Well three months ago after my oncology appt,I got no written report. I was going to travel so asked the secretary who said nothing had been logged and he was out of the country. This time,after having three months to organise a scan,I had it just a few days before my appointment and now they haven't got results. So consultant wants to give me a months meds while we wait. I got very cross and told him, I'd been advised to get on with my life and therefore I had plans around the three monthly that I usually have . And I wouldn't be around to collect pills next month! Besides, waiting a month for scan results seems rather cruel to me!
And why do they seem so surprised when I tell them I'm fit and well and leading a full life?
I'm getting a bit disillusioned with East Surrey since my original oncologist left.
Just needed to share my feelings with sympathetic people!
Written by
Beryl71
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Jeez! What is with these people? Don't they get it that patients have lives too? Computers spit out the results of most tests/scans as they are being done and it only takes one doctor to look at the printout, draw a conclusion and publish the result. Then, the oncologist obviously has it within his or her power to move ahead swiftly or let the patient dangle with worries and fears of the unknown results. Xxxx that!
It’s getting worse in UK. Shortage of oncologists and radiographers nationally apparently . After my recent experience Ibrance failing and having COVID complications if I had not of taken things into my own hands my scan would be mid August and reported up to 9 weeks later. I knew Ibrance wasn’t working and said so to the acute nurse who took over the oncology stable people I insisted on an urgent CT and a referral back to my original oncologist for urgent review. Within the last week, I had an MRI the same day as speaking to oncologist face to face, CT report, back on new chemo meds last week and a phone call to get a one session of radiotherapy to sacrum which is next week. Imagine if I had just gone along with flow, the nurse was going to put me back on Ibrance assuming it was effects of COVID only.Scary thoughts
I so get what you are writing about.. The system seems to be faltering on so many levels and we are required to keep tabs on everything. Self advocacy is one thing but the expectations on us patients are too high: To stay on top of office procedures and records being sent in a timely manner. I used to fault myself and now I know I am doing the best advocacy that I can , but the system is faltering.. We do the best we can and we are doing a seemingly impossible task well.. a task that shouldn't be ours.
This does seem cruel and I am dumbfounded when I hear that so many of you have to wait for scan results. I go in for my scans in the pm (CT of chest, abdomen and pelvis and full body bone scan) and the results are available online in MyChart that evening and then I meet with my Onc the next day for my bloodwork (results available in 30 mins) and then we sit down together to go over everything . Then I have physical exam and my Faslodex shots. I know everything before I leave to go home on day 2. Don’t know anything about how all this works elsewhere but if Duke Cancer Center can do it, why can’t other places….boggles the mind! Anyone else have positive experiences with scan results to share?
I'm afraid UK NHS is different. I have a couple of weeks over which I have blood tests , onc appt and zolondronic acid treatment, plus I have to collect my meds from a pharmacy. If I have scans that's yet another appointment. I have blood tests two weeks running, one for the onc and one for the zolodronic acid infusions. So all in all I can have a lot of running around to different venues. Fortunately the onc appt is usually a phone call but that has its disadvantages too. Sometimes I struggle to hear what they're telling me and have to get the breast care nurse to check later. At least I feel fit and healthy and can cope. X
I really don't understand why the UK is so different from Saskatchewan! My understanding is that you have both private and socialized medicine so, perhaps, the mixture is the reason?? All medicine in Canada is socialized medicine (the rich go south if they wish special treatment).
My next CT scan is in September (three months after the June CT scan). I'll read the results on Mysaskhealthrecord that day (likely within two hours), and discuss them by telephone with my oncologist the following week. Meanwhile, I go for blood work once a month, and read those results on my health record an hour later. If I have any issues (I never do), I can simply 'phone my local cancer center, and ask to speak to the oncall nurse on duty, or leave a message for my oncologist to call me.
The system in Ontario is called mycharts it is great for blood work results but no reports / tests results can be released until after a dr has read and released them . It can be up to 21 days before they are released. Usually I call my family dr and get them to email me a copy a day or two after the test . My anxiety is too much for me & still gets so exhausting even after 5.5 years of this every 3 months .you would think I relax a bit .
The Ontario system seems unnecessarily cumbersome! The Saskatchewan system names the "ordering physician" (usually my oncologist but it has been my GP). No one signs the lab reports; the scan reports are electronically signed by the radiologist.
After I log into "My Sask Health Record", I see a column titled: Recently Updated Data which is explained as "Recently Updated Data displays the date new or updated information was uploaded to your MySaskHealthRecord".
I then click on the relevant item in the list: "Jul 4, 2022 11:49 AM Lab Test Result" or "Jun 28, 2022 12:47 PM Medical Imaging", etc. After the electronic report appears, I am free to print a copy or simply record whatever I want to know.
Nothing could be more straighforward. Perhaps those who run the Ontario system need to be told....
Glad to hear it Colleen. I’m assuming that is the case at the bigger Cancer centers like Dana Farber, MD Anderson, John Hopkins, etc. Relatively speaking it is worth the drive, 6 hrs RT each month to go to Duke with an overnight stay on scan months to get everything wrapped up and know where I stand.
