostic phase for LC can seem like an eternity.  Especially when all we (the patient) want is to have it removed.  Be patient as they gather all the information they can.  But your description of "the wait" is pretty much universally shared.  

Lou

[KenHorse]

Having had a RLL VATS procedure one week ago today, and feeling pretty darn good today, all I can offer is the surgery and recovery (so far) has been nowhere near as "bad" as I feared. Been off any sort of pain meds since last Friday. I can do it, you can too

[BBTN]

Thats awesome Ken! I pray for the same result. Did you have a wedge resection or lobe/lobes removed?

[BridgetO]

Hi BBTN and welcome! I had a lower right lobectomy in 2016, with no further treatment.  The diagnosis was adenocarcinoma stage 1a. My recovery was easier than expected. I have had no evidence of disease since. A lot of us (maybe the majority having a lobectomy) recover pretty quickly and get back to normal pretty quickly. If you have questions about any aspect of lung cancer, ask us. That's what we're here for and among the whole bunch of us we have a lot of experience . I wish you all the best.

Bridget O

[BBTN]

Thanks so much Bridget! You guys are a wealth of information when there's so much uncertainty. I met with the surgeon on Tuesday and am waiting to get a couple of pre-surgery tests done and then awaiting scheduling. She said it would definitely be a lobectomy and not a resection. I'm sure when I get the hard date and time I'm going to go into major anxiety mode and will probably have a million more questions...but as my husband and daughter said this is a positive move in the right direction.

[Renee G]

Thanks everyone for your insight and advice. I was diagnosed with RLL adenscarcenoma on February 7 and so far the testing was tolerable until the lymph node procedure. I won't find out the results until next Wednesday and am scheduled for a lobectomy 4/26. The waiting has been hardest for me, feeling trapped and alone. So glad I found you.

[LouT]

Renee,

Welcome to our forum.  I do recommend you start a new thread in the "Introduce Yourself" forum (the one you're in now).  So people can post directly to you and your questions, otherwise folks can get confused.

The test phase of this disease is really a tough time and we always begin to feel better once we start receiving treatment, so please hang in their.  You are not alone anymore.  I do want to recommend some reading for you, please take the time to look these over:

1. A wonderful primer on getting through this disease titled "10 Steps to Surviving Lung Cancer; From a Survivor" is was written by one of our members who was diagnosed at Stage III then Stage IV over 18 years ago.  It can be found here.
2. Since you are going for a lobectomy (which was my treatment) you should also read "Thoracic Surgery Tips and Tricks" there is solid information there that covers pre-surgery preparation, getting through the hospital stay, and post-surgery recovery.  It's on this page.
3. "Lung Cancer 101" is packed with information on all aspects of this LC journey and it begins at this site.

Also feel free to ask any questions and please take the time to learn all you can.  Knowledge is one of our best weapons against this disease.

Lou

[BBTN]

Hi Renee,

I understand the feeling alone part...even though I have a large family for support they are the only people I have told about my diagnosis. I kind of feel some sort of way about telling people, it feels like I'm ashamed or something, I can't put my finger on it but it makes me really uncomfortable so I get the feeling alone. Praying your lobectomy goes well and you recover fast. Still waiting on a date for mine.

[BridgetO]

BBTN and Renee, Be sure to read "Tips and Tricks in Lou's post above. The other things he cites are good too.

[Kamoto]

HI BBTN.  Have you ever read or watched "The Secret".  Universe's law of attraction.  I've practiced this my whole life, and when cancer struck, I couldn't have cared less.  It was just something life throws at you.  Stay positive, keep a clear mind when dealing with doctors, and spend energy on productive things.  By doing this, every single nurse and doctor I've come across wants to fight cancer for me.  At week five of chemo, I was ready to give up, but the Oncologist who I trusted told me he is curing me, not treating me.  I brought gifts during Christmas for the chemo staff, as well as the Oncology staff.  I was never toxic to anyone, and by being a nice person, I was rewarded with their energies to fight for me.  I may be an outlier, and human tendency is to lash out when severely sick, but keep a positive attitude and it will serve you well.  I beat esophagus cancer, and currently beating Stage IV lung (last tumor is in the lung but reduced by 70%).  Screw cancer.  LOL

[BBTN]

Hi Kamoto,

I'm totally trying to be positive, just really scared. Just taking each day as it comes 🙂