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Results of PET/CT scan

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

I had my PET/CT scan yesterday (Monday, 7/18) & had my onc appt to go over results today (Tuesday). Yesterday after the scan, I came home and popped the CD into my computer and what I saw depressed me- so many red blobs in every spot of my lungs & some brighter on my liver than I remembered seeing last scan in March. When I went and got the written report today, I was much relieved to find out that most of the metabolic uptake on the PET portion of the scan has actually decreased and nothing has spread outside of the rectum, liver, and lungs where I have known about tumors being since my diagnosis in Aug 2007. So, it was actually not bad news at all! Of course, I would have loved news of nothing was found, but I can live with the news. I did have two areas in the lungs that did increase in size of 2mm each with some increased uptake, but that was it. The other "innumerable" pulmonary/lung nodules (as they are referred to in my scan report) all slightly decreased in metabolic/SUV uptake and did not change in size. The same with the 4 liver tumors and the rectal tumor. I was really surprised to hear that my rectal tumor actually decreased in uptake, given all the problems it's been giving me.

Regarding the problems and pain the rectal tumor has been causing me, we discussed options at great length. Surgery is still out for me- it would be required to go off chemo for 10-12 weeks for surgery & we just don't want to risk tumors growing or spreading during that time (any time in the past when I've been off chemo even for a 2 week vacation, things grew- fortunately, my upcoming cruise is on an "off chemo" week). I've been evaluated for cyberknife on it before & was told that due to the rectal wall being very thin where my tumor is, there would be too great of a chance of it causing a hole/perforation in my rectum, which would result in emergency surgery and a colostomy. So I don't want to chance that. But, I told my onc something has to change- this is awful dealing with this. So, I am going to schedule a consultation at UCI in Irvine, CA with a Nanoknife consultant. Nanoknife uses electricity via a probe inserted into the tumor to ablate it, unlike cyberknife which uses radiation. My onc said he's not familiar enough w/ nanoknife to know or not if the same risk exists as with cyberknife. So I will have a consultation and find out if it could work for me or not. I will call tomorrow a.m. to set up the appt & have no idea how soon I can be seen there.

So far as my alternative treatments with the naturopathic doctors, my onc said he doesn't want me doing any more sauna sessions for now because he doesn't want me to lose anymore weight or become weakened stamina-wise. He did say, however, that I can stay on the supplements, as my bloodwork (liver enzymes, red blood count, platelets) all look great & perhaps it's my supplements that are helping with that. I personally think what helps most with the bloodwork is the chlorella and spirulina.
That's about all the info...

Take care,everyone!

Lisa

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lisa,
Good. Yes, that is good news that things are pretty much stable. I am also so happy to hear that nanoknife might be a possibility for you. I know something will work to take care of that tumor.
I continue to pray for you.
I hope you're enjoying some of your So Cal summer. :)

Aloha,
Kathleen

wolfen's picture
wolfen
Posts: 1326
Joined: Apr 2009

I sure wish that your results had been better and especially that you will become eligible for some type of surgery. I had not known the reason for the delay and I know you are really suffering. You are trying to do all the right things, as so many are, and yet you just don't seem to get a break. I hope you can see the Nanoknife person very soon and he is able to safely provide some relief. You are in my thoughts.

Luv,

Wolfen

luvmum
Posts: 457
Joined: Dec 2010

Hi Lisa,

I'm very very happy to know that your situation is improving and it's stable! I hope you will find a way to get rid of the rectal tumor soon!!!

Please take good care of yourself =)
Love Dora

rogina2336
Posts: 188
Joined: Apr 2011

From what I know (which isn't much) it sounds like your CT was good. I am very curious about the nano knife, please post the info as you receive it. Much appreciated, You are in my prayers Kim

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

GREAT! now just think in your summer holidays , cruising isn't ?.
Great Lisa!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hey there sounds good that there was a decrease in uptake, and everything seems to be staying stable. Sure hope the nano knife will be a good thing for you too!! Leena

relaxoutdoors08
Posts: 520
Joined: May 2011

Lisa,
You are an inspiration for we who are new to this board. I am just beginning my journey but I really appreciate all that you do to help us with our courage. You have courage to try the next step on your journey. Hope that you have good news on the next step.
Prayers,
NB

sasjourney
Posts: 395
Joined: Jul 2010

I am so happy to hear your news. I pray that Nanoknife is an option for you. Let me know when you have your consultation at UCI, I'd love to meet up with you when you are out this way.

Big hugs,
Sara

Fight for my love
Posts: 1530
Joined: Jun 2009

Dear Lisa,it's good to know your scan result is not bad at all.I was a little worried because I didn't see your update yesterday,but I am happy today.Hope your nanoknife appt goes well and wish you the best.

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

Lisa, you are an amazing woman. It's good to hear things are stable. I hope they can help you with the nanoknife. You are in my thoughts and prayers.
In the Light,
Aud

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Yes, you are one heck of a woman!

So optimistic! Stay that way Lisa. Oh, I know there are tears, but what matters is that you lift your head up at the end of the day!

God Bless you!

Rachel

taraHK
Posts: 1961
Joined: Aug 2003

Lisa -- this is such great news. Yes I know -- wouldn't it be wonderful to get the results and find no cancer anywhere!! But, I'm in the same boat as you -- stable is good! Shrinking is even better! New definitions of success. Now, I'm praying you get some relief for that darn rectal mass.

(Would you really have to be off chemo for 10-12 weeks? I'm not doubting your doctors and I'm sure you've checked this all out -- just seems long...I'm learning new things.....). Hope the Nanoknife option works out for you -- please keep us posted on that.

Sending lots and lots of love your way!

Tara

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