3 month scan…Mayo
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As usual, Duke…you’re to the point and ….. you’re right. I’d tell you to make this Christmas like others, not be frantic about it….sit back and take some time to really enjoy it. Now….to follow my own advice.
Julie –
Somehow, you have to regain your confidence. You have fantastic insight to give others, you need to listen to yourself, too. Passing on the dinner is a great example, so you still have it – what would you say if I told you I was worried this would be my last Christmas? Now listen to your advice and follow it.Duke
Serene, thank you. I’m trying to do as much as possible to make this a “normal” Christmas. We cancelled out of a Christmas party tonight, when I found out this noon that the hostess (who was also making the main food) had been sick to her stomach all last night. I couldn’t believe that they hadn’t called everyone to cancel…or at least warn us. I do not want to spend my holidays being sick because of this….so we just didn’t go. Instead…we went out to dinner with other friends…and in the process, I made plans with one to put together a gingerbread house with her next week. (I used to bake and decorate cakes, etc for 29 years). It will be a fun time…just the two of us…getting the houses stuck together so her grandkids can decorate them. I’m having a little problem now and then trying to convince myself that everything is okay. I start thinking about all the what ifs….and that maybe I should be pushing harder to do everything and anything to cram all the Christmases into this one…just in case. But, I know the quality of the Christmas won’t be the same. I just need to take a deep breath….and let life happen. Happy Holidays and Merry Christmas to you as well.
Kris V.
Julie,
We’re about next to each other in similar boats…
My diagnosis was late Dec 2013 with surgery in Jan 2014. I’ve ended up having CT scans about every 3 to 4 months since for one reason or another. I’m due for another in Jan 2015 and would prefer an MRI if that’s sufficient. I’ve been “radiated” so much in the past year that I’ve refused my routine dental x-rays at my last to exams. ha…
I find my scannxiety comes back after about 3 months, but a little lexapro helps a lot.
Congrats on your latest results. May there be MANY more like them!
xoxo
-Matt
We were originally told scans every three months for the first two years….two years started at surgery date but we have shaken things up…..with Marks Ca19-9 being up in September we went in at 2 months. Since every thing was good in November we went back to three months. Out Onc decided that Mark’s cancer has been so easily monitored with the labs, we are just going to do labs and a chest x-ray in February. The option will be to do a CT scan if the labs are elevated or hinky in any way at all. He wants to do scan every 6 months going out from here and labs every 3 months. It will limit the radiation exposure.
I feel pretty comfortable with that as long as we keep an eye on it.KrisV
Well that does not surprise me when we do the same thing we are like Sisters! WAIT! That makes Duke your cousin too and Gavin your Nephew!!!
Lainy…Oh…don’t you know we’d have tried the same thing?…….I did discover those little bottled gems of water flavorings that are sugar free. That worked for a while, but I also have a food allergy to one of the ingredients in most of them….I suspect it is ascorbic acid…or something giving it the tart flavor. My throat gets sore….swollen inside apparently. Crystal Light does the same thing. Bummer!!! I think I will go for diet 7 up….and just be done with it. The flavor is kind of flat…but no caffeine…no sugar. I’ll get by.
Julie, just had a thought about water. I am not a big water drinker so I bought these little squeeze bottles of flavors. Sugar free and works like a charm.
I feel the same way about this Christmas…receiving a great scan is the best incentive to celebrate and give thanks. When we saw our surgeon on Monday, John gave him a card with a gift card in it, just to thank him for his outstanding work and support over the months. I came home from shopping this morning and John said that his surgeon called him to thank HIM for making his day. John thought at first there was bad news to be delivered, but Dr. Singh just wanted John to know how touched he was by John’s inscription. Wow is all I can say.
I just found out that both of our kids will make it home for Christmas (from Vegas and DC) and that all my 3 siblings will also be with us to celebrate. I too feel like celebrating and decorating the house to welcome our two precious grand kids and family members. Going out to buy our tree and some poinsettias right now.
Yes, let’s keep in touch.
Merriest of Christmases,
Melinda AMelinda A,
Thank you so much for the detailed description of your meeting with John’s surgeon. We are both on track for having the next scan at about the same time….toward the end of Feb. It was at that time that my oncologist finally suggested going to every four months for the rest of the year…(year 2) when I pressed him…and then every 6 months thereafter. So it looks like John and I are set up for the same schedule now.
Thanks also for asking about CT vs MRI. I’ll have to do more thinking about that. With a possible reaction to the CT contrast, …if it happens again, they may not want to do the CT…but do the MRI instead. They really don’t want to do a CT without contrast.
The right side of my liver has grown to compensate for the lost left lobe…..so John and I are in the same place there as well.
Thanks for the clue about hydration and kidney function blood levels. I’m going to try to really push the water a lot. I don’t think I was dehydrated….as I had been drinking quite a bit of water that morning….but in the meantime, it wouldn’t hurt to keep flushing my kidneys anyway the rest of the time.
Yes…peace of mind for the holidays means so much. I was living in dread that something would show up on the scan and ruin everyone’s Christmas…let alone my own. Now, we can move forward….I feel like decorating the outside of the house, which I rarely do….and I’m ready to put up the tree earlier than we’ve ever had it up before in almost 40 years of marriage.
I’m hoping to sing Silent Night and a whole lot of other songs while a friend rings the bell for the Salvation Army. But Silent Night is my favorite….and when I sing it….it’s amazing how many people step forward to put money in the bucket. We even had people stop their cars in the parking lot and run over to put in money. That must be a moving song for a lot of people…and it stirs up a lot of very good memories in them.
Thanks again…..and let’s keep in touch since John and I are on the same path right now.
Julie T.
Hi Julie. We met with John’s surgeon yesterday and he indicated that for the first year, he wants to do a CT scan every three months. The second year, her will extend it to every four months, and after that every 6 months. When I told him that our oncologist thought that scans could be done further apart and just rely on lab work, he said that John (and you) are among the 20% that had no indication from tumor markers or elevated levels on blood work prior to diagnosis, and that we needed to remind our oncologist about that should he want to just go by lab results.
We are lucky that Dr. Singh said that he likes to personally stay in touch with his surgical patients for one year following resections and chemo. Most surgeons turn their patients over to the oncologist who rely on the radiologists reports following a ct scan. He said that since he was “in there”, he knows first hand what shadows might be or where scar tissue is. We love Dr. Singh at City of Hope and trust his judgement immensely.
John’s liver has fully regrown and he has a clean bill of health until February 23 when the next scan is complete. With regards to a MRI vs CT Scan with contrast, Dr. Singh indicated that with this type of cancer, the ct scan with contrast gives a more complete view of microscopic changes, unlike other scans or images.
After drinking a ton of water since his last creatinine test, John’s levels were back within normal range and the thinking is that he just let himself get dehydrated prior to the scan on Nov. 24.
So, overall, good news for this visit and peace of mind for the holidays, where my entire family will gather from all parts of the country. First time in many years that we are going to be all together.
Continued best wishes to you…keep singing my favorite Christmas hymn at every opportunity. I love Silent Night as even during the depths of my mom’s Alzheimers, she recognized and tried to sing along with this one song at mass. Just beautiful.
God Bless…
Melinda A
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