After being told I needed an urgent brain scan at the start of April because of a pain in the side of my head, I went and had a ct scan 2 weeks ago. They couldn't canulate me and without any explanation I got an appointment for a MRI scan on Friday evening. They did did a ct scan without contrast 2 weeks ago so I'm hoping that the MRI is because the scan didn't work and not because they found something, when I rang the hospital no one could tell me.
I now have 2 weeks to wait for the scan to be read, which is practically July. 3 months for an urgent brain scan. Personally I think it's a problem with my neck but the osteopath won't see me until I've had the results of the scan and the gp won't prescribe painkillers or physio for the same reason.
I am usually pretty positive but the constant headache is starting to get me down and to start with paracetamol took the edge off it, it's now not making much difference.
I'm more frustrated because the nurse told me that the hospital where I was supposed to gave the ct scan have a reputation for failing to canulate patients and so scans have to be done at the hospital I had my MRI. What a waste of resources!
Sorry, thought I'd have a bit of a rant!
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Julie2233
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2 weeks for an urgent brain scan to be read? Or for you to be given results, or both? That is really unacceptable, especially since you are in intractable pain. Can your doctor get on them? It sounds like a cluster fk from the start. I’m sorry you have to go thru the mental and physical anguish of all this because people won’t do their jobs properly or on a timely basis. I’d call your doctor and tell him/her you can’t tolerate the pain. I wouldn’t be as patient as you. What if it were an aneurysm or some such scary thing? You have enough to deal with you shouldn’t be put thru this.
So agree that this is unacceptable for you to have to wait this long!! Please keep on these docs they don't seem to be very compassionate to me. Wishing you well and getting some answers soon.
The osteopath directed me to a diagnosis website run by a cluster headache charity, after answering the questions it suggested that it was an exertion headache which unfortunately have the same symptoms as a brain tumour and advised a brain scan. So that wasn't entirely reasurring.
i see the oncologist about the lump in my breast tomorrow so I will ask him to see if he can clarify the situation for me
Julie, I am sure you are a very nice, calm and thoughtful person. I try to be, but in this case I would not be so patient and I would tell the doc this is unbearable, considering you are Stage 4 you need to know so the stress and pain doesn't send you over the edge. Good luck, keep us posted.
A few tears won't hurt. You'll probably be pretty upset. We don't ask for much. For God sakes, look what we are dealing with. This is routine for them, and sometimes healthcare providers forget we are people, and not numbers or diseases walking around.
I had to move to a different hospital in December and I just get the impression that everyone is too busy to care about what happens to me. Even the admin staff are rude and abrupt.
I am so sorry you are going through this now. I would not be nice about it- what if it is said as emergency? Do you have emergency rooms there in hospitals? Over here if we go to ER with bad headache for days they would throw us into cat scan then mri. I would be a crazy person making them dread my calls or visits.
Yes both my gp and oncologist told me that if I got more symptoms to go to ER and demand a scan and I probably should have done that but it just felt wrong 🙂 I really don't like making a fuss
You are in pain. You should not have to wait weeks for an issue to be addressed. Too often we are not heard unless we get feisty and firm. It’s not making a fuss- you have a diagnosis that warrants any pain lasting more than few days needs to be investigated. I wish I could take you there and make sure you were taken care of right away!!!💕
I am usually so good at standing my corner but I'm struggling with this headache to keep my thoughts straight and everytime I contact the hospital I get fobbed off by admin staff. I'm seeing the oncologist tomorrow and I'm hoping it will be one of his registrars, my oncologist is rude and unhelpful. Sorry I am having a real moan tonight, just feeling a bit low and sorry for myself, which isn't me.
It is affecting you in bad way. Please go to ER. You are so allowed to moan. Scream, kick and whatever else we all do at one time or another. I am concerned about how the pain is affecting you. If your oncologist is rude more of a reason to go to ER. Just to make sure nothing serious.💕
I agree with Julie! A scan in the ER is read immediately! It's criminal you have to wait this long. Sending positive thoughts for a "it's nothing to worry about" result!!! Hugs!
not sure why it takes so long to read results. mine are read and dictated within 24 hours. I can request a copy the next day. no waiting around for doc.
