Possible Recurrence

Hi Judy, 

Do you know if Carol is having problems joining or starting a new thread?  I need to go in and post with my (don's) membership to see what's others are seeing.  Thanks for posting for her.

Hi Carol,

Congratulations on clear scans for 9 years.  My husband is somewhere between 7 and 9 years out depending on where you start counting. 

Usually a suspicious scan result would be followed by another scan in about 12 weeks.  There's no standard for timing  of scans in this situation but you want to wait long enough for change to happen/to be seen but not too long.  Sometimes if there is infection suspected antibiotics are given or inflammation, steroids might be given.  There may be reason to move quickly but I'd want to know and understand why a surgeon is needed at this point.  It's possible that you're being seen by a surgeon and surgeons do surgery.   It doesn't sound like a good enough reason to have surgery but it's not uncommon. 

A pulmonologist would more likely use a less invasive next step.  A second opinion from a pulmonologist would be helpful in finding out if surgery or even a biopsy is needed at this point. 

I hope you find that this is just a fleeting infection or inflammation.  Keep us posted.  email me at jthompson@cancergrace.org and I can help with posting.  The situation you're in is pretty common (a friends mom just went through a similar situation where the mass went away on its own but only after the docs told her and fam she had lung cancer). 

All best,

Janine

Hi Judy!  

We just initiated the moderator approval - we have had a hard time with spammers - which has been an ongoing problem on this and on the old site, and a huge pain for our moderators, Jim and Janine.  We are hoping to be able to get it nailed down so only new accounts have to be approved, and after x# of posts and comments no approval is needed.  It is definitely tough to get this so no spammers are able to ruin our days.  Spam posts have to be deleted one by one when they are successful -- and poor Jim and Janine are left doing cleanup vs. actually helping our community.  

thanks -

Denise

Hi Judy,

I've been in concact with Carol through email, I'll paste the pertinent parts here to share with the community.   I need to ask Denise to look at Carols membership to see if she can get it back.  It should have moved over with the new site.  Thanks again for being a good advocate.  Carol and I think you're the best! 

Janine

Carol and I have been communicating via email since she is having problems with posting (we’ll get that fixed)  Below are the most pertinent parts of our conversations:

From Carol’s surgeon, (who btw, answered her email within hours on a Sunday no less!  I don’t think we can discount NHS),

“I will try and answer here and see what you think:

Multiple nodules

Solid not GGO

All less than one centimetre

All lobes of both lungs

The opinion of MDM was diagnostic resection was more likely than PET to give an answer, the nuclear medicine doctor was in the MDM.

See what you make of the above and let me know what you want to do

John”

From Janine,

“From what our faculty oncs say the multi-disciplinary meetings (MDM) are great in helping to put the best plan together.  When you get a lot of minds together discussing one problem, in one room, with all the information you come away with so much more than if you go it alone.

No matter what the small nodules are they probably need attention since they are all over.  A pet scan won't give much information.  First of all the nodules are too small to show up on pet even if they are avid.  But pet avid would suggest cancer, inflammation or infection.  You need to know what it is.  They are too small to biopsy.  I don't know but you might ask about a broncoscopy.  They are less invasive, and your doc will have a good idea about what one might show.  Otherwise maybe surgery is the way to get the info that will help determine the best course of treatment. 

Another question is can you wait to see how they change over time.  There are options for treatment that could be very helpful without being such a drag on living life.” 

From Carol,

"Thanks for your reply, I was quite surprised to get an answer from Mr. Piling on a Sunday. From what you say perhaps surgery is the best bet. He did say we could watch and wait but in his opinion,  it would be better to find out what it is as soon as possible. If I decide on the surgery it will be a few weeks yet so time to see if there are any changes I suppose. He said trying to obtain a sample any other way would be unlikely to get enough of a sample even, given they are small, if they managed to actually pinpoint a nodule. I am not sure if he meant a needle biopsy or broncoscopy.

He was rather surprised that, after looking at my scan, I appeared and felt perfectly well! He expected me to be ill and look it.” 

Monday from Carol,

“The surgery is set for the 16th. I am worried about it but as you said I should probably find out what it is. It’s all so depressing after such a long period with no problems. Wish me luck and let me know if you find out anything else. Thanks for all your help."

Hi Carol,

I recieved an email response from Dr. West.  Here is his reply,

"My view is that it makes sense to get a diagnosis, but I question whether a resection is helpful. That's a very invasive way to get the diagnosis, which should be feasible by doing a CT-guided biopsy of one of the larger and more accessible ones. I don't know why a surgery would be necessary."

