Point of diagnosis
Blondy
Member Posts: 238 ✭
Out of all of the most fantastic care, support and help I've been given over the last 9 months I still find my experience at being told I have cancer bugs me a lot. I had my core biopsy on the Wednesday and went back to the GP on my way home from work on the Friday, as it was the long weekend and results could've been ready either Friday or Monday. I said I was there to see if my results were back. He peered into his computer screen moving his lips silently as he read. Looked at me and said. 'You have cancer'. That was it, nothing, zilch, zero, diddlysquat. Just looked at me. I went home to 5 days of unimaginable hell with my thoughts. I couldn't bring myself to visit Dr Google. Of course, since I have been in a better place, I can see how much online help there is. My point is, that why doesn't the centre my doctor works out of, have a procedure when telling patients the words they dread to hear, they can have some ready information to handover. Numbers with helplines, what the next steps are. Anything of help rather than just let me leave with his last words in my ears. A eekI later I saw a surgeon who gave me a very comprehensive book that covered everything and more. I went home and devoured the information. It's what I needed at the point of diagnosis. I would be interested to know what other people experienced when told of their diagnosis. Were you left hanging? Were you well informed by your doctor at the time? Considering how regular this would happen in a large practise I sometimes think I should write to the centre and enquire if there is in fact a procedure and if not maybe suggest that there was one with helpful pamphlets for clients, so that they didn't have the same experience as me.
0
Comments
-
What a terrible experience @blondy. I got my diagnosis from a consultant and nurse at Breastscreen, who then rang my GP to make an appointment for me. She said she would wait back until I could get there to see me. The nurse at Breastscreen shoved a bag of information at me as I was running out of the door. By the time I got to my GP she had already made an appointment with the surgeon she considered the best for the next afternoon (happy to change it if I wanted to) and then stayed back after her usual working hours until she was certain I was okay to go home. I couldn't have asked for better care. It's awful to hear that others don't get it.0
-
This is an extract from my word doc I kept on my cancer in 2015.
Friday 2nd October, my left breast seems a bit flat near the
top and a vein is showing. It feels more solid and flat in one spot. It seems a
bit odd so I make an appointment for my very first visit to a new Doctor in my
new area.He ordered a blood test (hadn't had one in over 20yrs),
mammogram and ultrasound. While the test centre was at it they also did a
needle biopsy. No anaesthetic just shoved it around like he was making a cheese
omelette. I still have the bruise over two weeks later. I thought this isn't
too good but being breast cancer awareness month and the tests, all being free,
I thought go for it, you won’t be getting me in here again!I saw the doc a week later Friday 9th October for the test
results. He slammed me with, it is malignant breast cancer. That doesn't sound
good, that word malignant, I am not up on any medical terms at all. I hardly
even take an aspirin!The only good news the doctor said is a part of the blood
Tests ordered CT scan of chest, pelvis, and stomach
test says sed test is low. The Dr seemed happy with that bit. He asked am I
taking any medication. I said no, apart from the contraceptive pill I have been
on for most of my life. He said get off it now; the cancer is feeding off of
it.
area and few days after that bones scan. The doc said it’s to make sure there's
no other nasty cancers lurking about. I staggered out of the office in a fog,
armed to the teeth with more tests to get done.
0 -
Thankfully my niece is a Dr and on face book so we chatted a lot and she explained a lot to me. She followed along with me during my treatment. She was an angel.2
-
@Blondy. That’s bloody awful. I think I have told u of something horrible my surgeon did later down the track but the initial diagnosis was again just before a long weekend and his receptionist rang me to make an appointment for after the weekend and as I was freaking out asked her to get him to call me. Called me and told me the results had com back as cancer. Not the most ideal way to find out but at least I didn’t freak out all weekend not knowing.1
-
Gosh, @Blondy .... that's a shocker. You would think that GPs/Specialists would have some sort of lessons on the protocol of delivering bad news ..... surely it can't be THAT hard to show a bit of empathy - altho in a funny way, I guess they also need to protect their own mental health by not taking everyone's problems home wth them .... by getting 'too close' to their patients.
