"Being treated for Breast Cancer at Manor Hospital Walsall"

In January I attended a routine Mammogram screening at a mobile unit on Asda’s car park. A few days later I received a letter from Manor Hospital asking me to attend for further screening etc in February.

I had the second mammogram screening and the nurses were looking at something they had found in my right breast that was about 1cm in size that they were not happy with so they decided to the carry out ultra sound screening they advised that they were not so concerned at this stage but would take biopsies as a matter of precaution. Biopsies were then taken and I was advised I would get the results in 2 weeks.

About a week later I was advised that the biopsies needed to be done again as all they had managed to remove before was tissue and fat. A letter was sent out by the Hospital to my old address of 10 years ago confirming my next appointment on mid Feb. Luckily enough the person living there managed to get the letter to me. I asked the hospital why they were sending out letters to 2 different addresses and they said they were not quite sure? Further biopsies were then taken. I was advised that this procedure should take about 10-15 minutes. It ended up taking about 55 minutes of me being sat on a mammogram machine have numerous biopsies taken. It was also decided that because they were having such difficulty in finding the area they were concerned with that they would insert a metal clip next to the area so that if I needed to go back again they would be able to locate the clip easily. I was told that the results would be ready a week later and to telephone for them. I telephone on the date given several times to try and speak to the breast nurse and kept leaving messages, but no one called back. The next day I tried phoning again but again I just kept leaving messages and no one called me back. Two days later I received a letter asking me to attend the hospital on mid March. I telephoned the hospital to ask what this appointment was for and I was told that it was for Breast Screening? I explained that I have already had screening done on 2 occasions and asked if they were getting confused as they seemed to have me set up on the system twice with 2 different addresses, I was told that they would look into it then someone would call me back. Later that afternoon one of the breast nurses called back and confirmed that I had breast cancer.

I attended the hospital on mid March to see the consultant who explained that I was booked in for surgery early April. I was advised that a section would be taken from my right breast together with 2-3 glands from under my arm using the probe which meant I needed to have a dye injection. The consultant asked me if I knew anyone that had had breast cancer and I told him that my sister in law had, I went onto explain that she had showed me her scars and that they were quite horrific as they had left her with indents in her breast. I was assured that I would have no such indents and that I would just be left with a scar.

The day before the planned surgery I realised there was a message on my answerphone from the hospital left the day before. A breast nurse explained that the probe they were going to use was broken and that she needed to speak to me before my surgery she said that she would call back. I tried all afternoon to call and speak to her but just kept leaving messages. I tried phoning the switchboard and even phoned the consultants secretary who said I needed to speak to a breast nurse. I carried on trying to call her but when I finally managed to speak to someone I was told that the relevant staff had gone home. I phoned the hospital again at 5pm it was answered! She explained that the probe was broken but said that surgery would still go ahead, but instead of arriving at the hospital at 9am for the dye injection (needed with the probe) to turn up at 10am and go to Route 126.

I arrived the following day and reported to Route 126 I sat there while everyone else in the waiting area came and went, after 1 hour 20 mins I went back up to the desk to remind them that I was still there. I was then taken into a room with 3 nurses to be put on a Mammogram to have the wire inserted. The point of the wire is inserted next to the clip so that the surgeon follows the wire to the tip then removes that and the surrounding area. One of the nurses was busy with the equipment while the other 2 (one of whom was lovely and chatting away to me) began trying to place my left breast onto the mammogram, I suggested to them that they try the right breast! The wire was then inserted into my right breast and I could see that it was definitely right next to the clip.

I was then sent for a scan. The young nurse there advised me that I was no longer to go to Ward 23 (Breast Ward) as arranged but instead I was to go to Ward 26(a day ward). After the scan the young nurse came to me again and advised that the probe was fixed she said that I must now go straight to Ward 26. I said that I believed I needed to go for the dye injection if the probe was going to be used. She said no and kept saying that I needed to go straight to Ward 26, I told her that I believed you could not use the probe unless you had the injection first, she said that she would check. She came back and said that I was right she told me that I needed to run over to Imaging by A&E.

I arrived at Imaging and was taken through to have the injection. When the nurse inserted the needle into my breast just above the nipple it was quite painful however about halfway through I suddenly became in really bad pain. I am not sure what happened whether or not she slipped but I was left with a hole just above my nipple. I did get a nurse to look at this after the operation and she confirmed that the scar from the needle was far worse than the scar I had from the actual surgery. I have since spoken to the Consultant and asked why this injection had left me with a hole, he said he had no idea and could not answer that.

My husband and I then made our way to Ward 26. The nurse that let me in explained that they were expecting me but they did not have my notes, she took me to my bed and closed the curtains. She came back again to ask what I was in for, then said they were still waiting for my notes. She returned again to take my ob’s then wrote them on what looked like a piece of scrap paper, my husband said that he thought she was writing on the back of a cigarette box. She came back again to ask me if I knew where my notes were! I told her that I was not sure but the last time I remembered seeing them was at Route 126 when I had the wire inserted. My husband said to me you watch I bet that in 3 minutes the curtains will open and she will be back asking where Route 126 is. About 2 ½ minutes later the curtain opened and she asked me where Route 126 was! At this point I suggested that I send my husband as he knows where it is and perhaps he could fetch my notes! She said there was no need for him to go. Shortly after my notes finally arrived. Another nurse came with my notes to take my ob’s again, my husband asked her whether or not anyone here actually had any idea what they were doing, the nurse replied that I can assure you I know exactly what I am doing and now you are here everything will run smoothly.

