Recent Post-Op CT / Radiation in my future?

[ColleenRae]

I had my third post-op scan last Friday. I was supposed to go to Seattle in April for the scan and to see my Dr., but due to the escalating COVID-19 situation, decided it was best to get a scan locally (and my surgeon's office ended up cancelling all future patient appts as it was to deal with the crisis). My surgeon just called from Seattle this afternoon to discuss the scan and radiology report with me... I was so grateful he took the time to do so; I can't imagine the stress medical providers are experiencing right now.

I have a small tumor in my upper left lung that we've been following. Dr. said it is between 8-10mm and is a pure ground glass nodule. He offered these options: 1) If I absolutely want this out NOW we can look into Stereotactic radiation (I'm assuming SBRT?) and that I would need "fiducial markers" ; 2) Surgery - which he does not suggest as tumor is still far too small for him to find.  He said he's really not recommending any of these at this time... He said this particular nodule has been growing very slowly for almost 2 years. He is confident it will continue to grow at a slow pace. He is recommending I get another CT in one year (not 6 months). He said there are NO other lesions showing, none that have popped up since surgery (thank goodness).

So... My immediate reaction was - I'm okay with this. From what I do know about SBRT I would likely elect to go this route when the time comes vs. surgery. I will need to educate myself more about this, but looks like I will have plenty of time to do so.  Twelve months until next scan??? I'm going to trust him on this. Maybe he's concerned things won't be better with regards to COVID-19 - that Seattle will still be dealing heavily with this in 6 months.  Maybe he just feels this is not going to change much in 12 months. I really do feel okay about this.  I'm just grateful I don't have to do something right now.

I remember how I felt when I was told I likely had lung cancer due to suspicious nodules back in 2016.  Fast forward to 2020... I'm much calmer even knowing there is likely another cancerous tumor in my body. Amazing how we learn to live with this and accept cancer as a possible chronic condition. My hope - what I will go forward with - is that this will be a slow growing tumor. That in twelve months I can go for stereotactic radiation and, with any luck, be cured.  Wouldn't that be nice?!

On a separate note: I also received a call today from my local pulmonologist's office to cancel an appointment I have with them in late April. They are gearing up for an onslaught of COVID-19 cases. Please.. If you live in an area that has not been hit hard by this yet, do not take this lightly. Be diligent about social distancing. It is hard, but it is our best defense against this.

[Rower Michelle]

Wow.  This virus is really hitting us.  I’m so sorry you’re having to make these decisions. Do you think a second opinion is worthwhile when the chaos hopefully settles down?  
 

For two years My Mom in NJ has two tiny hot spots in her lungs, they tried to biopsy them, didn’t get the tissue. They are slow growing & she elected the watch and wait since she’s 76 years old.  I tried to get her to Memorial Sloan Kettering but she wasn’t interested. Waiting is a good strategy for her.

You were very smart to plan ahead to get your scan done locally.  I hope this nightmare peaks soon in Seattle so life can begin some sort of normalcy.  
 

 

 

[ColleenRae]

Hi Michelle,

Yes - the virus situation has totally changed our lives here in NW Washington state. My son has been home for 3 weeks today - he chose to self-isolate early - before the colleges closed - to primarily out of concern over infecting me. I've had to make 3 outings: One time to the grocery store (almost 3 wks ago); another trip to the store but for grocery pick-up and now my CT last Friday... I'm not sure how people can realistically keep track of these timelines in the event they might have gotten infected.. Having to keep a 14 day count from one's possible last exposure.

I believe you posted your car was broken into for disinfectant wipes? We've seen several reports of that here in WA state now... There was a news report of a pastor who had the wipes for his church and someone broke into his car, shattering the window, and took the wipes (but they left his Bose speakers!).  We had groceries delivered today, but they sent multiple text messages prior to delivery to let us know certain items were not available... things like wipes, Lysol, etc. weren't a surprise (we've been trying to buy them for 3 weeks now without success) But we were very surprised when we couldn't get any canned beans... zero. Zilch.  I've got a bagged beans, so we're good, but as vegetarians this was a little alarming... We love our beans...ha!

Second opinion.. I don't think I'll attempt it right now. I'm hoping my pulmonologist will call this week, but doubtful. They were swamped before COVID-19, so it's probably going to be a long, long time before they can get back to their regular patients.

Your mom... I'm glad they are slow growing spots. I'd do the same if I was in her shoes. If they aren't a huge concern and not impacting her daily life, I'd probably choose watch and wait as well. I hope it continues that way for her.

I don't know about being smart to get my scan locally... I just knew I had to find out what the status of this nodule was and that scans might be very difficult to get as things progress here. Unfortunately, I was right. I just really feel for our providers - especially our lung specialists. My Dr. sounded very stoic and steered clear of saying too much about the situation, but I know he's right in the thick of it given his specialty, the clinic and hospital he's connected with.

I think the hardest part of this is wanting to be helpful somehow and knowing that the best thing I can do for everyone is to shelter in place right now. As I said, we've been isolating for about 3 weeks now. We're used to being at home - I worked from home; my son studies a lot - so we did not think this would be much of a change to our routine. But, it is hard. But it's necessary.

Just hoping those associated with this site are able to access the services they need safely within their communities as this unprecedented situation spreads.

