Precision radiation for lung nodules

[Pattymac]

Hi All, my daughter (little miss money bags) posted a question several days ago about my lung nodule that I’ve had for 1 year and 8 months! I saw my Thoracic surgeon on Friday and had a CT scan last Monday to check on the nodule! It has not gotten larger, but it has filled in a bit which he said was concerning, he does think it is very slow growing, but it is lung cancer. He said I have 2 choices, both of which he approves of, one is surgery, lobectomy, and the other is zapping it with radiation! He seems to think because it is small and located in a tough area (middle left lung and middle deep) that radiation could get rid of it?? Does anyone on this site have and information on this? He had never mentioned radiation before, only surgery, I am happy to try radiation but would like more info! I am meeting with a radiology oncologist on Wednesday to discuss, thoughts anyone???

[ColleenRae]

Hi Pattymac,

I'm glad you turned to this site - there are some very well-informed people here to help.

I had a similar situation. I had my first lung CT in 2016 and there were some small nodules that weren't too concerning at that time, but I had a history of smoking, so that put me at greater risk. I had another CT about six months later and we started watching one small nodule in the upper right lobe, in the middle, deep and in a very difficult place to biopsy.  We continued to watch. It grew slowly and became more dense, but still remained small (around 8 mm). In 2018 I had another scan and I was told it was likely cancer and we discussed radiation or lobectomy. The radiologist felt he could zap the nodule, but he was not willing to provide treatment without a biopsy. After some research, I learned the biopsy posed it's own risks due to the location of the nodule and even if it came back showing the nodule was not cancer, the doctors would not be satisfied (i.e. biopsy sample could have a high false negative). A biopsy, in my opinion, seemed like one unnecessary step at this point and I wasn't too thrilled about the risks; I felt I'd just as soon have surgery. My other option was to have a lobectomy - a risk though, not knowing if this was indeed a cancer. I ended up having a PET scan and the uptake was something like 3.7; enough to convince the surgeon and me that this was a likely cancer and he was willing to proceed with the surgery.  I'm glad I did, as the pathology report confirmed it was cancer and I am confident my surgeon was able to remove the entire cancer in that area.

I think I might have opted for radiation versus lobectomy (just to avoid surgery) had the radiologist been willing to do so. But without a confirmed pathology report that the nodule was cancer, he was not willing to provide radiation treatment. From what I have read, however, surgery is still considered the gold standard in treating these small nodules with very good outcomes.

Almost two years since the lobectomy (surgery is all I had; staged 1a with no lymph node involvement), I am now being followed for another slow growing small nodule in the upper left lobe. I am meeting with a radiologist tomorrow a.m. as my pulmonologist has requested. The surgeon I had, however, felt comfortable in recommending another scan in 12 months, and did not mention radiation treatment. I am very torn between the two doctors' recommendations at this point... pursue radiation now or keep watching and waiting on this one.

I will look forward to hearing what your radiologist says after you meet on Wednesday, and I will share what I learn tomorrow from the radiologist I am seeing if it's helpful.  Hopefully you will get some good, sound, experienced advice from others here regarding this.

[Pattymac]

 Thanks for replying Colleen! Yes I will post what the radiology oncologist says! I am just taken back as radiation was never even mentioned to me in the last 1 year and 8 months of following my nodule (12mmX15mm)! All that was talked about was surgery and taking my lobe on the left! If this was an option for many with a single nodule, no lymph node involvement, and the size being smaller, why have I never been told this?? I’ve had plenty of appts with 1 pulmonologist, 2 thoracic surgeons and many CT scans, Pet scan(no uptake), and a bronchoscopy with biopsy that I guess didn’t hit the mark!! I say SBRT me, I can finally do something to help myself!! Maybe this is a new treatment?? I have no idea! Maybe my oncologist won’t radiate it without a biopsy either, we shall see! 

[ColleenRae]

Wish I knew why in your case as well... it must be frustrating.  When was your last PET scan? It sounds like you've been watching this quite carefully, so I would be wondering the same thing - why radiation had not been mentioned before.

Will look forward to what you learn.  You sound very positive and pro-active; that will serve you well!

[Pattymac]

I had a CT/Pet scan last July, no uptake at all, but because my CT scan last Monday showed a bit of filling in on the nodule, my Dr. recommended either surgery or this radiation! I am quite amazed at the hundreds of thousands of people who have nodules show up on a random CT scan and are followed only by CT scan?? Maybe zapping them is an option to take away the fear of scanziety (thanks Tom) and the worry of future scans! Thanks for posting, I will share whatever I find out! Hoping for the best!!