Thanks Sandra 🙂 I've been around but so busy at work and struggling with this constant headache. My job involves having a good memory and this headache affects that. I've been gradually getting more stressed about everything, it's been one step forward and 2 back for that last couple of months
Sometimes it’s difficult for them to get a cannula into my hand for CT scans so I complained and asked for a heat pad and for the needle to go in my good vein in the anticubital fossa..where the elbow bends and where routine bloods are taken..no problems since then...if I hadn’t made a fuss it would have been the same scenario..stabbed several times and horrendous raises
None of us like to be thought of as ‘difficult ‘ but I’m afraid sometimes you just have to say what you think
As for pain relief...this should be a priority ...I know from my own experience of bone/fracture pain...I can’t imagine how you’re managing to go to work
Tell your oncologist how you feel and demand some decent painkillers...I find cocodamol with ibuprofen works well for me...if I try and be brave and just take paracetamol I can’t cope so they do help and make life bearable
I work in local government and it's my job to attend council meetings and ensure that decisions are legally taken, and I also write the minutes. I'm the independent witness. In effect I am the only person in the room who legally must pay attention at all times and it's been quite hard to do with this constant pain.
I have small shallow veins which move away from needles and I know I'm a problem, it is frustrating. They usually use my hand. Recently they have been able to draw blood from the inside of my elbow and the nurse canulated me there before my MRI but that's the first time a vein has been useable there for a couple of years. I drank 4 Ltrs of water before my MRI and had the heated car seat on 🙂
Why not buy some of those hand warmer things that golfers put in their gloves..my hubby has them and they stay hot for hours...you could put one in a glove or wrap round elbow area depending where you’re being cannulated..I thought of doing that myself
My oncologist is my lifeline. I could not go to someone who was rude to me. What gives that sob the right to be rude to you? Maybe he’s overworked, but he needs a reality check. Do u have someone close to you who can be assertive and tell this doctor that it’s bad enough you have this awful disease, it’s so much worse when the one person who is your go to person is unapproachable and hostile. Can you switch? How about going to the head of the department and telling them this relationship is not healthy for you? Do you for one minute think this sob would let someone treat his wife or mother like this? You don’t have to be submissive because he went to med school. A bad day here or there is one thing. A personality disorder is another. I’m so angry for you.
The first time I saw him I thought he was rude because I was calling him out about a serious error one of junior registrars had made relating to my treatment. I'd also just transferred back to the NHS from one of his colleagues in the private sector. The second time I saw him he was even worse. Then I was at an event with some of his private patients and they told me he was just as rude to them. And the nurse who did my last faslodex injections was telling me that her mother was one of his patients and the only time he smiled at her was when he discharged her, but she thought it might have been indigestion!
I have thought of moving again, this is my 3rd oncologist and 3rd hospital, but if I go to another hospital there is a chance that I won't be prescribed faslodex and ibrance as many NHS authorities don't approve it despite it being licensed.
I try to be nice though I can be very assertive, but these people are in such a position of power, they are really making life and death decisions about us, and there are so many incompetent oncologists sometimes it's better the devil you know.
In the US there is a lot of talk of having the government take over healthcare and having one, universal healthcare. After listening to the stories on this board, it sounds like a very bad idea. True, there are problems with access to healthcare here and people not being covered because of expense. But we have had Ibrance for years. And there is no question you would get faslodex if that is your best option. I fear that a national plan would regulate treatments and access to catastrophic treatments. I feel for you in having to deal with these NHS authorities. How can they deny you drugs that can save or extend your lives? And you are caught up in a system where you have to tolerate bad doctors and bad attitudes because at least you're getting the drugs you need with this one. Be strong, fight for what you're entitled to. To me, that is whatever will give you quality of life. No government should stand in the way of that.
I too live in the US and I often tell people about posts I read from other countries when they are pushing National Health care. I get appointments always within a week at most, scans are read same day and communicated to me, and everyone I deal with is super nice. If they were not, I can go anywhere I want. However, I am lucky enough that I can afford insurance.
