Left in limbo after diagnosis
Comments
-
Hi @Yango Welcome to somewhere you don't want to be !!
My timeline in the public system was -Mammogram 22/3, biopsy 23/3 , results (shit) 26/3,next apt at Breast Clinic 4/4 where I saw the surgeon , the medical oncologist & the radiation oncologist , lumpectomy operation on 26/4.
The waiting is the worst ,but you will get there. As far as i'm aware the govt guidelines aims surgery to take place within 30 days of diagnosis. Good luck you will get there x
0 -
Hi there @Yango. I was treated at a major teaching hospital in Sydney as a public patient. I was actually in hospital for another condition and a CT scan (body) was done for that. That was when the BC was found. Within a fortnight I'd had the biopsies, mammograms, ultrasound, another CT.(full body and also bone scan. I then saw the Oncologist and breast surgeon and my situation was discussed with a multidisciplinary team and the plan of action drawn up. I had chemo first, followed by the bilateral mastectomy and the chemo started before that two weeks was up. I also had a port put in on the morning of my first chemo. Then Christmas came around, between the first stage of chemo and the second stage, and all the medical staff seemed to be on holiday. I was hoping that someone mentioned to the cancer that it was Christmas, so please don't keep growing, as that would not be cricket. I think that once this Easter business is done and dusted, people will soon be back in the saddle, and then things will move quickly. I was assured by my other treating doctors that the delay between stage one and two would make no difference. Months...yes...but days or weeks...no. Hang in there...Ally.0
-
Hi @Yango I went public the whole way and never had a problem. Same surgeon for each surgery, same BC nurse and great Oncologist. Once I had the biopsy, mammogram and U/S ( same day ) it was a month before I saw the surgeon and he had all the results then needed to go ahead with surgery. Things then moved quite fast from then on. It was 2 weeks until surgery. They then had to widen safety margins so a further surgery 3 weeks after that.( had to heal first from first surgery ) Once results came back from pathology of that surgery then changed things for me. I then had an MRI , bone scan, cat scan then chemo and then back to surgery after all of that for MX. I can honestly say waiting to see surgeon is one of the hardest parts but once you see him or her then things will progress quickly for you. I know it's crazy but once a plan is sorted for you it comes as a relief as you can just concentrate on what you have to get through. I can imagine you must be really anxious the waiting truly sucks but deep breath and you will have it sorted soon enough. Let us know how you go, we are all here for you. big hugs xo0
-
Thanks all. It's been very useful and reassuring knowing the public system timeline. It does sound like a much slower process than I was expecting. I just thought that once you were diagnosed with cancer, the next day you would be whisked off for treatment! The waiting part and not knowing anything other than I have cancer is very hard as I have googled to much and now think the worst. Every little twinge in my arm or leg and I think the cancer is there too. Any advice on not over thinking things?0
-
It's hard. Not surprisingly, your diagnosis tends to crowd other things from your mind. Give up googling as a start though! As you have discovered, it rarely does much more than fuel your imagination. Keeping busy at something (work, gardening, clearing cupboards, a hobby) can help. I found that remembering that stress helps absolutely nothing made it slightly easier not to go there. I'm not a very patient person but patience is a virtue in this game - there's a lot of waiting, a lot of sucking and seeing, a lot of uncertainties. Patience and calm are to things to try for - we all mostly fail, at least we can't do them all the time, but it's still worth the practice. Keep your eye on the end game (cancer free) rather than on the process. Best wishes.2
-
Hi there @Yango...the waiting is the hardest. Being told not to google stuff, in my view, is like telling a five year old that the sweeties or lollies in the drawer, (in easy reach of said child), are not to be eaten. Yeah right. We have all this information literally at our fingertips, and when we feel we're left in a void of information, of course, most of us go seeking ourselves. The thing is for you to look on reputable sites, and to know which are to be trusted. I'm sure that on your electronic ether travels thus far, you've come to realise the complexity of it all. There are many types and sub types of each one, and the treatment differs for each person. Age, menopausal status, general health or co existing medical conditions all come into play when deciding treatment and sequence of treatment. Unfortunately, until the type, grade and so on are known, there is nothing to gain by you scaring yourself shitless while you wait. By all means, get a general overview of the common side effects of chemo, (not to say you will even need