Delayed diagnosis, surgery & poor treatment.

Hi, new member here.

Going in to have a complete axillary clearance tomorrow following a left mastectomy on 28/2 and a sentinal lymph node biopsy that showed 11cms of grade 2 lobular carcinoma with extensive dermal involvement. To be honest I really don’t know what’s going on with treatment because it’s taken me two years to get to this point and nothing seems to have any sense of urgency.

I originally had pagets disease in 2006 whereby my nipped was removed and I had a short course of radiotherapy after and I was absolutely fine, could still go bra- less in summer tops and everything was good, even though it took 9 months from referral from my GP to surgery. Was done to mammograms every other year.

Fast forward 10 years and I asked my GP to refer me again as I felt that there was a change in the best. It didn’t feel the same and it felt lumpier where the scar tissue from the first op was. Went along to my local hospital who scanned the area and said it was just scar tissue and that it was fine.
I asked if they were sure because it didn’t feel the same as it had for 10 years and was changing shape. They insisted it was fine. In hindsight I wish I had pushed further but I suspect l suppose because I wanted to believe them I did. Start of October 17 had my routine mammogram at a nearby hospital because the local ones machine was broken. Heard nothing for a couple of months which was normal (they always said they’d only contact me for anything untoward). Got sent an appointment for breast clinic in December so thought nothing major or they’d have me in quicker. Got there to be told appointment was cancelled. I asked what appointment was for and was told mammogram. It turned out that my mammogram from October hadn’t been sent back to my normal hospital. By this time my breast was completely misshapen and was shrinking fast. They finally got the mammogram result sent through which showed a large mass. Called in start of January and scanned again and again told it was just scar tissue and nothing showing up. My response was to say ’ look at me, you can clearly see there’s something not right!’ the doctor then took some biopsies to reassure me. Follow up appointment 12 days later was told I had a new and different cancer to what I’d had before. Even then it took forever for other tests to happen. Then referred to a third hospital as my local hospital don’t do reconstruction and was was to have mastectomy and reconstruction. They cancelled my first two appointments with them. Finally got seen and surgery scheduled for 28/2. Surgeon took more biopsies. Two days before surgery told couldn’t do the reconstruction as it had broken through the skin. 5 weeks on going in the morning for node clearance. I’ve not been told what will follow, I just know radiotherapy isn’t a option because I’ve had it before. Last surgery I had to go in the day before as I’m insulin dependant diabetic, I queried whether I would this time as I’m still diabetic, told probably should but have heard nothing since.

Am I the only person whose whole experience seems to be a catalogue of errors and misinformation? It’s really knocked my faith in the treatment I am receiving. I seem to be continually dealing with idiots!

Hi Sally

Bless you, that sounds like a horrible experience, I hope that now your treatment is properly under way that everything goes much more smoothly. But it’s bound to shake your confidence in your treatment. 

I had a few issues with my treatment, mainly caused by communication failures which caused avoidable delays in getting diagnosed. But it didn’t make any difference to the outcome, just my stress levels! It does seem that getting more than one hospital involved is a potential problem area.

I hope your surgery went well and wish you a speedy recovery. There’s lots of support on these boards from women going through the same experiences, I found it was a real godsend when I was going through treatment. 

Sending you a hug, and I hope you recover quickly from the operation.

So had the second surgery and what a difference. The mastectomy was a doddle, no pain relief required and I went back to work after two weeks, all nicely healed albeit with a small seroma which wasn’t really an issue.

Second surgery much more painful. 10 days on I’m still taking regular paracetamol and codeine. Drains now both removed but although underarm has healed nicely the breast scar hasn’t. It had previously but the opened it up again to shave the chest muscle as the tumour was right up against it. It’s this that hurts most and now the scar isn’t healing nearly as well as it did first time. It’s oozing all the time, but not infected. I’ve having to change dressings 3/4 times a day.
Back again this week for Ct scan and bone scan, the last ones in Feb were clear so fingers crossed. I was told the muscle they took showed no cancer but 5 of the 10 lymph nodes did, so 6/11.

I asked for my care to be transferred back locally cos I really can’t be doing with travelling up to London for chemo when it starts when I could be having it 5 minutes up the road. They are going to do that for me, just a case of when to start it cos I’m going on holiday 19/5 and don’t know whether it’s a good idea to have the first lot before I go or not. Also radiotherapy which I was told I couldn’t have because I had it before but now told I can cos it’ll be in a different area.

Hi, I do feel that the care I’m getting now is ok. Not fantastic, just ok. I didn’t know they were going to shave the muscle till the day of the surgery. I’d not been told. I’m still very angry that, had things been done correctly in the first place, I would probably not be needing as much done as I’m now having.

I’m seriously considering going the medical negligence route because it’s really not right how I’ve been treated and it’s been compounded by lots of little errors along the way, even down to silly thing like being sent home after the first surgery with spare drain bottles that didn’t fit so we’re useless when I needed to change the drain.

Thanks for that Charys. I’ve bookmarked the link for future use. I’ve got to get thru the CT and Bone scan and results of those in the next couple of days before I think about anything else.