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Please help I’m so confused ! Getting really upset ,worried

spiritlove
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Hi , 

 

a bit of background. I've basicslly had a problem with my breast for nearly 4 years, I did see a nurse it was a slight pink colour on my aurola and dry nipple right breast, I've always had a lazy nipple on thst side and assumed it a blocked milk duct as I couldn't express milk much on that one 15 years ago my son who's disabled I had cia emergancy c section.

 

anyhow due to all family being vulnerable and thr pandemic and no vaccinations at that time , when this started was the year before I got antibiotic cream from doctors and she couldn't feel anything untowards but she did say come back in a month , however at that time we were having a very dIffulct time with my son whi has cerebral palsy ,eplilepsy and non verbal , he requires 24/7 care, he had a subluxed knee and we had to take him to A and E , then we tried to get him to see the orthopaedic surgeon as it was urgent thr only date they had for months was the same date I was due back at doctors, but by this time my breast seemed to had resolved itself, 

 

anyway fast forward , I ended uo with a scab and other symptoms thiight I had an infection , my nipple did retract slightly but I still thiight infection but didn't have a fever anyway I stupidly didn't see anyone because of all the stress I was having with my son and his care team and shielding and terrified of going out etc and letting everybody at risk 

so about 10 months ago I had a wound my nipple gone in and the surrounding tissue , every month I woukd get excruciating pain but onky haooening once a month , so thiight connected to my periods , I did get a scab so left it just covered it up, then thst scab got massive until it fell off and I was left with a hole cavity , this is when I couldn't look, I did all this without telling anybody and caring for my son, last year I was diagnosed with uncontrolled diabetes ,I'm on tablets now, 

anyway since the scab fell off I started getting puss and that and it never scabbed over again, I was struggling with my son, bowel issues so his sleep was all over , I'm on nightshift with him aswell as day and. Y sister helping as much as she could , thrn I couldn't take much more I ended uo telling mum and sister and two days later I went to doctors , she said it looked sinister and there was an infection too, she didn't mention cancer but Implied it advanced tumour , she immediately referred me to 2 week pathway breast clinic , 5 days later I was there , I had a biopsy , and they were concerned in examination stiol didn't mention cancer but there faces said it all and said maybe try a bit of chemo . She said I will refer you for a CT scan and community nurses ti come out and care for your wound.

I got the CT scan 5 days later but had to ring abiut my iodene allergy like the letter asks you too, they said it was ok to go ahead without the contrast dye, so I went down and they asked me abiut the iodene as I sat there in my gown and she went and spoke to my consultant on the phone and he said absolutely no point without contrast dye cause woukdnt want to miss anything ,  bearing  in mind he didn't have my biopsy results then or my blood tests as I had had my bloods done then. 
 

so I got sent home and he said he woukd phine me very soon to speak with me abiut premedication for the contrast dye as he couldn't risk the dye without the preventive meds, also said he woukd write to my Gp to lrescribe me the meds for the contrast dye and there woukd be a team of doctors in the room keeping an eye on me.

 

  • Offline

    Part 2 

     

    some copies of emails from thr other day, 3 weeks now since I went for the CT scan I didn't have , I'm really not sure what the heck is going on but it's really worrying, why when he was so adamant he needed the contrast dye and now saying go ahead without it, cause nkw he will have my biopsy results and blood test results where he didn't have before. Is this cause he knows it's spread already , or they can't treat me cause it's advanced , they aren't exactly rushing any treatment for me, or is it due to staffing and nkt having the doctors to be there with me, I'm just really shocked if I'm honest , I understand the nurse being so confusing that I've lost my trust but the consultant the boss as it where , I onky found out I had a consultant when I went for the scan .

     

    Her email 

     

    So following MDT discussion they had decided that CT will need to go ahead and if you are really anxious about the contrast then to do the CT scan without but taking into consideration that the images may not be as effective.

     

    Not too sure which consultant was going to contact you with regards to medication options before scan as I am unaware of this. Once you have decided we can then go on to request this without any delay.

  • Offline in reply to spiritlove

    My response 

     

     

    Many thanks for your reply  however, I’m a little confused regarding what is now ok regarding the scan, so I feel I’d like to get some clarity re the situation before we proceed any further.

     

    The original CT was scheduled for 22 February. As per the instructions in the appointment letter I rang the department to advise that I possibly have an Iodine allergy. I spoke with someone called Nicola, who after speaking with another member of staff (I don’t know who), advised me it was ok and I could have just a basic CT without the contrast dye. I therefore attended the appointment as arranged. 

     

    At that appointment, the radiologist ran through a checklist and specifically wanted to know more about my iodine allergy, after which she left the room and rang to speak with the Consultant, On her return she advised the consultant  was not prepared to do the scan without a contrast dye - he apparently said there was absolutely no point as he wouldn’t want to risk missing anything. The radiologist apologised for my wasted journey and said I shouldn’t have been told it could go ahead in the first place.

     

    Furthermore, the radiologist told me the consultant  said he would be in touch with me by phone very soon to discuss this further and he would write to my GP to organise some medication (to counteract any allergic reaction) to be taken before any new CT appointment.  I understood a new appointment would follow in due course. As regards him ‘phoning me, I specifically asked if they could ensure he called my parent’s landline number and she confirmed this would be the case. She even doubled checked the number with me.