After my biopsy at the end of Dec, I knew the results would be back in the 1st week of Jan - so I booked an appt with my GP 'just in case' I 'got the call'. (I find that if the Dr's surgery calls you to come in - it is usually NOT a good sign!!) SO ... I was out in my kayak, fishing & 'got the call' to book an appointment - and I replied, it is already booked! (LOL They hadn't checked!) 2 days later - as I entered my GPs office, I motioned thumb up or thumb down - and she gave the thumb down & gave me a hug & we started on my game plan. From memory - I replied FUCK!!!
Back in 2010 when my husband was diagnosed with stomach cancer - his specialist had already told me immediately after his uppie/downie that there was a growth on his pylorus & it didn't look good (hubby was still sedated so didn't remember being told) ..... so I already had a fair idea that it was cancer. Our GP then rang us at home (out of hours) to tell me that it looked bad & we needed to work on getting his weight up as he was going to be having major surgery & an extended period of not eating & needed all the 'condition' that he could - to survive the surgery & she took an amazing interest in hubby's whole cancer period, both pre and post surgery etc. He is currently 8 years cancer free.
We've been very lucky in our choice of GPs in recent years! My GP found my lumps 'by accident' when I went in for a pap smear (and they were only small - about 1cm each in the 'broccoli' - so even harder to 'feel' than if in other breast tissue.) My surgeon praised her 'wonderful fingers' for having picked them up so early, as it has been to my advantage, ever since, by being picked up so early.2 -
That's awful Blondy, you'd think they'd take more care. My gp of about 30 years told me. I already kinda knew because I'd got the call to come in as soon as possible, but she skirted around the subject and I could tell she really didn't want to say it. I think she was more upset than me!1
-
The surgeon who took my lump out, after a vigorous and protracted argument about whether it was necessary ('You will end up a scar, it will not be cancer') told me. The 5:00 pm appointment time was a dead give away anyway. Large invasive lobular tumour. I sacked him twenty minutes later when he flatly refused to do a double mastectomy as "I will not remove a healthy breast." Idiot.
Off to the GP who brightly says "Good news then!" I was gob smacked--'You think cancer is good news?" He got all huffy and tells me "You don't have cancer". "Yes I do" "No you don't" "Read the fucking report!" "Oh, sorry. I misinterpreted that"
By this stage I'm convinced that if the cancer didn't kill me, it would be no thanks to these imbeciles. And so it has gone on. I'm now blessed with a decent GP who adopted me when I kicked up a stink about the others I'd seen in that practice and I have some confidence in the current oncologist, but it has taken over a decade, 2 cancer episodes and countless 'specialists' to get to this point.
1 -
Hello @Blondy. I had a similar experience as yours only mine was with a large public hospital breast clinic. I am a remote area woman. I live in the Kimberely region of WA.
I had a routine mammogram screening (my 9th since turning 50) at the mobile breastscreen van in early June 2017. Not a care in the world. After all the others were fine. Did not hear anything for 21 days then came the phone call asking for me to return to the breastscreen mobile van the next morning. Was told by the mammographer that there was a suspicious area that needed more screens and that it was not there at the last screening. The next day I received a phone call from Breastscreen WA that it was suspicious for cancer and I needed to be in Perth for a core biopsy. Took 7 days to organise flights and accommodation. I was not allowed a carer / escort to come with me under the WA PATS scheme as at this stage it was diagnostic not treatment. We could not afford an airfare for my husband so I had to go alone.
Core biopsy done on June 28 2017 with my world falling apart on June 29. Breast physician just said "you have cancer, it is very aggressive and do you have private insurance. No, well you will be a public patient."
No information, no counselling, no written info. Just "we will make an appointment for you to see a surgeon sometime in the next 2 weeks". I was alone.
I do not remember walking back to the hotel. I was stunned, in shock and overwhelmed. I do remember sitting on the hotel bed and crying. I do not remember much about the flight home 2 days later. There was no available counselling in my home town. My gp did her best, however I was very much left to muddle through on my own. I was not allocated a breast care nurse.
2 weeks later my husband and I flew down for the surgeon's appointment. This time I was allowed a carer / escort. We were just told by the surgeon "you need surgery, you have no choice, your cancer is aggressive and surgery will be in 2 weeks time." Again no breast care nurse, no counselling, no help. Flew home after 2 days still stunned and shocked.
