Precision radiation for lung nodules

[Rose Kaiser]

I had 3 SBRT treatments in January on a lung tumor. I had no side effects at all until May. I had been coughing all the time and had shortness of breath. A CT scan showed a mass on the lung which ended up being scar tissue. I have been diagnosed with COPD and am on Trelegy which has helped the cough tremendously. On my second round of prednisone hoping it will help the shortness of breath. I feel fine but cannot bend over at all without having to rest right after to catch my breath. I've only been seeing my pulmonologist since May so hoping there are other medicines that will help. 

I haven't read of any other members who have had this same side effect so thought I would tell my story.

[ColleenRae]

1 minute ago, Rose Kaiser said:

I had 3 SBRT treatments in January on a lung tumor. I had no side effects at all until May. I had been coughing all the time and had shortness of breath. A CT scan showed a mass on the lung which ended up being scar tissue. I have been diagnosed with COPD and am on Trelegy which has helped the cough tremendously. On my second round of prednisone hoping it will help the shortness of breath. I feel fine but cannot bend over at all without having to rest right after to catch my breath. I've only been seeing my pulmonologist since May so hoping there are other medicines that will help. 

I haven't read of any other members who have had this same side effect so thought I would tell my story.

Thank you for sharing this, Rose. I am sorry you are experiencing this side effect.  Both my surgeon and a second radiation oncologist I consulted with advised that SBRT will definitely change the appearance of future CT's (due to scar tissue from radiation) and that readings will need to be done by someone qualified and with the necessary skill to distinguish between a "mass" / concerning nodule and scar tissue. I was also advised that, yes, a side effect of radiation can impact the quality of one's breathing capacity (which is one reason why we're delaying radiation tx for a small slow-growing nodule; I've already lost some lung capacity from a RUL lobectomy). Both doctors said radiation can lead to chronic radiation pneumonitis.

Was the COPD diagnosed AFTER the radiation? Did you have any shortness of breath or cough prior to radiation? I'm not sure if COPD is related to the radiation tx's. Maybe the radiation tx's aggravated the COPD? My first thought would be the unfortunate side effect of radiation pneumonitis. Hopefully someone else can share regarding their experience with this. There is another category here on the site regarding radiation... Have you posted anything there?

Hang in there... I'm really sorry to hear this and hope that you will find the right treatment to reduce if not eliminate the breathing issues you are having. I do hope it improves for you. Please keep us posted. 

[Pattymac]

Yes, so sorry to hear this Rose, I had been told of radiation pneumonia is a side effect, and many others! My radiation oncologist informed me of the scar tissue also that may form and look like cancer and need a specialized radiologist to read the scans from now on. Mine is also a slow-growing cancer, who knows what slow really is, they couldn’t tell me, so I made the decision to get rid of it now at 63, instead of trying to do it at an older age....if that makes sense! I also have COPD and Emphysema and I’m hoping it doesn’t get worse due to treatment. I hope they can help you with your breathing, I was told by my thoracic surgeon that they can also do surgery and take out the bad parts of lungs to help with breathing!!

[Rose Kaiser]

ColleenRae - The COPD was diagnosed several months after the radiation. I started having a terrible cough and some shortness of breath and that's when they did a scan and determined scar tissue had formed. Other than some normal minor Keytruda/Atlimta side effects, I was feeling really good until then.

[GaryG]

My experience with COPD. 10 or 12 years ago I went to see the pulmonologist because of a cough that extended more than 6 months. After a measurement of lung volumes and diffusing capacity he decided i had COPD and put me on an inhaler(QVAR). I was chocked because I was very active in sports including mountains hiking and long distance walking among other sports. Few months later  my cough went away and I resumed my sporting activities. During an overseas trip I left my QVAR  behind and to my surprise I did not see any difference between taking it and not so I discontinued it's use and spared my pocket $100/month.

As I began cancer treatment the oximeter read between 92 and 94. After the fist infusion I had a cough spell that almost killed me. After the third infusion I hardly cough anymore and the oximeter reads 98 constantly.

