Having a scan? Waiting on results? The waiting room is open!

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exbrnxgrl
exbrnxgrl Member Posts: 12,424
edited October 2016 in Stage IV/Metastatic Breast Cancer ONLY

So many of us are regularly going through through the scan process. Anxiety before hand, anxiety waiting for results etc. The waiting room is now open! Come on in and let it all out as you either anticipate your upcoming scan or pace back and forth waiting for results

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2015

    Well, it is clear that I started this thread with selfish motives. I don't get nervous before scans, though I often develop mysterious aches and pains in the days leading up to a scan. I had a PET this morning and now is when major scanxiety kicks in. Results...I feel like the very balance of my life rests on them and I'm unable toproperly focus on anything until I know them. I ran to Starbucks immediately afterward and would have injected the coffee through my port if that had been possible. Then a bit of retail therapy and in a few minutes, I'll be doing a major shoe purge. My walk in closet has turned in to a trip in closet and, honestly, I have lots of shoes I never wear. I hope to hear from my mo within 24, per usual, but until then, I plan to keep busy, busy, busy.

    Caryn

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  • Kandy
    Kandy Member Posts: 1,461
    edited April 2015

    Keeping my fingers crossed that NED is still hanging around.

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  • sueopp
    sueopp Member Posts: 1,541
    edited April 2015

    Caryn, what an outstanding idea! I will be waiting with you until you get the good news, and I will be spilling my guts here in June when it is my turn. Man, what we have to do ... Fondly, SUE

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    Good thoughts coming your way. 

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  • Shutterbug73
    Shutterbug73 Member Posts: 791
    edited April 2015

    Hope you get great results Caryn. I had my Echo today and will have a CT next Saturday, so I'll be doing my time in the waiting room soon.

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  • pajim
    pajim Member Posts: 2,785
    edited April 2015

    I had mine last week with mixed results.  In the process I realized that this disease ain't for sissies.  The amount of stress is unbelievable!! 

    Hadn't noticed until I realized my neck hurt, my shoulders hurt, everything was tied into knots.  I need a massage and a bottle of wine.

    May all your scan results come back positive. . .

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2015

    I am on the waiting couch as well. Scan was on Friday and I won't get results until Thursday. I casually told the doctor I could wait for the results. WHAT.A.MISTAKE. I am pretty sure that there is progression, but won't know for sure until I have those results. So once again, living in suspended animation while trying to clean off my desk in preparation of the "Window of Opportunity" vacation.

    *susan*

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2015

    Caryn - Hoping that you get wonderful scan results! I completely understand doing retail therapy around the time of a scan. I need to have my computer locked and my credit cards taken away during that time, but alas, I teach online and have the credit card memorized ; so, I guess that wouldn't help, lol! My next tumor marker check is on 4/24 to determine whether we go ahead and scan now or later; can I go ahead and blame my recent bout of retail therapy on that? Please keep us posted; keeping fingers crossed for good results!

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  • nancyh
    nancyh Member Posts: 2,644
    edited April 2015

    Good luck, Caryn, hope that scan looks great, keep us posted.

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  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited April 2015

    I was in the waiting room last week. It is such an emotional time!! Sending prayers and good vibes for good results

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  • Tina2
    Tina2 Member Posts: 2,943
    edited April 2015

    Good idea, Caryn. Susan, what were you thinking?!? Everyone, good luck!

    Tina

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  • kebab
    kebab Member Posts: 873
    edited April 2015

    Ah Caryn, we should have met at Starbucks! I was there this morning for my CT scan! Bone scan is on Wednesday and then I find out next week if I can continue on the trial or not.

    I've been getting scans every 9 weeks since July. You'd think I would be tougher about it by now, but nope. I never am. Leading up to the scans and the scans themselves is easy-peasy. But from the moment I step out of that scanning machine to the moment I get the results, I'm a tense, nervous mess. There will be a whole lot of non-productive busy-ness going on at my house this week, while I try to find new and interesting ways to get my mind off what the reports might say.

    Fingers crossed for all of us.

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  • AmyJM
    AmyJM Member Posts: 665
    edited April 2015

    Good luck, Caryn! I hope you have good scan results - keep us posted.

    Susan - I'll be thinking of you too. I'm hoping you have no progression or if you do, that they start a tx plan that kicks it to the curb!

    Pajim - sorry to hear about the mixed results. Does that mean a new treatment for you, or was it mostly good news?

    I have a related question. I am having my first pet scan next month. Up until now, I've had bone/CT scans, because the insurance I had then wouldn't approve the PET scan. I was wondering how they are different and what the pet scan is like. I know the pet scans pick up the activity of the cancer, not just an image - am wondering more about the scan experience itself I guess.

    Thanks in advance for any comments/info on this!

