Pet/CT scan

[Joan M]

I'm due at the end of the month for a PET/CT follow-up. The last one was 6 months ago. I've been NED since Oct. 2008.

About two months ago I had another brain MRI, which was okay.

I'm experiencing the usual nervousness, but twice that since this is the longest time I've gone between scans since my cancer advanced in January 2007. The scans (normally a CT of the chest, abdomen and pelvis), were 3 months apart, and 6 months seems like forever.

Joan

[Mary Jo]

Totally understandable but try to remember to take it one day at a time! TODAY you are NED! Rejoice in today! Will be praying for you friend!

[Jackie07]

Joan,

Ever since my recurrence was found after four years' misdiagnoses, I've lost confidence in the scans and my doctors.

I've been paying more attention to my own 'feelings'. For example, my lips always reflects my health. When they are dry and peeling, I know something is wrong. The challenge is to figure out which part of my body is wrong.

Even my lab work fooled the doctors. My chronic iron deficiency anemia turned out to have been caused by excessive blood loss during menses - and that was caused by disrupted sleep - which was caused by the life-long brain tumor pressuring on my head.

I asked my oncologist to give me a urine sample test when I had my 6 month check last month. It was almost five days before the oncology nurse called me and told me to pick up the antibiotics they just ordered for me. Usually we'd get the result back within a couple of hours. I guess the cranberry pills I had been taking must have 'masked' the lab reading and they had to either 'culture' it or send the sample away for further testing.

Not sure how this might help you. I do know that I have to take deep breaths when I'm inside of the 'tube'. It has to be an age thing because I was never 'clausterphobic' when I was younger.

[michka]

Joan I understand what you feel but I will be thinking of you hoping your next message will be NED! I had a PET/Scan 10 days ago and I am going to have a MRI of my sternum in 4 hours. I was always worried of the results but these exams were easy. Now I just can't stand going in the tubes. I even get claustrophobia now. I have to take something to calm me down before otherwise I may not be able to stand the stress. I wasn't like that at all before. This time is terrible because a spot lit up on the Pet. I am hanging on to the idea it is the same place on my rib near the sternum where the surgeon scrapped the cartilage and the bone to pass an artery when I had my breast reconstruction. That place always hurts when I press on it since surgery. I already had that checked after a Pet 7 months ago but this time, they seem much more concerned even speaking about a biopsy of the sternum.
In my tube I will think of you. You are my reference. You helped me so much. "Joan did it, so I can also" and I will be hoping for another NED for you.
Hugs, Michka

[Delaney]

Joan, and Michka, and anyone else going thru scans, I know how you are feeling and I hope NED is not too far off (for all of us!). I had brain/ct scans last week, I took half an ativan to get through it, the nurse said it would be like taking a stiff drink - she was right - it meant I got thru the day kinda sane. I got the results the same day for a change, they were good, brain clear, everything else decreasing, so I will remain on Gemzar/Herceptin/Tvverb and Zometa for another while.
Joan, it must be even harder when you have been NED for a while - but you got to NED - so you will probably still be NED- YES YOU WILL! Use ativan if you have to, visual imagry works well in the tube too. Let us know how it goes and very best wishes.

[krisvell]

Joan,
I can understand the nervousness. You've been NED since '08 and will continue to be.
Hugs and prayers,
Kris.......

[Pam P]

Joan - That darn anxiety over upcoming scans. I / we all can relate. Have faith that they will show NED. We all hold good thoughts for you on that result. Peace, Pam

[Sheila]

Joan....will be awaiting your posting about NED....must be scan time, mine is the 30th! Will be thin king of you!

[Ceesun]

Joan, Just had the same set of tests about 2 weeks ago. All will be well....and I bet NED, too, so hang in there friend. Ceesun

[tricia keegan]

Joan, sending good wishes for clear results for you:)

[schoolteacher]

Thinking of you, Joan.

