Hoping I'm doing the right thing ..

lesleyag

A recent CT scan showed several very suspicious nodules in my left lung that are too small to biopsy. My last breast cancer was in the left breast and had significant lymph node involvement, 16/22 tested positive. My choice was to treat immediately or to wait and follow up with a CT scan in 2-3 months. I have elected to treat now with an 8 week course of Tykerb/Letrozole combo and then redo the CT scan. Has anyone else been in the same situation?

SSInUK

hi there. What is it that makes the nodules suspicious? Is it that they've suddenly appeared? I have lung nodules and wax told size is one of the key diagnostic features, too small to biopsy does not seem automatically suspicious? Harrowing for you either way, I know

lesleyag

The report just says very suspicious for metastatic disease. I also have some small nodules, not considered anything to worry about, in the right lung so I would think it probably has the characteristics of cancer. In the past occurrences in 2005 (right breast) and 2012 (left breast) the mammograms showed lumps deemed very suspicious but were large enough to biopsy so I feel pretty sure these are indeed cancerous. My first reaction was to treat, and still is, but there are always those niggling little doubts. I do trust my oncologist, she is a cancer survivor herself and she feels the decision is a wise one in view of my past history. The other thing, which makes no medical sense at all, is that I knew in my gut something was going to show up on the CT scan. I had the same feeling in 2012.

KBeee

I am an absolute believer in following your gut. Both times before diagnosis, I had recurring dreams of cancer. Both times it was beofre I even found my lump. Sometimes I think our body just knows.

SSInUK

I'm so so sorry for your trauma lesleyag. I think my instincts would match yours - to jump into treatment ASAP and knock it back before it got any bigger. Very best of luck x

ShetlandPony

Lesleyag, for what it's worth, I think I would make the same choice. Eight weeks of letrozole and tykerb sounds do-able. If the nodules disappear, it was probably mets but now you are NED again. If they stay the same, then maybe it isn't mets and it seems safer to wait and watch with CT scans. This is as long as you believe the radiologist is skilled and familiar with ILC. I don't know much about tykerb, but as far as the letrozole, I believe your onc has made a good choice for you. It is good for ILC and it is different from aromasin. Please update us!

lesleyag

Thanks for the input ladies it is much appreciated. The radiologist works almost exclusively with the Hematology/Oncology group that I use so I'm comfortable with her expertise. It just seems like I have been dealing with this forever but of course I had plenty of NED years there. Part of me thinks that as long as I don't have a positive biopsy I'm not at Stage IV! Time will tell, I start the drug combo on Saturday and I will keep you posted.

Rmanmom

I am going through something similar, an MRI I had last Jan of the cervical spine due to some carpel tennel symptoms uncovered a small lesion in my brain stem. Due to the location it could not be biopsied. I had a brain MRI and according to the radiologist and my original neurologist it was benign. It was treated with 5 rounds of low dose SRT and I was suppose to go on my merry way in 6 weeks. However, I have been plagued with severe peripheral neuropathy affecting my right side. A bunch more MRIs, scans and tumor marker/blood panels failed to turn anything up. I just completed 7 of 8 rounds of Avastin to treat what eeryone decided was radiation necrosis. Well I haven't gotten any better but at least not worse. My last brain MRI looked good but there could still be something there, it is hard to tell at this point. I moved on to a major NYC teaching hospital and they aren't sure either. So after Avastin #8 I am starting 2 months of Xeloda/Tykerb and no one is even sure whether I need it or it will work. 2 neuro ons say it must be a met, my MO still feels it is not. Scary to be taking these meds when no one knows for sure, I know how you feel.

lesleyag

Just a quick update - so I am at the halfway point and this coming Friday I will be at the full dose of Tykerb , almost zero side effects for which I'm grateful! CT scan is scheduled for Dec 1st and I see the oncologist on the 7th. Very mixed feelings on the outcome of the scan. hoping like heck that the nodules are gone. However, If they are, does that mean the treatment worked, or did they just go? If they are still there I 'm hoping they have grown large enough to biopsy, The not really knowing if I'm at Stage IV is getting to me. In the scheme of things I guess it doesn't change how I already live my life, grateful for every day and try to live it to the fullest extent possible.

KBeee

Keep usposted on the scan!