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New PET/CT results–one unknown

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Well the good news is that did not find any definite cancer. This is the baseline PET/CT after my liver surgery this past November.

The unknown is the following:

Abdomen/Pelvis Impression: Interval right hepatectomy with an new 1 cm focus of increased metabolic activity within the medial segment left hepatic lobe adjacent to the falciform ligament in a suscapular location with an SUV of 4.6 compared to background liver activity of 3.8. This area is midly heterogenous on CT. Metastatic disease cannot be excluded. Further evaluation could be performed with MRI of followed with repeat PET/CT.

My medical oncologist is not that worked up about it, especially since he thinks it's in the area that the liver surgeon removed a lipoma during surgery (he thinks it could be scar tissue). So the liver surgeon and he and the rest of the tumor board will look at on Tuesday. My medical oncologist will call later that day. At the very least I will be having a repeat PET/CT in 3 months instead of just the CT. My CEA is 1.2, down from 1.6 a month ago. My other blood work is unremarkable (liver enzymes within normal ranges.)

So those are the facts. Needless to say, I've been up and down on the roller coaster of emotions. I would totally have preferred a perfectly clean scan, but it ain't bad. My medical oncologist was wonderful in how he handled it all. He straight off said that he didn't know whether to be worried or not about what the scan showed, then proceeded with a physical exam, kept on talking about lots of other things, then some more about decisions to be made, and by the time he finished the exam I was calmed down enough to hear him and go look at the scan. The power of a caring touch is amazing. He also said "well, you feel normal, and you look great". Bless him.

So by the time hubby and I drove the 5 hrs back home from Salt Lake City, I was exhausted. However, slept through the night and am doing OK at work today. I'm so appreciative of my caring and supportive fellow colleagues and supervisor.

Thanks also to you all here. I've learned a lot by reading the posts, and so I knew that dealing with stage 4 cancer is a process even if you are NED (which technically I still am until proven otherwise.)

Oh and by the way for any who would like to know, A PET scan takes 3 hrs with 1.5 hrs in a room sitting quietly, alone though being monitored :-), while the radioactive glucose makes its way around our body. The scan itself takes 45 minutes. I don't know why I had forgotten all that other than to blame it on the fog right after diagnosis when I had the last one done. I also am reminded that you've got to ask exactly what's going to happen in order to avoid these surprises, especially when the stress meter is already pegged out.

Also, if you wear a jog bra(for the ladies)and T-shirt type top you can keep iton during the scan. No skimpy little hospital gown. I did have on hospital pants but no biggie. Oh, and socks keep your feet warm in that cold room.

Leslie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Leslie

Glad you are feeling better...if the onc feels good, then I guess we have to go with that assessment. The uptake of 4.6 got my attention but as I learned with my onc, some things that may indicate a problem can be explained away - they are smarter than we are, but it never hurts to ask them.

You've got 3 months now before the scans again...so at least you can put it out of your mind some and enjoy your life. Glad to see that you are working...that's good.

So, you're up in Utah, huh? I've heard that's very pretty country up that way.

Thanks for the update...thinkin' about you.

-Craig

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I'm up in Central Wyoming, NE of Salt lake. It is pretty country, and I'm grateful to be able to live here.

all the best, Leslie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Lesie,

Off the subject, but I have an aunt in Dubois, WY- is that anywhere near where you are? I just visited there last summer for the first time and it is really beautiful!

Glad you're feeling well- do take care!!!!

Lisa

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Hi Lisa

Yep you aunt is very close. Dubois is one of the closer towns to Lander in Fremont county-only 75 miles away to the NW! I've now lived in WY more than 1/2 my life (though have lived as an ex-pat in Kenya and Mexico for years too) but grew up in Boston. I'm used to the distances now but Fremont county WY is larger than the state of CT. :-)

I'm taking a staycation these next two weeks to enjoy the waning summer. The national forests(in Wind Rivers) is only 8 miles away and hope to take the ponies on some trail rides.

all the best, Leslie

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

It's always a roller coaster ride but to hear that things overall seem to be good it great news. The thing you don't want to hear is significant growth. Stable and not sure are good too.
I'm glad you calmed down and are back to the normal work business.
-phil

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

It's a shame you couldn't be told absolutely, positively, forever and ever no more cancer, but it does sound pretty good. I'm not the one who had the scan, so easy for me to say, but it does sound like good results.

*hugs*
Gail

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

it's a darn shame ain't it?

smiles, Leslie

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Leslie
I too was stage 4, going on 5 years since dx and treatment. They are also seeing something on my liver, had the CT and Pet too, then MRI, I guess it is showing up best on the MRI, and a repeat MRI done after 3 months shows no growth or activity, enzymes good like you. Just something to keep an eye on. Just going on with my life, once in a while you can't help but think about it, but keep on keeping on! I have a couple of those silky jogging type outfits, and don't bother with a bra that day, they have no metal on them, so don't have to undress at all. Your news sounds pretty good and hoping everything stays stable for you and me too!
Best Wishes
Pam

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

It is interesting how scans are handled differently in
various medical locales.....never had a MRI but have
had a PET/CT scan and a bi-phasic CT scan following
that.....they kept me on a roller coaster for several
months after liver resection because of something they
saw at one of the margins and FINALLY decided after four sets
of scans, that it was the way the tissue was healing in
that area and gave it a long name.....CEA was always within
normal range....I appreciate how closely they are watching
me but sometimes the anxiety does get dragged out....I
wear pants with no zipper and a regular bra with metal
fasteners and they have never asked me to go into a hospital
gown; they usually give me a couple of heated blankets while
I am being tested....and socks do help! Your news is
positive and great I think; hang in there.

Barbara

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

By the way I love your photo; love Wyoming, several
years ago I took a wagon train trip on the South Pass
for a week with a group of women campers; it was wonderful;
one day I walked 20 miles, not sure I could do that again.
Of course we had all the modern camping equipment and
delicious food; not sure how those pioneers made out
with their meager stuff.

Barbara

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

for another tale in from the scan world, especially good for me to keep getting reminded that the ups and downs are normal (not that I have to like it :-).

The photo is one of my favorites with Sterling, my 20 yr old Thoroughbred who holds his own with the Quarterhorses here. We've been through a lot together over the years and the way he makes adjustments and waits on me as I scramble up and down on him now, just starting to ride him again, can bring tears to my eyes.

Leslie

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Thanks so much for your note-great to know about another person's experiences with scan results! Back at you for hoping everything stays stable for you and me too!

Leslie

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Hi Leslie,
I just read your post. I am a bit behind. I think your news sounds good. We will be going there on the 28th and I thank you for all of the positive things you have told me about the Huntsman. I did see Johns scan last Wednesday and man the liver looked bad. I will be waiting to see what the Chemo has done.
Keep us informed about what the tumor board has to say. Good thoughts are with you my friend. Love PaulaG.

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