Confusion over diagnosis. How angry should i be??

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Oh Louise, sorry to hear about your infection! I would be furious!

I am struggling enough with the fact that I have a little patch on my nipple (about 1cm) which wont heal and keeps oozing from my secondary bleed (and is worse just before I go to see him but I think its because by then I am in need of draining) and one on my back (about 2cm) which has just started fresh bleeding over the last week, let alone if I was in your position!

Mr Rayter decided today that he wouldn’t need to see me again and has discharged me from him with an open appointment to go back if I am concerned. He has said that the patches will settle and didn’t want to pick at the scabs/skin (thankfully!) and as my fluid output had halved in the last week (100 to 50mls) he wouldn’t need to do it again but I can see the BCN if I feel the need so to speak.

He seems very good and I have a fair amount of confidence in him but to have an unidentified infection raging in a wound for 4 weeks! Didn’t he notice something when he saw you last week? Did he take the swabs? Like you say, what the bleeding hell happened to the swab results - why didn’t someone chase them up?

I hope you get some satisfaction tomorrow and an apology at the least!!! Are the antibiotics working yet? Is there any improvement?

Is Mr Rayter your Onc then as well as Surgeon? Only asking cos I only went to the BRI for the surgery and am being moved back to Weston for chemo (next Tues).

It still seems an odd twist of fate that we should have been under the same surgeon a week apart and miss each other each week at clinic by a day!

xxx

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Hi ostrich,

I saw Dr Rayter today and when i asked why my results had taken so long i was told ‘we don’t know’. How crap is that! he seems to blame the gp surgery as all my swabs were taken there (but they all access the same database??) I know nobody wanted this or did it on purpose but i really wanted someone to say sorry! I realised though that ranting was going to get me nowhere so i’ve just let it go.

I do like and trust all the staff at the BRI, i think the medical care has been brilliant, its just the crap communication and NHS admin that has let me down. M sister had Lymphoma 4 years ago and it was the same. They lost her original lung scan and biopsy which meant her diagnosis took 6 weeks longer. Not good when you have grade 3 stage 4 cancer!

Dr R also has said he only wants to see me every 3 months now as he’s so pleased with my progress. I also only drained 70mls from my back so i dont need the seroma clinic either. I am really glad, but also a little bewildered as i have had to see him or BCN’s twice a week up till now!!

He did get his tweezers and scalpel out though! He ripped all the necrosis off the front today. It didnt hurt, but i made the dumb move of looking and felt decidely queasy, the dead stuff is foul when it all came away. BUT amazingly it doesnt lok hlf so bad underneath. He was pleased as punch with it and said the body will just do its thing now, the flesh will grow till it gets to skin level, then the skin will grow back over the top.

The antibiotics seem to be doing there thing as there was less discharge, but they are giving me dodgy guts (its always somehing isnt it!) and most exciting of all i’m now allowed waterproof dressings so i can shower…every day!

I feel alot better today, more positive and less tired. Not sure if thats pyschological or antibiotics! I have only seen dr rayter, i dont have an oncologist as i dont need any drug therapy. It does seem very bizarre to say that i’ve had cancer, but never been assigned an oncologist!

I hope your first session of chemo goes well next tues, let me know how you get one.

lou xxx

(by the way, the reason we havent met on wed clinic is cos i found out, after waiting over 3 hours one week, that he runs a shorter second clinic on thurs avo’s . Its less busy so little waiting time and once i’d wangled a slot one thurs i refused to give it up!)

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Hi Lou,

Glad to hear things went well and you have stopped rotting! LOL! Seriously though its good that the skin underneath was healthy and will grow back! And you can have showers!!!

Sorry about the NHS admin though (they took a while to send my notes from Weston to Bristol so it delayed my seeing Dr R for a couple of weeks and the receptor results weren’t available at the BRI and Weston couldn’t find them when I went to see the Onc until he kicked hard to get them to dig out the original biopsy results which is where the results were apparently not from the tumour removed).

I know what you mean about being thrown out in the cold. Dr R discharged me on Weds and just left me with an open appt to see him if I am worried or call a BCN. I asked him about my nipple and other boob and he said we would talk about it after chemo but no appt made so get the feeling it will be in my hands to arrange to see him and that it won’t be done as quickly as they took my boob away - it’ll probably be like normal treatment waiting times.

You’re bound to feel better with the worry off your mind so enjoy!

You didn’t say whether you found about about your receptor status and therefore whether you are having any tamoxifen/herceptin etc. Its important that you know and its done if you are receptive, particularly if you aren’t having chemo or rads.

My first follow up with him was a Thursday but I changed it to a Weds cos it suited OH better. We ended up waiting a fair time (an hour and a half). Seems we were fated not to meet!!

xx