It’s scanxiety that finally pulled me down…

Fufan

I found a lump in May 2021. In January 2022 I was finally diagnosed, after a single mastectomy, with triple negative metaplastic carcinoma.  This is a rare breast cancer, with the worst prognosis of them all.  I sailed through the mastectomy.  I endured four cycles of TC, came out feeling terrible, but quickly recovered and since then have felt great, helped I’m sure by the loss of 20 kg.  I managed this with minimal help: no McGrath nurse, missed out on the rehab exercise programme,  and no support group other than you lovely people on this site. And when I read the stories on this site, I feel very fortunate, and proud of how I’ve dealt with the challenge.  I’m 76. 
 But then comes the time for my 12 month follow up, due on 1 February. I attended for mammogram and ultrasound and suddenly wondered whether the referral to my surgeon had expired. Unfortunately it had, no doubt due to chemo brain on my part. My GP is booked 6 weeks in advance.  I had an appointment with him booked for 3 February: just too late. So I rang the office, hoping to leave a message asking him to write a referral for me to pick up.  I MET À BRICK WALL.  No negotiation, couldn’t even fully explain my situation. These gatekeepers are just impenetrable!  I was left with no alternative but to delay my appointment with the surgeon until 14 February. ANOTHER TWO WEEKS OF SCANXIETY!  At my consultation with my GP today I just dissolved in tears and have hardly stopped since.  This is my first emotional collapse in my entire cancer scenario. Yes, scanxiety is real, and insensitive behaviour like this can just make it so much worse!

Afraser

@Fufan

My sympathies, it can be really nerve-wracking. To a degree, it’s some of the feeling you might have had earlier, expressing itself now. Scans simply remind you of the whole box and dice, with the threat of it all perhaps happening again. 

If my own experience is anything to go by, it gets better. The phantom twinges and odd sensations, the fear that this time it was something real that accompanied my yearly tests, went on for some time. Then just stopped. Nothing happened, the anxiety just packed up and went. Like everything else in this caper, the tests just became a normal part of life.

If you can ‘normalise’ the wretched referrals, it helps too! Ask for an ongoing one for your surgeon, or anyone else you may need to see for some time, so these Medicare induced timelines don’t catch you out (we’ve all been there). Your GP needs to know this is distressing for you - office procedures are one thing, but they have consequences. 

Best wishes, take care. 

Cath62

I hear you @Fufan. I got through my treatment well i think and then my first mammogram and ultrasound had me crying and weeping on the table. I think I held it together to get through the treatment regime of surgery chemo and radium and then bang, it happened. The girl doing my ultrasound didn't know what to do. I just couldn't stop crying that day. Well for me that first scan post treatment was February 2021 and yesterday I went for my third mammogram and ultrasound and no tears. It does get better. Take care 

arpie

I am so sorry you had to go thru this, @fufan - that is unforgivable!  I would have been a basket case too (but I can cry at the drop of a hat these days!) 

KNOWING that anyone with cancer will be seeing their specialist team for a minimum of 5 years (10 years for the Oncs) the GP should automatically give you a ONGOING/PERMANENT REFERRAL (ask for one when you see your GP so you don't have to go thru it again next year - and get them to do the same for your Rad Onc and Medical Onc at the same appointment, so you have ALL 3!!) as I did 3 years ago for my team.  (They don't always 'like' them, but they accept them!) 

When I rang 2 weeks ago to organise my surgeon appt yesterday, they tried to get me to do a new referral as well - but I stuck to my guns & told them they already had it!!  They tried to say it was something to do with difficulty going thru Medicare ..... but both my Oncs have never said there was a problem with the Permanent Referral ......  

Many specialists will still see you without a referral, specially if you are an existing patient - and you can fax/email it to them when you get back from the appointment with the GP - and the GP (if only doing yearly referrals) could easily set up a 'reminder system' & DO the referrals as the time approaches & get the Reception to email them straight to the specialists - it would not be hard to set up, at all!!   And it would be seen as being very helpful & an organised GP!   AND the GP should do it & fax it, without having to see you & charge you for an appt!  

