Apologies for starting a new thread, but I couldn’t work out how to post on my old thread!
Anyway so I had my biopsy last Monday and was told I would get a date in the next 2 weeks for a f2f appointment to get the results. I was hoping to get a date before the long Easter Bank holiday weekend as I know I am not going to be able to relax over those 4 days!
I have been checking on the NHS app and my Doctors app hoping to see the notes and report from the US and mammogram I had last Monday, but nothing there yet.
My understanding from the research I have done is that these reports should be uploaded to the portal at least within a week, Does anyone else have any experience with this?
Also if I ring the BCN nurses at the hospital, will I be able to get them to email the reports over to me? I know the results from the biopsy probably won’t be in yet, but I should be able to have access to the US reports etc,
When I saw the consultant after my biopsy she did say that it looked worrying but it was good that my lymph nodes were showing as clear.
I know some people may say whether seeing the reports from the scans would make me feel any better or worse. I am one of those people though who likes to be prepared.
Does anyone know who the best person would be to speak to about accessing my scan reports?
I made a phone appointment with Breast care nurse who was happy to look at my notes and explain my biopsy results to me.
If you want the written report you can speak to the Breast care secretary and they can send you the secure link for that.
You send documentation online to prove your identity over the secure link as obviously they dont want to send sensitive records out without proof of that.
And they may want to speak to you first so they can explain any follow up you might need and make sure you are not left reading a report without context of that information for you.
I am not sure if they send actual scans on that or just the written radiology report so that is better to ask one of the BCN on here as they will give you the correct information and you could ask that on the ask our nurses section of the forum.
I think it can take up to a month to get your records that way.
I have never got biopsy results through my patient portal App .
Unfortunately there seems to be great variability by hospital trust on what is posted to the NHS app. The only thing I get is copies of the letters my consultant sends to my GP, because the GP practice loads them up. I have metastatic cancer so am in a regular scanning regime and have never received results other than verbally in the oncology appointment that follows each scan. A summary of what was said is then included in the letter they send to my GP.
Do you have mycare or MyChart access at your hospital? My blood test results show up in 1-2 days but imagining takes 6 weeks and biopsy results have been mixed - I’ve generally phoned the nurses to request the reports. Personally, I like to have all the information asap and having a doctor give me bad news in person would possibly be worse than reading it in the privacy of my home so I can understand you wanting to get your report. I also find the lab reports are more detailed than the baby version I get told to my face and I want to know the full picture. Hope you get some good news soon!
Thank you for taking the time to reply to my rambling
I get what you are saying about the biopsy results and I know they want to tell me those face to face. Guess I just would like to know what the radiologist wrote in his report after the ultrasound.
I gave my GP a ring this morning to ask a few questions and he looked at something on the hospital site which I don’t have access to. He said that it just says that it was a 2 1/2cm ill defined mass with no lymph node involvement.
I’m encouraged by the no lymph node involvement and am hanging onto that
Anyway I am going to call the BCN at the hospital later as the thought of 4 more days to get through has really heightened my anxiety levels.
Me again. I am definitely someone who needs to know upfront so I can prepare. I contacted the BCN nurse again on Thursday but no results have come in yet, so still waiting for my appointment to get results.
I have been looking on the NHS app regularly to see if anything gets uploaded from my consultation 2 weeks ago when I had my biopsy. Hadn’t expected to see anything today, with it being a Saturday, but noticed the below letter from the clinic had been uploaded. There seems to be a good difference in measurements of lump between the mammogram and ultrasound. Does anyone know which is more likely to be accurate? As for them saying they had made me aware of their suspicions, they just said it looked worrying. I kind of expected the letter to say what the likelihood of cancer is etc. I know I need to try and not read too much into it, just want to prepare myself:
LETTER:
On examining you today I could feel an indeterminate to suspicious 3 cm lump in the
lower outer part of your right breast. Bilateral mammograms were performed today and
identified a 37mm suspicious mass corresponding to the palpable lump. On ultrasound
scan it measured 23. 3 mm. Ultrasound guided core biopsies have been performed today
and a Hydroma clip has been inserted. There were normal looking lymph nodes in your
right armpit.
I have made you aware of our suspicions. I will arrange for you to be seen in the breast
clinic in around 3 weeks’ time. My colleague will be able to inform you of the biopsy results
I think it is totally legitamate to be given results in a way you feel comfortable so I hear you!
At least now you have read the letter and have an idea of what they are thinking.
Obviously they cant know until the results are back for definite what is going on but I guess they thought in their mind saying the word ‘worrying’ would be enough to sort of potentially prepare you without being too alarming . Its so tricky I guess to know how much detail to give to the patient . As they dont want to upset a patient if the area of concern is actually benign .
But as another lady on here said it can feel a bit paternalistic.
I think maybe chat to your BCN what you would like communication wise.
With shared decision making the clinical staff are happy to support the patient in a way that is helpful to you.
When I had my lumpectomy I communicated to the team who I had not met before that I have a well established meditation/ daily spiritual practice and that it would help me feel calmer in surgery if I could do that. So they played meditation music and gave me a warm blanket and were a little quieter in the room. They also put on my notes that I prefer not to have trainee students observing procedures I was having done. ( The student was lovely but being observed made me anxious) This helped me and helped the clinical team know how to emotionally support me.
They are very happy to do that as it makes their job easier.
Thinking if you while you wait for results and hoping for good results.
