Canadian newbie hello

[Ramona]

Hi everyone, I am very thankful to have found this forum. I have taken the time to look through some of the threads already, and appreciate the shared knowledge here so much.

A little about me, I'm 42 and have never smoked a day in my life. However, when doing tests for other medical issues they found some lung nodules in both of my lungs. I've been seeing a lung specialist for the past 6 years, and she followed the incidentally found nodules with CT yearly initially, and the past few years has kept an eye on them with only xray. The largest started at 7mm, and for a few years there was little to no growth, but this year after ending up in urgent care for something unrelated the CT is showing the nodule as 16mm, which is a doubling in size since my last CT a couple years back. Ive now got 9 nodules in total, in each of the lobes I have at least 1, but with only 2 being a substantial size, and they are showing ground glass opacity. I have been experiencing symptoms increasingly more this past year and a half.

My dr sent me for a FNA CT guided biopsy in June, however due to location they had trouble getting a biopsy sample, so I came away from that procedure with no answers. My lung specialist then decided upon a wedge resection to get the biopsy to have some answers in hand, however the thoracic surgeon I met with is refusing to do it at this point and rather wants to continue on the wait and see approach...which I'm not too keen on, considering my lung specialist thought the resection was an important step. 🤷‍♀️

I also had a PET-CT scan at the end of June, there was SUV of 2.3 on the largest nodule so not high...but still not zero uptake. I go for PFT this coming Thursday, so I'm hoping that might give some answers or indication too on what's going on. The thoracic surgeon agreed to at least doing another attempt at the needle biopsy again sometime in the fall, so I guess I just hope and pray for some answers at that point. Is it likely to get a biopsy on the second attempt, when they didn't succeed the first time? 

Another little extra "fun", while doing the CT guided biopsy and the PET-CT, they found a cystic lesion in the anterior mediastinum, which I'm still waiting on further diagnostic testing for that now...unsure if it could be related to what is going on in the lungs.

So with that all being said, if you've gotten this far in my long ramblings...sorry for going on and on! I don't have a diagnosis of LC at this point yet, but I hope it is ok I still participate in the forum while I am in the waiting for the diagnosis of what is going on. If not, please let me know. 💗

[BrianK]

Wow your story sounds similar to mine—44 yr old no hx of smoking.  I have a CT on Tues but the last CT i did in 2014 had two nodules in my RLL, 2mm and 6 mm (indefinite margins). I got pneumonia recently and got an xray which showed a 1.8cm nodule in the RLL so they immediately ordered a CT scan. I think the waiting and what if anxiety has been driving me and my family (parents + sister) nuts. I hope in both our cases it’s not cancer but if it is, I’m glad this resource is here. Btw what symptoms have you been having?

[BridgetO]

Hi Ramona and welcome. I'm sorry to hear about your nodules. 'I'm not a doctor, but I am a 3-time cancer survivot. With growing nodules now over a centimiter, ground glass opacity and mediastinal invovement, I don't think I'd be comfortable with "wait and see".

In 2016, I had a nodule that was under a centimeter. My pulmonologist advised wait and see, and 3 months later it had grown to about a centimeter and was spiculated, which is "suspicious". I had a PET and nothing lit up at all. I was referred to a thoracic surgeon, who took my case to the hospital's tumor board. Do they have tumor boards in Canada? Here they are pretty standard. They consist of a variety of specialists who review a patient's case. None of the specialists thought they could biopsy my nodule by needle or by scope, and wedge resection was also out because the location was near the center of my lower right lobe, and not near the edge. They recommeded a lobectomy by VATS and I''m glad I agreed to that because I was diagnosed with Stage 1 adenocarcinoma. Because it was a Stage 1 diagnosis, I didn't need further treatment. I have had regular CTs for surveillance and have had no evidence of disease (NED). 

Do you have an option of a second opinion?

I wish you all the best and encourage you to keep posting with whatever questions you may have,. Let us know how we can support you.

