IMA (BAC) recurrence 21 years and 24 years out

blaze100
Posts:18

I had a 10 cm BAC mucinous removed from right lung in 2000 at age 46, never smoker. Around year 2012 I switched to yearly chest-rays which always came back OK. In 2021 (age 67) I had a chest CT which showed a new 2 cm spot in my lower left lobe. It tested as BAC mucinous, KRAS G12D, low PDL, low tumor burden, EGRF neg, Exon 20 pos. It had a 4.4 SUV on PET. I had it zapped with SBRT and it has gone away.

In Spring 2022 a follow up CT found a new 4mm spot in my upper right lobe. Ground glass. Over the next year it grew to 1.4 cm. It has SUV of 2.7. My last 6 month scan shows it has now grown additional 2mm to 1.6cm. It is difficult to biopsy and I am now 70 with CHF so we watch. Also I had radiation to my right lung in 2000 possibly this area so hesitant to act. Plus I am short of breath right now, I don't have much lung tissue left to spare.

I go see my oncologist tomorrow so having sleepless night tonight. Wondering if you have any thoughts on how to proceed. This spot has not been biopsied but I suspect it is same as my previous lung cancers. Contemplating attempting robotic bronchoscopy biopsy. I am hoping my oncologists says to continue watching and collect more growth data. Anyway that's what I want to do. If it keeps growing at this rate, I'm thinking that with CHF and my age (70) that it might be best to try to peacefully co-exist with it.

Are there any new targeted therapies in the pipeline for G12D? Any treatment ideas would be helpful. Does Dr. West ever consult with patients?

Forums

JanineT GRACE …
Posts: 651
GRACE Community Outreach Team

Hi Blaze,

 

As much as I hate to say it, Welcome back Blaze.  It sounds like you're otherwise feeling good and enjoying life which is a wonderful place to be.  It makes sense that you want to balance the side effects of new treatments with living the rest of your life well.  You have a complex situation in which only a doctor with all your medical info and your input can help you form a plan.  It could be that no treatment is necessary unless symptoms arise or get worse.  Treatment could be a short round of something just to knock it back.  2 mm in 6 months could literally be nothing (even the same person reading the same scans can be off that much) but it is certainly not much.  An in-person or virtual consultation with a lung cancer specialist at an NCI-Designated Cancer Center is a good place to start.  Dr. West was named Vice President of Clinical Development at Summit Therapeutics last fall.  I'm afraid he wouldn't be able to help from here since your case is complicated and I'm not sure if he still takes consultations but you can contact him through his website and ask. 

It's good to hear from you and that you're still balancing cancer and life.  So many find that too difficult and move much too quickly through the vast treatment options. BTW, KRAS g12d treatments are still in the early stages of cliinical trials. EGFR exon 20 insertions have a couple of treatments though they can be harsh. 

 

I hope you keep us posted and more than that I hope you do well and continue to enjoy your retirement on the coast.

All the best,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

blaze100
Posts: 18

Waiting for my appointment with oncologist this morning. Thank you for the response. It helps. <3

Dr West
Posts: 4735

It sounds like you’re thinking of this in a very appropriate way. Specifically, it sounds like the growth of the nodule is rather modest, though keep in mind that the change in diameter that sounds small is actually in 3 dimensions, so the change in volume is more: if a nodule grows from 1.4 to 1.6 cm, that’s a nearly 50% increase in volume (presuming it’s a perfect sphere, which it isn’t — this is just a rough concept). I don’t mean to suggest that this is an imminent threat, but growing from 4 mm to 1.4 cm to 1.6 cm shows it’s growing at what is probably a clinically significant rate by my estimation, in the context of not having a clearly greater threat over the next 3-5 years. The most important other factor is how limiting the CHF is — if it’s causing your shortness of breath and is a significant threat to how long you’re likely to live over the coming years, the growing lung nodule is probably secondary and easier to ignore. But if it’s just percolating in the background, also just slowly advancing without a clear timetable, the lung nodule rises to the level of being a more realistic threat. Being 70 is different from being 40, but that in itself isn’t a real limitation, given how many people are doing well even beyond 80.

