Concerned but not completely freaking out

Mizreeder

I was diagnosed last March and prior to chemo my onc. ordered a CT scan. He told me there was a "spot" on my lung but it was too small to biopsy for confirmation and could just be scar tissue. I had a PET CT after chemo was finished which showed NED (woohoo). My question is... If that was cancer and chemo wiped it out are my chances of recurrence higher? I'm on Herceptin until July and onc. said he would be fine with me remaining on it indefinitely. Should I be concerned? Has any one else had this happen?

thefuzzylemon

They found a spot on my kidney too ... haven't thought much about it as I was NED as well.  All I can say it everything freaks me out a little ... but I take every concern or thought I have to which ever of my healthcare team can answer it best.

Funny story, my last visit with my medical oncologist I asked him to look at two suspicious spots on my face (keep in mind, I was truly worried about these as they did not look like anything normal).  He took a look and said I have acne.  I totally didn't believe him...but a month later, he was right!!!  I WAS SO RELIEVED!!!! LOL

I'm pretty sure I'll do something just like that in the very near future too.  Hang in there and ask ask ask ask ask ask ask!

jennyboog

I have....I have a spot on my lung and liver, both are too small to biopsy and neither show up on PET.  I was told they are benign nodules, they are always in the back of my mind and I hope they never turn into anything.  I think most of us all have nodules that the normal person never even know about but since we're scaned constantly ours are found and flags go off.

MaxineO

Me too. Spots showed up on my spine and liver on a CT scan. They didn't change size after chemo, though, so doc told me it's nothing to worry about.  The doc told me that everybody has strange spots in their bodies--growths, lumps, cysts--they just don't get scanned as much as we do, so they never know.

That said, I continue to worry once in a while about those.  Don't be afraid to ask about it.  I suspect if you remind them, they'll look for those areas next time you're scanned, just for peace of mind.

PlantLover

I have spots on my lungs that have shown up since radiation & the reports state they are consistent with radiation damage.  Nothing was identified before treatment & I know that's completely different than what you are asking.  Personally though, I wouldn't think that your recurrences would be any higher regardless of what the spot was.

The main reason I'm responding to you is that I that I'm VERY surprised that your oncologist is telling you he would keep you on Herceptin indefinitely.  I remember asking my doc if he thought it would be good for me to stay on it longer than a year and he said absolutely NOT!  I believe there have been some trials regarding initial treatments lasting longer than 1 year but I have not heard of any that would suggest someone that was Stage III staying on it indefinitely.

Any other HER2 sisters have any info about this?  I would think it would really be compromising to your heart for long term use.  I think I've also heard that they want to reserve it to use again, if needed.

kathleen1966

I also got the same response with the staying on Herceptin.  This is the part that I think you should get confirmation on.  If you had a spot, and it then disappeared after chemo, is your oncologist concerned that this may have been cancer to suggest that you stay on Herceptin indefinitely?  I would want clarification as an oncologist who would advice continuing the Herceptin would signal concern about this spot to me.

kim40

After my initial CT, my onc told me that I had a couple of spots on my lung and we were going to watch it.   I went through chemo and rads and had another CT after that, and they were still there.  I had one again last year, and they haven't changed.  My onc told me not to worry about it as they haven't changed.  He told me that if he took the most healthiest person out there and gave them a CT they may have something on their lungs too.  Some people have lesions and some don't.  I, just as luck would have it do.  Because nothing has changed, I have put it behind me.  

I am also very surprised that your onc said to keep you on Herceptin indefinelty.  If the spot is gone, and there is no confirmation that it was cancer, then why would he suggest that.  I agree with Plantlover, wouldn't they want to put it on reserve "just in case?"

AnacortesGirl

It great that you're dancing with NED!  Most popular guy on these forums!

In my initial scans I also had a leison on my lung and it was mentioned that they might need to biopsy it at some point.  But in all the subsequent scans (CTs, PETs, etc) they don't mention it.  I'm going with the thought that either it still there and unchanging or it healed up.  Who knows? My immune system would have been busy taking on a battle with the cancer  in my breast and lymph nodes.  So maybe it was a spot of some virus or bacteria that needed some TLC from my immune system.

Mizreeder

I'm glad that you all have the same concerns as me.  As far as the herceptin goes- I actually asked him about 6 month vs 1 year studies because I'm so tired of going in every 3 weeks.  That's when I got concerned.  He said based on being HER 2+, the extent of lymph node involvement, having 2 tumors vs. 1, and my age he doesn't see a problem with me being on Herceptin indefinitley because the side effects are so minimal. 

PlantLover

Hmmm.  Seriously, I think I'd get a second opinion on the recommendation to stay on Herceptin long term.