Bridget O

[LouT]

Ramona,

I was a former smoker and had a CT Scan for kidney stones and it showed a small nodule in my lower right lung.  Like you they tried a CT Guided Biopsy, but couldn't really get a handle on the nodule and didn't want to risk a collapsed lung situation with little chance of getting a good sample.  Then they tried the PET Scan and it showed an SUV of about 2.5 which is considered inconclusive.  My pulmonologist and a surgeon met and decided to do a wedge resection, test the nodule and close up if it was benign or remove the lobe if it proved to be malignant.  In my case the nodule was NSCLC Squamous cancer so I had a lower-right lobectomy and since everything else was clear and the margins were so good surgery was the totality of my treatment for now.  It's been two years since that surgery and so far I am NED (No Evidence of Disease).  

I share this with you because while I see some similarities in our cases, but one difference I noted was that my doctors worked together as partners and their ability to take in all the information and come to an agreement on "next steps" made me feel confident they were doing the best things for me.  Perhaps I misunderstood your post, but when I hear that your Lung Specialist recommends one action and a Surgeon refuses to do it I don't feel like I'm seeing a strong partnership between your medical team.  If that is the case I would look to make a change.  

BTW, my pulmonologist did wait a few months to see if the nodule would change and in my case it grew 2mm (from 6mm to 8mm) and that was the key reason that the surgeon supported the wedge resection.  Most nodules (60%) are benign, but a non-malignant nodule rarely grows.  When I asked my surgeon what he thought the odds were that a nodule that grew would be benign he responded, "about 10%".  

You need to make up your mind about treatment, but more importantly I would look for a medical team that isn't at odds over the best way to proceed.

Lou

[TJM]

Like everyone else...Welcome! You have found the right place.

It's the number of nodules that would concern me the most(with growth). I did the wait and see and ended up being Stage III when diagnosed.

Have you visited a pulmonologist? If not please research. Me? I'd get a second surgical opinion. From a different provider. This assumes you want the surgery. I couldn't wait to get the vile thing out. But you have a team now and eventually will get a definitive diagnosis.

Lots of hope now. Keep it close.

Peace

Tom

 

[Tom Galli]

Ramona,

Welcome here. A SUV of 2.3 is not in itself concerning. Generally, normally, usually SUVs less than 3 are not considered indications of metastatic disease.

Nevertheless, the proliferation of nodules you've experienced is of concern and another biopsy is wise. Here is some insight into a PET and an explanation of SUV.

Stay the course.

Tom

[Judy M2]

Please ask for a liquid (blood) biopsy. It's less invasive than a tissue biopsy and the results come back in days rather than weeks for genetic/biomarker testing. If there is sufficient ctDNA (circulating tumor DNA), and the liquid biopsy shows a genetic mutation, you could be started on a targeted therapy drug without the need for a tissue biopsy or chemo. However, if there is no identifiable ctDNA, then a tissue biopsy would be necessary for a diagnosis. 

On Saturday I listened to a Targeted Therapies Patient Forum by Global Resource for Advancing Cancer Education (cancerGRACE.org), and there was consensus among the presenting doctors that liquid biopsy is their preferred first diagnostic tool, particularly if a patient has a high symptom burden. And a little off topic, but the future of liquid biopsy looks like when testing becomes even more sophisticated, other bodily fluids (such as urine and saliva) and even breath could be used. We're not there yet though. 

I agree that a second opinion would be beneficial. 

[Ramona]

On 7/18/2021 at 7:48 PM, BrianK said:

Wow your story sounds similar to mine—44 yr old no hx of smoking.  I have a CT on Tues but the last CT i did in 2014 had two nodules in my RLL, 2mm and 6 mm (indefinite margins). I got pneumonia recently and got an xray which showed a 1.8cm nodule in the RLL so they immediately ordered a CT scan. I think the waiting and what if anxiety has been driving me and my family (parents + sister) nuts. I hope in both our cases it’s not cancer but if it is, I’m glad this resource is here. Btw what symptoms have you been having?

Hi BrianK, how did your CT go this past Tuesday? I hope that it gave you some answers in regards to your nodules, especially the larger one that was seen on the X-ray. You are right, the waiting is for sure tough...anxiety gets ahold and it’s hard to keep it in check and not assume the worst. Hope you are hanging in there. 

The symptoms I’ve been experiencing are shortness of breath (increased especially after my last CT guided biopsy), heaviness pressure/pain in the chest, recurrent chest infections and extreme fatigue. I also have fibromyalgia and endometriosis, along with a few other medical issues...so have some additional symptoms, but it’s so hard to tell the cause of them between everything. 🤷‍♀️ I also experience chronic body pain, aches and weakness, nausea, migraines and numbness in my fingers/hands/arms. 

