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Annski's avatar
Annski
Member
8 years ago

Disappointed and confused by the system

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. 

33 Replies

  • @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. 


  • 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