 

As for a biopsy, the group I worked with for a long time, which had a lot of experience with these situations, had an approach that there was a higher compulsion to biopsy a growing nodule if there was no prior diagnosis of lung cancer. However, in a situation like yours, where there is a history of a lung cancer not just once but on a couple of occasions, previously documented by pathology, it is not a real leap to diagnose a consistently growing lesion that shows the exact same characteristics as the same cancer process. After all, this has now been growing steadily for years, which is not what you would expect for a benign process. We would always prefer to get tissue, both to confirm the diagnosis and to test the current molecular profile (and Janine is exactly right that KRAS G12D, very typical for a mucinous BAC, doesn’t have a clearly promising targeted therapy in early 2024), but there is some degree of risk involved with the procedure, and it is always a balance of anticipated benefit vs. risk, the benefit being not that great when you are at least 99% certain this is the same process you’ve already documented.

 

I would just say that while radiating the lesion would be associated with some damage to surrounding lung tissue that will make the scan look abnormal there and may contribute to shortness of breath, the lesion growing over time may prove to be the greater threat — and if it’s necessary to radiate it at some point, there will be less damage radiating a smaller lesion than a bigger one.

 

Good luck.

 

blaze100
Posts: 18

I had the robotic biopsy but they were unable to reach the spot as they were blocked due to radiation scarring in the Hilar (from treatments in 2000). My pulmonologist took some biopsies of suspicious tissue on her way out, and that came back negative. You were right about the risks. Recovery went well though except for sore throat.

So I will begin SBRT (5 treatments) next week. I called my old medical center that did the radiation in 2000. I spoke to a very nice lady who personally dug deep into their record vaults. She found pictures of my chest with the old radiation field drawn out on my chest. My spot is outside that old field. Yay!

The test anxiety was extreme this time. I've spent months whimpering over it. I am thinking to ask my doctors if it is OK to go back to yearly scans. If there are no effective targeted therapies yet, then closely monitoring this spot after SBRT treatments seems pointless right? It sure would be nice to forget about it for a year.

Thanks again for your thoughts. I am so very grateful for your expert BAC advice over the last 24 years. Barb

JanineT GRACE …
Posts: 651
GRACE Community Outreach Team

Hi Blaze,

I'm glad you've got a plan of action, I hope it goes well, and then can take a long break from scans and anxiety.  I'll let Dr. West know you've posted a follow-up and a thank you. 

Best of luck,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

JanineT GRACE …
Posts: 651
GRACE Community Outreach Team

Hi again, Dr. West isn't able to log in at the moment but he did say, "24 years -- wow!"

I'm sure you know Dr. West has spent a good part of his oncology career spreading the word (to oncs and patients)about BAC and the importance of using a light touch when treating this slow-growing cancer.  Unfortunately, many oncologists and even more patients don't want to treat this way.  I know he is legitimately proud to see the level heads that got you here.  

Take care and keep us posted,

Janine 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

blaze100
Posts: 18

Just a note that I completed the SBRT (3 treatments) last week. Now we wait and see. It took my 2021 tumor about a year to completely resolve. I read somewhere that radiation kills cancer cells by damaging them so they they can not reproduce. So the cancer cells don't actually die until they try to split in two. So if a cancer is slow growing, then the cells are slow to split, so then the tumor will be slow to die. Right?

JanineT GRACE …
Posts: 651
GRACE Community Outreach Team

Glad it's done and I know it's a relief.  I understand that cells' life cycle is important in radiation planning but don't know about the slow growth of BAC being the reason it took a year to resolve.  Radiation does continue to kill cancer cells for some time after.  Also, radiation causes inflammation that can take a year to resolve and often causes scar that looks like nodules on CT.

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

blaze100
Posts: 18

Yes, it is a relief. There is nothing to do now but focus on eating hearty pot roasts, yummy fruits and veggies with butter without guilt as it is what's needed for healing. <3

JanineT GRACE …
Posts: 651
GRACE Community Outreach Team

(At least for the carnivores) Indeed, the best part of healing is eating hearty pot roasts and things with butter, and dare I add bacon and bacon grease all in the name of healing.  <3

 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.