I wonder if an interventional radiologist has been consulted.  They are the docs who do CT guided biopsies.  As Dr. West suggested there are options for choosing a nodule that may be reachable with hope that diagnosible tissue can be captured. 

Another question for the surgeon.

All best,

Janine

Hi Janine, 

that has really unsettled me, I was resigned to the surgery. A CT biopsy has never been mentioned and I doubt he will change anything now. I did ask if I could see him again but I don’t think I will be able to as he is only here at the local hospital one day a week. I will keep you posted.

thanks for all your help

carol 

Carol,

I'm so sorry for your predicament.  Could you not email him again?  I know he said he didn't think other methods would be possible but I'd like to know if all options had been covered.  After all you do have many nodules from which to choose. 

Dr. West wouldn't want to guess what the nodules represent.  It could be infection, inflammatioin or cancer.  Oncologists and pulmonologists see diagnosis that they didn't expect all the time.  That's why a tissue diagnosis is needed to make any treatment decisions. 

Do what you think is best for you.  Don't hesitate to do something just because you expect the system to act a certain way.  We talked about this in our emails.  The reason some people in the US travel to get the best care is because they have advocated for themselves.  Those are the same people who find places like Grace, lungevity and inspire.  Unfortunately there are more who don't realize they have options or health insurance.  The downside with being able to do that is so many people advocate for things they don't need and they can always find a doctor willing to do whatever which helps our healthcare costs go up. 

Whatever you decide will be the right decision for you.  Keep us in the loop.

Hoping for the best,

Janine

As I said in my email I will see Mr. Pilling on Friday  and will keep you posted. Any useful suggestions what I could ask about will be gratefully received. I hope I am finally finding my way round this site but it isnt easy! 

Carol 

I'm sorry it's difficult getting around the site but glad you're getting the hang of it and thank you so much for sharing your medical quesitons and concerns on the forum.  I'm sure there are others who can benefit.

Carol,

From what I iunderstand you'd like to know:

What are the possible casues? (Keep in mind there's a difference between probable and possible and docs are surprised everyday by what is found compared to what was expected.)

Has an interventional radiologist been consulted?

Wouldn't the chances of collecting useful tissue via ct guided biopsy be greater since there are so many to choose from?

and Wouldn't it be worth asking a radiologist?

Is there a nodule that might be reachable by broncoscopy?

And anything else about which you'd like clarity...and expect the answer to often be I don't know because that's too often the case with lung issues. 

I hope this helps a bit,

Janine

I have the report from Mr. Pilling where he said that the nodules were too small for a CT guided biopsy and that  the options were either to wait or have the wedge resection for diagnosis. He would take a nodule from the from the left. I got that wrong before and thought it was the same right side as my previous op. I will see what he says tomorrow, he did say to bring a list of any questions I have. 

Carol

This is an exchange with Carol who is just out of hospital from VATS, I think and wants to share this here if it might be helpful.  Since I've learned we never know what might be helpful to someone else here's our email conversation including the always helpful pics of the backend of my redbone hound dog.

 

 

Hi Janine, 

Yes of course you can use anything you consider useful, it’s easier than me trying to post as I find it frustrating now.  I had squamous last time but this could be a totally different new cancer, just have to wait and see. I will let you know the outcome.

Regards

Carol 
 

 

 

 

 

Carol,

 

Thanks.  And when you feel better we'll have a posting conversation because it shouldn't be frustrating.  I can take screenshots and put together something if you think that will help. 

 

Just because of the way it's growing made me think adeno but as we all know cancer can do anything.  With immunotherapy squamous has a lot more treatment options as well.

 

Janine

 

--

From Carol a couple of weeks ago.  I'm sorry I didn't post this sooner. 

Hi Janine, 

Carol,

This is great news and I'm so relieved to know you won't be going through cancer treatment again. 

To everyone,

This story serves to remind us that even if you've had lung cancer in the past it's possible to get ct scan results that look a lot like cancer...but aren't. 

Super Great!  Now, on to conquer captcha.

Janine

A note from Carol.  :)

Hi Janine,
Just to let you know I finally got the surgeons report and what I have is Organising Pneumonia. I had never heard of it but now I could look it up. I should feel better once it is treated, I see the respiratory consultant on the 20th. Hope this might help someone else.
Regards
Carol