Diagnosis

hi

welcome to the online community sorry you've had to come and find us, sorry it's taken me so long to reply I was actually hoping one of the others might have chipped in.

wow. what a fiasco. deep breath. stay calm.

You have to go back to the start. 

I had a 'clear' mammogram in 2012 and requested a new one in 2015 in advance of the general one which was due. Comparing the two, the 2012 clearly wasn't 'clear'.  It was a mistake but mistakes happen, right. 

I then had an MRI to double check what we were dealing with and my private radiologist spotted a separate lesion on the opposite side of the left breast, the right side of the left breast and we were used to using the terms upper or lower and inner and outer, which would have given me, 65mm upper outer, 15mm upper inner, instead we had a merry dance around which breast was actually affected or whether it was both. Transferred to a different hospital the new team were using this different terminology which caused yet more confusion. The transfer was only because the original hospital didn't have a specialist surgeon. 

Roll on surgery day and a lump had actually popped up in my cleavage, if I had a cleavage, size of a marble you couldn't miss it, it was painful too, and I pointed it out to the surgeon, whose first language wasn't English.

A couple of days after the op I realised that the lump was still there, now obscured by the implant reconstruction. 

Thankfully a truly lovely and diligent radiologist in the new hospital acted promptly and sent me back to the start and this is what I think you need to do. 

Go back to your GP, explain the original symptoms are still there. You have a whole new set of symptoms that the hospital has inflicted on you but you must use the choose and book system to select a new team to assess you.

Mistakes happen, even at the top hospitals.

The maternity team lost my notes when I had my youngest son, they thought he was a girl, then I was called Mrs Jones, eventually I just discharged myself.

Mistakes happen. It's how we deal with it that matters. 

Once you have your correct assessment, I won't use 'diagnosis' yet, let us know. 

If you feel up to it you can contact PALS to give them a heads up on the chaos they're dealing with. 

big hugs

Carolyn 

xxx

Hi Carolyn and thanks for sharing your experience. I am having that second opinion, but unfortunately, it is with a colleague of the same surgeon  and at the same hispital. I collected all of the nedical records from the hospitals in the city and for everything I underwent. I filed an initial complaint through PALS, and so far all they did was deal with a privacy issue in that every patient was actually interviewed and assessed in an open corridor. The fact that my information (like yours) went missing and only that of the dates were all the procedures were ordered from, then xrays and diagnostics were literally erased (both not uploaded into the paperless file and the hardcopy after three attempts cannot be located)  I am suppose to trust the pre op eval to make it into surgery, the anesthesiologist doing the interview isn't the one in surgery, and their will be students in the operating theatre, which worries me to no end. I cannot afford to go privately and the GP is not very happy with the situation. They never informed him of what was going on. I had to show him my reports, and his colleague was a breast surgeon herself who couldn't believe what was ongoing. I need tbat PET scan because the core biopsy that was taken removed all but 2 mm of the lump. Since the radiologist report narrative lists 3 exams not one which I had only one CT - pelvis - that allegedly spotted the lump I asked how. I worked 14 years in orthopaedic surgery and know how a CT scan forms a picture. My street clothes were on and I was told to push my breasts up, holding my arms across my chest. Yet, no bones in my arms occluded this incidental finding? The lump was at the 8 o'clock position of the left breast against the chest wall. Funny, though, my chest xrays are missing, too. It was like a n episode of house done by the Keystone cops. This isn't just one mistake, it is many. The surgeon is not an onologist surgeon. I haven't seen an oncologist. I went through PALS, and AVONET, and a legal enqiry which are prepared once I have general anesthetic to remove the clip and/or lump. I was told to stock up on ibuprofen for pain at home because they don't prescribe medication. At what point am I able to have any say in my care?

I don't know how you came through with positive thoughts. Mistakes or not, I am not happy and I haven't been checked upon by my assigned advocate at the breast clinic whatsoever since finding out this happened. In fact, my partner took me up there because of the pain I have because of the clip marker and simply was told that happens to some people. Then I was ask to move up the surgery.

I hope for better answers this week. Thank you, again, for listening to me go on and on  and being positive. You are a credit to bloggers. 

cici

Hi Carolyn and thanks for sharing your experience. I am having that second opinion, but unfortunately, it is with a colleague of the same surgeon  and at the same hispital. I collected all of the nedical records from the hospitals in the city and for everything I underwent. I filed an initial complaint through PALS, and so far all they did was deal with a privacy issue in that every patient was actually interviewed and assessed in an open corridor. The fact that my information (like yours) went missing and only that of the dates were all the procedures were ordered from, then xrays and diagnostics were literally erased (both not uploaded into the paperless file and the hardcopy after three attempts cannot be located)  I am suppose to trust the pre op eval to make it into surgery, the anesthesiologist doing the interview isn't the one in surgery, and their will be students in the operating theatre, which worries me to no end. I cannot afford to go privately and the GP is not very happy with the situation. They never informed him of what was going on. I had to show him my reports, and his colleague was a breast surgeon herself who couldn't believe what was ongoing. I need tbat PET scan because the core biopsy that was taken removed all but 2 mm of the lump. Since the radiologist report narrative lists 3 exams not one which I had only one CT - pelvis - that allegedly spotted the lump I asked how. I worked 14 years in orthopaedic surgery and know how a CT scan forms a picture. My street clothes were on and I was told to push my breasts up, holding my arms across my chest. Yet, no bones in my arms occluded this incidental finding? The lump was at the 8 o'clock position of the left breast against the chest wall. Funny, though, my chest xrays are missing, too. It was like a n episode of house done by the Keystone cops. This isn't just one mistake, it is many. The surgeon is not an onologist surgeon. I haven't seen an oncologist. I went through PALS, and AVONET, and a legal enqiry which are prepared once I have general anesthetic to remove the clip and/or lump. I was told to stock up on ibuprofen for pain at home because they don't prescribe medication. At what point am I able to have any say in my care?

I don't know how you came through with positive thoughts. Mistakes or not, I am not happy and I haven't been checked upon by my assigned advocate at the breast clinic whatsoever since finding out this happened. In fact, my partner took me up there because of the pain I have because of the clip marker and simply was told that happens to some people. Then I was ask to move up the surgery.

I hope for better answers this week. Thank you, again, for listening to me go on and on  and being positive. You are a credit to bloggers. 

cici

hi cici

I found it therapeutic to stick around and haul newbies into the lifeboats, regulars on here will tell you I was a wreck back in 2016.

It sounds as though you are doing all the right things.

Stick to your plan. Don't be fobbed off.

I know everyone loves the NHS but with such a vast organisation we are just numbers at the end of the day, make sure your number is safe.

They can prescribe medication if you need more than what can easily be obtained from a chemist for £1 but I didn't need anything other than paracetamol.

Keep us up to date with your progress 

Carolyn

xx