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Awaiting diagnosis

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Re: Awaiting diagnosis

Thank you Shi for your reply.. I will at some point write to the team with my feedback once I am done with this journey. Being part of the healthcare family I understand how important is to  receive feedback good or bad as in turn this improves care for future patients but at this time I just need to sort myself out. I will investigate genetic testing even if I have to do it privately as I never ever ever again want to go through this emotions again.. this doctor said if my "lumpectomy" (can't remember a proper name for this procedure as I am having it done by new non-surgical method using scans?? I am not sure how they will remove 1.8cm/1.5cm and she said no need to take extra margins..if she wasn't so dismissive I would have asked about this procedure more but hey ho great I have no clue now) is clear then they will follow me up with yearly mammogram ..I dont want to go through this worry every year.. I want to be sure I do all I can to prevent having breast cancer now if possible ..

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Community Champion

Re: Awaiting diagnosis

Report to pals at your trust and ask for a second opinion, that’s shocking you’ve been treated like this, no one should have any less than kindness, understanding and compassion also say you want genetic testing private then if your trust will not provide one and ask what you need to do to enable that to happen. No one knows your body like you do and you shouldn’t be treated in such a dismissive way, shocking, so sorry you’ve encountered that. Sending ❤️💕💕Shi xx

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Re: Awaiting diagnosis

Jill

I cant believe they have told you things over the phone like this.. I am shocked and sad to read your post.. I went in for my results which are left benign changes but right is inconclusive pathology see early changes but cannot establish cancer..so booked for removal of whole lump to investigate further..so seems all good for now apart from fact that cancer might still be hiding in it and this not knowing drives me insane. 

On other note I am so angry with the doctor I seen today and I hope I will never see this wonen again she was so dismissive of all my questions..told me "you have no cancer but some changes why do you panic" ..she basicaly told me I have no right to panic and think there might be something wrong till I am told so..she said "don't run to think and behave like cancer patient, walk slowly.." I was absouletly shocked of her attitudes and way she talked to me.. I was so upset and broke down in tears as I was trying to ask if I can have any other tests or genetic testing due to my unknown family history..omg her reaction was shocking again indicating I have no rights to genetic testing and why I am asking as I don't have cancer yet.. I am glad my other half was there as I dont think anybody would believe me that she was like that.. then she said "do you want to see breast nurse" she just didnt want to deal with me anymore I declined as I wanted ask her the doctor questions I had..but she was then trying to explain biology of cell change to me which I said to her 3times I understood I have this knoweledge.. my other half asked to see breast nurse (I think to calm me down as I was getting wined up by this doctor more) and this doctor then said "well she is not a cancer patient so I dont think so" ..this app was the worse experience ever..not becouse of the results but becouse of this doctor attitude..and yes I was emotional anxious and possibly over reacted a little but she did not handle me well snd she made it so much worse.. I am not a cancer patient but I am investigated for it and untill I have all results available I will feel what one feel in uncertain time. All way home I was thinking of all my patients and their journey through my hands and I pray that I never ever made someone feel this way.. I woudnt be able to forgive myself.. I am truley shocked by this experience ..

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Re: Awaiting diagnosis

AgiA - I really understand what you mean, my poor consultant would say something and I would jump on a word he had used. As a nurse you will understand that there is lots of “doctor speak” (as it was described to me) - but it’s very different being on the receiving end of doctor speak isn’t it. The nurse you spoke to sounds like she was trying to reassure you and perhaps trying to say something like “although you have cancer, it’s caught early and can be treated” but didn’t phrase it very well. Could you call her back and ask for some more reassurance? Big hugs, Evie xx

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Re: Awaiting diagnosis

Good luck today .Ive had phone calls like that -I think it's very hard to get the right tone /words sometime and unless you've been on the receiving end you don't realise the impact.When I got my breast cancer diagnosis they were so sure it was not cancer that I had a telephone appointment to give the results - the call came and I was asked to go in to the hospital -I was a wreck - had to try and get hold of my husband to come with me to the hospital - I obviously knew what they were going to tell me .When I got a womb cancer diagnosis I was told I would get a letter with results through the post but out of the blue whilst walking the dog I got a phone call from a nurse who told me I had an aggressive form of cancer - she didn't suggest I come in for results ,ask me if I was on my own at home and the use of the word aggressive I found totally inappropriate - surely this was better discussed faced to face and put in less alarming terms - should have made a complaint really .What time is your appointment ?  

