Disappointed and confused by the system

Annski

I should start by saying I am almost 73 and have had a lifetime of excellent health (apart from hysterectomy a couple of years ago) and never expected to be dealing with this. Mammograms stopped a few years ago, as is recommended. Never had a problem, apart from a few cysts which had to be drained. But after some odd feelings of swelling and fullness (GP said normal at my age) I decided to go to Breast Clinic and was immediately diagnosed (on first mammogram image) as having cancer. After biopsies etc diagnosis confirmed and was given a list of surgeons to choose from, told to choose one and make an appointment. MInimal information is available: did fast checking, online research, spoke to a few people, knew mastectomy would be the only choice given the size and weirdness of the tumour, happy with that, didn't want reconstruction etc. Decided I wanted to go to a particular hospital, one I have been to for all my other treatments in the past, although I now live outside the area. My GP recommended one surgeon at that hospital but I chose another there, thinking they would all be involved in decisions as the publicity for the hospital went on and on bout the "team" and how everyone works together. Well that was completely wrong. Each surgeon has their own "team", it's not a team belonging to the hospital as a whole. I told surgeon from the start I did not want chemo. Long story short, had single mastectomy with axillary clearance (20 nodes, 10 positive), Grade 2 invasive, part was DCIS, a strange formation (long strings, not a lump so could not be felt as such); saw surgeon on a Wednesday, operated on the following Wednesday (8/11). Excellent surgery, no complaints about the handiwork.

But waited and waited for some hint of results, still did not have written results of previous biopsies, sent for CAT scans and bone scans, waited for discussion, there was a short five minutes  meeting before being discharged from hospital without any definitive discussion, waited for the scheduled postopertive meeting expecting to receive a treatment plan. I had said all along I didn't want chemo. As soon as I got the diagnosis I did instant intensive research, assisted by my daughter who is a professional researcher. I know about the side effects of chemo, have done my research which shows statistical benefit at my age of any chemo is 5-6%. At follow-up discovered my surgeon was referring me on to an oncologist at different hospital, one in my area (thought still 40 mins from where I live). I felt as if I had been kicked out. I wanted to have the rads at the original hospital, we had a plan so I could stay nearby for the necessary five weeks, now it seems I have been dismissed and am being treated by postcode. Oh, I forgot to add, I am a private patient and have already paid thousands out of pocket in gap expenses. I feel as if almost NO necessary information was provided at the outset, i.e. at the point of the mammogram/biopsy, let alone at the GP. You are just thrown in at the deep end and become another statistic to be treated bit by bit and passed on to the next specialist. Where is the supposed personal care and attention to the whole person in this?  Isn't that what private health insurance is supposed to be about? I am sorry now I didn't just go to the local hospital as a public patient and now I feel as if I don't have any "team" working for me since the new oncologist referral hasn't produced any result, not even a phone call to say I am on their "list" or something like that. I am waking up every morning with no idea, still, about what is going to happen. I am so grageful for all the great information on this site or I wouldn't have any idea what to expect. I so admire everyone here because they seem to be so accepting and grateful. Best wishes to everyone who is at the same stage, i.e. newly diagnosed and thrown in at the deep end. I admire you all, for seeming to be able to take it so calmly. 

primek

Welcome to the site. Yes the beginning is the whirlwind with tests and confusion. 

I went through the public system as I did want that team approach. It's not too late to have a recferal to that team if you prefer.

Even though you don't want chemo and have researched really it's always best to have all the facts laid bare by the oncologist. Asking questions about recurrence etc are best dealt by tbe oncologist. Your pathology is the biggest part of the decision. Have you got that back yet. Normally 10 days post surgery. You can request a copy of all scans, and results done. 

Breast cancers are all unique. Some are managed with hormone therapy only. Others really do need chemo to stop it in its tracks. As you said 73 and healthy. No reason to believe you wouldn't cope with chemo and go on to live a very long life, if that's what they recommend. Regimes are determined on the pathogy, the health and the best outcomes for that patient. 

I have a new bc sister friend I met through chemo. We had same pathology. However as she is 20 years older than me she was on a slightly different regime and coped very well and now off caravanning with hubbie...moving back on with her wonderful life. She is 74. 

Time frames for starting next phase if surgery are important. Please contact the oncology team referred to and push yourself up tbe list...stressing nodes and when surgery done etc.

Have you a breast care nurse as yet?

They can help you navigate the system.

