Saying Hello and checking what others are experiencing

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Hi, gone from symptoms of mastitis starting 12th March, to a mastectomy 23 days ago. Initially told no specific type breast cancer stage and grade 1 on 22 April to its more than 1 site in the same breast.

still have a drain in, just wanting to see if others are experiencing What I’ve been experiencing the last few weeks. I’ll leave messages for the breast care team to call me back at most I’ll call them twice a day and that is maximum two currently once a day with a drain level reading. But I don’t get callbacks that day the next or the next week.

I left a message yesterday at midday saying that my drain site needed a dressing change as unfortunately it has got wet in the shower. 2 pm no reply according to collect replacement wound drains, so I called again and advised there were no nurses in and no one available to talk to me or to change my dressing. 

Are other experiencing problems with call backs and getting dressings changed? Or is it just me

  • Hi did they give you spare dressings and if so are you able to change yourself? If not there are district nurses you can phone for them to visit.. what part of country are you in ? Phone 111 and they can assist you 

  • Yes Gp surgery too as they should have treatment room nurse, practice nurse or DNs

  • I'm so sorry, that you haven't been getting the care and attention you need, for your physical and psychological needs. I hope all the above replies, will help you and your wound is dressed daily, and the company and care from the nurse helps to boost your self confidence.

          Would you mind ecpalining you symptom because having mastitis and then a mastectomy, is a big jump! I had lobular an er in my right breast o er 10 years ago. My left nipple became really sore Rolling eyesfew weeks ago and secretion, white, greeny, and cleared uo in 24 hrs with antibiotics. Obviously this is not normal at 61, and a rather long medical history! Rolling eyes! Have been referred to the 'emergency  breast' clinic, on the 28th July, - no its taken a few weeks but as everyone knows long waiting list everywhere!Yesterday, suddenly realised my nipple was leaking again, this time serous clear liquid though not much. Yep I'm increasingly  worried!

    Wishing you all the very best, and don't worry if you don't wish to reply. Take care x Jo

  • Hi 

    I had similar problems with the breast care nurses , unfortunately I just think they have so many of us to care for they are extremely busy in my clinic I overheard the consultant telling another he had 53 people to see , they made appointments for me to be cared for by the district nurse who came out to look at dressings drains etc , maybe if they haven’t arranged this for you ask for that , I had to ask for them to visit earlier than they were meant to as I had issues , hope this helps and your situation improves x

  • 12 March nipple felt hot/sore symptoms worsened and saw GP next day. Given antibiotics which resolved symptoms. 3 days after completing antibiotics symptoms returned called GP given 2 different antibiotics and had to go in the next day to be seen. Where GP did (as yourself) a urgent breast  clinic assessment. 

    finished antibiotics, 1 week later symptoms returned out on same antibiotics - symptoms initially worsened this time and never completely resolved. As I finished 3rd course of antibiotics, seen in breast care clinic - same day 3 mammograms and a breast biopsy .

    Original symptoms returned within days.  Messaged constant via secretary who said he would see me the next of the week. Symptoms worsened and I had to get GP to prescribe the same antibiotic’s. Wanted to be checked as the week before the area they had biopsied had nothing to do with the symptoms I was experiencing. I felt the Doctor at my 1st visit didn’t believe me about my symptoms 

    At review advised grade 1 non-typical cancer believed to be stage 1 awaiting receptor reports and needed more biopsies. Advised my symptoms were not related to the to biopsy these were inverted nipple, redness, swelling, minimal clear brown discharge, a 2 cm wide raise ridge white in comparison to the red pitted skin were because of an abscess that could be felt. I was to continue the antibiotics until told to stop by the team 

    1 week later, 3 further biopsies under ultrasound

    further 3 weeks later advised, additional biopsies showed pre cancer. As at opposite sites of breast best action was for a mastectomy which was done 22 days later with partial reconstruction. Loads of scans done before mastectomy 

    Today advised stage 1 grade 1 cancer on initial site and DCIS grade 3 non invasive on what was the abscess site. All lymp nodes clear. and not inflammatory breast cancer as I had suspected was not the diagnosis   No need for chemo or radiotherapy just hormones

    I’ve been lucky, still have 1 of the 2 wound drains in - 5th week starts tomorrow. Being referred to oncologist to discuss hormone therapy due to my co-morbidities 

    Not sure if my type 1 diabetes has saved potentially my life. It gave me symptoms when technically I shouldn’t have being having any