Amelia

[Becky]

I am also thinking of you Joan!

[KDR]

Joan,
You are still NED...try to stay in the moment...right now...talk soon,
Love
Karen

[Joan M]

Thanks everyone for your good wishes. My scans were okay. I'm still NED after 33 months, or since October 2008 when the brain met was treated. My lung tumor recurrence was ablated with RFA in August 2008 after the initial lung met had been treated with a wedge resection in the spring of the year before.

I can now let out my breath ... Waiting 6 months rather than the usual 3 months between scans felt like forever. What a way to live, from scan to scan.

My onc told me to enjoy the summer. And I feel like a weight has been lifted off my chest. At least, for now.

Joan

[Emelie B]

Congratulations Joan!!!
I know how good that call can make you feel.
Enjoy

[StephN]

Dear Joan -

Now that you are on this extended scan schedule and have made it through the first one, it will get easier. Are you have bloodwork or markers done more often?

That is what I do - have the bloodwork every 3 months and the scan at 6 months. With clear/normal labs it is easier to get through the second 3 month time till the scan.

Yes, have a great summer!

[chrisy]

Yee haaaaaa

License to breathe, renewed!

[Laurel]

Whoopie! Very happy for you, Joanie-girl!!!!!

[Barbara H.]

Great news, Joan!! This is just the news we and you needed to hear! Enjoy the summer and try to reduce your thoughts of HER2 for the next few months.
Best,
Barbara H.

[Jean]

Joan,
I am a bit behind on the board and just read your post.
I am very happy to read your great news. Yes, enjoy the summer.

Blessings
jean

[Elizabethtx]

Joan
Enjoy those lazy days of summer knowing you are clear and free!

[caya]

Great news Joan!! Your onc. is right, enjoy your summer...

all the best
caya

[sassy]

Deep sigh and enjoy!

[pibikay]

Just found this thread.Great News

[Ellie F]

Just got back from a break. So pleased to hear your good news! My scans are due next week so I know first hand what it's been like waiting.
Enjoy your summer!

Ellie

[krisvell]

Joan:
WhoHoo!!! What wonderful news.

Kris...

[Becky]

Dear Joan

I am so happy your scans came back NED once again.

[Mary Jo]

Ahhhhh........so, so thankful that you continue to be NED! Regardless of where we are, God is good. Life's journey, although not always an easy one, is in His most capable Hands. As long as it is called today, let us love and serve each other.

Love to you special sister.

Mary Jo

[Sheila]

Joan


so happy to read your great news on the PET/CT...I know you were concerned....now, a sigh of relief and on with your life....put the "C" on the back burner where it belongs! Hope you are dancing with NED for a long long time!

[michka]

Bravo Joan! I was hoping to read NED again! I am very happy. Michka

[tricia keegan]

I'm a little behind too Joan but so happy to read your news:)

[Ceesun]

Joan, YES!!!! So pleased for you. Ceesun

[KDR]

Yay, Joan! I had tears in my eyes when you called! Am still away and left my phone charger at home, so my cell is officially dead and can't get access to any of my numbers. Will call when I get back, till then, I told you so!
Love
Karen

[Joan M]

Steph, I see my oncologist and have blood work and tumor markers every 9 weeks. But I should look into whether to change that schedule. My tumor markers (CEA and CA 27-29) have never been out of normal range. My next scans will be again in 6 months, unless I have suspicious symptoms. I'm scheduled for a brain MRI in mid September, which will be 4 months since the last. I had been having the MRI every 3 months, but the neuro-onc increased the time between scans by one month at my last visit. I continue to get Herceptin every 3 weeks, and hope that my left ventricle ejection fraction holds up.

Karen, I was so happy to talk to you! I felt like the test result was a cliff hanger and wanted to let you and Laura know the results. Laura had called me Wednesday morning but I didn't hear until early afternoon. Yes, let's talk when you return.

Joan