To "wait" or not.....

[Debbie2003]

Hi - My Mom has posted here before using my screenname.

I have a question to ask....she has a 4mm lung nodule that the docs want to "monitor" over the next year. Well, after reading some of your posts, I'm wondering if that's a bad plan. Many of you have mentioned that waiting only ended up making things worse.

I'm not sure if you remember my Mom's situation, but basically she isn't well enough to have invasive surgery unless it's absolutely necessary. Her docs don't want to do a biopsy on the nodule. She has limited lung capacity as it is. The nodule is in the upper right lung. She had a larger one in the lower right lung, but it went away, so they're thinking it was an inflammation.

I guess I'm wondering if the waiting game is the best way to play this....so I'm turning to you because truthfully I trust you all more than her doctors.

[Eileen]

Hi Debbie this is a tough one--

-but how often is she getting scanned to see if it grows? If it is often, then I would kind of agree to wait ---especially after the other one disappeared

I happen to have a form of sarcoidosis (inflammatory tissue) my surgeon took some of it out when he operated---perhaps you Mother has that too?

so when I get scans, I light up and have nodules all over the place, the next time they are gone and in some new places---luckily my surgeon knew this so he did not operate again or panic me everytime he saw the scans---

I did have enlarged lymph nodes last November so he did a bronchioscope and a mediastinscopy and all was negative for cancer---

since she cannot have surgery, and the nodule is probably too small for a needle biopsy what alternatives are they suggesting?

regards

[john]

If there is a single nodule, then ask about Radio frequency ablation.

She may not be handle surgery, but RFA is a less invasive procedure.

A small probe is guided to the nodule and it is burnt out. So only a

very small incision is done and the lung is mostly left intact, unlike the removal of a lobe. Lung function I imagine would not be affected as much

4 mm is small, half of a centimeter. So as long as the scans are fairly often, watch and wait may be ok. It must be hard though

[DeanCarl]

Debbie,

I agree with the above. And let me add my voice to the chorus of making sure your Mom is checked frequently. As long as that is happening waiting might be the best alternative right now, as hard as that can be.

Dean

[Debbie2003]

I happen to have a form of sarcoidosis (inflammatory tissue) my surgeon took some of it out when he operated---perhaps you Mother has that too?

since she cannot have surgery, and the nodule is probably too small for a needle biopsy what alternatives are they suggesting?

They don't know what specific lung disease she has, but it is an inflammatory type like sarcoidosis. She is on O2 therapy, Prednisone and Imuran to keep the inflamation down and prevent scarring. They ruled out UIP/IPF but are still investigating. She has many docs, but one is thinking it could be a airways-type of disease. To complicate things more, she also has mild/moderate emphasema.

As far as what her docs are recommending, they really aren't suggested anything specific other than waiting and doing follow-up scans.

[Debbie2003]

If there is a single nodule, then ask about Radio frequency ablation.

She may not be handle surgery, but RFA is a less invasive procedure.

I'll ask about that treatment. Maybe that would be an option.

And let me add my voice to the chorus of making sure your Mom is checked frequently. As long as that is happening waiting might be the best alternative right now, as hard as that can be.

Yes, waiting is the hardest part. I feel a sense of urgency about it, but her docs don't seem to feel that way. They did at first with the larger nodule, but once that disappeared, they seem to be uninterested in the other one. I just hope that they aren't "assuming" that it's nothing because of all her other lung problems. I know other people who have emphasema, pulmonary fibrosis, AND cancer all in one lung. It does happen.

[Debbie2003]

What do you all think would be an appropriate scan schedule? They haven't said anything specific, but on her CT Scan report the radiologist suggested doing scans at 3 month, 6 month, 12 month, 24 month intervals. Does that sound right? Is that frequent enough?

[Debbie2003]

so when I get scans, I light up and have nodules all over the place, the next time they are gone and in some new places---luckily my surgeon knew this so he did not operate again or panic me everytime he saw the scans---

Do you get PET scans to monitor things?

Just to clarify, when all of you say to get frequent "scans" - are you meaning CT Scans or PET Scans?

She did have one PET, but my understanding is that they are just going to do follow-up CT Scans. Does that sound right? Would she need anymore PETS?

[Eileen]

actually Debbie---I had a Cat that showed something, then they gave me a Pet---and that showed something entirely different than the cat so we waited and then had it done again----again conflicting results-on the very same day!!!--what originally lit up on the pet was now gone and vice versa for the cat ---very very confusing for both me and the Dr.

finally my surgeon kind of gave up on the pet scans and just has me get cat scans now----

I would think she should be scanned every three months for signs of growth of the existing nodule ---that is how long it was between my scans when I was lighting up the scans----now the surgeon is saying 1 year but I will still go every 6 months for awhile ---

hopefully your Mom's nodule will be gone by the next scan---

regards

-

[Tiny]

My onc said scans every 3 months for the first 3 years, then every 6 months up until year 5, then once a year. She orders a PET if anything suspicious or unusual shows up with a CT in an attempt to corroborate the results...not always a cut-and-dried scenario as confirmed by Eileen's posts above.

[Debi]

Just to add my 2 cents...I agree with everyone above.

When my nodule first showed up, it was 11 mm and in a place where it would be impossible to get a biopsy. It was also in my right upper lobe, deep in the lung. I went for a Pet Scan and nothing lit up...but I was told that due to the size of the nodule, that it didn't necessarily mean that it wasn't cancer, it might be too small to show.

Since I had no xrays to compare, my doctor suggested that I wait 2 to 3 months and get a CT. He didn't want to unnecessarily have me go to surgery if it was scar tissue, or something else. As it turns out, when I went 10 weeks later, the size of the nodule had increased.

On a side note, and very wierd, when I brought my Pet to the Pulmonary Specialist months later after the 2nd CT, I told him about how the doctor had said that nothing "lit". He told me that was incorrect, that the scan showed an elevation around the nodule. So basically, I could have had my surgery 5 months earlier (since it took that long to get it done).

AS long as your mom keeps going for the scans, and I believe they will be CT scans, not Pet scans, I think it will be okay. I'm sure the doctors will take action if it continues to grow and it does sound like the best course under the circumstances. Wishing you the best....