Scanxiety - does it ever REALLY go away?

arpie

Does Scanxiety ever really disappear?   I think not.

It is 4 years in Nov since my ILC tumours were found, by accident, by my GP - as the rural BreastScreen Bus screens totally missed it ..... TWICE.  Rural breastscreen buses do not have 3D mammograms - only 2D ones - and they are unlikely to pick up Invasive Lobular Cancer (that does not present as a 'lump' ....) and any cancer is almost impossible to 'see' in those with Dense Breast Tissue.  If you don't know what breast tissue type you have, get your Surgeon/Oncologist to tell you - as Breast Screen NSW refuses to do so.

If you are able to pull up a pic of your Mammograms .... you'll actually SEE if you have dense breast tissue, as much of the breast will showing as 'white' (rather than fairly clear) and as cancer also shows up as 'white' ..... the dense breast tissue hides the cancer.

What followed was 2 years of anxiety as I had a recall on my first anniversary scans, which luckily, were benign .... but being rural, things all take longer to happen.  Altho I had my surgery within days of seeing the surgeon (10 days after my diagnosis on Jan 5th was confirmed) it had taken 2 months to get to the diagnosis, with my biopsy being done between Xmas & New Year.  The following year, the biopsy was on Xmas Eve .... so 2 x Christmases/New Years - totally stuffed!!  For this reason, I brought my scan dates a month early to October - so that if anything needed doing (ie biopsy) I wouldn't be in the Xmas Rush!

SO .... I head north today for my annual Mammogram and Ultrasound (luckily, having the resident specialist breast Cancer Radiographer doing both!)  I'll take hubby with me & will probably even take him into the clinic room with me (if allowed) to keep an eye on him as he has mod-severe dementia.  Otherwise, I'd need to arrange someone to sit with him, if I left him at home.

Up til this morning, I hadn't really 'thought' of the scanxiety .... but then it raised it's ugly head again!   grrrr.   

I am not expecting any adverse results - but with this beast, you just never know! 

I see my Rad Onc next week, also up north - my 2nd last visit to her - next year being Year 5 since detection.

Wish me luck!!

Afraser

Good luck @arpie!

I don’t think scanxiety ever fully goes away but it does get less. I used to have two or three weeks of jitters and phantom twinges, but for my ninth annual mammogram post diagnosis, last week, just a couple of twinges and a bit nervous while waiting (all of 20 minutes!) for the results! Best wishes for everything. 

Cath62

Hi @arpie

Wishing you the best for today.

 I got  my referral  for my mammogram and ultrasound the other day while at dr. Even the thought of that triggered me. I don't need to go yet. Due January. 

 I went early for my mammogram and ultrasound posttreatment. I was surprised at my reaction for that first one. I wept on the ultrasound table like I have not done. I knew my tears were from the trauma of it all but I couldn't stop. It was so terrifying even though I know there would be no cancer there. How could there after all that treatment I had received.

The poor lady who did my ultrasound didn't know what to do. She was knew at the place I had been going for the last 18 years. She asked me if I knew how to check my breasts and that was it. I thought it was a stupid question and irrelevant at this time when I was crying my eyes out. 

When i go for the next one i am going to ask if my husband can come in with me instead of the waiting room. I know he can't come in for the mammogram but hopefully he can for the ultrasound.

Let us know how you go. Sending you a hug x

iserbrown

Julez1958

Hi @arpie

Short answer “ no”.

Long answer:

One of the later podcasts in the Dr Charlotte Tottman podcast series on the announcement above “ What you don’t know until you do” was about fear of recurrence and I found it excellent.
Like you my cancer was lobular , it was not picked up on the breast screen mammogram and had grown to be 5.5 cm before I felt a lump.
When my breast cancer surgeon said “ lobular cancer is often not picked up in a mammogram” I said “ I wish someone had told me that”.
I also had a petscan as part of my cancer staging which picked up a very tiny unrelated thyroid cancer ( thyroid since removed and all good) so I have the added tiny voice in my head “ well if there were two cancers don’t things come in threes”?
The podcast had some  good coping strategies for the fear of recurrence / scanxiety issues.
Good luck with your results my wishes are with you.

arpie

Thank you.  WOW!  9 years!  Well done YOU, @Afraser.  I have total faith in 'Doris' who is the specialist BS radiographer .... she's done all my US since 2018 ... so am very happy to have her do my MG as well today. 