A friend of mine with stage 4 bowel ca was told that her most recent scan showed progression so she was advised to change her treatment. She requested copies of the scan and the previous one and did not agree with the radiographers assessment so she queried it with the onc and he agreed that the most recent scan was, in fact, stable! Very concerning.
How, in the days when we can write and send an email within minutes, are we waiting weeks for a letter following our appointment?!? It beggers belief.
I believe whoever sees a patient should not see the next one till they're written up a note from the appointment. Only then should the consultation be considered complete!
Equally you're right, it is cruel to make patients wait a month for scan reports.
I will be raisng these points with the Commission in my area, SW.
Last but not least, good for you for standing your ground and challenging the clinical practices.
Hi Had a similar experience & my oncologist changed without any notice. After my last scan, I was asked by new oncologist whether I wanted to have the see him in 3 or 6 months since I am in palliative care. At the time I naively thought he would call me & dicuss my results. With the cancer having spread to spine, pelvis, sternum & ribs, my anxiety levels shot up. After 3 months, I received a call from an acting consultant who discussed my results with me. I had to explain myself all over again. It seemed that the person at the other end had not read my file. I feel that palliative care to the NHS, has taken on new meaning. This is not quality of life when we get passed on from one oncologist to another. I suppose they are so inundated with cancer patients that they are becoming apathetic to us as humans. II feel like my dignity is being stripped off me
I have complaints about the "system" I am dealing with, and though they are different than yours, I sure understand! (and I suspect that alot of patients who don't/can't advocate for themselves pull the survival statistics down quite a bit!). Having advanced cancer and all the things that go along with it should not mean also having to expend alot of time, energy and thinking on this kind of crap! Most of the medical people that I see face to face are great, but it's the bureaucracy that drives me crazy! Problems getting medical records from one health care system to another is a biggie and makes we want to yell and scream. I live in a rural area of the US Midwest and have to drive over an hour each way for most of my medical care. And that wearsme out! My first onc was wonderful--old, experienced, wise, direct, and area medical folks did not want to get her angry at them as she'd call them directly and tell them what they needed to do! She was in her 70's and was forced to retire without a chance to say goodbye to her patients. That made transferring to another onc alot more complicated and made it harder for me to trust the next one. That was 3 or 4 years ago We sure don't always get the warm caring relationships we had with doctors when I was growing up!
I had a similar experience when we first moved to NC to retire 5 yrs ago from N. VA. Where, in retrospect I had the dream team. I had been in remission from my orig BC for 5 years but thought I should find an Onc here to monitor things in case “the other shoe dropped”. I was still going back to my first Onc every 6 mos. in VA for med management. Got recommendations and found someone I immediately clicked with who proceeded to retire a year later.😞 Got my MBC diagnosis a year after that and I got passed on to a newbie and things went rapidly down hill. I could write a book. Scheduled consult at Duke (3 hrs away) and everything fell into place. The level of care and speed of results, etc has been the best I’ve had. I wish all of us had this as we’re going through enough living with MBC.
Absolutely ridiculous! :(You need to bother them until you get the results. I give my family doctor a heads up when I’m getting my scan done and she calls me 2 days later with the results. Much better than waiting for my next onc appointment which is weeks later! Stand up for your rights!
I know how you feel . I believe the professionals become so desensitized to our situation . We are a chart number. Vent away ! I am sure others feel our pain.
I personally do not think it is the doctor's fault. I am in NY and since Covid, they have lost alot of staff, good staff that did not want to get vaccinated. My onco always seems overly stressed. I see what was a 10 minute wait to sign up at reception to almost a 30 minute wait. She told me once that she is expected to see a new patient every 12 minutes. Plus, every time I see my onco, it is like she is meeting me again for the first time. Although now that it spread to my liver, I am going every two weeks bc of my old treatment being taken away and now am on tamoxifen and affinitor. two weeks ago, I had my bloodwork, then waited to meet with my onco for one hour, only to have a pa come out and tell me that she said to let me know that my numbers are rising and she will see me in two weeks. That means this Thursday. I was angry but not really at my doctor. For us it is all personal but I think, in my case, she is just overwhelmed.
Well ladies. It did the trick. I got a call today to say there were no significal changes, lymph nodes in chest marginally increased. But three more months meds! Think I'll ask if next appointment can be face to face as by then it will be a year since my last face to face! X
I'm so glad to hear that! X2 really! Glad you get to keep on same meds glad you you got a response from them! Hope you can do something special to celebrate!
Your story reminds me, "The squeaky wheel gets the grease". I'm sure your getting "very cross" helped. Could you advocate for a notification of results system such as I described above ("My Sask Health Record")?
I'm going to write to the Patient Liaison Service as some while ago they said they were going to make records accessible online. I sometimes feel like a troublemaker, but then I've always asked awkward questions since I was a child!🤣
That’s terrible! I am so sorry, I would not take pills just to tide me over… till they had time to diagnose me either!! ALL medications have side effects! Some effects are worse than what you have! Maybe another doctor?
Wow. Sometimes the NHS has its drawbacks. I am in NY and I get a copy of my CT scan report 24 hours after I have my scan and usually I then have an appt. with my onco set up two days later. So now I have an idea of what is going on before I meet with her. I just read the summary part which is in layman's terms. My onco does not even understand the radiology language.
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