[ColleenRae]

Yes, there must be information / reasons for this that we aren't aware of (but we'll hopefully soon learn!).  It DOES NOT make sense to go through months, years of CT scans and anxiety if we could just zap these away as they pop up. I know there are side effects to radiation to be considered. I really do need to learn more.

I'm hoping for the best for you / all of us, as well!

[LexieCat]

Zapping non-cancerous nodules would be dangerous, I think. I read somewhere what percentage of the population has nodules that are non-cancerous--I don't remember the figure, but it was pretty significant. With all treatments, they have to weigh the risk of harm vs potential benefit. Radiation always carries risk--even diagnostic scans. Unnecessary radiation can cause cancer. Plus radiation can have some pretty unpleasant side effects. 

In short, yes, there are good reasons not to zap every nodule you're walking around with. 

The treatment protocols that have been developed over the years aren't perfect--they are constantly working to improve them. And reasonable doctors can disagree on what's the best course for a particular patient. That's why second opinions can be important. But there's no single answer that's right for everyone. The best we can do as patients is to inform ourselves as much as we can and ask questions. And have good doctors.

[Pattymac]

Hi lexiecat, I was never saying lets zap all nodules!!! maybe just the ones that your drs think may be cancer, and why not, it’s much less invasive than surgery! At least it’s a start, and we shall learn more and post  it! Just know, I have gone to some of the best Drs in the country.....University of Pennsylvania, our golden standard here in Pa.! he was my second opinion who is sending me to a radiology oncologist! My nodule has been deemed as cancerous, so no harm in trying something less invasive!

[Pattymac]

Also, I agree with you Colleen Totally, good luck with your appt tomorrow, please post what you find out....thanks so much!!!

[Tom Galli]

Ladies,

There is uncertainty without a biopsy, but that is minimized somewhat by your surgeon's characterization of the nodule "filling in." Non cancerous nodules don't fill in and don't  normally change is size or volume.

Perhaps your doctors suggested a PET/CT that can determine metastatic disease, but slow growing cancer tumors often do not express SUV (Standard Uptake Values) consistent with metastatic disease.

I understand your reluctance for a biopsy given the nodule location. So that leaves you three choices: do nothing, surgery or precision radiation. Each choice has risk.

I have a bias for precision radiation. I had 5 recurrences and CyberKnife SBRT finally killed the stubborn tumor in my lung. Moreover, I've had no recurrences for almost 13 years. There is a secondary effect of precision radiation, not yet conclusively proven, but acknowledged by the medical community: the Abscopal effect. It is explained in this link. I believe this is what caused my very stubborn cancer to stop recurring.  

In another thread I suggested questions for CollenRae to ask of her radiation oncologist.

Stay the course.

Tom

[ColleenRae]

Thank you, Tom.  I had just read about the Abscopal effect!

One of the main things that has kept me positive about radiation and dealing with recurrences is your story... Thank you for continuing to give back to all of us and encourage us. I really doubt many of us would continue to participate here in this forum as you do after all this time. 

I forgot to bookmark something I found on line a few days ago and can no longer find it. I was trying to see who provided Cyberknife SBRT in my state and found a site (I think it was the NIH). It said the cancer clinic in my area has "tomography" ("Tomography is imaging by sections or sectioning through the use of any kind of penetrating wave"). I saw some other locations where it specifically stated SBRT or Cyber. Do you know what the difference is, if any? The cancer clinic's web site that I'll be going to doesn't specifically say they offer cyberknife.  Is cyberknife interchangeable with SBRT? If I'm going to get this done I'd like to make sure I go to the right place! (Actually, I really want to go to YOUR radiation oncologist!)

Also, did you have fiducial markers placed? I'm also trying to learn what the difference is between targeted therapy, proton therapy, etc. A lot to learn. Thank you!

[Pattymac]

Thanks so much for posting Tom, you are so knowledgeable about this with real life experience! I’m so happy to hear that SBRT finally killed your tumor! I am truly amazed that this is the first I’m hearing about this “option”! Praying this is an option so many can choose this instead of surgery, if your situation is one that can be cured by doing it! I will find out more after my appt on Wednesday! The option to do nothing is not something I’m ok with anymore, nor is surgery, so hoping I can finally do something to help myself and do SBRT! Thanks Tom for your input, I appreciate it more than you know!!