    Amy

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2015

    kebab,

    I drove like a madwomanto the Starbucks diagonally across from the campus (Homestead at Lawrence Epwy.). I must have looked half crazed, that's how much I need my morning hoe! So now, the waiting games commences for both of us. Shoes are now well organized and 10 pairs are going. Younger dd came over and took two pairs. Will offer the others to older dd and then donate anything that's left. I even went with younger dd to Walmart, a place I detest, but it kept me occupied. I'm home alone now and mentally reviewing past time frames for learning results (usually 24 hours at most). I may have to take my dogs on a very long walk. Grrrrr, I hate this. Good luck to you as we wait together.

    Caryn

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited April 2015

    I'm hanging out with you. CT and bone today. Thought I was supposed to get a pet too but maybe chemo brain? Results on Thursday.

    I so need to clean and purge and sift and sort but I choose to hang out with GFs. The house looks like a bomb hit it. Easter, laundry, papers. Not even mentioning the kids rooms and toys.

    Picked a fight with DH and it was a biggie. Now tiptoeing around home. I absolutely hate this. My own personal hell.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2015

    Hanging out with you, too. No scans, CT done two weeks ago, but am a waiting room veteran. That was my second scan in two months just because I pulled something and they wanted to make sure it wasn't the P word. Still NED and sending NED energy to you and positive vibes to all others in the waiting room.

    Pajim, sorry to hear about the mixed news. I hope it will at least be a good mix, if there is such a thing. Like what is the best ratio of massage to red wine? I have been having lots of massages lately but it doesn't seem to be helping. Maybe not enough vino.

    Susan, hope you find out pronto what's happening. And let us know asap.

    nbnotes, I'm impressed you've memorized your number. I only know the last 4 digits so I can check it's current on Amazon. :)

    (((Hugs))) and good luck, Zills!

    AmyJM, a PET is easy peasy. Except you have to drink some awful sugary stuff that allows them to measure the activity of tumor cells. I usually get mine combined with a CT, but for the past two years I have been having only CT without the PET. Less radiation exposure for me I suppose.  

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2015

    Pam,

    The PET is easy. I have a "special" diet for dinner the night before, then have to eat that same "diet" at least three hours before the scan. When they bring you back, they take a bit of blood to check your sugar levels, and then assuming you "pass" then they bring in the radioactive stuff. At the BI, it used to arrive in a silver case, but now a large dosing machine arrives instead. I tell them how much I weighed that morning [but most patients actually are weighed] and they use the same needle configuration that drew the blood, to push this stuff into your body. Then you sit in a room, not moving, for an hour. I am allowed to read, listen to music, etc, but since I schedule these things at the crack of dawn, I sleep. They wake me about 10 minutes before I will go in so I can change into my all-cotton yoga pants, put on some warm socks, and use the restroom. [If you bring your own clothing with no metal, you can use that instead of those horrid johnnies.] My PET scan machine is on the 4th floor with lots of natural sunlight. I put my stuff in a corner, and get onto the bench. They center me up, but a wedge under my knees and a pillow under my head. You lie on your back. They have bands of heavy material that they put across my stomach to keep me still. I used to be tied in, but no longer. These bands are like those thunder-calmers for dogs actually. And then they start. The bench goes all the way to the other side of the tube, and then it starts, with the bench slowly working its way back toward the starting spot so the scan can get the right places of the body. It is not wildly loud like an MRI. There is no banana smoothie like the CT. To be honest, I generally sleep some more in the tube. These days, with the new machines, the test takes about 25 minutes.

    I haven't been given the drink in ages. Not sure why. At the BI, the drink is hidden in fruit juice when they give it.

    Hope that helps!

    *susan*

    p.s. the radioactive stuff seems to have absolutely no side effects. I just want a vegetable and a carb desperately afterwards.

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  • Macy187833
    Macy187833 Member Posts: 182
    edited April 2015

    AmyJM, a couple of weeks ago I had my first PET scan after having many CT's and one bone scan. The PET was easy--it was a PET/CT so both images were combined. You do have to drink a couple of nasty, sugary drinks before hand but I've had to drink similar ones for my CT too. Then, like a bone scan, they inject you with a radioactive solution to make you "light up" during the scan. My scan lasted about 30 minutes.

    I thought the PET was easier than the CT and the bone scan, but that's just my thoughts.

    The sugar will make any cancerous spots light up--but these spots can also be infections, injuries, etc. As an aside, I guess cancer uses sugar to help metabolize, so I guess that is why PET scans work when the sugar "shows up" with the radioactive element. It's kind of interesting. But, I had a family member tell me when I first was diagnosed that I better not ever have sugar again because "cancer loves sugar." Lol.

    Best of luck to everyone having scans! I well understand the anxiety!


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  • pajim
    pajim Member Posts: 2,785
    edited April 2015

    Hang in there Susan, Caryn, ZillsNotMe!

