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Perhaps I spoke too soon...?

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

As I had posted earlier, I had a PET scan for my lung nodules; scan didn't show any uptake, which we were very happy to hear. While I knew there was a chance that the lung nodules might be too small for the PET to pick anything up, I remained optimistic - and am still working on keeping that attitude. However, I met with the pulmonologist today. He feels that the nodules may be too small for the PET to give us anything. He's also concerned because of the continued growth of said nodules, albeit slow growth. The options we discussed are:

  • Do nothing, and continue with next scheduled scans in December and go from there.
  • Have a second needle biopsy. (No thanks. I have no faith in the Interventional Radiology team after my pneumothorax and week-long vacation in the hospital - not to mention their shady behavior around telling me who actually did the procedure.)
  • Blood test and liquid biopsy, which would help inform our next steps.
  • Have the Thoracic surgeon excise one of the nodules, so we can biopsy and get a definitive answer.

For the moment, I went with the liquid biopsy - especially since they did the blood draw in the office; there will, however, be a two week turnaround to get results.

He said the size is small enough that we don't need to rush any procedures right now. He also said that if we wait until the December scans, we'll likely be having the same conversation we were having today.

So, I'm going to wait for the biopsy results. Based on that, we'll determine our next steps, whether it be surgery or some other kind of treatment.

I'm working hard to stay positive and keep focused on what's good, and what I do know for sure - as opposed to going down the "what if" rabbit hole. The roller coaster, however, is a little unnerving. 

Has anyone else had the liquid biopsy? And if so, was it helpful?

Thanks!

Gary

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

So sorry Gary for ALL you are going through at this time. Never heard of liquid biopsy.

All I can do is send you a healing hug filled with HOPE and SERENITY~!

Jan

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

...I'll take all the hugs, hope, and serenity I can get!

 

donna_lee's picture
donna_lee
Posts: 968
Joined: Feb 2009

treats with no tricks, I'm sure.  Thanks for the personal note, too.

I'm not sure what a liquid biopsy is, or the proceedure used???

I was scheduled for the needle or excisional biopsy last month; but it was determined after getting the CT on the screen, that whatever was there had shrunk by 1/2.  I still can't figure out why my onc. didn't put me on a course of antibiotics rather than wait 3 months to do another CT the end of Dec.  Actually it was my insurance plan that is making me wait the 3 months between scans.

And of course you're not dead, You're very much alive and fighting to stay that way-just fighting the medical system to keep that way.

Good luck and hugs.

donna_lee

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

...and here I thought a briskit in a crock pot was the only thing that shrinks by half. (Inside family joke, but had to go there.) Insurance can sure be infuriating, especially when they opt for cost savings over what a doctor has determined is needed care. Thanks for the kind words, Donna. I hope your December scans go well!

Hd67xlch's picture
Hd67xlch
Posts: 149
Joined: Apr 2016

I cant remember if you said you had that or not? JMO but whats the point of having the thorasic surgeon exise one and not take them all out if they are in the same lung? If it comes back positive you will have to go through the whole thing again. I know its hard to believe but the open lung surgery really isnt that bad, you were in the hospital longer for your pneumothorax event than I was for the removal of the lung nodules, and Ive gone through it twice, once with a needle biopsy on the right lung. The 2nd time on the left lung the surgeon suggested just going in after them without the biopsy and he was right the path report came back rcc. Me Id go the surgery route, anything to keep off the cancer drugs as long as possible, at least with the surgery route you stand a chance of long term remision, JMO.

 

After looking at your profile a nodule that has grown 7mm in 3-4 months is a fast growing nodule, my left 2 nodules went from 2 and 3mm to 5 and 6mm in 3 months and they wanted them out asap due to them doubling in 3 months. Good luck.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Thanks for weighing in. There are two nodules of note: one on the right lung, and one on the left lung. (The left lung is where they did the needle biopsy and gave me that lovely pneumothorax.) So the initial thought - by the pulmonologist, not the thoracic surgeon - is to take one and determine for certain what it is. If it's indeed a met, then we would decide what to do with the other one. Nothing is in stone yet. I'm sure if/when I speak with the thoracic people we'll review all the options. Positioning of the nodules is not ideal for bronchoscopy; we had dicussed that initially before the needle attempt.

