Stage III Base of Tongue Survivor - nearly 3 years out with NED - Now Lung Spots - 1266370

Mon, 10/06/2014 - 20:53
tim6003
Posts:

I am nearly 3 years out from my last treatment for base of tongue cancer HPV+ / Stage III w/ mets to one lymph node on left side of my neck. No surgery, I had radiation for 12 weeks and Erbitux for treatment. All scans since my last treatment in Jan 2012 have come back NED -

Just today I had results from a CT / CTw/contrast from eyes to thighs. Colorectal Dr. (he ordered the CT) said all looks good and though he feels it is nothing, I do show two small 2mm spots in my lower right lobe. He wants to do a follow up scan in 6 months.

I just recently relocated to Alaska so I have left my previous team of doctors behind and am not established with a team here yet. I was seeing this doctor due to bowel issues, pain in my stomach, upper abdomen and due to my history he ordered the scan. While I think that is very good and proactive of him, I think due to my history the next scan should not be 6 months, but maybe 3 or 4 at the most. Or, should it be sooner?

So my question(s) is this: Should I push for more testing of a different kind and / or should I press for a scan sooner? If he felt it was an infection, should I not be on an antibiotic.

NOTE: He did tell me he wanted to see my previous scans of the lungs to see if these spots were there...I would think he and or the radiologist who read the results would have already asked for those??? They knew my history going in and I provided all that info ahead of time. :)

Thank you in advance for responses

Tim / Alaska

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Dr West
Posts:

2 mm nodules are VERY small and non-specific. It's always nerve-wracking to hear of potentially new nodules, but there isn't much to be done except see if they change over time. It's not very likely that you could biopsy nodules that are that tiny, nor would they appear on a PET scan. The challenging reality is that if these are metastatic lesions, there's no advantage to determinining that in 4 months vs. 6 months. It's reasonable to do the scan earlier, primarily just to know, but there isn't a great advantage to finding metastatic disease a few months earlier vs. later. As for the question of whether to pursue antiobiotics, that makes sense if the findings look like an infection, but not otherwise.

Good luck.

-Dr. West

tim6003
Posts:

Thank you Doctor West ...

I apologize if I show my lack of knowledge next ...but IF by some reason they were determined cancerous on my next scan ....I hear women all the time who decide to remove both breasts when they have a cancer dx in just one and even thought it was caught early ...could I use the same logic to remove 2 nodes in my right lower lobe / lung and have that lower lobe removed?

Just curious. If not, then I guess I would be stuck with trials :)

Thank you all for any responses.

Tim / Alaska

catdander
Posts:

Hi Tim,

Never worry about your questions not having enough knowledge behind it. You've asked a fair questions but the answer is no. removing a lobe from your lung can have devastating effects whether from the surgery itself, short or long lasting pain post surgery (post thoracotomy syndrome) and the possibility of problems down the line from not having the lung tissue itself (it's very possible the lobe will be very missed later on). So as painful as watching a waiting is surgery can be much worse.

I hope this is a small infection or some node that will just sit about doing nothing.

All best,
Janine

Dr West
Posts:

The difference is that if it's shown to be cancer, the cancer started somewhere else (base on tongue) and traveled through the bloodstream to land and grow in the lung. This is not the same thing as curing a cancer that started in the same organ that is being removed. You can learn more about these issues here:

http://cancergrace.org/lung/2014/03/16/invisible-disease/

http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

I hope that helps.

-Dr. West

tim6003
Posts:

Thank you Dr. West and Janine for your replies.

As mentioned, the scan was ordered by a new doctor (I relocated from Idaho to Alaska) who is not familiar with my previous scans or history (but for what I put on the new patient sheets). And too the radiologist who read the CT scan / w/ without contrast is not familiar either.

So the Dr. did call and tell me he wanted to look at previous scans first, but no matter what, we would rescan in 6 months, I will still push for 4 mounts :) Today I followed up on the release of info to allow those scans to get to my new doctor --- and while doing so I explained to my previous oncologists nurse why I was calling. She graciously responded to my request for info on the phone then and now from my last CT scan of the chest back in November 2013. She did state to me she saw where I had small spots (2 in total) in the lower right lobe as well as some in the middle lobe (they are no longer there) and it was determined at that time of that scan back in Nov 2013 it was due to scarring or infection. So, if they are indeed the same spots and she is correct (I will still wait for my current doctor / radiologist to determine that) then it appears I may be in the clear. Well, at least it appears they may not have changed since 2013 and are stable. :) Either way, it is with "cautious" relief I accept for now and will wait for final word from the pros.

I must say, and many I am sure can relate....the last 24 hours have been quite long and a bit restless. Thought I pride myself on trying to live the rule "it is what it is" ...that's not always easy to do with five young kids (ages 4-15) I need to get through school at minimum. :)

Thank you all again for your feedback. I will post the final when I get it and my prayer of course it is good news on the final look over as well as the new people I have met on this forum are and do well.

Tim / Alaska

tim6003
Posts:

Dr. West,

I found the slideshare link regarding lung cancer very informative. It is my hope that my mets to my one lymph node from my base of tongue primary, as well as I hear the HPV has a better outcome, will allow me to get to the proverbial 5 year (and cured mark). We will never know if my lymph node remained encapsulated or not, but the doctor thinks the size of it 2.5X3cm indicates it remained encapsulated. I personally think it was rather large to remain encapsulated. My Erbitux tx wreaked havoc on me. The oncologist said I was certainly one of the top 5 worst cases he has seen with regards to the rash and side affects. But he added "that is a good thing because it is usually an indication the treatment is doing what we want it to do".

I'm not one for "blowing smoke" and I liked my ENT for that reason. He gave my odds at 5 years to be 50%. I kept pushing for better odds or some ray of light (this was at right at the beginning of my dx) but he kept pushing back and said he will not blow smoke up my tale. He also said my recurrence rate the first 2 - 3 years was 35-40 % He was just a ray of sunshine I tell ya. HA! But I appreciated his candor so I could plan for the worst but pray for the best with regards to my wife and kids.

Thank you for your time and energy you put into this forum.

Tim / Alaska

catdander
Posts:

Tim, I think this has ended up being an unsolicited pep talk on hope.

I can't imagine how it feels to watch and wait. My husband's found himself in a similar position, we're holding our breath, hoping we might grow a bit older together after fitting into the practically nil 5 year survival rate.
As much as I <span style="text-decoration:line-through;">love </span>need to know that type of data for decision making in my everyday life I surprisingly found myself unaffected by odds of his survival, I noticed, so I decided the smallest glimmer of hope felt just like well, hope, it feels unlimited. Craig, from Pittsburgh has nsclc and he described hope in his talk at the Patient Forum on TKIs in Boston? (I watched on a live web stream) BTW, I became a big fan of Craig's that day. I don't recall how he put it or if he even made that same connection but I'm pretty sure he was talking about the same thing.

Thanks for letting me ramble. I'm just so damned lucky for D to have beaten such odds and be on an upswing for the last 2 years and I hope you get yours back. Waiting is the hardest part.

Keep us posted and never hesitate to ask.
All best and hoping for the best,
Janine