[BridgetO]

Hi Colleen Rae, I think you were wise to get your scan locally instead of Seattle. Waiting sounds like a fine idea, especially with COVID 19 around. If the epidemic has died down in 6 months, you could ask for a rescan then, otherwise waiting 12 months seems like a good idea,

[ColleenRae]

1 minute ago, BridgetO said:

Hi Colleen Rae, I think you were wise to get your scan locally instead of Seattle. Waiting sounds like a fine idea, especially with COVID 19 around. If the epidemic has died down in 6 months, you could ask for a rescan then, otherwise waiting 12 months seems like a good idea,

Thanks, Bridget. I always like your sound, practical advice   Yes - I was actually HAPPY when he said 12 months due to my concerns surrounding COVID-19. There's enough to be stressed over right now - I'm going to put this one to the side for a while!

[Rower Michelle]

Hi Colleen,

Yep. That was me with the stolen wipes!  Really unbelievable, some days it feels like it’s every man for himself, then we read stories about the Italians and their national spirit.  What the heck is going on?!  
I’ve been in house since March 7th.  I did venture out to the ortho yesterday to have my elbow evaluated. Onc confident it wasn’t bone Mets but wanted to check it out.  I was sooo tempted to cancel. Glad I didn’t.  I have golfers elbow, which is ironic, I don’t golf!  Anyway he ordered PT which in my opinion can definitely wait.  I will live with the discomfort, not worth the risk.  
I’m still very surprised to see so many people out and about. I guess they aren’t watching the news?  Unreal. 

We finally had a break in the weather & I’ve been out on my trike. Still shocked by the lack of social distancing.  I rode down the middle of the street just to avoid these yahoos. Good thing I have a ridiculously big safety flag.  I thought it was a bit over the top but hubby insisted. Once again, he was right on point!  Back indoors tomorrow with another cold front. YouTube here I come. 
Michelle
 

 

[Lin wilki]

I think some people are taking such chances.   I know they feel they are invincible but they don’t realize how they put others at risk.  Sad

if only the weather would cooperate!  All this time on our hands and can’t get out for a walk

wow that is ridiculous stealing your wipes!

Some people are so self serving and others are doing acts of kindness. Different strokes I guess 

take care all!

[ColleenRae]

14 hours ago, Rower Michelle said:

Hi Colleen,

Yep. That was me with the stolen wipes!  Really unbelievable, some days it feels like it’s every man for himself, then we read stories about the Italians and their national spirit.  What the heck is going on?!  
I’ve been in house since March 7th.  I did venture out to the ortho yesterday to have my elbow evaluated. Onc confident it wasn’t bone Mets but wanted to check it out.  I was sooo tempted to cancel. Glad I didn’t.  I have golfers elbow, which is ironic, I don’t golf!  Anyway he ordered PT which in my opinion can definitely wait.  I will live with the discomfort, not worth the risk.  
I’m still very surprised to see so many people out and about. I guess they aren’t watching the news?  Unreal. 

We finally had a break in the weather & I’ve been out on my trike. Still shocked by the lack of social distancing.  I rode down the middle of the street just to avoid these yahoos. Good thing I have a ridiculously big safety flag.  I thought it was a bit over the top but hubby insisted. Once again, he was right on point!  Back indoors tomorrow with another cold front. YouTube here I come. 
Michelle
 

 

Michelle - NOT laughing at you but with you here... Loved the image I got of you riding your trike with the big safety flag...! Precious! Shared this with my son and he got a hoot out of it as well

Golfer's elbow? That's a new one for me. I've heard of tennis elbow. I think I'd prioritize PT to the bottom of the list right now as well if you can tolerate the pain/discomfort for a while.

[Rower Michelle]

Tee hee hee!  That sucker is rainbow colored at at least two feet wide.  I’m my own parade!  

[Tom Galli]

ColleenRay,

On SBRT and fiducals: SBRT is a technology label and there are several methods used to achieve the precision radiation. I had a CyberKnife that required a thoracic surgeon to implant 5 one mm sized gold rounds as targets for guiding the radiation. These fiducals account for movement of the chest while breathing. We were very concerned about this implant because the principal risk is a collapsed lung—something all one lung folks want avoid.  But my procedure turned out to be a piece of cake.

There are other methods used to geolocate the tumor that don’t require fiducals. You might try arranging a consultation with a radiation oncologist to explore which method is best for you.  CyberKnife worked for me and is the reason I’m alive today. 

Stay the course. 

Tom

[ColleenRae]

Thank you, Tom.  I really appreciate that information. I had never heard of fiducals - I ignorantly thought one just showed up for radiation and they put a bullseye target on the tumor(s) they wanted to zap...! (Yes, very elementary understanding here!)

I'm afraid for the time being I am going to need to research what I can and hopefully get a consult with a radiation oncologist down the road.  My surgeon said he had not discussed my case with a radiologists yet - and I got the feeling he's not going to be able to at this point... they really are stretched right now in Seattle with an ever bigger wave coming.  Locally it's just as bad. I need a referral from pulmonology to radiology and I can't even get into pulmonology - they just cancelled my upcoming appt. in late April. I believe they are weeding out the non-emergency appts at this time. They all seem to agree that my tumor is likely not to grow much in the next 6 months, so I am being asked to wait - indirectly - until this virus lessens. The more I read, though, it does not seem likely that appointments and treatment are going to be easy to obtain in the next few months. I'm just hoping this will stay small and not grow or spread in the meantime.  Even if I could do something now, I would rather not due to COVID-19.  Our small hospital (we have one in our county!) is definitely not equipped to handle what's coming; they are already reporting a shortage of protective equipment...

Thanks again - I will read up on the different methods and more about the implants. I'm assuming this would be the route to go versus another surgery... But I sure don't like the idea of the risk of a collapsed lung, cluster headaches, chest pain... all "crap" I keep reading about...