Okay - had dr. Apptmnt today with RO and he freaked me out. Had 2 CTs - chest - head- asked results was told if anything had shown up - he'd remember - but sent resident off to double check - resident came back - said chest scan noted insignificant spots in my lungs- hello?

Now I had a scan in January that was clear ... So I asked - how does that compare to January's scan - they said no significant changes - ok show can my Jan scan be clear - this one have insignificant spots - and there be no significant change -?

So I guess my question is - I know anything is possible with this disease - but is it likely that my cancer has gone from a stage 2 tumor - to one lymph node involved - 39 others unaffected - to lung metastacies... ?

His words to me were - your going to obsess about this - I said yeah - I don't want to wait until it's too late if it is lung mets - he said if it is - then it's already too late... Huh.

Any opinions would be appreciated - thanks!

Okay so why the he'll am I going through radiation etc.

I re-read this a few times and I still don't know what to say..... can you get to one of your other docs and run it past them ? Like the ENT ?

Well i actually talked to an oncologist and a dr. Today . The oncologist said - the insignificant spots were probably there the first time round just not important - he also said highly unlikely that it's lung mets - he has a lot of experience with tongue cancers and how they behave. Another dr. Said the same thing... So I'm calmer now - I called my nurse practitioner - in a panic she said RO will sit down tomorrow and show me. He says it's nothing... The radiologist had to report it but they are not important. Heavy sigh....

Whew!
If only we could stop ourselves from reacting to potentially bad news we'd save ourselves a lot of worry! Too bad our brains don't operate that way!
Good to hear your news - what a relief! Enjoy your evening Cheryl!

I am glad that your oncologist has managed to clear things up for you Cheryl. And I hope the RO explains things a bit better to ease your concern. It is hard enough dealing with treatment let alone deal with scary what ifs. Keep us informed...in the meantime, healing vibes and prayers coming your way xx

Liza

Cheryl,
What your oncologist says sounds like good news to me--I'd take that news as being correct. If they are insignificant spots, someone has deemed them "insignificant". Nevertheless, I know what a report of spots on the lung would do to me, too. I do think a lot of folks have them, and they don't mean anything.

The thing is, doctors have to talk like nothing is certain, which of course it isn't, but darn it . . . I hate that too.
99.9% chance of insignificance . . .

Rest easy, friend.
Anne

Yes he freaked me out... big time. He said to me lots of people have lung spots particularly if they live in the city. Just not many of them know it because they don't have cts. He said they were insignificant - the radiologist said they were insignificant so I have to trust that they know what they are talking about. It's just that I am so untrusting of the tests right now. I truly believe my MRI was misread with regards to the lymph node.
The other oncologist said while oral cancer can metastasize to the lungs, it's unlikely it would only be found in only one node then move to the lungs also he said his experience with tongue cancer is that it doesn't normally move that way - It's just that it freaked me out since my first CT said clear. But he said it was likely it was on the first one too but because they are insignificant that radiologist didn't report it. My regular RO said the radiologist said it is insignificant, but because this is a cancer hospital protocol is to report everything. I don't know. I just have to trust that they know what they are talking about - 3 months they will do a ct again. but likely nothing. thanks everyone... I guess that was my weekly freakout... you all are great even though you have your own challenges. hugs and much healing to you...

Cheryl; thank God you got some reassurrance.... I'm like you and would have freaked out totally with them telling me that.... especially since in my case I WAS a smoker, so you always fear that they will find something in your lungs. But I am so glad you got to another doctor to set things straight. the first one really needs to brush up on his "bedside manner" -- they have to understand what you should and shouldn't say to a cancer patient. Hope your week goes much better from here on out. Hugs, Ingrid

Yes that was reassuring... But you know - I'm pisssed and scared - and frustrated. I asked yesterday about both scans. Part of the reason I am doing this treatment is because I wanted this treated aggressively. They both said I was in a gray area whether to offer the chemo and radiation. But because of the extra capular involvement of my node they were leaning towards yes.. I agreed. So yesterday when I asked about the scans - I was worried when he mentioned the nodules in my lungs but got over that after talking to an oncologist... Then today he tells me that a node in my neck on my right side contrasted on the CT 3mm - and because of this he's changing my plan - to include the right side even though it may well be nothing. - that's fine... I'm happy with that -however... What has me peeved is that yesterday I said to him - what about my scans - he said well if there was anything I would have noted it. Then he sent his resident who was the one who came back and mentioned the nodules. Then i said and what about the head and neck CT. He saidnit was just a baseline scan to compare in the future... Okay - so then today he tells me this - so what the heck???? So does that mean if I hadn't asked him about the scan and then had a bit of a melt down. - with my nurse practitioner after going home, that he likely would not have reviewed the scans and changed my plan? Seriously? This is scary....

Cheryl,

Are you going to a Cancer Center if you posted it I missed it?

You aren't far from Roswell Cancer Center in Buffalo, NY you might want to get another opinion there. Your doctor is beginning to scare me.

Just a thought, take care.
Connie

I'm praying for you Cheryl. Please try to remember not to worry too much (yeah right. I think you're awesome and don't forget that we are in this together.

Thanks - I'm in Toronto at one of the top 2 hospitals in Canada - it is a CC - princess Margaret. My SO is amazing - this is my RO that's causing me stress. He said if there is still something there the radiation will take care of it. I'm okay with that just upset in that I feel I can't truly trust my RO - I know he probably has scads of patients - but he should know who he's dealing with before he comes into the room and be on his game. I shouldn't have to push him up to that level... I am going to check him out and possibly see about being assigned another RO... Thanks so much for your reply! Feel well!!!

Thanks @mainewill same to you. It usually takes me a day to process it all. Then I move on. I'm ok today - but am considering a different RO. The problem with this dr. Is that he is a linear thinker. And not well prepared when he sees me . Ugh . Take care, day 7-8 for you?

Day 7. Woke up this morning to a VERY funny tasting bagel.

Oh... Ugh... I had unexciting porridge... An egg which I haven't had and a muffin. A little queasy from the chemo... Other than that no problems. They are springing me in an hour I go to rads and then home... Gonna walk my dog and hit the gym... Apparently being active helps the effectiveness of the radiation.
Getting that extra blast to my right neck as of today... I'm prepared for side effects so worse I suppose won't matter - since I am already expecting the worst. Are you doing the chemo too? That can also mess up your taste buds!

Have a good day despite the funky tasting food.

Healing vibes to you and truck on!

Cheryl: Actually getting a different doctor sounds like a good idea to me... I would pursue that...and remember to be the squeeky wheel. Hope you have a good day today without any side effects !

I too was told in my post-op appointment that I had nodes in my lungs. Thankfully, the DR and I were able to have a meaningful discussion. This indicated that traditionally, metastasis in the lungs was preceeded by near total involvement of the lymph system. Also, the scans pick up dense materials and excess pollution.

For me, I can point to my job as a major source of this pollution. I will be wearing a respirator when I deal with this from now on.

I believe that you will be ok. It seems that you are feisty and determined. Keep it up

I havn't started chemo yet because I can't get straight answers about the drugs they want to use. Taxol and Carboplatin. What kinds are they giving you?

cisplatin is my chemo of choice for now. what I gather carbo is an older version of cisplatin or the are very similar, and taxol is supposed to be used to treat many different kinds of cancer... did they explain the BL marker thing to you?

I am finally home... tired going to nap, walk mutt and go to the gym... gross weather here. UGh! SPRING HAS SPRUNG... but there is no reprieve from snow...

have a great day, and harrass people to decide about the chemo... sometimes you have to make noise.