[Tom Galli]

CollenRae,

Radiation therapy types and names are complicated. I'll use this link to simplify the subject. When at the link, read down to the right facing triangle "How is radiation therapy administered." Then scroll down to another right facing triangle "Types of EBRT." For discussion purposes, I call these types of EBRT precision radiation, and you can see there are a lot of methods. There is also a lot of similarity. They are all computer controlled, deliver high energy doses of ionizing radiation precisely (except for proton therapy), and require 3 to 5 treatments that generally last less than 30 minutes each treatment.

I had SBRT but the manufacturer of system trademarked the system as CyberKnife. My CyberKnife treatment required fiducial surgical implants. My daughter, however, had a form of SBRT to treat her meningioma brain tumor called IGRT (Image Guided Radiation Therapy). This method does not require fiducial implant, and it was very effective in frying her tumor. Rather than search for clinic that has precision radiation equipment, I'd focus on finding a radiation oncologist you are comfortable with and letting the doctor pick the treatment location. I'm quite certain there are many locations in the Seattle area that have precision radiation equipment.

Targeted therapy is a form of chemotherapy used to treat certain forms of adenocarcinoma. It is not associated with precision radiation. Proton therapy is a form of precision radiation that uses accelerated, high energy protons rather than ionizing radiation. Both high energy protons and ionizing radiation fry tumors but protons allow high order precision in controlling the depth and extent of treated tissue. Proton therapy is very expensive because the facility contains perhaps a mile-long proton accelerator that is used to generate energy. It is also difficult to get insurance approval to use proton therapy when SBRT can do the same job at far less cost.

Pattymac,

I do hope your consultation goes well with your radiation oncologist. Keep us posted on the results.

Stay the course.

Tom

[ColleenRae]

Excellent information and advice Tom Galli... Thank you very much.  I have been reading a lot this evening and the link was very helpful (also had questions to ask, which I have printed). I have two questions for you, if you don't mind...

You stated "Rather than search for clinic that has precision radiation equipment, I'd focus on finding a radiation oncologist you are comfortable with and letting the doctor pick the treatment location". I agree that the relationship with the radiation oncologist is of primary importance, but how do I let the doctor pick the treatment location? I may really like a radiation oncologist in Seattle, but he's not about to pick where I live (2+ hrs away). He/or she is going to choose the clinic / hospital they are associated with. I'm getting tired, sorry, but I'm not sure I understand this part. 

My second question is WHY is radiation being suggested? I read the following on the link to the Lungevity page discussing radiation treatment: "SBRT is often recommended for early-stage patients (stages I and IIA with no spread to lymph nodes who either cannot or choose not to have surgery."  I'm not sure what stage I'm considered now with this new nodule. Am I still stage 1a? How would they really know? I did not have lymph node involvement two years ago, but what about now? I have not been told I cannot have surgery nor have I chosen not to have it.  No one has even discussed a choice with me (maybe my surgeon will when we speak later this week although he did mention radiation as a future treatment the last time we spoke).  Is it because I had a prior lobectomy? My lung function is still considered good. I know I'm old (!) as I'm heading towards 62 years in a few days, but I wouldn't think that is considered advanced age, or maybe I'm in denial...ha! How will they know what type of cancer this nodule is if they blast it away / if it's never biopsied? Wouldn't it be useful to know for any other future recurrences? I've never had any biomarker (?) testing done / none was done when first cancer was surgically removed. It seems to me it would be a good idea to know if this tumor is the same as the last one for future treatment if needed.

I realize these are all questions I will need to ask the doctors, so please don't think I am expecting you to answer them...! The wheels are just turning tonight and I'm thinking out loud here! I think I'm anxious about the appointment and should really get some sleep before I have to run out in the a.m. I have not been anywhere - no enclosed spaces, no grocery stores, etc. for almost six months now. Unbelievable. I'm anxious about having to go inside the doctor's office. Really wish they could have done a consult via telemed with COVID lurking about.

Thanks again, Tom  I'm trying to stay the course and you help keep us all on track.

Colleen

[Pattymac]

Tom, Thanks for all that information, this is quite a learning experience for me! good luck Colleen with your appt. today! Please let us know how it goes!!