    In my case "mixed" means they found "ditzels".  Something where there was previously less than something, but not a lot of anything. Two of them, in the bone.  End decision of the phone conversation with my onc was one big shrug.  Do nothing. See if they grow.  Try not to stress about it. See what the rad onc thinks about possibly radiating them out of existence.  I see him FTF in June and we'll discuss further.

    As for the ratio of wine to massage. . .actually I go to a masseuse who does injuries.  It's fascinating.  I was having pain in my neck and the solution was to work on the a muscle in my groin.  I don't get the total relaxation that spa massages give you, but the pain goes away and I can move better. 

    I apply wine to the problem on a much more regular basis.  What I really need is a hot tub (says the woman who lives in an apartment so no room). 

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  • pearlady
    pearlady Member Posts: 882
    edited April 2015

    Caryn and Susan wishing you the best possible results with your scans.  Yes the waiting is the worst.  I always feel better when I get out of the machine. Not sure why.  I am one of the fortunate ones that my markers are so reliable that I don't scan as much as others.  After 13 years with Stage 1V, my markers have always told the story.

    Caryn I have been shopping like crazy for years.  I tell myself that I shouldn't deny myelf anything and that at least I should look good and be happy while I'm feeling good enough to enjoy things. 


     

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  • sandilee
    sandilee Member Posts: 1,843
    edited April 2015

    Wishing all of you "ladies in waiting" very positive news!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2015

    My wait is over and I'm thrilled to report that I'm still NED! My mo emailed the report to me after 11:00 pm, but I was sound asleep. I reached for my iPad the moment I woke up and there it was. Now I can enjoy the rest of my spring break.

    Susan, I admire your fortitude in being able to wait. Thinking, hoping and praying that everything turns out well.

    To everyone else in the waiting room, good thoughts and prayers. Now serving virtual soothing tea and light snacks:)

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited April 2015

    caryn thanks for starting this thread. I am. feeling selfish here as well. I am new to this stage IV business and have my first follow up PET scan next week. My therapist is encouraging me to plan some trip this summer to focus outside of cancer, but I just feel like I cant do it till after results. It really has a hold on me making me focus on every ache and pain. I would love to hear how others wait. I love retail therapy and I may try to declutter my storage room today. You all are an inspiration to me as I see you move through this with such grace, by caring for others. in the midst of your own battles. Thanks

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2015

    Caryn, YEA!!!!!!

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  • steelrose
    steelrose Member Posts: 3,798
    edited April 2015

    Caryn! Wonderful news! Now you can enjoy the Spring, and hopefully more fun travel too?

    To Susan and others who are awaiting results… my fingers and toes are crossed for you.

    I'm up for my CT scan on April 13… lucky 13? I hope!

    Thank you for starting this thread, Caryn. Good news or not, we'll forge ahead together. I have summer getaways to plan!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Wonderful news, Caryn!! We are celebrating with you!

    And Susan and the rest who are waiting -- we are sending lots of positive thoughts your way!

    Caryn thanks for creating this thread as a safe and supportive place to wait with others :)

    --The Mods

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  • annieoakley
    annieoakley Member Posts: 870
    edited April 2015

    Caryn, great news, doing a happy dance for you! Now relax and have some fun!

    Steelrose,  may April 13th be your very lucky day!

    Wishing all the others waiting for results positive news!

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  • Kandy
    Kandy Member Posts: 1,461
    edited April 2015

    Congratulations Caryn on keeping your relationship going with NED. He is awesome for sticking around. I hope all the others to have similar results. Best wishes to all.

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  • screech
    screech Member Posts: 212
    edited April 2015


    Yay Caryn!  I am so thrilled for you.

     I had my PET results the day before we left for spring break-fortunately I got good news - they say NED but I have what they said was a thickening in the lung that they will xray in three months.  They seemed very unconcerned about it - they say it is common in people that have radiation (I had 28 rounds, including some boosts for the primary after my operation).  Does anyone have experience with that?  I feel GREAT!

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2015

    So happy for you & your results, exbrnxgrl; it's great how NED results bring a welcome sigh of relief and tends to melt away some stress.

    3-16-2011, your therapist gives you good advice. But since your scans are next week, plan something for soon after rather than wait for summer. It can be a day trip, or weekend or even an afternoon or evening of something that you really, truly look forward to. I'm an advocate of getting out of your comfort zone, it makes you concentrate more on the moment because you are figuring out new things as you go. Retail therapy is good, I try stores I've never been to before, once it was Tiffany's, another time Swarosvkis. I've gone to the grocery store and bought new ingredients to whip up recipes I've never made before. One time I convinced myself to go to a makeup counter and have an associate apply products on my face (intimidating at first but was fun) and made some purchases. A movie, concert or a tour of some kind of museum you haven't tried. Recently, dh and I visited a huge hardware store that had an actual house built on the inside with all the latest materials. It was magnificent! We still talk about it.

    Best wishes to all the rest of you with scans and results.

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