[Ramona]

On 7/18/2021 at 8:43 PM, BridgetO said:

Hi Ramona and welcome. I'm sorry to hear about your nodules. 'I'm not a doctor, but I am a 3-time cancer survivot. With growing nodules now over a centimiter, ground glass opacity and mediastinal invovement, I don't think I'd be comfortable with "wait and see".

In 2016, I had a nodule that was under a centimeter. My pulmonologist advised wait and see, and 3 months later it had grown to about a centimeter and was spiculated, which is "suspicious". I had a PET and nothing lit up at all. I was referred to a thoracic surgeon, who took my case to the hospital's tumor board. Do they have tumor boards in Canada? Here they are pretty standard. They consist of a variety of specialists who review a patient's case. None of the specialists thought they could biopsy my nodule by needle or by scope, and wedge resection was also out because the location was near the center of my lower right lobe, and not near the edge. They recommeded a lobectomy by VATS and I''m glad I agreed to that because I was diagnosed with Stage 1 adenocarcinoma. Because it was a Stage 1 diagnosis, I didn't need further treatment. I have had regular CTs for surveillance and have had no evidence of disease (NED). 

Do you have an option of a second opinion?

I wish you all the best and encourage you to keep posting with whatever questions you may have,. Let us know how we can support you.

Bridget O

Thank you so much for the welcome Bridget. 💗 I am sorry it took me a bit to respond, during the week after a days work, I just don't have extra energy to respond. I appreciate your thoughts and opinion on the "wait and see" approach. I am glad to hear I'm not being unreasonable with not wanting to wait. I am really sorry to hear about your experience as well, with the pulmonologist wanting to wait and see. But so happy to hear you are now NED though. I have not heard of tumour boards here, but it's possible they have them, I'll have to look into that.

This past week I heard they will be trying to do the CT guided biopsy again, so I am hoping they may get a sample this time. 🤞 If not, at that point I will push my lung doc to send me to a different thoracic surgeon for a second opinion.

[Ramona]

On 7/18/2021 at 9:30 PM, LouT said:

Ramona,

I was a former smoker and had a CT Scan for kidney stones and it showed a small nodule in my lower right lung.  Like you they tried a CT Guided Biopsy, but couldn't really get a handle on the nodule and didn't want to risk a collapsed lung situation with little chance of getting a good sample.  Then they tried the PET Scan and it showed an SUV of about 2.5 which is considered inconclusive.  My pulmonologist and a surgeon met and decided to do a wedge resection, test the nodule and close up if it was benign or remove the lobe if it proved to be malignant.  In my case the nodule was NSCLC Squamous cancer so I had a lower-right lobectomy and since everything else was clear and the margins were so good surgery was the totality of my treatment for now.  It's been two years since that surgery and so far I am NED (No Evidence of Disease).  

I share this with you because while I see some similarities in our cases, but one difference I noted was that my doctors worked together as partners and their ability to take in all the information and come to an agreement on "next steps" made me feel confident they were doing the best things for me.  Perhaps I misunderstood your post, but when I hear that your Lung Specialist recommends one action and a Surgeon refuses to do it I don't feel like I'm seeing a strong partnership between your medical team.  If that is the case I would look to make a change.  

BTW, my pulmonologist did wait a few months to see if the nodule would change and in my case it grew 2mm (from 6mm to 8mm) and that was the key reason that the surgeon supported the wedge resection.  Most nodules (60%) are benign, but a non-malignant nodule rarely grows.  When I asked my surgeon what he thought the odds were that a nodule that grew would be benign he responded, "about 10%".  

You need to make up your mind about treatment, but more importantly I would look for a medical team that isn't at odds over the best way to proceed.

Lou

Hi Lou,

Thank you for sharing with me about your experiences. How my nodules were found was similar as well. I had an ultrasound for ovarian cysts, which led to finding something on my liver, and when doing an MRI of the liver, they found the lung nodules, so have seen my lung doc since then.

I am really sorry to hear your nodule ended up as NSCLC, but glad to hear that you are NED as of now.