Do you go to a proper radiographer (not the breastscreen bus?)  I wonder if I choose to go back to Doris after Year 5, if I will have to pay for it, as some are referred back to the Buses, if you live in rural/regional areas.  Even the closest Radiographer place in 2018 was 'undecided' on their results (MG & US) so I'd really prefer to get Doris to do them .... confidence in the service is everything!  Sadly, I have NO confidence in the BreastScreen Buses now (altho they do a wonderful job on DICS and other BCs ... just not on those with dense breast tissue!)   

@Cath62 - I can relate to your tears - but mine weren't on the scan table ... it was for other reasons at different stages of my initial treatment .... I hope your 'new lady' learned some empathy skills after she treated you xx.  My radiologist today allowed hubby to come thru & sit & watch TV in the 'internal' waiting room, and he was happy there - which was nice of her to allow.  

Yep - that's about it, @iserbrown xx  This bloody disease mucks iwth our brain even more than our bodies!  gttt

@Julez1958 - I need to listen to all of her tapes - I've just listened to the first one, so far.  A girlfriend had half her thyroid removed some years back & the remaining half is kinking her oesophagus - and she is fearful of needing a tracheotomy - leaving an open hole in her neck .... she is a mad keen kayak fisho like me & would be fearful of being on the water again, with the hole.  

We are just home now - a long day on the road!  Gees, that mammogram really DOES hurt sometimes .... just a tad 'more' than discomfort, this time!!  Hopefully all is good - I will find out next week when I see the Rad Onc!

thank you all for your support xx I appreciate it.

Afraser

Hi @arpie

Good you are home and all done. One advantage of being in Melbourne (there have not been all that many over the last 18 months!) is that my breast surgeon runs a very convenient outfit - 3D mammogram, ultrasound if required and physical examination all at one appointment with the results too! I do pay for it but once a year it’s not very much and the peace of mind is worth every cent. I haven’t any breast density issues (breasts get less dense as you age and mine is now virtually transparent, according to him!) so ultrasound not required this time. He’s also a dab hand at looking at the odd little excrescences (sebhoraic keratosis and a mole!) and doing the removal! Good to have someone you trust and who knows your history. I’ve been very fortunate - my GP found him by googling! But this was one of the rare good googles! Best wishes. 

June1952

Glad the day is over for you @arpie.  Strange how sometimes they squish the boob that much harder, I think it depend on how close they want to get to the armpit and chest wall.  All the best with your results.  Will be thinking of you.  💖

Halla

arpie said:

I see my Rad Onc next week, also up north - my 2nd last visit to her - next year being Year 5 since detection.

Wish me luck!!

Good luck @arpie! The stats are on your side oxo

HappySoul

@Cath62 I can totally relate to your surprise at your reaction. I had my first mammogram after treatment Jan 2021 & although had been nervous in the weeks/months leading up to it, was feeling ok about being able to cope. To my horror, just as the kind lady was about to squash my boob I started sobbing 😭 uncontrollably. The strength of the emotion was overwhelming & seemed to come from nowhere, my legs were almost collapsing beneath me. In the end I needed the lady to stay next to me to support me during the scan & she got another person to operate the controls. I’m hoping I manage better for the next one. 

I think your quote is spot on @iserbrown - it’s remembering the fear and trauma we’ve been through. Kind of like a post traumatic response in some ways.

Cath62

Wow @HappySoul, you definitely had  strong reaction like I did. My next one is due 1 February 22. I was thinking about my first scan a couple of months before it was due like you did. I too thought I got this, I am ok. But on that table, exposed, I just went to pieces.  Hopefully the next one I won't be as bad on the table again 🤔. 

@iserbrown you are so spot on about it being the remembering the trauma.

Locksley

Same for me.  First mammogram after treatment I could not stop the tears. The poor lady doing it must have wondered what had come over me.  It was all the remembering. 

cranky_granny

I’ve learned to cover my nerves with Jokes 
not sure what the they are thinking but it gets me through. 

Im on the count down, booked in  for scans on the 8th nov. No squash just  bone and Ct
@arpie will be thinking of you. Don’t know whats worse. Preparing for the scans or waiting on the results. 

Keeping_positive1

@cranky_granny I also cover my nerves with jokes.   The day I had my breast surgery I was asked by my breast surgeon to relay back to him what surgery I was having.  I said I am having a nose job, eyelid lift and chin tuck.  He replied, that is tomorrow, but what are you having done today!  Lol, his reply was gold!

Keeping_positive1

@arpie wishing you all the best for good results.  It sure doesn't get any easier, I still get scanxiety nearly 5 years on.

kezmusc

All the best @Arpie.

I don't really get the scanxiety anymore.  Quite possible due to the volume of close together scans.  Kind of like desensitisation lol.  The only time I get a bit antsy these days is right before I walk in to get my results.