No longer a "lurker"

[LINan]

I started my Lungevity lurking a year or so ago, when my GP sent my scan results (nodules) to my MSK oncologist who forwarded same to thoracic surgeon! We've been on a wait-n-see since then, a few more scans and he recently sent me for a needle biopsy. I got the call on Wednesday that the nodule is an adenocarcinoma. I have an appt with surgeon on Monday, 9/28, when we'll go over options.

I'm hoping that a "simple" resection will be all that I need, since this tumor/mass, whatever, is pretty small. I already went though a pretty rigorous chemo regiment 7 years ago following my mastectomy and hope to avoid another round for this. My Dr indicated that I didn't do well on my PFT  (a smoker for 45 yrs, quit 9 years ago) so not sure he'd be willing to go the surgical route. But I just have a few more days to wonder...

I haven't told my 3 daughters the biopsy findings, figured I'd let them have a peaceful w/e. I know they'd be nervous and worried and at least by waiting I can share the results and the plans for treatment in one call!

I've found it very encouraging to read so many helpful and kind postings on this forum. I'm happy/not happy (😉) to join!

Fingers X'd for Monday!

[BridgetO]

Hi LINan and welcome to the club nobody wants to be eligible for.  I'm also a breast cancer survivor, but mine was stage one and so I had a lumpectomy and radiation.  After that I had a stage 3 gyn cancer for which I had pretty aggressive concurrent chemo/radiation plus additional chemo, so I an understand why you don't want more. 

My lung cancer was my 3rd primary. It was a small single nodule and I had VATS (video assisted thoracic surgery, which was pretty easy as surgeries go. If surgery is in your plan, we can give you lots of info about what the surgery is like and how to stay as comfortable as possible. If you aren't able to have surgery because of your impaired pulmonary function, you could check out whether you'd be a candidate for SBRT, a highly focused kind of radiation that's sometimes used when patients can't tolerate surgery (Cyberknife is one brand of SBRT.}

If you haven't checked out the information on the Lungevity main website, I suggest you do. Here's a link to Lung Cancer 101.  https://lungevity.org/for-patients-caregivers/lung-cancer-101. 

Let us know what questions you have and how we can support you. Best of luck with your appointment on Monday. 

Bridget O

[Tom Galli]

LINan,

As Bridget suggests, you are now a member of our club. Joining is no fun but membership has its perks. 

I'd venture this forum represents a large body of experience dealing with all facets of lung cancer. In particular, we do two things very well: support you during treatment and answer your questions. 

Bridget suggested SBRT as a treatment modality. It was an effective one for me and I had the CyberKnife form of SBRT. This would be a good substitute for surgical resection given your pulmonary function limitations. Ask about it Monday. Here is more information on radiation treatment for lung cancer.

I also have my fingers and toes crossed in anticipation of your Monday consultation. Let us know how it went.

Stay the course.

Tom

[Claudia]

Hi LINan,

I am glad you are not a lurker anymore. I did the same thing for a while until I realized that these forums are a wealth of information and kind people who are going through the same thing as me. I am glad you finally jumped in and also sorry you had to.  I also did not tell my daughter right away but I waited a month!! I just couldn't find the words to tell her and I wanted to wait until I had a treatment plan in place. Wow! She was so mad at me when she found out. She made me promise to tell her things right away and I have kept that promise. Don't lose hope. You never know what new treatment might be available to help you. Good luck and please keep us informed on how you are doing. Peace, light and great scans to all. Claudia

[GaryG]

Hi Hi LINan: Since you already received a lot of good advise/ et me welcome you among us and wish you a very successful Monday.  Please do not forget to post an update.  We are here to support and help so please feel free to visit often and ask any questions you might have.

 

[LINan]

Thanks, all, for the kind welcome! I will for sure post an update on Monday.

[Rower Michelle]

Hello and Welcome,

I’m very glad you found us, there’s lots of experience within this Forum to draw from. I was on the child side of the lung cancer equation, didn’t tell my parents about the lung cancer until I had a diagnosis confirmed.  I found it was easier to tell my friends and coworkers first.  My immediate family was the last ones to find out.  By that time I had enough of the “elevator pitch” down to “sound” confident and not overly freak them out.  
 

From my experience, it’s not the timing of the communication but the delivery.  I hope you can also speak to some close friends over the weekend to ease the waiting.  In the meantime, you’ve just made a whole new family.  
 

Michelle

[Judy M2]

LINan, you've been down the cancer path before, unfortunately. I had not. I informed my family and friends as soon as I was diagnosed. Believe it or not, my hairdresser had the most extreme reaction when I told her and wouldn't stop crying.

Good luck on Monday. We are all here for you. 

[LouT]

LINan

Let me join my Lungevity family in welcoming you to our forum.  As you can already see there is much support for you here and I'm glad you came out of the shadows.  Ask all the questions you need and you'll hear the answers from people's personal experience.  I look forward to you being a part of our group going forward and to providing some support when I can help.

Lou

[Lanny]

LiNan 

I want 2 wish U good luck on Monday 

[LexieCat]

Hi, LINan,

Given that you have an appointment Monday, I think I'd wait, too, in terms of talking to adult kids. 

There are a couple of options if your lung capacity isn't great--one would be (depending on the location of the tumor) a "wedge resection" (which removes only the tumor and surrounding tissue) or "Cyberknife," which is precision radiation to zap a tumor. A lobectomy is considered the BEST course for most people, but those procedures can be very effective as well.

One other thing--have you had a PET CT scan yet? That's commonly ordered to get an idea whether there has been any spread to lymph nodes or elsewhere. If it has, then chemo or chemo/radiation might be the first course of treatment.

Good luck today!!

[LINan]

Met with my doctor today and signed off on  one of 3 possibilities: a wedge resection, a Segmentectomy (?) or an upper lobe lobectomy. Whew!! The reason for any of the 3 is that a 2nd nodule has shown growth and doctor feels down the road it would most likely be same adenocarcinoma but cannot be reached with the resection. Tentative date for surgery is the 13th, after a series of covid tests, a medical assessment exam and add'l PFT and nuclear medicine test to verify lung strength. Of course I guess all this could change if my lung strength measures poorly. But we'll cross that bridge if/when needed.

To be continued. As Tom encourages...staying the course!

 

 

[BridgetO]

Surgery is the gold standard of treatment for early lung cancers, so it's good if your healthy enough to have it! Keep us posted.

Bridget O

[LexieCat]

Just wondering, did you ask about, or did the doctor mention, a PET CT to check for potential spread? 

Ditto what Bridget said--if you are eligible for a lobectomy, that's probably the best bet. They have to assess your personal lung capacity, of course, but I noticed no change in my breathing after a lobectomy. 

[Lisa Haines]

Best wishes for very successful surgery.

I was never fortunate to have surgery as an option, but have done quite well with treatment.

You'll find this a very caring and supportive place.

Sorry we meet under these circumstances, but happy you're here and know how wonderful this group is.

Take care.