Awaiting diagnosis

[ttyler]

Hi Agia, 

I know it’s easy for me to say, but please try not to panic!

 Wanted to let you know my experience to hopefully reassure you.

 Before my lumpectomy I had a core biopsy. This procedure caused the tumor to swell, it felt bigger and more prominent in my breast. I was that scared I thought the lump had got bigger and was spreading. My surgeon reassured me. 

 When I had the lump removed along with margins and sentinel nodes I could not feel the same lump anymore but my scar and surrounding areas felt very hard and lumpy as though there could have been another tumor. Think the scar tissue was swollen.

 You will have to remind me because of my chemo brain I can’t remember, but did you say you were being treated at a different hospital to where you work? The only reason I ask is that there is a nurse in the chemo unit that had the same cancer as me 10 years ago. She is still clear now. She received all of her treatment at the same hospital that she works and her boss was her oncologist. I know you are unsure of what to expect until you get your results, but maybe if you are not at the hospital where you work and you would feel better being there as the professionals are more compassionate then maybe ask to change over.

 It’s horrible to hear that you are so worried and I can’t say yes it’s going to be alright you haven’t got cancer, but sent you to know that if you have you can do it!

 Try and call your breast cancer nurse for reassurance or the nurses on here are second to none for advice and grab onto my hand I have got you and will hold you steady. 

 Whatever comes next we can deal with.

 Try to enjoy your day and if you need to talk I’m here!

 Sending lots of love 💕 Tara xxx

[Jill1998]

It's normal to get hardening and swelling around removal site from standard BC surgery so hopefully the same with this procedure ? 

[AgiA]

😖😭😭 Is it normal to fell the lump as it was felt before it was removed?? Is it brusing?? I am so confused.. I had this lump removed 10days ago and I felt the area today and I feel the same lump.. I am so fed up confused and just want to cry.. this supposed to be pioneering technique removing suspected lump with minimal side effects.. but I feel the mental side effects are worse than any scars or disfiguration... my follow up is 28/8 ..ages ..trying not to overthink this 😖

[ttyler]

Hi Agia,

Thank you do much for your Kind reply and your offer of support with my nursing degree. Never know I may have a few questions for you in the future! 

 I chose to tell my boys about my diagnosis and take them on my journey because I want them to grow into strong boys that realise that it’s okay to get an illness and then you can go to the hospital to have the strong medicine that is going to help you to get better. I have very sensitive boys one having aspergers. I would like them to see that illness is not scary and it is possible to fight and become cured. I understand that you say that everyone has a choice about whether they tell their families, children or grandchildren and I completely agree with you. I just wanted to change a negative into a positive. I am an optimist and try to see the good in everything.

 The way the nurses/ doctors have been with you have made you realise your qualities and the compassion you have for your patients and you should be so proud of yourself. You offer the care that is needed and I don’t doubt will be even determined to do so now even more in the future.

 I know you don’t know your full diagnosis yet, but I can tell through your words that you have the warrior spirit. Your a fighter!

 I truly hope you go get the all clear, you seem like such a lovely lady. Take care and remember what ever happens statistics and other people’s demeanour towards you don’t mean anything. If you believe, anything is possible.

 Lots of love 💕  Tara xx

[AgiA]

Hi Tara

Thank you for sharing your story with me..I am so so so pleased that you are enrolling on nursing training 👍👍👍😁 fantastic news.. to have someone who have experienced cancer and treatment for it, no doubt you will be able to help other patients through their journey .. who knows our paths might cross in professional way one day 😁 I keep my fingers crossed for your treatment and nursing training to go smoothly and swiftly..and if you need any advice pls write anytime. ..

I find this forum such a relief.. just to be able to write about my thoughts.. initially I thought, I am cheating, as I am not diagnosed and I hope all my results come back clear..but then I decided to let myself feel what I was really feeling ..fear and anger.. and those few weeks put a lot in perspective for me in personal and professional way. 

The way I was treated by some of the health professionals was disappointing and sad, but I do realise there's a lot of great doctors and nurses around. I work with fantastic team and other professionals and I  carry nursing in my heart. 

I think all of you who go through chemo are extra brave .. chemo is such difficult treatment physically and mentally, I fear this the most .. I wish all your cycles are sucessfull with minimal discomfort and minimal side effects. 

I know someone who went through surgery chemo and radiation for breast cancer who didn't tell her son about the illness, at the time he was 8y old..he is now 17 and still don't know his mum had cancer..she is ok cancer clear now, she didnt want her child to go through the horror and constant worry.. how and what you tell your children is your own personal decision and noone has the right to question your decision in regard to this. I sometimes nurse patients who are very poorly and at the end of their lives..I sometimes get asked "shall we tell our grandchildren..or children.." its very difficult to advise ..I often say to my patients they need to do whats feels right for them at the time. There is no right or wrong answer I think.. 

