"Quality of care received after having been diagnosed with breast cancer"

I was diagnosed with breast cancer in October 2013. I found my lump myself and was told that the mammogram that had been done at the hospital, did not show the tumor 20 minutes prior to the ultrasound that was done to do the biopsy. The first operation I had I have no complaints about other than it would have been good to see the surgeon post-operatively. At the 2 week follow-up I was informed that a cavity shave had to be done as the margins weren't clear. As can be imagined, this is not the most pleasant of times.

At that followup I asked that all being well, and I had not problems with the wound, would I be able to miss the 2 week follow-up. We have a property in Spain and my husband was there for a few months and I would have liked to recover before further treatment commenced. I was happy to receive the results via telephone and would go back should there have been any need to. The nurse said that they had already checked and there was an oncology clinic on Christmas eve and had already booked me in on that, so from that perspective it would be acceptable. The surgeon agreed at that time.

On the morning when the surgeon came to get my consent he said the operation would last only 20 minutes and then I'd be out and done. I asked when I was due to start the anastrazole and he replied they would give me the prescription at the 2 week follow-up - the one they had already agreed that I could miss. I reminded them of that and they said they would sort it out for me to have once I left the hospital. Post surgery in the recovery room, my first recollection was of a nurse saying to me that I had been in surgery for 50 min and that I was going to have a lot of bruising - with the emphasis on 'a lot'. They then also said that they had prescribed morphine for me should I need it. I did not need or have any after the first operation.

As I was in a lot of pain I had the morphine which then knocked me out. I remember being told to call someone to come and collect me and my daughter duly came and took me home. I was asked to sign all sorts of paperwork, which I did whilst well under the influence of the morphine (surely this is not even legal? ? ) No sign of my surgeon or the prescription they had promised me. But, being under the influence of the morphine, it was not something that I thought to do anything about. My daughter was quite concerned as I kept falling asleep and I did even fall asleep with a mouth full of food, and she helped me to bed. This was on a Thursday.

I had my flight booked to Spain for the following Wednesday. On the Friday I realized about the prescription and I also noticed what appeared to be fingerprint bruising (four very clear bruises) on my right arm and above the dressings there was also a lot of bruising. I decided to leave asking for the prescription until the Monday, which I did. I phoned the clinic, only to have the answerphone pick up. I left a message explaining but got no reply on the Monday during the day. I sent an email Monday evening saying I did not want to be a nuisance but my flight was on Wednesday and I would like to get it sorted out before then. Tuesday afternoon I got a recorded message on my mobile saying they could not possibly allow me to miss the follow-up appointment as I may have to have another operation!

I tried to ring them back, but again, just the answerphone. This, along with what had obviously gone on in theater, caused a great deal of anguish, not only to me, but to my family too! We decided that I would go to Spain just for the week and duly booked a flight back in time for the follow-up appointment the following Friday. In Spain, when I was able to remove the dressing, I noticed another scar, where obviously I'd had a drain inserted too. I know that this is normal, but it would have been so much better to have had the surgeon explain what had happened, post-op! On the Wednesday before leaving for my follow-up, I received a phone call from the nurse to ask if I was still planning on going back to the UK for the follow-up. My retort was, of course I am, as you has expressly told me I had to. They then said, that actually, all was well and that my surgeon would not be there anyway so I didn't have to return. A flight wasted, although we were all relieved.

About the rest of the immediate care I have no complaints. I only had radio therapy as Chemotherapy was presented only as an option only and with only a 5% chance of any benefit. I have been attending all the appointments and checks as they have been scheduled.

My next complaint is about the follow-up appointments that I have been having. As my original doctor left shortly after my radio therapy treatment began, I never saw him again and a new one took over. The appointments all followed a very similar format which was; a quick feel for any lumps in my breasts and under my arms and then being told all is well and see me next time. I never saw the same person twice. Only once did one of the SpRs check any other areas other than under my arms for enlarged lymph nodes. No other tests were done in relation to the actual cancer other than a yearly mammogram. At my last appointment, I asked if at any time they did anything other than just the mammogram - which I didn't entirely trust as it didn't pick up the lump in the first instance - and by an obviously surprised SpR I was told no, they don't do anything else. I asked not even take any bloods for markers. Again no, was the answer. I then asked how they would know if the cancer had spread at all and they were clearly taken aback as they physically stepped back, they replied that if it had spread, it would be too late to do anything anyway! !

Now I know that they may have had a point, but surely that is not entirely correct! I also know from many other women in different parts of the country - as well as in different countries, that there are many more tests done other than a not entirely reliable mammogram. I brooded over this a few months and began to wonder what the point was of my going. I found the lump, I can check under my arms myself - without having to sit there with my boobs hanging out whilst having a conversation and it would save the NHS money as, in my opinion, it is a wasted appointment. In January I wrote my doctor an email - I found their details online, and I copied in the Director of breast cancer services, although today I cannot find their name on the website. I mentioned my experiences thus far, leaving out the part that involved my first doctor, and said that unless they could tell me they would do anything else, I did not see the point of going and would cancel my forthcoming appointment in September. As yet, I have not heard anything from them at all.

Whilst I am not concerned for myself as I at least have some idea of what to do and where to check, there will be many women who don't and if they are receiving the same lack of care and compassion, I hope that this at least might help change things for them a little bit. I understand that the NHS is under huge pressure and this type of appointment merely wastes time and is of very little value in the treatment or management of breast cancer. At the very least checking for other enlarged lymph nodes other than the axillary nodes and maybe the occasional blood test would be more useful. And surely, if the mammogram didn't pick the tumor up once, there is a very good chance that it could fail again....maybe ultrasound for those people where they have been let down by the mammogram?

Being diagnosed with cancer is not a pleasant experience - not only for the patient, but also for the family who all stand by looking on helplessly. Therefore, thinking about issues that are clearly not right, is the last thing on your mind and one does not want to undertake any more battles. The battle ahead should be saved for recovery and not wasted on lack of care or treatment. And this is mainly the reason that I had not done anything about it before. It has passed and cannot be changed, but hopefully for the future, it may make a difference to someone else and they would not have to concern themselves with anything other than recovering.