Forum Discussion
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.
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
- Hullo all, a quick update. Saw the oncologist and he was great, easy to talk to, willing to listen, understood what I wanted to know - agrees that my situation is not at all clear-cut, contradictory elements to the diagnosis, could go one way, could go another. I felt he understands my position on chemo to a degree but at the deeper level he seems mainly worried about saving my life, not about the kind of life I want it to be. Side effects? Well, sure, but we can give you more drugs and more drugs and more drugs to deal with them. He brushes off the questions about percentages and statistics, yes, I know, everyone is different, each case is unique. More or less refused to run Adjuvant Online for me, so I have to find another way to do it, I've done Predict and the Cancer Math calculations, would like to see what Adjuvant would say, will have to either pretend to be a doctor (I see some others here have done that) or get my GP to run it for me - he might do it.
The bladder infection has had an enormous influence on my thinking here. It flared up as soon as I stopped the antibiotics after the hospital discharge (I had been on the same one as I had IV in hospital) so GP started me on another. It worked for a day or two then failed spectacularly, resulting in two-three days of unspeakable discomfort and agony. GP was great, sent sample off to the lab, rang me while I was actually at the oncologists' and said I had a bad case of pseudomonas, which is a gram negative rod organism endemic in hospitals and resistant to almost all antibiotics. LSS, put me on Cipro, one of the few oral antibiotics that still works on this organism, but it affects Long QT syndrome, which I have, a heart arrhythmia which causes syncope (falling down) but on balance he thought it better than the alternatives which require hospitalisation and IV infusion. Thank God it worked overnight, like a total miracle, but there are a lot of potential side effects. Anyway, there you have it, I haven't even started chemo yet and I'm already almost hospitalised. I honestly can't see how I could go through this kind of thing with a compromised immune system. But the medical response is - don't worry, take more drugs.
I must say here that it is true that pseudomonas lives in soil and such and a couple of people have said I could have got it gardening. I can't write this off as impossible as I did do a little bit of gardening before going into hospital but my dose of this is extremely virulent which is characteristic of the hospital acquired infections according to my GP. I have to tell the oncologist in a few days whether or not I will take the chemo he has already booked me in for in the Happy New Year. My man and my daughter have seen what I have gone through in the past few days and they are starting to see it my way. I am trying to work out what it is that the cancer medicos really think they are doing. I can't wait for @Zoffiel to write her book! - Primek - yes of course, a lot of good things can happen in those five years, and making it to 10 would be amazing. But all the stats I have now seen show that with my particular form of BC, given that the tumour is so large and there was a lot of bad stuff in two lymph nodes and evidence of cancer in another eight, the added value of chemo is still comparatively small. The really big difference is full surgery, axillery clearance plus the Aromatase. (Can't find out exactly what dfference the radio makes but I can see the logic of that and am OK with it). With full 3rd generation chemo there is still only 60% chance of five year survival. But as you say, depends which side of the cut-off figure you are on. But I do appreciate what you are saying and will be giving it a lot more thought after seeing the onco on Thursday, obviousy. All best wishes, A.
- You can live a lot of life in 5 years. My sister was clear 5 then developed metstatic breast cancer. Another 10 before it took her. She got to see ger children marry. Meet her grandies. So many thibgs she wouldn't have without chemo. Not everyone is sick on it. If it is unbearable, you can always stop.
Trouble with stats is we don't know which side we are on. What if you are the 10% still alive at 10 years? I guess this is where we have to have faith that we just might be. - Hi Annski,
So sorry to hear that you have had to have a "pyjama" day or two, you have made your decisions, you have had "those" conversations and I am sure your family have had a lot to say,you certainly have achieved a lot of information wise, in a short space of time and its such a pity that you have had to do it all yourself, would you mind if I said, take a breath and step back
you have had a lot to contend with recently and now a bladder infection,I can sympathize there not nice, having a day in bed will do you good,I understand that your mind is racing with so many things and what ifs!! but now is the time to say okay, I have all the information I have made up my mind about what I want, is it possible that you now just try and heal, both in body and soul, its certainly a bad time of year for all of this to happen, in fact its never a good time of year for breast cancer,however, what you need now is to be gentle on your self and so do your family, you have plenty of time to "get things in order" I understand, its what we all want to do when something like this comes crashing in to our lives, can I say you are not going to die today, tomorrow or next month, first things first - you need to regain your strength - do you have any plans for the holiday season, I do hope you do not plan on cooking for your family!!! it is their time to look after you, not just because of the breast cancer but simply because you are their mother, sister,aunt or friend, so please take care, and enjoy the beautiful December day, its now that we realize just how those small things are important -sorry I cant sit down and have a cuppa with you!! please keep in touch and let us know how you are, the cancer council have some great cancer nurses and if you just need a chat or have any questions ring 13 11 20 mind you, you will have to wait and press a few buttons first
but I found that it was worth the wait and they were able to put me in the right direction, I am 62 have Advanced Breast Cancer which has decided to take up living in my liver and my spine and am working on my 5 year anniversary,so please tomorrow is another day, the sun will set tonight and the sun will rise tomorrow,
wendy55 Hi Annski,
You can access a few visits to a psychologist or counsellor by getting your GP to put together a mental health plan for you. I was a bit 'meh' about the idea to start with but have found that part of my treatment is just important as the rest.
Conversations with family members about death can be difficult. I found it very beneficial to be able to test run things with my shrink, known as That Poor Woman, beforehand and it's great to be able to unload on someone who is not close to you, is not going to get upset or, worse still, come back to you months or years down the track with things you have said while you were under extreme pressure.
I think we have all had those moments of looking around going "What the hell am I going to do with all this stuff?' I've had a couple of goes at doing the big chuck out and planning garage sales etc. It was overwhelming and I've decide bugger it. Someone else can clean it all up when I'm gone. Whenever that may be. For the moment make sure your will and power of attorney documents are in order. Think about doing an Advanced Care Directive in case everything turns to shit in a hurry and leave it at that for now.
You learn a great deal when you get cancer. One thing that most people don't realize is that the success rates for chemo are frequently in the single figures. 7 - 9% is really common. Before all this happened I thought that chemo must surely double your chances of surviving. Finding out that the first time it gave me a 12% better chance and the second time about 5% was very confronting.
The doctors have an obligation to let you know what your options are, even if the increments are tiny. The difficulty, for me, was having my partner and son weigh in on the argument. I had decided not to have chemo this time around as it obviously didn't work last time and I knew what it was like. Once I told them this the pressure came on; they simply could not see why I would miss a what they perceived as a chance to stay alive. I regret giving in, but it's done now and I have to live with the consequences.
Being in pain doesn't help while you are trying to get your head around everything else. We all do the best we can and in the end, that will be enough. Marg xxx
- Thanks - not yet, I was about to do it this morning but I feel too unsettled to be able to explain myself properly. I will give it a try shortly when I feel less peculiar.
- Annski have you rang the BCNA helpline 1800 500 258, they are wonderful and can give you information and links to things to help you make decisions.
- 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.
- 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.