Tara good luck with your treatment and nursing training.. I will keep you in my thoughts. Take extra care of yourself ❤❤❤

[ttyler]

Hi Agia,

Didn’t want to read and not comment. You have had such a hard time. I am Tara, 37 diagnosed with triple negative breast cancer on the 29th March. I have had a therapeutic mamoplasty on the 9th April and have just had my 4th round of 6 chemotherapy cycles.

 I feel the compassion and treatment I have received from my team has been really good up until now, however when I was diagnosed I felt like everyone was looking at me like my time was up. I know professionals have to be careful how they approach your condition/ diagnosis, but everyone was so somber. I have met a couple of nurses that have been dismissive and even one that told me I should be honest with my children and not promise them I will not die. This truly upset me as I am fighting for them. It’s the last thing you want to hear when your head is screaming get this bloody bleep out of me! To be honest I can imagine it is slot worse for you as you are in limbo not knowing what is truly happening as yet. 

 Anyhow just to babble on, I work in a school as a ta, I was due to start my teaching degree in September, but this had been postponed due to treatment. I have now decided to reconsider my options due to my diagnosis experience and will now study nursing next September. I want to be a breast care nurse. I want to be the lady that can reassure people that we can get through this. I won’t be laughing or smiling but hopefully would have a more reassuring look on my face. Always remember anything is possible! Compassion goes a long way in my eyes. Even a hug at times is a help. Think my surgeon has had enough of these off me now. In fact if the patient is positive it rubs off on everyone else. I said to my surgeon the other day I would be happy if I can live to see my kids married and grandchildren. His reply was you will see you grandchildren’s Children. You see positivity rubs off and ensures we beat the battle.

 As Shi has said there are lots of people on here that offer good support and will be with you every step of the way. This site has been a great support to me and is the place I always turn to first. We are all here for you!

 Have a nice day!

 Tara xxx

[Jill1998]

Agia ,Im sorry you had another rubbish experience - as I've told you before I encountered similar although thankfully not with my breast care team .I do wonder whether teams / wards develop a kind of group culture that affects how they deal with patients.

[Shi]

Agia ❤️ So sorry to hear what a traumatic experience for you 👭 you could put a complaint into pals so hopefully it doesn’t happen to anyone else. Please try not to let it upset you again today, breast cancer now and people who care are on here for you and you focus on you and doing things that make you happy, you are what’s important not people who have no compassion, you do and that’s what matters 💕💕✨✨Shi xx

[AgiA]

I am starting to believe I am expecting too much.. I went to have my lump excision done under local with uss guidance today and the hospital let me leave in tears!!.. nobody took any interest or time to try to help me, to understand me, to make effort to make it better..it was all so confusing and disappointing, that as a nurse I cannot comprehend .. no one gave me any compassion or dignity and I am just so heart broken now .. it was rushed as they were running late and nurses wanted to go home..in 15years I been a nurse I never ignored my patient tears.. I am thinking of those who have no background knoweledge who don't know the system ..how scary for you. I will get over this but for now I am broken. I seen a doctor last week who said she will book me for this pioneering excision of my lump using local anaesthetic and uss.. I  was happy less waiting time & less complication, to be told today that they only taking another biopsy.. bigger piece as pathologist couldn't work out my previous sample...after raising my concerns the doctor took as much as she could (but I don't know how much) and placed marker inside. I was ok with all that I understood all, and was happy utill I got to the nurse post mammogram, who said "I will put a dressing on", she said that twice..so I was expecting a dressing ..to my surprise she pulled out a bandaged (one roll) and attempted to bandage my size 32G breast.. well half of them hung out deformed..then she patronised me saying don't worry it,s not bad.. I stressed to her the fact my t-shirt is "thin & see through type" and I  am getting on a public transport in rush hour.. no compassion no dignity, she brushed me off and send me away in tears.. 5 nurses/hospital staff seen me crying my eyes out, none stoped and asked. I am fuming now hours later..but I cried all way home (2xundeground trains) I must be ecpecting too much.. last week I was told "why you panicking you don't have cancer yet" to today "dont worry its not that bad" when I felt half of my chest hanging out for everyone to see.. I just hope my biopsy/excision comes back negative and that I will never again have to put my foot through that Trust doors.   

[AgiA]

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 ..

[Shi]

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

[AgiA]

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 ..

[Evie-S]

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

[Jill1998]

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 ?  

[AgiA]

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

[AgiA]

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 ..

[Jaybro]

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

[AgiA]

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 

[Evie-S]

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

[Jill1998]

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 

[AgiA]

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..