     

    I do have a mobile number, however, I have a son with special needs requiring 24/7care, and he is often awake through the night and so he and I can end up sleeping in the day and I often miss calls on my mobile. Using my parents landline number means my sister or parents can take messages, but email is usually the best way to make contact with me in the first instance.

     

    I am a little confused by your response - if I have understood correctly, you are now saying, following the MDT, I can have the CT without the contrast dye, but that the images might not be as good. Are you saying the consultant  is ok with that, because I got the distinct impression he felt there was no point to the scan without it. Just to be absolutely clear - I’ve accepted I don’t really have a choice in the matter re contrast dye - I’m not going to go against the advice of my consultant , as I value his expertise and advice and I do not want him to miss anything in the scan. I was simply asking in light of my anxiety, whether sedation was a possibility to reduce the chance of panic attack. If there is a medical reason why sedation cannot be given, I still wish to go ahead with contrast dye (with premedication through the GP) as per consultants  advice.

     

    If you need to contact me further about this, email would be best, but if a phone call is required, then please avoid tomorrow as I have appointments and the district nurses coming to redress my wound.

     

    Many thanks,

     

    Claire

     

     

    Hi Claire

     

    After having spoken to the consultant and the wider MDT, the decision has been made to carry out the CT without contrast. With regards to sedation if this is something you feel you require then to liase with your GP who can prescribe you medication prior to your CT being carried out. With this updated information please can you confirm if you hare happy for me to re request CT Scan so we can move along with treatment without any further delay.

     

  • Offline in reply to spiritlove

    I'm so sorry this is so long winded, but I'm at my wits end I'm already exhausted and no sleep and caring for my son and terrified. 
     

    why has he changed his mind ?

    and why have they nkt asked for permission for the first CT scan ? 
     

    Why has it taken three weeks and consultant not been in touch ?

  • Offline in reply to spiritlove

    My reply

     

     

    Re: Results Appointment

    Flag for follow up.

    CF


     

    Dear S

     

    Thanks for your reply. To be honest I’m still confused as to why initially a CT scan with contrast dye was an absolute must, and now it doesn’t seem to be that important. I feel I’m now in a position where I’m being asked to take the risk of something being missed by not having contrast dye. You mentioned in a previous email that I should bear in mind a CT without contrast dye could result in images that might not be as effective.

     

    It may be that my consultant  has reconsidered and would advise now that a scan without contrast dye would be best in the circumstances, but you haven’t explained why the change in decision, so I’m second guessing. I have no desire to delay things any further. I’m feeling anxious about how long the process is taking already, and don’t want to delay any treatment, but I don’t want to say ok to a scan without contrast dye and then find things were missed which then affects my diagnosis/treatment. 

     

    If he believes the scan without the contrast dye is in my best interests based on what he knows currently, then please go ahead and arrange the CT scan on that basis. Please don’t ask me to take the decision (and risk) based on the little I know about my condition. I won’t require sedation for a non-contrast scan as most of my anxiety was related to the risk of a reaction to the dye. If at all possible, an evening appointment would be much appreciated (due to care arrangements for my son).

     

    Many thanks.

     

     

  • Offline in reply to spiritlove

    Spirit 

    sounds like you have a lot going on bless you 

    but I'm sure if they thought this was BC they would have not left you waiting this long so hopefully it's not anything to serious and hope everything turns out well for you and your son ,

    good luck let us no how you get on 

    love Lara 

  • Offline in reply to laraj

    Thanks Lara for replying I really wish that was the case , there seems to have been alot if miscommunications , however I think they are pretty sure the day if my fast track referral befirecthry dud the biopsy upon physical examination , their faces sayd it all and even though they dudnt mention the wurd cancer they mentioned advanced cause if my breast being hard and clump if if hard lymph nodes under my arm. When I read their report on my GP app it says local advanced breast cancer with 3cm lymph node involvement and she saud I told Claire she has advanced breast cancer with fungating tumour, ...the thing is she dudnt tell me that at all.

    The first I knew if it was in my community nurses notes 

    That was all before results for biopsy was back. They ordered the CT scan in the day.

    So I'm really not happy at all about this and if her reply today is again vague then I will be taking this up with PALS

     

  • Offline in reply to spiritlove

    And my reply this morning , oh god I'm so scared hesgoung tiguve me results before CT scan. My sisters in the middle of replying on my behalf saying there's no way I can Di a face to face as I've got important appointments all day and I have to sleep and also look after my son whilst my sister goes tohet appointments this week 

     

    Hi Claire

     

    I have liaised with Mr  and have arranged for you to meet with him for a F2F appointment tomorrow 15/03/23 at 13:45pm. I think it would be best for you to meet with the consultant directly to clear up any confusion you may have with regards to the treatment decision and investigations.

     

  • Offline in reply to spiritlove

    Spirit 

    it's best to go to the appointment to clear up everything all your concerns can be addressed and discussed, did you have any biopsy is that the results you are awaiting also 

    love Lara ️

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