Scans

That's terrible, @Brenda5 - each week they delay now will put it right on Xmas again & then they'll blame Xmas for the further delay!  :(

When was your surgeon's appt?  Why couldn't they get your scans done before it?  Even if you had to go to another town for them?  It would be worth it.  Results can be emailed the same day ..... 

Let us know how you go!!

Looks like I will have to chase up my own scans after the hospital rang and cancelled my biannual surgeon appointment because guess what, they hadn't ordered the scans yet. It's been a week now and still no phone call to make scan appointments. Might have to jump up and down and make the scan place enquire to the lazy bum doctor.

My GP has been the one to.listen to me. I have had CT of spine. Ultrasound of shoulder due to pain issues and the rhemstologist specialist ordered an mri and whole body bone scan to exclude why I had so much pain. Changing over my AI has made a huge difference and my bursitis (rapidly on my 1 month break)  has finally resolved....so a lot of my pain...back, shoulders, neck was related to letrozole.  (Ankles wrists and thumb also)The tests though stopped my worrying constantly about cancer in the bone. And my diagnosis of lactose intolerance has mostly stopped me worrying about abdominal /ovarian issues with the diet change. Survivorship is bloody hard at times. 

Re: Scans and the current guidelines

kezmusc said:

If you jump up and down hard enough they tend do it just to shut you up I think LOL.

In my experience to date, once you start itemising your symptoms and concerns all I get is this kind of glazed look and comments such as "at your age" or "to be expected" in relation to ONE item, with the rest seemingly ignored. (And I do try to use appropriate key words and phrases in an attempt to get their attention)  My rad oncologist discharged me to the med oncologist after my last radiation treatment, and the follow-up a month later did not address the few concerns I had.

In the less than two months since then, I have changed GP, and am now getting some follow up, with blood tests identifying a couple of problems, leading to successful treatment. She also requested X-Ray (to calm me down, I think), which led to CT, and discovery of lung nodules. Reported as most likely mets, which I'm prepared for, but it's not yet confirmed.

With surgeon follow-up next week, the good news is that the mammogram & ultrasound appear clear.

Thanks to everyone for their responses :) .  It makes me feel better that I am not the only one who didn't get a BC nurse. 
I thought everyone was because every patient I have spoken to at my hospital has had contact with this BC nurse, except me.
I have asked dozens of ladies, so I was beginning to think this is why I have to chase everything up myself and feel like a PIA for doing so. 
Even my followup with the rad oncologist at the Private Hospital.  I had to call and ask them when that was?   
When I was having treatment, I was told 3 - 6 weeks after finishing rads??  That time passed with no followup,only after I called was I  given an appointment,  8 weeks after treatment ended.

@arpie -  I will ring my Surgeon tomorrow to clarify about the mammogram / ultrasound, thankyou again ladies.  I do not know how I would have survived this if I did not have your advice to fall back on.

Most of the time I feel like Im flying by the seat of my pants, if not for my GP, psychologist and this forum,  I would be in big trouble.  :(

I didn't have a BC nurse assigned to me either - I was just lucky that my Rad Onc has taken over giving me referrals for my scans .... so far!  Maybe she felt sorry for me after last year's recall/biopsy stuffup - I wrote to her regarding the entire saga .... 

@Nefertari   -  If you ring your Surgeon's office on Monday & ask for a referral for mammogram and ultrasound on your boob/s - If you had a lumpectomy, you'd need a bilateral referral (both boobs) - otherwise just on the remaining boob if you had a mastectomy. They should send it directly to the Diagnostic Imaging company of your choice & you just ring & book the appt  at least 1 week before your check up with the surgeon. Your surgeon needs to have the results BEFORE your appointment with her - otherwise she is just guessing & you'll need another appt later!  Shame your CT isn't also in Oct/ early Nov - maybe you can arrange for both to be done on the same day - as your surgeon would need those results too.

Sometimes, we have to jump up & down to get the 'right thing' done!  GOOD LUCK!!

There were two metastatic breast care nurses involved in the panel discussion at the Gold Coast Conference last Sunday. I would have liked to ask them what one should do if fobbed off. I still don't know what their function is. 
As I have said before:  "Jane McGrath would be horrified!"

Not everyone gets a breast care nurse assigned, at least not when I was treated. I never felt any loss, my surgeon’s nurse was terrific as was the senior oncology nurse at day oncology. Any issues post active treatment have been referred successfully to my oncologist or surgeon, who have also scheduled scans etc. 

Arpie, I was never assigned a breast care nurse ;)  
At the hospital the Breast care nurse went on leave shortly after I was diagnosed and again for long service leave around the time I finished chemo.  I rang a few times and asked but to no avail as they don't replace her when on leave. At this point I do not want to speak to her. 
I was eventually put on to the METS breast care nurse who put me on to a breast care nurse from the Mc Grath Foundation. 
She was amazing but unfortunately also went overseas on holiday after my surgery.  I missed a call from her a few weeks ago and so called but to date have not heard back.  I have my appointment with my actual Surgeon (in her private rooms) at the beginning of November, so I will ask her everything about the scans etc.

Hi @Mic80

Depending on the date of your recon - I would imagine your scans will be 12 months from detection/diagnosis ... so prob in Feb.

My team, once surgery and radiation were completed and Onc meds arranged, organised that I would see one of them approx every 3 months as well as yearly scans. So I see my surgeon in Feb, Rad Onc in May, Onc in Aug, then have my yearly scans (mammogram, and ultrasound and just had mri) in Oct, then I see my Rad Onc again in Nov. I can book in again anytime to see the Onc again if I have issues with the meds.   This goes on for 5 years, I believe.

@Nefertari - did you have a breast care nurse? They should be able to arrange your scan appointments ... that is odd that you haven’t had your yearly appts booked already.  Grrr 

My Rad Onc has been  the most Pro-active of my team with my regular scan appointments!

all the best xxx