Sadly, the gatekeepers have NO IDEA of the emotional stress & pressure that we are under  ....  my last scans was the first time in 5 years that I didn't have to go in for a 2nd scan/biopsy!!  WIN!

take care & all the best for your appts - both of them!  grrr xx

June1952

Oh, these gatekeepers !  I call them the gestapo as they do seem to have (or assume) a lot of power at times.  A certain breed ?  Sometimes one thinks they need to get ill themselves to understand the stress their actions are causing.
As you say, @arpie, I always ask for the permanent referrals.  Besides, if you have been there before (that was your surgeon ??) and they know this is ongoing they should be kind enough to see you and then have the necessary little bit of paper sent afterwards.  I often wonder if that referral actually gets checked by anyone ?

Fufan

Thank you all, @Afraser, @Cath62, @arpie, and@June1952.  I appreciate your support, and recollections of similar difficulties.  I have now been able to stop weeping (and feeling like a victim) and shall resume my usual practical forthright demeanour. I knew nothing of these permanent referrals: I’ll certainly push for that.  When such simple solutions are available, why must we be mired in all this bullshit? 

Keeping_positive1

@Fufan I hear you, it can be so overwhelming.  There is something called an "Indefinite referral" but the gatekeepers sometimes suggested getting a 12 monthly referral because (wait for it), the specialist can charge medicare differently, as if a new condition the client has.  An Indefinite referral is used when treating the same condition and the specialist CANNOT charge medicare the higher rate.  It is a rort if you ask me!  

If you are being treated for the same condition, then persist that you get an Indefinite referral.  Believe it or not I was asked by the front desk staff at the local hospital to get another 12 month referral instead of the indefinite referral, because as she said , the doctors/specialists deserve it because they work hard !!!!!!!!
No wonder our medicare system is going broke!!!!!  Sorry for the rant, but I do hope you push for the Indefinite referral, and wishing you all the best.

Keeping_positive1

I do believe the oncology team do work hard, but why should we be running around getting referrals that are not needed, just to put more money in their pockets, and take more from our medicare system.  

Fufan

@Keeping_positive1 that’s incredible.  I fear I’ll further antagonise the gatekeepers and get a reputation as a troublemaker!  (When I did see the GP on Friday to get the referral, he didn’t charge me for the gap as he usually does, so I suspect I have already been the subject of discussion.  Or maybe it was the tears?)

Keeping_positive1

@Fufan I told my GP at the time what the hospital outpatient front desk staff told me, my GP could not believe it, and then proceeded to give me an Indefinite Referral.  I didn't push back with the hospital staff, I just politely told my GP who saw to it that I was armed with the Indefinite referral.  Choose your battles, I totally understand.  Take care and try not to let them get under your skin.  

You can also ask your GP for a copy of the report/case notes sent to your GP from your specialists/surgeon/onco and other medical appointments.  

arpie

Don't worry about being a troublemaker @fufan and I totally relate to tears whilst seeing the GP. 

I seriously reckon that we probably know more about 'the system' than they do!  I am glad they didn't charge you the gap - that is becoming more rare these days & will be a major part of 'enticing a vote' in the next elections!  Whoever promises to increase the Medicare levy to GPs will get more votes - as it affects EVERYONE!  Some people are delaying seeing their GP due to the cost too!   Those with chronic/cancer or terminal conditions should NEVER be charged the gap.

And definitely ask for copies of ALL reports - both pathology and specialist's .... as is your right.   Grab a BIG box & keep them all in the one spot, so you can locate them at any time you need to.

take care xx

Fufan

Thanks @arpie, and I’m sure you at least know more than most of them.  Don’t worry: I am well organised with documentation.  I also have a file on my phone with a record of every symptom, test, or treatment.  So much has happened to me in the last few years, and I’m so often asked when I had my last X-ray/MRI or whatever.  I can also access all my radiology reports online.