2 weeks later (end July) flew back to Perth for surgery. Still no breast care nurse or offers of counselling.
Flew home 2 weeks after surgery. Did 3 return trips, each of 4,600 kms to Perth in 6 weeks. Exhausting and tiring. All in all we were offered no help, no advice just left hanging, for us to manage as best we could. Still no breast care nurse. I managed to get 5 telephone counselling sessions each of half an hour in the weeks after arriving home.
I have received more support and info from BCNA than from any of the so called experts. I do wish I had stumbled on this forum much earlier.
In the follow up clinic visits the only advice that I have received from the "experts" is " to receive better care, you need to consider moving to Perth". A most unlikely scenario.
I cannot help but think that my case was a situation of - older woman, very remote, out of sight, out of mind. Or perhaps I was expecting too much.
What could have been done differently? Staff the clinics adequately. Find out where remote women live, what services they do or don't have. Find out about their travel and accommodation issues. Find out if they have family available near their treatment centre or are they alone. And most of all allocate a dedicated rural and remote breast care nurse.
This is the first time I have shared my story. It is still too raw; too overwhelming and very traumatic. And there are times when I feel that I am just marking time - waiting for clinic visits, waiting for Mr Cancer to come back.
1 -
Gawd, Annie!
You have to wonder what would have happened if you had thrown yourself to the floor and had an attack of the vapours. Would the whole lot of them have just stepped over you or maybe someone may have pulled their head out of their arse and wondered if every woman who lives in remote territory is as hard boiled as legend would have it, or if you are a human being who might be in need of support.
1 -
Annie C @Zoffiel hoe bloody awful with u both. Do these “professionals” realise they are dealing with real people that have actual feelings and are absolutely terrified?? Bunch of insensitive dickwads.1
-
Thank you so much for your interesting replies, sharing both the good and the not so good experiences. I have just read Annie C's reply and honestly, doesn't her story go to your heart. Annie C I wish I could give you a big hug. Your story certainly puts things into perspective. I didn't see a BCN until the day after surgery. She has a huge geographical area to cover and they can only do so much but the McGrath Foundation girls are Angels. There must be many like you Annie C in remote areas suffering a myriad of illnesses facing the same problems. There does seem to be a gap that people can fall into at the time of diagnosis. But for people like Annie C couldn't there be, or maybe there are in some places, accommodation in the city for people from remote areas. A bit like a Ronald McDonald house. Thank you Annie C for sharing your experience, it was very brave of you. Mr Cancer does not have to come back. True that it's possible, but our lives would be a misery if we waited for it. Hopefully you can get comfort and inspiration from this forum. There are so many helpful topics. There are maybe other more knowledgeable people on this forum that may be able to help you find support in your area. Maybe you could start a support group yourself for your area. Who knows. Even just meeting for a regular morning tea could give much needed support. I wish everyone who answered1
-
Zoffiel. I can't believe I'm reading stories like yours and some others. Waaaaaa. The time when you need the MOST support from the medical world is in the beginning. Luckily I saw a surgeon a week after diagnosis and went to staging appointments and I felt like I was on my journey out of this hell hole. After that I have no complaints. It's in the beginning where there has been, and will continue to be, for some, unpleasant experiences.0
-
@Blondy. Thankyou for your inspirational and motivational support. And your virtual hugs are so very much welcomed.
I am now in a better place but I have my days as do we all.
I am fortunate that I now qualify for the WA Cancer Council accommodation centre, but at the prediagnosis stage I was not elegible. Only at confirmed stage. Also you have to be self caring.
Only now have I been granted a carer / escort status. I would have loved that status in June of last year. However I managed - sort of.
Given my visual disability, low light and night times are problematic. I certainly turned a few heads in June of last year while stumbling down the footpath to the little cafe down from the hotel where I was staying, at night, unable to see clearly where I was going, only to trip over a shop step. After I picked myself up, trying desparetly not to cry (again) I looked up to see that the shop sign read (name of business) Wine Shop!!!!!
@Zoffiel there were many times when I truley wished I could have given in and had an attack of the vapours and taken to my bed! Somehow I think that the a....holes would have probably called security and had me chucked out given their no tolerance policy.1