I concluded form experience that doctors throw the COPD thing at people too soon.  Personally I will wait a bit before deciding on the COPD diagnoses. BTW I thought emphysema  just as another component of COPD

[catlady91]

On 9/10/2020 at 8:03 PM, Tom Galli said:

Catlady91,

CyberKnife is a form of precision radiation therapy. I had thoracic surgery, a thoracotomy, to remove my right lung while staged at IIIB. Before surgery, I had 6 weeks of conventional radiation and 6 weekly infusions of Taxol and Carboplatin. After surgery I had a recurrence of 3 tumors to my left (only remaining) lung. Then I had 6 additional cycles (1 infusion every three weeks = 1 cycle) of Taxol and Carboplatin. Then a recurrence of 2 tumors. That was treated with 6 additional cycles of combination chemotherapy: Taxol and Carboplatin including the targeted therapy drug Tarceva. This was in 2005 and doctors did not yet know that Tarceva was only effective against adenocarcinoma.  I had squamous cell NSCLC. But this treatment killed 1 tumor and reduced the second tumor in size. My last therapy was 3 session of CyberKnife precision radiation to zap that persistent tumor.

Stay the course.

Tom

Thanks for the reply Tom. Gosh that sounds like it was a huge ordeal for you, having a lung removed and the cancer coming back to the other lung. Usually stage IIIB is inoperable. Did the doctor's want to try surgery to remove the tumours when they came back to the other lung?

Sorry for asking so many questions. I've heard that surgery is seen as a "cure" or in American terms the treatment to long lasting NED, but it seems that despite surgery, the cancer still comes back. I felt so down about my mum not being able to have surgery. Despite the tumour having shrunk hugely (from 37mm to 3mm) they still want to go with immunotherapy and haven't said anything about surgery. Surgery I guess is pretty invasive and risky. What was is like after your surgery? Did you take a long time to recover?

[Tom Galli]

Catlady91,

My doctors and I decided to treat my lung cancer aggressively. So I had pre-surgical radiation and chemo to shrink the very large tumor in my right main stem bronchus. The treatment worked but the radiation complicated healing. I had not one thoracotomy but 3. The first removed my right lung completely, and the second two were to repair and re-suture stitches that caused an air leak to my now empty chest. My surgical experience was a nightmare. In the footnote to this post is a book that reveals all the details about my diagnosis and treatment.

Ironically, although the pre-surgical scan showed NED, a pathology of the removed tissue did show metastatic indications. So, my first line (radiation and chemo) did not work, nor did my second line (surgery). I actually had 5 lines of treatments before my lung cancer stopped recurring. Normally one has post-surgical chemotherapy but I wasn't able to receive it because of all my surgical procedures. That could be the reason for my post surgical recurrence.

Even Stage I lung cancer disease is stubborn. This study (I cite in a blog) suggests about 33-percent of successfully treated (NED result) disease recurs. Stubbornness is what makes lung cancer so deadly.

I think your mom is doing very well in immunotherapy. I hope future scans continue to show improvement and indeed a NED in her future.

Stay the course.

Tom

[catlady91]

1 hour ago, Tom Galli said:

Catlady91,

My doctors and I decided to treat my lung cancer aggressively. So I had pre-surgical radiation and chemo to shrink the very large tumor in my right main stem bronchus. The treatment worked but the radiation complicated healing. I had not one thoracotomy but 3. The first removed my right lung completely, and the second two were to repair and re-suture stitches that caused an air leak to my now empty chest. My surgical experience was a nightmare. In the footnote to this post is a book that reveals all the details about my diagnosis and treatment.

Ironically, although the pre-surgical scan showed NED, a pathology of the removed tissue did show metastatic indications. So, my first line (radiation and chemo) did not work, nor did my second line (surgery). I actually had 5 lines of treatments before my lung cancer stopped recurring. Normally one has post-surgical chemotherapy but I wasn't able to receive it because of all my surgical procedures. That could be the reason for my post surgical recurrence.

Even Stage I lung cancer disease is stubborn. This study (I cite in a blog) suggests about 33-percent of successfully treated (NED result) disease recurs. Stubbornness is what makes lung cancer so deadly.

I think your mom is doing very well in immunotherapy. I hope future scans continue to show improvement and indeed a NED in her future.

Stay the course.

Tom

Thank you for taking the time to reply Tom. Your story is incredible and inspires me and others. Despite so many recurrences you're still alive and well and NED for over 15 years! Even 10 years ago stage 3 lung cancer was a death sentence. It's incredible how many treatments there are now and that stage 3 and even stage 4 lung cancer is no longer a death sentence for many. 

I'm praying to God that the immunotherapy will prevent the cancer from returning and that her body is responding well to immunotherapy.