Agreed. Hopefully they won’t repeal some of the safeguards Obama put in like making insurance companies cover preexisting conditions. I too wonder what will
Happen to me on Medicaid with supplemental insurance, but lots of people do ok. I am lucky to have the money for supplemental plans. It is far from perfect but I can’t imagine being worried if I’d get the drugs I need or the tests I need. The government doesn’t seem to be able to run things well
How are you feeling today? Have you seen your oncologist yet? If things do not improve I would have someone drop you off at A&E and at least then you will be treated and hopefully get the scans you require. You should not have to suffer with a constant headache and the incompetent, rude staff at the hospital. I hear you about being polite, and I am too. But you also need to fight your corner and keep on at them when they are not doing their jobs properly. How would they feel if they were in pain from a persistent headache? Please let us know how you get on, and I hope you get some relief from the pain you have been experiencing.
Much better day today, thanks (below 😊 ) I completely agree about having to stand your ground, I'm usually good at it but a few months of unexplained pain and being tired really knocked my ability to do that.
Totally unacceptable situation. Isn't it bad enough you are dealing with mbc. Waiting for treatment or scan results is torture. Why don't these people understand that?
My heart breaks that you are going through this in pain.
Geeze...The two week wait to find out makes you wonder is it urgent or not. It seems cruel to do that to you. It reminds me of a friend that was in labor at the 9 month mark..., she went to the doc, he says something like....you may have a severely deformed child...but we are going to lunch now, why dont you come back in 2 hours".....can you believe that!!
Anyway, I do hope the best for you, I have a met right ready to dive into my brain..yikes! So I know what you are talking about. Sometimes we think that everything is cancer...but it generally is not.....but still they should not make you wait like that. If the facility is close to your home maybe you can camp out there and let them know you HAVE to know, and be haunting the halls until they tell you! But only if you feel like it, otherwise, find some ease and peace until they will give the final unveiling of your current status. Very best to you dear sister! Michelle
I had a similar experience when expecting my second child. I had a scan at 18 weeks and the radiographer showed me that his intestines appeared to be outside his body. I had a 3 hr wait to see the obstetrician who just said the equipment wasn't very good and we would see what happened when he was born! Months of worry but he was fine, thank goodness. But it always happens to me!!
I would be frustrated too. I just don't understand why it would take so long and especially if it was urgent. I am fortunate in that when I have a scan my oncologist usually has the results within a couple of days and calls me - I don't have to wait for my appt. So to me that is just BS!! These people know what we go through so a little expediency would be in order!!!
My colleague and I had a look at the hospital job sites. all the hospital's within an hour's drive are advertising for radiologists and technicians. We worked out why there are such long waiting lists for scans and interpretation. I live in an absolutely beautiful area but it's not where people with careers want to be.
Julie, I can’t believe what they have put you through and it is totally unacceptable to leave you in pain for so long! I would be raising hell right now and you have every right to do so. The whole thing is total negligence. So sorry, you must be exhausted.
You deserve to have a rant!! 3 months for an urgent scan... laughable!! Contact PALS and make a complaint. If we dont complain in such situations then things never improve.
Julie, I do not understand your doctor, I started having headaches and my doc sent me for a MRI and a pet scan that same week! His office also called with my results within days of the tests ....Thank God it was not mbc just a pinched nerve ...I am so sorry that this is happening to you...Please don't take this kind of treatment you deserve much more...Praying for you!
I am so sorry that you are going thru this! I don't know what to say to you! Once we have this lousy cancer, we filter everything thru the cancer lens and a headache gets scary! I hope it will turn out to be something easily fixed and not related to cancer. Is "retiring" a possibility for you? I'm an Episcopal (Anglican) priest and there was just no way that I could take care of a congregation and take care of myself with cancer so I retired about 7 months after mbc diagnosis, but I have a husband with a dependable income and we are both penny pinchers so that part has been very doable. I hope you get all the support and care you need and that you find your way to peace of mind about your doctors and the care you are getting! I can tell you that as I have gotten older, I have sure been quicker to "fire" doctors that I don't like, usually men who don't treat me like a human being capable of rational thought!
I have thought about it but I love my job and I'm miserable at home. I'm lucky as I don't get too many side effects from the drugs apart from fatigue. Going to work gives me structure and gives me something else to think about. My work is challenging and involves working with a lot of other people which I enjoy. Though I was disappointed when I had to turn down a promotion before Christmas which I would have leapt at 4 years ago, but I had to be sensible, I had to accept that I might be able to do the job but I didn't have the energy to do it well. I can imagine that working as a priest while coping with mbc would be absolutely exhausting.