[Tom Galli]

Collenrae,

I just now saw your response. The forum site has been down all day. I think it best you ask the doctors about your unique situation. All your questions are valid. All I can do is explain (in general terms) what the technology is. Your doctor is the best source for treatment of your cancer. 

Stay the course. 

Tom

[LexieCat]

Colleen, I don't know about your doctor's office, but the place where I see mine is very strict about COVID risks. No visitors are allowed in the building--patients only. Everyone who comes in is screened with questions and a temperature check. The waiting rooms are arranged so everyone is appropriately distanced. The office staff have plexiglass screens. The doctors, nurses, and other staff are appropriately masked/gloved/shielded.

I feel very safe there.

 

[ColleenRae]

First, I am out of "thanks" so please know that I am grateful for all responses!

Thank you, Tom, for your response.  I will post later re: my visit with the radiation oncologist this morning; today is a very full day.

Grateful for what I learned here from all of you as I would not have felt prepared or able to follow what the doctor was discussing without that help. I did not even get to ask any of the questions I had printed out or written down in preparation for the appointment.  I was able to ask questions - by interrupting the doctor - I quickly learned that was how I was going to get to ask anything. He would answer my questions based upon what he was currently telling me, but he did not ask me if I had any questions when it was clear time was up. I felt very flustered by that point and a little angry with myself for not asking him the questions I had prepared. So what if my questions screwed up the appointment schedule.  I did tell him I was not ready to make a decision and that I was going to speak with my surgeon later this week. I've learned that they do not like it when we locals "go south" for medical care to Seattle...

LexieCat - You are fortunate they are strict.  By this morning I was not really concerned about COVID and told myself I was being overly concerned. I was more distracted by what I wanted and needed to learn at the appointment and assumed the clinic would be extremely strict as it is the Cancer Center.  But I have to admit - and especially after reading your experience - the precautions seemed a little on the lax side to me.  They did have a woman at the front entrance who took temps and asked why people were there. The two people ahead of me when I arrived both said they were there to see patients... So they were obviously allowing guests. I was very surprised by this. When it was my turn, the woman did not tell me my temp but asked me if I intended to leave my gloves on - I decided to wear them as I am low on hand sanitizer and they help remind me to not touch my face. I did not think it was any big deal, but she looked at me as if there was something very strange in my wanting to wear them. She had a face mask on but she did not remind people waiting in line to get in to stay six feet apart. I then went to check in and saw the waiting room is exactly the same as it was the last time I was there 2 years ago. Seating had not been arranged for distancing. In fact it was quite crowded so I decided to remain standing.  They did have plexiglass. The Dr. and nurse wore a mask but no gloves.  During the course of our conversation, the Dr. advocated for getting outside a lot. I said the trails were narrow and quite crowded when I did go out and he said the risk was very minimal. He did not express the same thing about grocery shopping, unless the store wasn't crowded.  I just had the uncomfortable feeling that they might be a little too lax in the clinic, although Dr. assured me they have had no COVID cases among staff or patients. 

[ColleenRae]

I found this link that, in my opinion, gave a pretty decent description of SBRT (the graphic chart illustration helped as well). It's a few years old, so I'm not sure how accurate or up-to-date the info is. I hope it's okay to post something like this...?  The radiation oncologist I saw today wants to move forward with SBRT, 5 treatments - 1 every other day for almost two weeks.  I will write more later, but thought I'd share this... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4635958/

[Tom Galli]

ColleenRae,

It is fine to post this information and it does cover SBRT.

I believe the number of treatments and interval vary from person to person. In my case, I had 3 treatments each day for 3 days. The chart in your source does describe the process.

Stay the course.

Tom

[Pattymac]

Went to a radiation oncologist this morning, liked him very much and I also am going ahead with SBRT for my nodule! Thank goodness to have an option other than surgery! He said it will be 3-5 sessions over a week and a half, luckily he said there is no hurry for me to do this, he said my cancer is very slow growing, but I want it over with asap!! Thanks for posting all the info about SBRT, I appreciated it greatly!!

[ColleenRae]

Pattymac ~ Very glad to hear your appointment went well! It is important that you feel confident in your provider and in the treatment you have chosen.  When do you plan on receiving treatment?  The radiation oncologist I saw yesterday said I do not have to do this right away (8 mm nodule) but he would not wait one year.  He said he was sorry to hear I backed out on buying a house as the treatments should not be difficult. I was sorry as well, but still a good thing as I would not have wanted to drive 2+ hours by myself every other day (with four border crossings each round trip!) for two weeks!  I'm looking forward to speaking with my surgeon tomorrow to help in my decision.