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Re: Awaiting diagnosis

Hi ladies

Just a quick note ..on friday I called to check with breast nurse if I need to rebbok my app as didnt think 2nd biopsy will be ready..it didnt make much sens what she said to me at the time..so I phone again today and her reply was ..we all know about your 1st biopsy already (indicating I myself been informed) than she very causaly said that 2nd one is back and was discussed today in MDT to come in tomorrow..she then said "dont panick is not all that bad" which for a few split second put a smile on my face ..but then I thought something is bad ..I have 2 issues so one might be ok other mingh be not.. its just you see its not always good to be part of healthcare family..its very difficult to nurse a nurse and we pick on a lot that other patient might not think of..I know she wanted to reassured  me but it just came out wrong.. and I bet once she put that phone down she felt it..but we all are just humans. And just to clarify I am not treated at the place I work..I asked for completly different Trust with no conection to my place of work. My GP was good about this giving me preference and choice. I dont think I will sleep tonight so might bother some of you with my thoughts later xx thank you All brave You for being here for others xx

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Re: Awaiting diagnosis

Dear Jaybro

Thank you for your words they do mean a lot..I cant believe myself how this got to me.. maybe as I am so tired all the time due to low iron and low WBC ..initially I was putting this towards post covid side effects.. but meds not helping much instead causing a lot of side effects..so the physical exhaustion probably leading to my mental near break down. I am much better at work where I have no time to feel sorry for myself so being home is not doing me any good.. colleagues at work (those few that know) are allowing me to do what I can and its safe for me to continue my work.. my other half is constantly complaining that I should be off sick..I understand his point but I do not consider myself ill..being anaemic and neutropeanic awaiting multiple breast biopsy results is not being ill to me.. although if I had a patient like that I know what I would be telling that person.. how ironic.. so probably I should listen to some of the advice from others ..I need to think of myself now and be kind to myself first and maybe that way one day I will be back to my old self ..

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Re: Awaiting diagnosis

Hi Agi

First, I’m so sorry you find yourself here. Waiting for results is hellish but waiting for two sets of results must feel unbearable. However, from my experience, it’s not impossible that your results may be through quickly. I was surprised at the speed of the process (the worst is trying to get related appointments outside of oncology - it can take months!). Also, keep in mind that you haven’t yet had a breast cancer diagnosis and may be fortunate.

Your instinct and probably professional experience drove you to insist on a referral and you were (unfortunately) proved right but, if the results are positive, what a life-saver! Sometimes these little bits of serendipity are amazing (I had two new freckles on my areola, no lumps...but stage 3 heavily node-positive cancer). Congratulate yourself and feel proud!

As regards how do you swap heads, personally I think it all comes down to trust. You have to trust your team to know their stuff and do the very best for you, just as you hope your patients won’t ‘know better’ rather than trusting you. Make good use of your contacts but leave the cancer to the experts rather than researching everything and frightening yourself silly. You can still make informed decisions based on asking the right questions. Focus on doing your bit - keeping yourself as physically and emotionally healthy as you can so whatever treatment plan you have can flow smoothly. Focus especially on the emotional bit - yoga, meditation, mindfulness, even YouTube relaxation videos (my lifesavers). If your results are positive, the sooner you start, the greater the impact they’ll have in what will prove a difficult but manageable time ahead.

I hope all goes well for you x

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Re: Awaiting diagnosis

My initial result app is booked for this tuesday but as I dont want to do it twice I think I will have to wait untill 11th.. I spoke to specialist breast cancer nurse at the hospital she kindly said she will look it up on monday if my secong biopsy is back but realistically looking I dont think pathologists would have looked at it in 2days ..I am not the only sample being tested, I am sure there is other more urgent samples in the lab.. I have told few people about my tests but I dont want to bother them with my thoughts all week.. and decided to join the forum to have somewhere to share those thoughts questions and feelings 

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Re: Awaiting diagnosis

Hi AgiA - Jill is absolutely right, you have been caring for others but that doesn’t make it any easier for you to deal with this situation. The waiting is the worst time. Now is the time for you to take lots of care of yourself, whatever helps you pass the time. It might be chatting with family and friends, walks, easy to watch films, mindfulness - whatever works for you. Try to remember that thoughts are not facts. Maybe try to lock away your worries and allow yourself a short fixed time each day to think about things and worry (if that makes any sense). That might just help you manage the waiting time.

Use this lovely forum to offload or chat, we are right with you. Very best wishes Evie xx

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Re: Awaiting diagnosis

Waiting for results is just the pits .I can understand you not wanting to go through that twice ! Having some knowledge through your job does not prepare you for being the person on the receiving end ☹️ Have they given you any timescale to work towards ? X 

 

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Awaiting diagnosis

Hi..I feel like a cheat joining as I am not diagnosed as yet.. this week will drag ..I had a lump in my R side for over 6mths, GP wasn't convinced but as my blood results are rubbish I insisted he refers me to breast clinic, and they found something in L too.. what a blow that was.. I had uss guided biopsy of R a week ago..and mammogram guided of L yesterday.. I decided to wait untill both results are back and discussed in MDT before I go back for app, as initially consultant wanted me to come to discuss R first..but how can I go through results app twice..I feel sick in my stomach just thinking about it and worse of all I myself work in healthcare ..I see and treat/take care of patients every day..how do I stop being a nurse and becoming a patient..