What a blessing that you had a team of docs that were working together so well as a team. 💗 You are right that my docs are not all on the same page...it's been really, really discouraging. And it was me that had to fill my primary care physician in on everything thats gone on with all my tests and procedures. 😞 My lung specialist referred me to the thoracic surgeon, thinking he would do as she had asked with the wedge resection, but that didn't go as planned. Unfortunately they are from 2 different hospitals here in the city. I am happy with my lung specialist, but not with the thoracic surgeon...but the thoracic surgeons that work in my city all work within the same office at the one hospital, so getting a 2nd opinion is proving to be somewhat difficult. If they don't get a biopsy sample this time around, I will be pushing harder and harder for that 2nd opinion though, and finding a surgeon that can work cohesively with my lung specialist for my best interests.

I really appreciate your thoughts and opinions on everything. I however don't feel like I am the one that's in control about my treatment. 😢 It works a bit different in Canada from my understanding, and I can request different things, and hope the docs will agree to them.

[Ramona]

On 7/19/2021 at 12:21 AM, TJM said:

Like everyone else...Welcome! You have found the right place.

It's the number of nodules that would concern me the most(with growth). I did the wait and see and ended up being Stage III when diagnosed.

Have you visited a pulmonologist? If not please research. Me? I'd get a second surgical opinion. From a different provider. This assumes you want the surgery. I couldn't wait to get the vile thing out. But you have a team now and eventually will get a definitive diagnosis.

Lots of hope now. Keep it close.

Peace

Tom

 

Hi Tom, thanks so much for the welcome! 💗

From what I've heard once the number of nodules goes over 4 nodules, then the risk of cancer decreases again...I just don't know if that is completely accurate. The growth is what has me most concerned.

Tom, I am so sorry that you ended up being diagnosed with Stage III. When were you diagnosed, and how are you feeling now? I hope you are recovering from the treatment you've had.

I have been seeing my lung specialist/respirologist for the past 5+ years, is that very different from a pulmonologist? Getting a 2nd opinion is proving more difficult that I'd hoped. 😞 I did get scheduled for a repeat CT guided biopsy this past week though...it will be happening Aug 5, so if I don't get answers then I will continue to push for that 2nd opinion.

Thank you for the encouragement!

[Ramona]

On 7/19/2021 at 8:17 AM, Tom Galli said:

Ramona,

Welcome here. A SUV of 2.3 is not in itself concerning. Generally, normally, usually SUVs less than 3 are not considered indications of metastatic disease.

Nevertheless, the proliferation of nodules you've experienced is of concern and another biopsy is wise. Here is some insight into a PET and an explanation of SUV.

Stay the course.

Tom

Hi Tom,

Thanks so much for sharing your knowledge and insight, I appreciate it. I see so much difference when they are talking about SUV, that above 2 is concerning, above 2.5 and 3...so I don't know what to believe anymore, lol!

What do you mean by proliferation of nodules? I found out this week that they will be attempting another CT guided biopsy again on Aug 5, so we'll see how that goes. 🤞

[Ramona]

On 7/19/2021 at 11:03 AM, Judy M2 said:

Please ask for a liquid (blood) biopsy. It's less invasive than a tissue biopsy and the results come back in days rather than weeks for genetic/biomarker testing. If there is sufficient ctDNA (circulating tumor DNA), and the liquid biopsy shows a genetic mutation, you could be started on a targeted therapy drug without the need for a tissue biopsy or chemo. However, if there is no identifiable ctDNA, then a tissue biopsy would be necessary for a diagnosis. 

On Saturday I listened to a Targeted Therapies Patient Forum by Global Resource for Advancing Cancer Education (cancerGRACE.org), and there was consensus among the presenting doctors that liquid biopsy is their preferred first diagnostic tool, particularly if a patient has a high symptom burden. And a little off topic, but the future of liquid biopsy looks like when testing becomes even more sophisticated, other bodily fluids (such as urine and saliva) and even breath could be used. We're not there yet though. 

I agree that a second opinion would be beneficial. 

Thanks Judy! That's super interesting about the liquid biopsy, I will ask my lung doc about that next time I speak with her. They have scheduled me for a repeat CT guided biopsy again Aug 5 now though, so hoping they get a tissue sample this time around. 🤞

How neat that eventually they'll be able to do these biopsies with other bodily fluids, so cool and amazing how medicine just continues to change and develop!