Magayon
Posts: 16
Joined: Aug 2017

I was seen at first by a pulmonologist and decided to do bronchoscopy biopsy. The result was inconclusive so my medical oncologist referred me to a thoracic surgeon and he ordered a PET scan which showed that the lung nodule in my right lower lobe which is 20mm "could be a metastatic malignant disease or primary malignancy." The word "malignancy " was the deciding factor for my scheduled VATS On 11/14. I'm still not fully recovered from my left radical nephrectomy last Aug. I still have numbness and tightness and sometimes stabbing pains. I'd like the nodule removed soon so I can have a definite answer and treatment .

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Wow! I thought a bronchoscopy was more accurate than a needle biopsy. I guess the only real way to know for sure is to have that little bugger removed. I hope you can get this resolved soon!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I read your post and just hope you have peace, strength and answers soon!!!

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Thanks, me too!

sandy23
Posts: 143
Joined: Jan 2017

Just a thought but could this nodule just be a shotty lymph node?  After everything that you went through recently, I would think that your body is working in overdrive to heal causing nodes to get bigger.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

I can certainly ask about that. However, I think that due to the placement on the lungs, they seem pretty clear that these are nodules. But I will see if that is a possiblity. Thanks for the suggestion.

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Any idea when results will be in?

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Pulmonologist said the liquid biopsy showed a KRAS (D12R) Mutation, which can be found in clear cell RCC. That, my history, and my lung noducles indicate that the nodules are most likely mets. My docs in Colorado have to get the blocks of slides (samples from my original tumor) from New Jersey, and test them to be sure. Then we'll tackle a treatment plan. I haven't spoken with my oncologist yet, but am messaging her today - she is in the loop, according to the pulmonologist, who just got the results today. So not 100% sure what we're going to do about it yet, or what she'll recommend. Looks like I have more waiting ahead of me. This should make my work trip to Calif this week so much more fun... Not the results I was hoping for, but not unexpected either.

Bellafelice
Posts: 57
Joined: Sep 2008

I know it sure is easy for other people to say, but I hope you have a great trip and vacation despite the waiting and worrying. It is nice you will be in a nice different environment and get to do some fun things to take your mind of it. The good news with lung mets is all the different ways they can be taken care of.

Sending you healing cyber hugs from Ohio.

 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Thank you! I'll take all the hugs I can get. And unfortunately, it's a work trip, but hopefully that will still take my mind off things. It's just been a rough week - had to put my sweet, little 13 year old dog down a week ago. We have another dog, who is wonderful. But he was "my boy," and I'm really missing him right now. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Best wishes with your health and I'm so sorry for your loss of your fur baby.  Almost nothing worse (my opinion), than losing a dog. The unconditional love, the funny little antics and as for our current little guy, if he only had opposable thumbs he'd be dangerous!  And he tries so hard to speak words, hilarious.  Hopefully you have many sweet memories of him that'll help get you thru this period of grief. 

Many hugs,

Donna~

APny's picture
APny
Posts: 1988
Joined: Mar 2014

I am so sorry for both the biopsy result and for losing your dog. It's heartbreaking and bad enough by itself. You didn't need the biopsy results on top of it. Hopefully the treatment options will put an end to it if indeed it turns out to be mets. All the best to you!

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Sorry to hear about the results. Hoping the treatment works for you!!!

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Heading out for my work trip shortly; hopefully that will keep my mind occupied until I hear back from my oncologist, who I messaged Friday. I appreciate your support and caring - it really helps make this a little easier to deal with.

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