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PET results

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

Haven't "officially" gotten the discussion with my oncologist yet,  but I did finagle a copy of the PET report from last Friday.  The good news is that the spot on my thyroid did not show up at all. YAY! Also, the spot on the liver did NOT glow!!!  Woot!

what did show up is that apparently I have bright, glowing nodules in both upper lobes of my lungs, they are uncertain if it is primary lung carcinoma or RCC mets.  I also have a glowy spot on the gallbladder, a minor glow in my left kidney, and a bright glowy spot on my right femur, which they said might possibly be the result of a previous break there, which would be good news if I had ever had a broken leg, otherwise, it appears to be evidence of metastatic disease .  :(. 

 

So, they are supposed to call me in the morning and discuss the results with me.  So we will go from there.

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

I bet I've checked this board a dozen times today to see if you had posted an update.  Since I am new to all this, I don't know what it means when things "glow" but it doesn't sonud like it's a good thing.  Are the glowing nodules in the lungs definately malignant, just a matter of determining whether primary or mets?   And the femur, kidney and gallbladder are all glowing? 

Oh Tillie, how I have prayed for better results for you!!  I think the fact that the liver spot did not light up is something worth celebrating!  I hope you can keep your peace of mind about you as you wait to talk to someone about what all this means.  Till then, keep your chin up and try to stay focused on the good news!  In the meantime, I will continue to lift you in prayer and keep my fingers crossed.

hugs to you,

SIndy

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

Sindy, they give you a glucose based radioactive tracer, and cancer cells collect the glucose and the radioactive tracer causes them to show up as bright spots on the PET scan.  I was surprised the thyroid didn't show up, and thrilled that the liver spot didn't show up and stunned about the femur and the gallbladder.  I had hints about the lung nodules and about the spot on the kidney, but it's different when you see it on a radiologists' report.  Guess I will find out what they have planned for me sometime this week.  I'm hoping that there is something they can do besides surgery....HATE surgery....I don't know how to do this....I only know how to get something cut out and it's all gone.  I don't know how to do "mets"....how do I do mets?   Sorry, I'm a little gobsmacked right now.

I'll be okay.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Those are a fair number of spots.  My Thorasic Surgeon (at NIH) might attempt to take out both nodules with wedge resections, but maybe not with the other glowing spots.  One of the trials he is working on is more aggressive surgeries. 

Also, the lung wedge resection is nothing compared with the nephrectomy.

angec's picture
angec
Posts: 626
Joined: Mar 2012

Tillie, i take it that you are not on any meds yet? They will put you on meds to shrink the mets. Votrient is a good choice if you don't have major liver issues, but there are quite a few drugs to choose from. Don't think to far ahead on what might be going on.  It might not be as bad as you think.  Please let us know what the doc says.  Good that you have some areas that didn't show up like the liver and thyroid.  If you do have anything in the lungs i would bet it is not a primary but a met so don't worry about having to deal with two different cancers, the meds should take care of it all!  All my best!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Dear Tillie.. please take a deep breath..  and then go ah...  Smile  Easy right..?  OK, you did not mention any size of those bright spots.. still may be very tiny and not yet worth treating or even think about treating..  Let us know what the Dr thinks of it all...  Hope it is a false alarm...

Ron

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

You get them from the CT scan.  PET does not have the resolution.  The real value is when you merge the two imaging technologys.  You can see what and how big.  Still can't say why. (is it an infection, scaring, or bad).

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Tillie, if the need to deal with mets is confirmed, you will be OK!  You will learn everything you can, and take all the necessary steps to fight this and come out on the other side, a survivor!  It sounds like you're getting excellent care and these things are likely caught early enough that they can be more easily treated.  I read your bio and I can tell you are a strong, intelligent woman of faith.  You WILL be OK, Tillie. 

I think anybody would be gobsmacked by this kind of news.  I cannot tell you what an inspiration you have been and, continue to be, to me and so many others on here, whom you've helped with your kind words of advice and wisdom.  So, lean on us, Tillie.  There's an awful lot of people on here that have personal knowledge of what you are facing and will chime in with their thoughts, whereas, I can only offer emotional support, along with my cell #, email, work #, any number you want if you need/want a friendly ear to listen or (virtual) shoulder to cry on.

hang in there, girl, You CAN do this!!

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

Thank you all.  Just got another call this morning from the oncologist, MRI scheduled for Tuesday at 11am, for the femur and pelvis. They are really concerned about this because it is a weight bearing bone/joint and no one wants to risk a break there.  They called earlier and went over the plan of attack on this.  Apparently my oncologist, the radiologist, and onc. assistant had a late into the night discussion about priorities.  First the hip/femur area, which apparently was really a hot spot, assess what we are looking at, then take care of it.  The radiologist said unless I had previously broken my leg there (which I haven't) it is a met.  Then after that is corralled and under control, whatever it takes, they will go after the lungs.  The nodules in each lung are fairly small.  In fact, the largest one, in the left upper lobe, is only 1.6 cm, but they are 99.9% sure that it is either a primary lung carcinoma (please God! NO!) or metastatic disease. The largest one in the right lung is like 1.3 cm.  SSDL...   They are all right on top of this and my husband is amazingly supportive.  Yes, I will get through this. No one has mentioned any meds yet, right now they are mainly trying to zero in on what is there and how to fix it.  I figure if they put me on anything, I'll get meds that will turn my hair greenish purple, make me grow huge ears, gnarly nose hair, and make me gain 130 pounds of 'Roid muscles and belly fat! LOL. Probably shrink my boobs, too, and that's all I have that still looks fairly good! :)

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

It sounds like you are getting top notch care, in a timely manner.  I imagine once things get rolling, with the MRI, life will get fast and furious for a while.  Your emotions are probably all over the place, I know mine would be!  That's to be expected.  I just hope you'll try hard to always stay positive and keep that vibrant spirit.  Don't let your imagination play games with you, you've got to keep your witts about you!  I know you didn't want this fight but, now that you have it, attack it! 

You said the nodules in your lungs will be addressed after your femur, does that mean it'll be a while before you at least find out if you're dealing with mets vs primary?  I understand the process of prioritizing but I would think the doctors would want to know sooner than later.  And, this may sound stupid, but, do the doctors know for sure the bone mets are really mets vs being a primary, unrelated to RCC?

I am happy that you are blessed with a good man, for, they are priceless!!  If he's like my hubby, he'll still think you're beautiful when you're rocking a new greenish purple doo, with huge ears, gnarly nose hair and itty bitty boobs. 

hugs to you, my friend

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

Heck, I don't know those answers, Sindy...ask me some easy ones! :)  I don't think they will either, until all the tests are complete.  Right now, one thing at a time is about my limit, so, I'm good with waiting til they find out what's going on with the femur hot spot, and then letting them hit the lungs with everything they've got....while I can't run away from them! Haha!  I'm going to Jamaica for my daughter's wedding on New Years Eve, if it harelips every alligator in Florida AND Louisiana! It'll all work out.  And yes! I've got a superb man who loves me no matter what. 

Jojo61's picture
Jojo61
Posts: 407
Joined: Oct 2013

I know you have your appointment tomorrow. I hope it goes great.

You made me chuckle with your description of what the meds have in store for your looks. LOL. A sense of humor can get you through this stuff that isn't so funny. Keep your chin up. Jamaica is calling your name!

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

I've been practicing saying "hey, dere, Mon!"  That's the only Jamaican I speak right now. HaHa!

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