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Scanxiety

Scanxiety

Posted by frozenstar on Nov 7, 2020 12:21 pm

Well, my PET/CT is scheduled Wed Nov 11th. I am scared. Scanxiety is real, uuugh.
I'm trying to be hopeful...
Hugs to all, and I hate cancer.

Re: Scanxiety

Posted by Brighty on Nov 7, 2020 1:17 pm

Hugs to you frozenstar‍.   I'll be thinking of you on tbe 11th.   We are all with you.   
Help is out there. All you have to do is reach out.

Re: Scanxiety

Posted by cancertakesflight on Nov 7, 2020 2:11 pm

frozenstar‍ I understand completely how hard it is to weight for a test and then weight for the results. It doesn't matter if it's the first time or not. I just went through this myself and wrote a series of blog posts about the process of getting tests and results. Please look in the blog section of the site for cancer takes flight. Each post compares the stage of the process to a game. You can also find them on my website at laughterandcancer.com.

As Brighty‍ said. We will be thinking about you. Please keep us posted.

cancertakesflight 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Scanxiety

Posted by Yuliya on Nov 7, 2020 3:17 pm

frozenstar‍ , hugs to you. I am thinking about you often. I am also anxiously waiting for my follow up appointment, which was supposed to be in October.
well at least today you can distract yourself with some tv, right?

Re: Scanxiety

Posted by JustJan on Nov 7, 2020 9:18 pm

frozenstar‍, Waiting to have tests and then waiting on results is so anxiety provoking. Try to keep yourself busy. My house is never cleaner or more organized then when I am anxious. I will be thinking about you on the 11th. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Scanxiety

Posted by Whitelilies on Nov 8, 2020 12:22 pm

frozenstar‍ Hello.......Waiting for any scan, or even result, is just so hard....we all get it!
So....make this time "work for you"!
Get outdoors.....walk......crunch the leaves.....sip lemonade on the porch......slather on the sunscreen.....
Wishing you the best......

Regards,
Whitelilies

Lillian

Re: Scanxiety

Posted by frozenstar on Nov 8, 2020 2:10 pm

Doing all of the above! Thank you guys!

Re: Scanxiety

Posted by Runner Girl on Nov 8, 2020 2:17 pm

frozenstar‍ 

I was thinking about you earlier today, wondering if your scan had been scheduled.  I am relieved to hear it is on Wednesday.  You will be in my thoughts and prayers my friend.  Sending you big hugs.

Runner Girl 
Never stop believing in HOPE because MIRACLES happen every day!

Re: Scanxiety

Posted by Yuliya on Nov 11, 2020 5:38 am

frozenstar‍  I just said a little prayer for you. ♥️🙏

Re: Scanxiety

Posted by frozenstar on Nov 11, 2020 7:33 am

Yuliya‍  ty lady! I am nervous about today, but hopefully it goes well. So grateful for the support I get here, THANK YOU ladies! I am a different person than when I began this journey, and cancer connection, the people here, had much to do with it. Grateful can't begin to describe the debt I owe. 

Re: Scanxiety

Posted by Runner Girl on Nov 11, 2020 7:49 am

frozenstar‍, 

Keeping you in my thoughts today.  Let us know how it goes.

Runner Girl 
Never stop believing in HOPE because MIRACLES happen every day!

Re: Scanxiety

Posted by Lacey_Moderator on Nov 11, 2020 9:39 am

frozenstar‍ 

Wishing you well today. 

Our community is a better place because you are in it ❤. Your comment means a lot.

Hugs,
Lacey

 

Re: Scanxiety

Posted by Whitelilies on Nov 12, 2020 5:01 pm

frozenstar‍ Hello.....yes we all face "scanxiety"......my latest round was end of Sept, to be ALL repeated in March....every 6 months; glorious CT scan...

How was yesterday?  I will assume the results will take a bit of time.....

If possible, share when you catch your breath........

Now, you can focus on Self-Care.....Netflix....warm bubble bath.....hot cocoa and lots of sugar free marshmallows.....lol