Kath x

primek

 Help service bcna...

http://onlinenetwork.bcna.org.au/discussion/17631/helpline-nurse-member-services-officer-available-tonight-on-helpline-1800-500-258#latest

Have you got this resource? 

https://www.bcna.org.au/resources/my-journey-kit/

How to find your McGrath breast care nurse.

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

SoldierCrab

@Annski
sorry that you feel so disappointed by the system PrimeK has said most of what I would of said.... 
I would suggest finding your nearest Breast care Nurse and having a chat with her. 

Annski

Thanks, Kath, you are a great support to everyone here. I thought I had a Breast Care nurse but that was only while I was with that surgeon and at that hospital. None of the nurses listed on the McGrath site are anywhere near where I now live. Yes, thanks for the My Journey Kit reference. And yes, I was about to call the Helpline today to see if I can get any clarification about how to actually get a bit further along with this. Will report back later.

Zoffiel

Neither accepting or grateful,in my case. Yes, I recognise that living where I do gives me a greater chance of survival than pretty much anywhere in the world. But we do pay for it, one way or another.

I've just finished treatment for a recurrence, I first went into the BC mincer in 2006 aged 43. I'm smart, have some medical background and worked as a professional know it all for years. I'm also not shy and have had my arse hauled for being 'disrespectful' on more occasions than I could count. Usually that happens when I challenge someone who thinks their rank or profession puts them above scrutiny or criticism.

I am still battling to get a handle on where I go next or how to manage the almost inevitable return of my disease. This last treatment saw me coordinating 4 different medical services who usually don't work together. Experience had made me bloody minded and I refused to follow the usual train of referrals

It is bloody exhausting. I know how to make sure all my results get to all the people who may need to know. I've figured out how to email anyone in any health service once I know their name. I've made formal complaints about shitty practice on two occasions where if I hadn't made a fuss I could quite possibly have died from surgical complications. I know that a referal is just that, and you can get another one for someone else. I also understand that the people involved are busy and that the cancer industry attracts personality types who are not always user friendly. I take notes and photos. Of everything. I get everyone's name and document what they say to me and when. I've been accused of being adversarial. There are red dots inside most of my files.

What I don't understand is why I have to be such a bitch in order to get the care I need. Yes, the squeaking wheel gets oil, but, seriously? 

Follow your heart and approach your disease the way you would any major event in your life. If you are an information junky, chase it down. If you prefer someone else to run the show, let them. 
Good luck. Marg xxx

Annski

Thanks, Kath, you are a great support to everyone here. I thought I had a Breast Care nurse but that was only while I was with that surgeon and at that hospital. None of the nurses listed on the McGrath site are anywhere near where I now live. Yes, thanks for the My Journey Kit referenece. And yes, I was about to call the Helpline today

Annski

To Zoffiel (Marg), well thank goodness for that. I thought I must be some kind of outlier or weirdo, to have found this process so infuriating, and I am only at the very beginning of it. I had read your prior comments and knew you had some strong views. I have wasted this whole morning now trying to find out why I have been referred on to someone who only practices in the public system... and found it is a case of treatment by postcode. I can see exactly where you are coming from. I also know a recurrence is likely, and the question is how to manage it then when everything seems to just get worse all the time. Thanks for your tips about taking photos and notes. I had thought of writing a detailed diary about all this, but then thought it might be overkill, but now I am reconsidering. Is there a way to send a Personal Message on this site? Would you be OK with that?

June1952

Hi @Annski
Nah - no-one is as calm as we appear - at least not always !
The whole medical system is so confusing and I would say exactly what Kath and Marg have said (above).
If you need to rant and rave to get your answers then do so !
My BC nurse was 75 kms from me and had no interest in me at all.  If I asked a question the answer was always in her office.  I now know a bit more but far too late.
Most of us who struggle to pay for private health insurance get disgruntled about the system and the added costs we bear.
Perhaps put a call out on this site for ladies who live in your area who may be able to offer some guidance as to who and what is available to you.
Keep watching ...!
Summer  

Annski

Hi Summer,

Thanks so much for this message, and for the advice about the PM (I mean the personal message, not the poor fellow in Canberra).  Why is it that there is so much we need to know but we always find out about it too late? I have bought a few books online as well but have found nothing that really explains stuff clearly - plus, people in the US and the UK have such different experiences. For instance, it took a lot of research to find out about the Oncotype DX test, and then to find out that in those places it is easy to get it done but as recently as October the Australian health authorities refused to put it on the Medicare schedule - so if you want it you have to pay $4000 or more. And my surgeon said it wasn't really going to help in my case but didn't explain why, although now I have realised it is to do with the size of the tumour and the number of lymph nodes involved, so it is a kind of "tick the box" thing as to whether it can help in the decisions about chemo.