it), and get tips on what you need for hospital when you have surgery. Remember this may be a lumpectomy or mastectomy, both ends of the surgical scale. Ditto radiotherapy (I didn't have this due to other medical condition). This may give you some feeling of gaining positive information before the wave hits. Once treatment starts, you just have to keep on your board and ride that wave to the end. It's quite normal to now fear each and every pain or twinge, as your own existentional bell has been rung with this diagnosis. Headache...it's in my brain (no, you've been reading in bad light). Pain in your tummy...oh god it's spread (no, too many Easter Eggs) and so on. Try to find some activity that doesn't require too much concentration (or a lot of concentration), whichever technique works for you. My thing is knitting. The repetitive motions and the growing garment keep my hands busy whilst my brain is in neutral. Your thing may be crosswords, or soduku or gardening, or walking or good old netflix. It's very hard, this waiting, as you feel the sword of Damocles hanging over you. I used to have this picture of all my cancer cells splitting and dividing, multiplying and travelling all over my body, whilst waiting for something, anything to happen. I felt that the medicos seemed to have no sense or urgency in this matter...."I have cancer for f**k sake and these people are dithering around"!!!! They're not dithering, they're getting all their ducks in a row before they load their cancer guns and get cracking Peace and hugs...Ally.3
-
Hello @Yango
I just wanna share my timeline. My GP sent a referral to RBWH on the 17th of April. Meantime,I did some blood test and mammogram,second US and biopsy( Right breast and lymph node) This morning I got a phone call from cancer care nurse at royal brisbane. She said the delay is all because of Holiday. Now I have got an appointment 8/5. Hope you have a schedule soon.0 -
Hi Yango,
Can certainly sympathise with what you are going through. This happened to me last August. I went through Breastscreen initially, before referral to our local University Hospital, as a public patient. In my case I was given what turned out to be false information by Breastscreen, and have lost faith in them as a result. I did secure apologies after the event, but that didn't help at the time. It wasn't until after my surgery, (a Lumpectomy), that I started to receive proper information. So perhaps in light of this, it's better that they don't say anything, until they are sure. However, I do urge you to be proactive about seeking information. It is after all, your body and your right to know. To finish on a more positive note, I have received wonderful care and attention from my marvellous lady Oncologist, and in fact all the staff at the Cancer Centre within the hospital. Mine had metastasized into my bones, but I am on a new treatment, which is tablets, and a monthly injection, and six months down the treatment path, I am stable, and leading my life as normal. Please try to look on the bright side, and I have my fingers crossed that you will soon be told what is proposed, and be on the path to your treatment. The timeline for me was about four weeks after my initial diagnosis before seeing a surgeon. A further four weeks until my surgery, then a first appointment with my Oncologist about two weeks later, and an almost instant beginning of my treatment. Everyone is different, but the statistics for a good outcome are very reassuring nowadays. I wish you all the best, and I hope we'll hear more about your "journey" along the way.1 -
Hi Yango
I can't even comprehend what you and all the others have gone through with the delays.
I new within 7 days of finding original lump, I had my results.
My GP, on my initial appointment,, had me booked in the next day for Mammogram and ultrasound and within 2 hours of me walking out of scan place my GP phoned me and said he was concerned with the findings and he had booked with Radioologist the next day for core tests, I knew then it was bad for GP's never make appointments for you.
I had my results 6 days later and again my GP made my appointment with the surgeon for that same day, I never once had any delay except for the surgery date and that was simply due to being Christams, but I was on the surgeons list for his first day back.
But my advice to you would be find a private practicing surgeon at your Private Hospital (If there is one near you) who operates out of the Public Hospital. You should be seen a.s.a.p. and your scans will happen immediately in the Private Hospital via the receptionist, mine were covered 100% under Medicare.
Your only expense is the consult fees for the surgeon, in his rooms, which are partialy claimable from Medicare.
The same goes for the Oncologist, I see mine at her rooms but all my treatment is done at the Public Hospital.
I don't know if I have a guardian angel watching over me but as I said my experience has been nothing short of amazing.
I wish you all the best and hope your experience becomes more tolerable for you, which ever way you decide to go with treatment etc1