Regards
Whitelilies

Lillian

Re: Scanxiety

Posted by Mammabear on Nov 26, 2020 11:07 am

Scanxiety   noun
Definition of scanxiety
1 a : apprehensive uneasiness or nervousness usually over an impending or anticipated ill such as the anticipation of an upcoming scan or test to determine cancer growth or remission.
My name is Laura (aka Mammabear), and I had scanxiety. I am over it now (until next time) as I have the results and thank goodness they were good but I was a real Mammabear waiting both for the scan and the results.
Scanxiety is common for all cancer patients and care givers.
I have Stage 4 triple positive Breast Cancer. I try not to let cancer define me but I will admit to putting life on pause while I was in scanxiety. Living with a death sentence over your head is hard. Triple positive likes to go to the brain. I am having headaches. My previous scan didn’t show any shrinking in my liver tumours, they were ‘stable’. Oncologist added Letrozole to get mileage out of adding hormone therapy.  I don’t want stable. I want NED (no evidence of disease). Was it working? Was Letrozole the cause of my headaches and fatigue? Result is that the new scan showed liver tumours shrinking again and brain all clear so it is working. But I still have the headaches and fatigue.
I have a friend. She was diagnosed with triple positive about a year after me. She is younger *48 to my 56). She was diagnosed with it back in her liver 2 weeks before me. When this happened I told her she was not allowed to die first. Hers is in her brain. She had one large tumour removed surgically (slurped out with a vacuum – Dyson or Hoover? I wonder which brand is a brain tumour vacuum). Tumour was pushing on her brain, not IN her brain so no brain cutting - Phew. They will radiate the smaller 2. My husband and I were freaking out in scanxiety that I would follow suit. I didn’t – my brain is ‘unremarkable’. Now I have survivor’s guilt. Each of us and our response to treatment is unique. She had an allergic reaction to Pertuzumab so was only on herceptin. When her liver tumours started growing again they added T-DM1 (super Herceptin) but only had 1 treatment before the brain tumours were discovered. She is now back on Herceptin + T-DM1 so I hope her tumours start shrinking again.
Do you have scanxiety? Is hope finite?
 

Re: Scanxiety

Posted by Lacey_Moderator on Nov 26, 2020 2:22 pm

Mamabear‍ 

Thanks for reviving this thread. Such an important topic.

I'm gonna tag WestCoastSailorashcon‍ and Kims1961‍ to share their experience.

I think hope changes based on our circumstances. Interested in what other have to say!

Take Care,
Lacey

Re: Scanxiety

Posted by WestCoastSailor on Nov 26, 2020 3:36 pm

Arrgh Thanks Lacey_Moderator‍  I think.

A subject that is near and dear to my heart for reasons that shall be revealed in the next day or so.

This last CT round was rough. I have lung cancer, brain mets a real possibility. So every time I misspell "recieve "or type "I"m" or "ANd", I wonder if this is an impact of a brain tumour. I had a new tumour nodule discovered in September. Instead of the four month scan I was hoping for, I got a new scan in two months. And the run up was kind of okay but the time between the actual scan and the results, I was a basket case. Thoughts going a million different directions. From practical realities to contemplating what death was going to be like.

What a great question, is hope finite? My answer would be an emphatic no. On the other hand I will easily concede that life is finite. It's funny that this question comes up as just a few hours ago I was thinking about the fact that I haven't shared poetry for a while and I know that I have shared this before. Emily Dickinson nailed it so beautifully.

 “Hope” is the thing with feathers - (314) By Emily Dickinson

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

You don't sit in metastatic cancer groups for very long before people start dying around you. And the survivor guilt is real. Why am I still here when they are not? And yet there is a strength that comes from sharing that journey together. When someone asks, "How are you going to face those final days?" and you know that they are sincerely looking for someone to talk to about it. And that it is too much of a burden for their caregiver, and not real enough for their social worker, and everyone else is running for cover. What a privilege to share that, to listen. I don't think you need answers, just need to be able to listen as they work it out.

Saying stuff out loud makes it real. Thanks for letting us listen.

Angus
My story: http://journey.anguspratt.ca

Re: Scanxiety

Posted by Kims1961 on Nov 26, 2020 3:42 pm

Mamabear‍  You described scanxiety so well.  It’s a word i didn’t know existed before cancer.  BC ( or before cancer) - sure I’ve had scans, but the results didn’t have the same ominous weight to them as they did after cancer.

What i found strange when my scans came back positive for breast cancer, was i feeling was well - really well! I didn’t feel “sick” other than anxious to what the results of the scans are going to be.

I was on Letrozole and did get headaches - “ fuzzy” head i would describe it and an overall feeling of not well.  So hard to know what is a side effect of medication and what is a recurrence?

Is hope finite? I’ve come to terms that HOPE and Acceptance can live together.  I may on one hand be rationale and accept the outcome but will also continue a thread of hope.  Good question ...it would be interesting to hear what others think.

Great post, Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Scanxiety

Posted by ashcon on Nov 26, 2020 11:19 pm

Mamabear
Laura,  I always love reading your posts.  When you share your numerous experiences and ruminations of your journey I always get a refreshed perspective.
I haven't had a scan in awhile so my scanxiety is pretty dormant at this time. (touch wood!). 