I decided to be assertive and rang the Clinic where I am supposed to be seeing my oncologist, and yes, they had made an appointment for next week, but only then I find out that this doctor only works in the public system so I won't have him as my oncologist other than when he happens to get involved with my case. Not that there's necessarily anything wrong with seeing the registrars, but that's not what I have paid private insurance for over more than forty years. So maybe it's back to the drawing board and start all over with someone completely new!

Not sure how to put out a call to people in my area but it's a great idea. I guess I would feel much better if I had some more feedback about the local services. 

Good to have your support, Summer, all the best to you.
Annski.

June1952

Hi @Annski
Good on you !  Well done !  Doesn't it feel great to be so proactive ?
Have you contacted the BCNA helpline to see if they have knowledge of any additional support for you ?
States can be different with the services and the systems, what State are you in ?
With a recent emergency hospitalization my husband found himself in the public hospital but paying via his private insurance and our big grumble is seeing different people each time - they don't know him and we cannot develop a relationship with them and that has been an issue for us.  Maybe this is an age thing and younger people just accept it for what it is ?
Summer  

primek

I had a local breast care nurse...who wasn't a lot of support but I had the email address of the 2 I met having surgery and used to send them questions and they would follow stuff up for me and email back. Very helpful 500km from the main hospital of my care. 

primek

Also I just wanted to share. My niece had 20 nodes removed...10 positive. 15 years on she is cancer free. I know this was because of her chemo regime. So don't think just because you have positive nodes a cure isn't possible or at the very least a lengthy delay with recurrence. Something we are all hoping for. X

wendy55

This is what bcna is all about, a place where we can come together, and exchange information, in a supportive and caring enviroment,I am so very grateful that I found out about the online forum,

Wendy55

Unicornkisses

Welcome @Annski, 
I learnt very early on that I was to take control of my treatment plan and ensure my mental health.
I did have an excellent team ( also a private patient) but I still had to ensure that phone calls were made and appointments booked in, especially in the beginning.
If I didn't receive a phone call when expected, I rang either the surgeon's office or the place that was supposed to give me the schedule.
I am not someone who can reschedule their life at short notice and needed to get the appointments into my diary.
I found that some of the scheduling teams were inclined to leave appointment scheduling to very close to the time of the appointment which did not sit well with either my work schedule or my mental health!
So if your are not happy with the way things are progressing be proactive. 
You are paying these people and need to be confident in both their attention to your needs and to treat you as a valued patient.
Remember too that you can always switch to the public system at any time.

No, things do not always go the way they are supposed to, people do not always do what they say they are going to do, and proceedures are not always followed.
So you are quite within your rights to question everything and to insist on being informed.
Dont just rely on others to do what you think they should.

If you want your results of anything, ask for them.
You can get reports from your GP, surgeon, Oncologist, for any scans or tests you have.

I have printed copies of all pathology reports, all scan reports, blood tests, letters from one specialist to another indicating treatment plans, MRI results, etc.

I hope you can get the knowledge you need to ensure that you get the best of care no matter what treatments you choose.

Annski

Hullo again everyone - just wanted to thank you all for your input and advice. But suddenly came down with a bladder infection a couple of days ago and also had some tough conversations with my nearest and dearest which left me sleepless and more anxious. Just wanted to bury myself under the covers for a while. Kind of peeking around again this morning, it's a lovely cool misty day, unbelievable for December, and now wondering how many more Decembers I will be seeing.  Looked at the statistics for my condition on the Predict site; even with all the therapies (chemo, radio, aromastase) only 60% make it to five years and 25% to 10. I'm not afraid of dying as such but it's the need to make plans and put things in place for my family members that is overwhelming, and the idea of spending valuable chunks of what could be a very short time being sick from the proposed treatment seems crazy. I want so much to stop thinking about it but can't shut the brain up. Yes, I know, do some exercise, meditation, relaxation .... will try, I promise. Pain from the axillary clearance has also been driving me crazy, can't drive or even put the damn dishes away. Unfortunately the midday movie today is about Florence Nightingale so that doesn't add much joy to the mix.