Pattymac - What did your doctor say about side effects or possible risks? When I met with the RO (radiation oncologist) yesterday, I asked him what risks or side effects there might be.  Due to the location of my nodule (upper left apex), he said there really aren't any concerns, with the exception of an increased risk of brachial plexopathy (a form of peripheral neuropathy) which can be quite painful and there is the risk of the damage being permanent.  He did not indicate any other risks.  I still felt I needed to know more, so I did some research last night and it appears there is a risk for radiation pneumonitis, and that the most important risk factor to develop severe radiation induced pneumonitis is interstitial lung disease. I recall one of my earlier radiology reports mentioning ILD after a scan, so I want to look into this further so I can truly understand and be prepared for this risk should it arise.

Will you be having a biopsy prior to radiation? Again, I'm just curious.  (I'm looking forward to the Lungevity conference this weekend for more info in the radiation session!) The RO I saw said they would normally do a biopsy to confirm the nodule is cancer before starting treatment, but since this looks like a duck... and given I have now had a similar, confirmed cancer... it is likely we know what we're dealing with (Bronchioloalveolar carcinoma (BAC)). He said there were risks with the biopsy. However, he also said that I will need to be seen prior to scheduling radiation to see if they can even see this nodule by positioning me, etc. If they can't, I will need to have the fidicuary markers placed prior to treatment - and he said they would then do a biopsy during that procedure.

I think it's fantastic (and the latest reports look very encouraging) that SBRT is an option, but I want to proceed with some caution and obtain more information. I asked the RO what "stage" I am considered to be in now. I was Stage1a N0M0 after my lobectomy. He said without a biopsy, they really don't know. My scans do not indicate any lymph node involvement or spread of the cancer, but this can't be confirmed if we just solely go forward with radiation. Zapping the nodule sounds very encouraging in eliminating the sucker, but as this would be my second treatment (after lobectomy), I think I want a little more information. The RO said he has had patients he has treated with multiple, repeated SBRT over the course of years - he said he's had one patient he's treated approximately 11x with SBRT over the past 14 years. That is encouraging, but I'm also interested in knowing what the long term effects on quality of life, breathing, etc. might be. He did say I would not need chemo for this nodule; SBRT will kill it. He was positive of that. He also said that there are studies coming out that are showing SBRT starting to slightly exceed lobectomy positive outcomes.  I asked him why I was being referred for SBRT (versus surgery, as I have not been told I'm not a candidate for surgery nor did I say I did not want surgery). He never really answered my question... Doesn't matter that much; I was just trying to find out if I was no longer a candidate for surgery - for reasons I might not be aware of - so I'll know it's no longer an option for me for future treatment. Radiation would be an easier option for me given my personal home situation vs surgery in another city again.

So... I may post more after I speak with the surgeon.  I'm sure all that I have posted here is nothing new to those who have been down this path. It's probably just helping me to sort through this by writing it all down here in a post.

 

[LexieCat]

Before I knew how advanced my cancer was this time--when I thought we were dealing with a single nodule--I did NOT want to lose another part of my lung. My doc indicated I might be a candidate for CyberKnife if it came to that. Now, of course, surgery is off the table, but I know I'd rather preserve the lung tissue at this point.

I called to make an appointment with another radiation oncologist at Penn Medicine, in addition to the MD Anderson-Cooper one I'm seeing next week (the office was closed so waiting for callback). Penn has Proton Beam therapy, as well as the other forms of radiation. And the guy I'm planning to see is one suggested by Dr. Drew Moghanaki, who's on Lungevity's Scientific Board. Never hurts to get another opinion. I can see him for the consult in his office in the same town in NJ where I go for many of my MD Anderson-Cooper visits.

[ColleenRae]

Glad you are able to get another consult / opinion. Really sounds as if you have some great options there in NJ.  Keep being proactive. You are an inspiration!

[Pattymac]

Yes, LexieCat, the doctors at Penn medicine are some of the best in Pa. and you being in New Jersey are close enough to be able to see them! My Thoracic surgeon was with Penn Medicine also and he was wonderful, even though I have decided not to have surgery! Good luck, you will be in good hands, always smart to get a second opinion!!!