I am sorry to hear of what your friend has experienced. Boy she's been through a lot. I can see how it would be easy to assume this is your destiny too.  I'm glad to hear things are stable or "unremarkable" for you at this time and I sincerely hope that NED are 3 letters that are in your future. 

I have a good friend on my dragon boat team whose stage 4 cancer will likely take her out before we can get back on the water next summer. (We lost this past season to darn covid. Aargh!) It is her birthday on Monday and we are all sending her the biggest bunch of flowers along with a promise to take her paddle with us to every one of our regattas so that she will always be in the boat with us. 
Her hope is not one of survival, but that we will always take her with us and keep talking about her. I think this has helped her balance and assimilate the hope and acceptance that Kims1961‍ so aptly described. 

WestCoastSailor‍ thanks for sharing that poem again. So relevant. 
Hoping you know you are not alone as you wait for your next results. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Scanxiety

Posted by WestCoastSailor on Nov 27, 2020 10:49 am

MamabearashconKims1961‍ 

I guess I left it out there. I got my results and a three month reprieve. Tumour nodule is probably inflammation and is shrinking. And so I go on living...

Angus
My story: http://journey.anguspratt.ca

Re: Scanxiety

Posted by Brighty on Nov 27, 2020 10:53 am

Yay WestCoastSailor‍ !!!! Angus.... great news!!!
Help is out there. All you have to do is reach out.

Re: Scanxiety

Posted by Kims1961 on Nov 27, 2020 11:30 am

WestCoastSailor‍  Angus- Hopefully you can hear my shouts of glee from Ontario!  Thank you for sharing - good news is always so welcomed!

It reminded me about a piece of scanxiety - is that sometimes after finally getting the news , that i realized how “scanxious” I was.... i could say to myself, not to worry but that weight that is lifted - even when i found that my cancer was more aggressive - it was nice to finally KNOW....not guess.

Kim

 
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Scanxiety

Posted by Mammabear on Nov 27, 2020 11:58 am

Thanks WestCoastSailor‍ and everyone else, your words are always inspiring and I am glad you had a stable scan and can relax the scanxiety for a few months. Your poem is wonderful and thanks for reminding me of the Metastatic cancer group at BC Cancer. Are they meeting virtually during covid? I also have been meaning to talk to one of the BC Cancer counsellors but it is easy to put it off when I work 10+ hours a day. My Onc suggested it saying it isn't easy living with a death sentence over your head. It took me a long time to put fingers on the keyboard for this post because as was said, it makes it real. Work is  also an easy out to bury my feelings and worries as being in healthcare IT with a pandemic in full swing we are slammed. 

Cancer spreading to the brain is my biggest worry and I need to deal with that.

Listening to CBC Music this morning and they have Cat Stevens on the Essentials . He said "My past is what I stand on. My future is what I jump at" so that will be my mantra for today. 

Re: Scanxiety

Posted by WestCoastSailor on Nov 27, 2020 12:46 pm

Mamabear‍ 

I hope I didn't paint a grim picture of the metastatic group. I remember that it took me three months to get through the door only to find that they didn't have a facilitator. It took several months to sort that out and then we when we finally met a couple of times then covid hit... If you are in healthcare IT you may have a sense of what it took to get them moved online but full kudos to the Social Worker that did it. She was the only one in the province that managed it. And it is really great. I have sent a PM with the contact info for her. Hope we see you today. And don't worry about being late. People come and go as they are able.

Angus
My story: http://journey.anguspratt.ca

Re: Scanxiety

Posted by Kuching on Nov 28, 2020 8:11 am

Kims1961‍ , I totally agree with you that knowing - even when it’s bad news - is much better than wondering and worrying.  I just wish more of the medical staff would realize that!  I fail to understand why they think waiting a week to be told the bad news over the phone is better than reading it right away in an email.  Also, when you only get 10 or 15 minutes on the phone (or in person), I like to have my ducks in a row beforehand - have time to assimilate the news, do a little research, and know what questions I want to ask.  

For a while I had a  Nurse Practitioner who would send me results as soon as she got them, good or bad.  But she retired, so now I have to beg and bribe various doctors and nurses, and it doesn’t always work.  I can get some results online direct from the hospital, but they tend not to post the report for about a week.  

Scanxiety!  Aaaarrgghhhhh!!!!

Re: Scanxiety

Posted by MommyT on Nov 28, 2020 8:59 am

WestCoastSailor‍ That's great news!