I live in the back of beyond and there aren't that many choices of oncologist within a reasonable difference. There is one possible alternative but I'm keeping that in reserve. I think I might try a little education first, if I ever get to see him 🙂 But good news about the brain scan (below) 😊
I was feeling so low last night, your good sense and sympathy really helped me find my equilibrium again. I think I got over tired with work and worn down with the worry about the pain. I found out last week that my aunts breast cancer spread to her brain and that was enough to get my imagination going, now please excuse me while I scream -
AAARRRRGGGGHHHH!!!!!
I've seen the oncoligist this afternoon who was runnining an hour late incidentally. Well I say I saw the oncologist, I actually saw the junior who's doing work experience in the department but at least he wasn't rude and dismissive.
He told me that they had had the results from the ct scan for a fortnight! A fortnight! And it showed nothing, pause for sheer relief. Not even bone mets.
The MRI had been ordered as a precautionary measure because I hadn't had the contrast, but although he couldn't completely give me the all clear until those results came through, he was quietly confident that nothing will be found.
Why couldn't they tell me that when I phoned 2 weeks ago?
The other piece of good news is that the office junior couldn't find the breast lump I've spent the last 3 months worrying about, so he doesn't think it can be anything serious but is going to order an ultrasound anyway and if it's thought necessary I'll have a biopsy after the ultrasound. So at least I will know.
And finally they've forgotten to order my 3 month scan (again!) so now I'll have it at the end of July/August instead of the beginning of June. As it's an 8 week waiting list, but that's ok because I know.
But feeling so much better tonight and I'm going away on holiday next week so hopefully that will recharge my batteries.
Thank you again to everyone for your support, it helped so much!
Thank you, my aunts who I lost to this disease were good women and inspirational. They all lived life until they had to stop. There was no treatment back then just sheer will power 🙂
I'm glad you got some good news! I don't know what it is like where you are, but around here there just are not enough oncs so they are pretty busy and they sure do vary alot in how well they get just how stressful it is to be dealing with this!
We have major shortages of all hospital staff. The hospital's even recruited from abroad but all the staff they brought into the country immediately took jobs in London. It's a beautiful place to live but because of the staff shortages putting stress on everyone else no one wants to work here.
Delighted with your news. What a relief it must be to you and your family.
Your oncologist sounds like he is in the wrong job!
Can I ask what area you are in? Scotland was approved for IBRANCE just before England who followed suit in November 2017 and should be available to everyone if suitable for their cancer diagnosis ..
It has been a huge relief and now I can get an appointment with the osteopath and get this pain sorted.
I'm in England, on the Welsh border. NICE approved ibrance for the UK in Nov 2017 and despite its cost most hospitals authorise its prescription, but a lot won't prescribe faslodex which is the cheaper drug than ibrance but a lot more expensive than similar drugs. I don't want to move off faslodex until I have to as it suits me.
Thank you 🙂 My aunts had bc back in the 1980s and 90s. Things were so different then. When it was found to have spread there was no hope just waiting. We still don't have a cure yet but there are increasingly effective drugs and hope. Things have changed so much.
Sorry you have to wait so long for results. After every scan I have I call the place I got scan the next day I give it a full 24 hours so there is time for Dr to get results and tell them Im coming by to pick up copy of written results if they ask me if I spoke to Dr I say yes (which I have a hard time doing because I don’t like to lie but I feel that those are my scans and I have the right to them just have to give Dr 24 hr courtesy of seeing them first I can’t wait until next appointment to get results as we all know we live wondering from scan to scan how well our treatment is doing. I also keep copies of All results in case I want second opinion. But that’s me🤷♀️
Hi Julie, I have just found your posts, for some reason health unlocked had been going into spam! So glad your headaches and worries are beginning to be sorted, what a dreadful time you have had. I saw the oncologist in Shr last week and my scan results are stable. I commented on waiting weeks for results and was told they now outsource reading scans and it will be less of a wait but costly to the NHS. I hope you have a lovely holiday, this b.... weather is getting us all down. Fayx
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