As my husband was leaving he told me that he did not feel at all comfortable about leaving me there he said he could not believe how no one seemed to know what they were doing it was totally disorganised and incompetent, he said he thought the place was a total shambles! ! !

After my surgery I was taken back to Ward 26 after a short while I confirmed to the nurse that I would like to go home if this was ok, I was told yes so my husband came to pick me up. It was not until after my second operation when the nurse came over to speak to me regarding pain relief, do’s and don’t’s etc before discharging me that I thought when I was discharged after the 1st operation no one spoke to me or discussed anything I was just sent home!

A couple of weeks later I had an appointment with the consultant to get my results and was advised that the cancer had not spread to the glands under my arm then explained the section that they had removed from my breast had no cancer and the bead which they had implanted after the 2nd lot of biopsies was also not there. He advised that I would need another operation to remove the surrounding area. I explained that I was in so much pain still from the 1st operation and that my breast had swollen to almost twice the size it should be, I asked if there was any way they could do any sort of scan – MRI etc to see if the cancer was still there to avoid me having a further operation. He advised that this was not possible as there was no scan they could give me that would be accurate enough to pick up cancer. So I returned for my second operation I had to just go to Ward 26 on my arrival, thankfully there was no confusion with my notes etc and everything ran quite smoothly.

In early May I visited to get my results I was most shocked to be told that yet again no cancer or the clip were in the 2nd section that had been removed. I was asked to attend for a scan to see if the clip was still inside my breast. It was at this stage that I decided to tell the consultant of all the events that took place on the day of my 1st surgery, he could hardly believe what I was telling him and asked me to put it all in writing for him. We asked him what he would have done if it was his wife he replied that he would have got her out of the hospital and would not have let them operate on her.

I had a scan which would did not pick up on the clip so I then had 2 mammograms taken to see if that could detect the clip, these showed that the clip was not there, however due to all of the swelling, bruising and fluid caused by the 2 operations the images were not very clear. I then went to see the consultant and we discussed the fact that we believed the clip was not inside the breast. I asked if he could categorically state that I actually had breast cancer. He advised that according to my biopsies I did but I pointed out to him that in both sections he had removed from my breast there was no cancer but also no clip. I then asked is there any way my biopsies could have been mixed up with someone else’s or even my results especially given that there was no clip and the complete incompetence within all of the other departments I had visited, the consultant said that they were not. It was at this stage that the consultant suggested that I make an Official Complaint against the Hospital, as this way more notice would be taken rather than him informing the various departments. I went straight to the PALS Department who took full details and said a complaint would be filed etc.

I visited the consultant again, and was advised that I was to have an ultra sound scan to make sure the clip was still not inside me, the scan took place but it was felt that they should put me on a Mammogram again to make sure. Before this I had to have the fluid removed from my breast so that they could get a clearer image. This resulted in 5 big syringes being filed with fluid, which left me with a little shrivelled breast. I was then given 3 different mammograms. I had to go back into see the consultant who explained that they had had a case like mine before and what they did was to give an MRI scan which would detect cancer and the clip if it is still there then MRI scans every 6 months. He did say that 1 theory is that the cancer may have been removed in full when they did the biopsies or it is still in there in which case I would need another operation! He did explain that although this was very rare for this to happen with the bead that there were other who this had since happened to. When I returned home and looked at myself properly I could see that my right breast was now about 1/3 smaller than the left one plus I have been left with a big indent (something I was assured I would not have) across the whole scar which is about 1” above my nipple and 2” in length. I also have 2 indents in the side of my breast – this must have been where the glands were removed from.

Early June I attended another appointment at the hospital to arrange my radio therapy pending the results of my MRI scan. I was told to phone the breast nurses on a week later to get my results.

I attended the hospital for an MRI scan.

I phoned the breast nurses on the date given and left a message on the answer phone asking if someone would call me back with my results, no call was received. The next day I called and left another message. That afternoon a breast nurse called back she said that they had looked at the images from the MRI scan but they were not clear as I believe they had carried out just the basic scan, she explained that they need to do another scan using dye (contrast) which would give a clear image. I asked why they had not just arranged this scan in the 1st place given the fact that I needed an MRI scan to get a clear image as nothing else could give this! She said that she did not know all she knew was that she had been asked to call me and advise that they have contacted the MRI department to arrange a further scan.

After this call I telephoned the PALS department to update them. They said that they would go up to the department and that would make sure that someone from the department called me back. I spoke about possibly moving to another hospital but they did point out that this could possibly delay things, I pointed out that this had been going on since January and that the hospital cannot even get the basics right like a telephone call! I also said that I thought that having breast cancer would be stressful but that is not the real problem it is dealing or trying to deal with the hospital that is the real stressful thing!

It is now Tuesday 17th June no phone call has been received from the hospital and no letter to confirm a further MRI scan. I have telephoned the PALS department again this time I spoke to someone else who promised to speak to the consultant’s secretary and to chase up the MRI scan.

I am now left feeling completely distressed with the whole situation and the hospital seem to be avoiding me. It is so hard to try and function throughout the day – everyday. I am now taking Tamoxifen tablets that are giving me all sorts of side effects, these tablets are to be taken for 5 years and I will be having radio therapy but I am not sure if I ever had breast cancer or possibly if I still have it? All I do know for certain is that I have been left with a completely disfigured breast and that I need to keep a bra on constantly as I do not want my husband to see it, also I don’t even want to see it myself and I am going to need reconstructive surgery to make my breast look normal again. Plus I am still in so much pain with my breast and under my arm. My arm has hardly any strength and I am very limited to what I can do with it.