Me first! Mine is simple. I am doing great. ONC is watching closely because if a GIST tumor is to return it usually does it with in the first couple of years after surgery. PET Scan in June and that's it.Oh, Colonoscopy again in October.

TEDDY:  First I told the ONC about the visit to the Radiologist and how unhappy I was and he agreed may be time to change. I found a super Radman who has seen T twice before when he was wearing a "drainage bag' we liked him and he is at our more running downtown. The ONC thinks it is a great choice.

There are 2 tumors. One is 3CM and is at the upper right curve of his colon. A PET Scan only shows hot spots, it does not define so they are not sure if it is in the colon or on the outside.ONC is ordering a CT Scan with contrast which will define them.This tumor has grown from 1 CM to 3CM since found last Fall. Second tumor is near the right kidney and is the same size, 3CM but has not grown from the last PET Scan.

He is also ordering a Colonoscopy to make sure nothing is going on inside the colon. Lastly, T has been complaining of a pain in his right hip in the bone. He will be getting a bone scan to make sure bones are A OK.

I would think these 3 tests will be done in the next week or so, this ONC does NOT waste time. In the meantime any doctor who sees T cannot get over how good he looks and generally feels. His next visit is in May to go over the tests. Then I am hoping a game plan will be set up.

It is not the news we wanted but we did expect it. I always say we remain Realistically Optimistic.

So that's my story and I'm sticking to it! I guess my gut was right in telling me that something was going on, but its all small enough to be handled, we hope. Tomorrow, a Kentucky Derby party in Tucson!



Thanks for the update.  I had to check before bed to see if you had posted.
Glad you are doing great!

As a rather new bile duct cancer patient (less than a year) I'm confused about the two tumors Teddy has now.  Are these considered bile duct cancer even though they are around the colon and kidney?  This may be a dumb question to most on the site, but there's a lot I don't know about cancer.  I've heard of new cancers showing up in people.  Is this better or worse?

I'm sure glad you now have a super radiologist and hope the new plan comes quickly.


We are guessing it is CC at this point. CC can met almost anywhere as far as I know.
It is near where the last one appeared 2 years ago and that is where his Duodenum used to be which is also near the right kidney. Actually I believe it said the one is at the ampulla of vater. I have seen that a lot but not sure of the significance. The ONC did appear to be more concerned this time. I think it's near the head of the Pancreas. Again maybe some one can give me a lesson on anatomy.
Thank you so much Kathy for your concern. We have known this would happen, that it was a matter of time but again as always we remain in good spirits. Sometimes it just all feels so surreal. Our ONC definitely believes that being on this Board has got me to where I am. I am so glad I found it at the onset almost 5 years ago now.



Hi Lainy,

Glad to hear that you are doing okay and that your onc is paying very close attention to you. Sounds like he is on the ball here and hoping for more good news from your pet scan in June. And I am also happy that you have found a new Radman and that your onc thinks that is a good choice.

I'm sorry to hear about Teddy's tumours, as you say, not the news that we all wanted to hear. But I guess some good news at least to take from this is that the second tumour has not grown. This onc certainly does not seem to waste in any time in getting scans sorted out rapidly and I am keeping my fingers crossed for the best possible outcome from them. Then as you say, once you get the results in May then you can get a gameplan of attack sorted out.

I am happy to hear that you are both still in good spirits and I hope that you will both enjoy your Kentucky Derby party today, sounds like fun to me!

As always, you and Teddy are in my thoughts.


Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.


Lainy, so glad that you had good news about yourself.  It's good that you got some answers about Teddy and have found a new doctor.  A good doctor can make a lot of difference in your attitude and your outlook.  Sounds like you have a very good ONC who is on top of things.  Best wishes to you and Teddy.



Great news about yourself. Long may it continue!

Onto Teddy...glad you are changing Radmen. Trust is important and if you dont have it, it can really do a number on your head and add to your worries. Is Teddy going to do Cyberknife again? The size fits within the guidelines. I am so sorry you did not get the news you wanted. In some ways, it is good that you had the "feeling" so you could be somewhat prepared. Mental preparation is an important part of the battle...and you and Teddy have that part down!

I am confused about the hip. I had a niggle in my rib, but a doctor (not "my" doctor, but one of the bigwigs at the big university hospital) wasnt too concerned since I had a couple (think between 5 and 7) ct, PET, and normal xrays recently. Shouldnt these types of scans pick them up...the internet says they do. Is it that Teddy's scans dont usually go as far down as the hip so they arent getting images in their normal scans?

Now here I go, probably putting a big ole foot in my mouth AND being insentive and insulting to boot, but I mean this in the best possible way. Teddy isnt 40, perhaps the hip pain is just part of aging? (You should hear my mom and see her get out of chairs now because of her hip pain). I am going to think the most positive thoughts for him and hope the pain is nothing and he can keep getting out on that golf course!


Cancer is a word, not a sentence.

36 year old patient with buckets of hope



Happy to hear the good news you have gotten for yourself.  Sorry to hear that Teddy's was not quite as positive, however, it is good that you were ready to accept this news and are dealing with it.  You have a great attitude towards it all and that goes a long way and you are also taking charge and taking care of business  when needed.  I'll be waiting to hear of the results of this next group of test and hoping for the best.  Take care of yourself and ofcourse, Teddy too.

Love & Hugs,

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.


Thanks to this wonderful family! Its so good just knowing how much you all care!

Kris: I have already told T that the hip pain could be age. The ONC just wants to take a closer look. Just to be sure we can rule CC out of the hip. The PET the first week in April did not show anything in the hip. That started about 2 weeks ago, but I too think it may be age.  Doesn't stop the golf though! I also think his "newer" Ureter J Stent is bothering him a lot and we are calling the Urologist this week.....another Scan to see if it is fitting right!

On another are sounding great and we hope you are feeling oh, so much better!



Great to see your good news, Lainy.

And although Teddy's is not what you would want, I am sure your indomitable spirit and positivity will stand you in good stead.

Sending love and positive thoughts.

Helen x



wonderful news indeed for you!  Sorry to hear about Teddy's tumors, but sounds like the docs have great attitude and are being proactive.  Will keep you and Teddy in my thoughts.

Hugs to both,

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley


Dear Lainy & Teddy

I'm thinking of you both & sending BIG hugs your way!!

Julia xx

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson