"Breast Cancer Treatment and Anxiety"

About: Ayr Hospital / General Surgery Beatson West of Scotland Cancer Centre Crosshouse Hospital / General Surgery Scottish Ambulance Service / Patient Transport Service

(as the patient),

Back at the beginning of October I found a small lump in my left breast which felt hard and different to normal. The very next morning I phoned my GP for an emergency appointment. It was a locum GP but she was very good, examined me and said I think you need to be referred as an emergency especially as there was a lot of cancer in my family including breast cancer. I was told that I would be seen at the hospital within 7 to 10 days but I would get a letter but would be an idea to phone the hospital to get the date if I wanted to know quicker.

When I phoned the hospital I was actually shocked to find out that the waiting time for urgent referrals was in fact 6 to 8 weeks. This to me was just not acceptable. I was willing to go to either Ayr, Crosshouse or even Irvine.

I was told best thing to do was phone each day in case there was a cancellation as I was able to go with an hour’s notice. This I did, in fact I often phoned twice a day once in the morning and once early afternoon. I also put a complaint in to the complaints department. Eventually I did get an appointment through but it was for about 7 weeks after my GP referred me. I then got a cancellation for a mammogram scan on the Thursday but would have to wait till the following Tuesday to see the consultant to get my results.

I got a letter after I had had my mammogram scan from the complaints department to tell me they had secured an earlier appointment for me which I already knew about, but it was not them it was me phoning the department every day that secured it.

I had already explained on the phone to the appointment department that I suffered from stress and anxiety, especially with places and people I do not know. So the delay was making things a lot worse for me. The staff when I was having my mammogram were really fantastic; they allowed my partner to sit with me just outside the door until they were ready for me. As soon as I was finished they let him know so he could be with me again.

I then had to wait till the following Tuesday to get my results to be told I needed to have a scan done. I was told that there really was not anything to worry about but she just wanted to make sure but the consultant did say it is nothing sinister. So going for a scan was another hurdle I had to cope with but did so although my partner was not allowed down to this area, they did not understand that this was really hard for me.

When they did the scan they said that I would need a biopsy which shocked me as I was told it was nothing sinister. They had a wee bit of a problem getting enough but eventually managed it. I was then told to go get dressed and have a seat again in this area alone and they would bring me my paperwork to me to take back to the consultant. My partner was waiting at the top of the corridor for me and as soon as he saw me he said he knew something was wrong from my face. We went back to the consultant to be told we had to wait nearly two weeks for the results.

Getting the results was not a problem but then I was told I had to wait about 2 weeks to get a MRI scan was a big problem. Going for the MRI I again reminded them that I really suffer with anxiety, and once I got there things only got worse, as I was not told that I would need to have a needle and dye put in. My GP had given me tablets to take to try and calm me down before I went but I was so stressed by this stage.

After a few weeks again I was given the news that yes it was defo cancer and that I had a lump on my lymph glands as well so needed another scan where once again I had to get a biopsy. Again I had to wait for these results. Then finally all information was in and I thought great now I can get on with this and had decided that I just wanted both breasts removed to be told that was not going to happen. I had lobular cancer which is hard to trace and still feel it would have been better just to remove both breasts but my surgeon said no, she was just doing a lump removal and a few of my lymph glands. I was then booked into the hospital for the following Tuesday which would have been early December.

This was two months after I first noticed the lump and only because of my constant phoning and hassling people was I getting my treatment so quickly, which I actually don’t think was that quick anyway.

Hospital – Crosshouse in Kilmarnock day unit. I had phoned before and told them that I suffer with anxiety, but to be honest I don’t think people actually understand what this means. When I got there I was really nervous and once again had taken tablets my GP had given me to try keep me calm. The nurses said that a lot of people are nervous, but sorry anxiety is not just being nervous it is a whole lot more.

I smoke, I never hid this and it was not the time to try and stop or I would have been a whole lot worse. Even the staff when I was having my pre-op said best if I don’t on the day but if I can keep it to a minimum at least. Well I was up most of the night and only had 3 or 4 all night till I got the hospital which I was really proud of.

The anaesthetist came to see me and actually said in a very loud voice, “Are you stupid or something” that was all I needed, I just wanted to go home. I really was not comfortable at all and did not want this anymore. I was scared to be put to sleep in the first place but did not want this man near me. I was told to stop being silly this had to happen. My partner cuddled me and told them to give me space I was having a panic attack, as there was so many people around me by now. He calmed me down and they then gave me some more tablets to calm me down which made me very sleepy. I lay on the bed with him holding my hand. He then went out to have a cig and said he would be back in a min.

They came and took me to have the dye put in but when I came back my partner had gone. They told me he had gone home. I found out later that they had told him I had gone to surgery and he should go and they would phone him later. He never got to say goodbye to me and I had to wait another hour without him before I went down. What if something had happened? This we are both very cross about. I went home that night after my operation as I was not staying there. They really do not understand what it is like to really be scared.

I had problems with the operation as I had an infection and was on loads of strong antibiotics. This went on for a few weeks till I actually ended up in Ayr hospital between Christmas and New Year, again I only stayed in 24 hrs as they don’t understand the difference of nervous and anxiety.

Then was told that they felt chemo would not be a great advantage but I would need radiotherapy which would be up at the Beatson. Again another problem arose. How do I get there, I was too sore to drive, my partner is disabled and could not drive but I also could not get on public transport nor could I afford it. They said that they would provide transport.

Once again I had a problem as the ambulance team told me originally that I was not entitled to use them, that I could use public transport but that would have meant at least a 3 hour journey there and another 3 or 4 hour journey back depending on the time of day, plus I could not get on a bus or train for that length of time. Then they agreed yes, I could get an ambulance to pick me up but I then had a problem to get my partner to come with me as I was told by one person, yes I you have said you suffer with anxiety of new places and people but what is your medical need to have him as that is not a medical reason. Sorry it is. Anxiety is a mental health issue that ruins your life and is made worse with people not understanding it, and the medical staff should know this.

Up at the Beatson they were very good with me, once they understood how nervous and how stressed I was. If there was a long delay they would come out and say why don’t you go for a coffee or something and come back in an hour. The staff were fantastic really can’t fault them. My skin was badly damaged as I knew it would be as I suffer with dry skin at the best of times, and they got the nurse to see to me and there were people I could talk to as well.

At the end of my treatment I was told to see my practice nurse for a few weeks until I healed and that I would be called back to Crosshouse hospital for a review in a few weeks. When I asked how long, I was told it is normally 6 weeks but I’d get a letter before that. It has now been over 10 weeks since my radiotherapy has finished and I have still not heard from Crosshouse. I am still sore, my skin is still not healed and I really don’t know where to go to now.

If I get cancer again I will not be having treatment, as the whole experience for me has been a nightmare.

Sorry this has been so long but really wanted my story out there.

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Responses

Response from Martin Esposito, Patient Experience Manager, Corporate Affairs and Engagement Department, Scottish Ambulance Service

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Dear Jan50

Thank you so much for sharing your story. You apologise for the length of your story but I found reading about your experience intriguing and extremely insightful. Your story highlights so many areas for us to learn from but most importantly to me, demonstrates the importance and the real value of the patient experience.

From finding a lump, through to a diagnosis of, and treatment of cancer must be one of the most worrying and harrowing experiences one can have and, as your story demonstrates, the patient experience can have a big impact on the care.

From the ambulance perspective, as a clinical service we do assess all requests for our patient transport service to try and ensure that there is a clinical need. Whilst we do get it right in the majority of cases, we do sometimes get it wrong and I am so sorry that this happened to you. We do also try to accommodate family members or escorts where there is a need but as you can appreciate sometimes there is simply no room for this on our ambulances.

We are committed to developing as a person-centred ambulance service and we can only do this by acting on the feedback we receive. Therefore, I would like to assure you that I will pass your feedback to our Patient Transport Service team.

I wish you well in the future

Martin.

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Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

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Dear Jan50,

I have been mulling over your story for a wee while now and I have really found it difficult to respond to you in a way that you will feel addresses your story adequately.

Like Martin, I agree your story was very insightful and that there is so much for us to learn from it. It is likely that many of us really don’t understand how your anxiety makes you feel in these already stressful situations and I can’t begin to fully understand how each of these chinks in the chain added to your distress and anxiety.

I could go on at length and try to explain each delay e.g. sometimes delays are unavoidable, the result of a breast biopsy can take up to 2 weeks because of the process required to analyse the sample. The waiting times between each step are not helpful, particularly if you are suffering anxiety to start with and I am not sure an analysis of gaps on a step-by-step will be helpful to you at this point. Should you wish more detail, I am happy to have a chat if you wish a fuller explanation.

What strikes me most from your story is that we could have been more compassionate and understanding of your situation and I am truly sorry that at times we fell short of that.

As Martin said, everything you have experienced; breast cancer diagnosis, treatment, radiotherapy etc. etc. must be one of the most difficult situations to live through. I am sorry this was so traumatic for you and that you feel strongly you would not take treatment if this was to be needed at a later date. I hope, given time that you can change your mind and seek whatever help you need in any circumstances to keep you healthy. I am glad some of your care was good and I hope you are satisfied with the level of this response to your very detailed story.

One thing I can do, I can look into your missing appointment to understand what is happening with it. If you would like me to do this, please email me or call me and give me your name and date of birth and I will look into this further for you. If you do want to contact me, you can email me on eunice.goodwin@aapct.scot.nhs.uk or phone me on 01563 826222.

I will also make sure you story is passed to the managers of the areas within your story for their consideration to enable their teams to reflect on your experience.

I wish you all the best of health.

Kind regards,

Eunice

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Update posted by Jan50 (the patient)

Thanks for both responses and my story was more to ask people to think. we are not just a number but people who do have feelings and yes finding out you have cancer is stressfull but one I was quite ok with it was the path that followed and was actually quite shocked that people really dont understand mental issues With all the advertising about mental issues and trying to understand people for medical staff not to I find really quite hard to follow and I think that is the area that I think needs re- assessed more than anything.

As to my missing appointments well I was at crosshouse today. I actually got an appointment in the post today to go today. That was great notice. When I asked them when I got there they said the Beatson only notified them on 14th April but today is the 28th and it has still taken that long?

Today well was not sure what it was for, but told them how I was feeling and how I was still sore and skin was still brown and that my breast and nipple were still odd shape and underarm and sholder are still sore. Doctor was very nice took time explaining stuff that tbh I feel should of been explained before eg my skin my may well never return to normal.

I have to now wait 3 weeks to see how things progress and my breast care nurse will contact me and if be I am to go back to the surgeon to see what can be done.

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran

picture of Eunice Goodwin

Dear Jan 50,

Yes, I agree, this is something we can reflect on and take more note of. Again, can I say I am sorry your recent experiences did not fully take your anxiety and stress into account? I will pass this to the teams for their contemplation. Thank you for bring this to our attention, we really do apprecite your feedback. I hope you recover well from your treatment.

Best wishes,

Eunice

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