Hello,
My current situation is that I have been on Tagrisso 80 mg for 13 months. First scan showed the 15+ nodules I had in my lungs all disappeared with the exception of 1 which was reduced to a 1/3 of its size (from 1.8 cm to 0.6 cm). This was consistent until Feb 2018 CT scan showed a small spot on a rib, which was referenced in the May 2018 as stable. I was not told about this spot, but experienced severe pain in this area in Jan 2018 with chest xrays done and nothing revealed. Oncologist told me it was likely muscular in nature. Last month at a regular follow up, I told the PA I have had intermittent pain in the rib and that it was becoming more frequent. I was sent for a CT scan which stated that the spot in the rib appeared to be a healing fracture, possibly pathological (I've not had injury to that area.). Unfortunately, the scan also revealed the lung nodule, which had been stable for over a year, was now double the size it had been (1.2 cm).
The treatment recommendation has been radiation to the lung nodule, and to defer treatment on the rib (We will reconsider if pain becomes unmanageable.). The MD resident who reviewed my scans with me did a wonderful job of walking me through the scans and explaining to me when the spots first appeared and their development. He asked if surgery or biopsy were being considered. I told him that the tumor board had been consulted and radiation was the recommendation. I told him I would follow up about the biopsy because I understand that the growth of this nodule and the rib issue might mean progression on Tagrisso and new treatment may be in future sooner than I hoped.
I have asked my radiation oncologist about biopsy who deferred since it is the decision of my primary oncologist. An email and phone call to him have been unreturned thus far. I am very curious about what the standard of practice might be for a situation like mine. Would a biopsy be typical?
Thanks for any information you can provide.
Reply # - August 29, 2018, 09:17 AM
Hi kelybe,
Hi kelybe,
I'm sorry to hear that you're experiencing chest pain and that your scan shows an increase in the size of the nodule. With well-tolerated TKIs such as Tagrisso, when there is overall stability but one area of progression it is common to continue the TKI and treat the progressing area locally, with surgery or radiation. The hope is that it's just one rogue spot and treating it locally will take care of the problem, while the TKI keeps everything else under control.
The rib finding is a tougher issue. In the context of an existing stage IV lung cancer diagnosis, a rib lesion that is causing increasing pain is assumed to be a metasisis and the typical intervention is radiation. In your case, it seems that the pain is intermittent, although becoming more frequent. Cancer pain doesn't tend to be intermittent, but rather more constant and increasing in severity over time. The healing process of a rib fracture tends to be slow, with plenty of opportunities to aggravate it during that process. That could account for the intermittent nature of your pain. There might even be a recent change in your physical activities that has helped to increase the frequency of the pain episodes. Of course, it's still a mystery how you could have fractured the rib.
With that in mind, and given that the lesion has been stable over the last several months, it's not surprising that your oncologist doesn't want to proceed with an invasive biopsy. He doesn't want to put you through the discomfort and risk of the procedure only to find it is a healing fracture. Perhaps he or another doctor could suggest some ways to avoid aggravating the possible rib fracture, in an effort to aid the healing process.
Good luck with getting some answers, as well as relief from your pain.
JimC
Forum moderator
Reply # - August 29, 2018, 11:16 AM
Hi kelybe,
Hi kelybe,
Biopsy on bone is not a very good option so bone mets are usually diagnosed through CT scanning.
I wanted to add to Jim's excellent comments. I often wonder if how one describes their pain gives the wrong impression. Certainly how the doctor goes about finding an answer about someones pain is important (the questions asked about your pain) as well as knowing how to read a patient's way of speaking (part of the art of oncology). While it's true pain from cancer mets in the bone tend to move in a direct line of intensity, changes with the amount of pressure on the bone give different readings. According to the radiology report my husband had destruction of 3 ribs. It took some time before he described the pain as other than intermittent and he described it as sometimes better than other times. Looking at the whole picture of how his pain evolved you can easily say it grew over time but in the moment it didn't look the way it is described in medical literature. You may know this by now but it's not likely anyone with cancer ever experiences a typical journey.
I'm not trying to discredit Jim and every oncologist on the block. Just putting my husband's experience with pain (he also had brachial plexus involvement) out there for example of why we use the oft used phrase in medicine, "tends to".
A "pathologic fracture" is a fracture caused by disease that make bone weak as opposed to a "traumatic fracture" Osteoporosis as well as cancer can cause pathologic fracture.
When my husband was in treatment I called the onc office with questions I talked to a nurse not the onc. That's usually the norm and I can't say how wonderful I find every one of the nurses that take care of people with cancer every day. They are a wealth of information. I hope you don't feel like you're not getting the best input just because the onc doesn't personally call back.
Keep your onc team posted on new and worsening symptoms.
All best,
Janine
Reply # - August 29, 2018, 12:48 PM
kelybe, I think Jim and
kelybe, I think Jim and Janine describe a balanced approach. Have you been prescribed anything to help manage pain?
Reply # - August 29, 2018, 01:20 PM
excellent question onthmark
excellent question onthmark
Reply # - August 29, 2018, 06:19 PM
Thanks so much for the
Thanks so much for the information. I am sorry I wasn't clear. I understand why we are leaving the rib alone for now. This is the 5th bone metastasis I've had if.that is potentially what it is, the second area where fracture has potentially been a part of the picture.
I am wondering about biopsying the lung nodule that has doubled in size in the last 3 months. Is there any benefit to that?
Thanks so much!
Reply # - August 29, 2018, 06:33 PM
Sorry, neglected to answer
Sorry, neglected to answer fully. Yes, I have been given meds for pain bur am only able to use them sparingly. I have difficulties tolerating most pain meds which has complicated my treatment.
I appreciate you sharing your husband's experience. My cancer was discovered due to pain that developed in my back related to a met. A few months after that was treated, I had bone pain that developed similarly in my hip and had to request tests, asking for a CT scan when the xrays showed nothing. The CT scan showed a new met. I had a similar experience with a few vertebrae.
Thats a good point regarding communication. It is typically the nurse who responds to my concerns and I'm completely fine with that. The frustration here is that despite my attempts to reach out, no one is responding at all.
I will call again in the morning, but it has been about a week and I have gotten no responses, even though my concerns have related to a worsening of several symptoms--pain, dizziness, severe vision problems that have just developed over the past few weeks, etc.
Reply # - August 29, 2018, 11:00 PM
Call them everyday at least
Call them everyday at least once. I'm not sure but dizziness and vision problems sound like they could be due to the brain mets and need to be treated if possible asap.
Repeat biopsies are a fairly new concept done when a tki has worked but stops working indicating a new mutation known as acquired resistance. Repeat biopsies are done at this junction if there is a potential tki to combat the mutation, then you look for that mutation via biopsy or maybe even blood test (aka liquid biopsy) As I recall your tki didn't stop working so your mutation would be assumed still the driver mutation thus no need to a biopsy.