Q is for… Quacks and Nurses

20 Nov

Your main medical team will be made up of your GP, surgeon, oncologist and lots of wonderful nurses. Depending on your diagnosis and treatment plan you might get some other specialists added on along the way. I now have a cardiologist, opthamologist, physiotherapist and dermatologist thrown into the mix.

I’ll discuss what they do briefly – but think the most important advice is to ensure that you have a team looking after you that you trust and believe in. You’re not dealing with a cold or tummy bug here. Your life is in their hands and you will be relying on them for a long while. A cancer diagnosis is an extremely difficult time – both physically and emotionally – and if you don’t like or trust one of your consultants, it will make the whole process much more difficult. You are entitled to second opinions and to change consultant to one you feel more comfortable with. In most countries it is the norm to shop around a bit – but in the UK not many people realise they are able to.

GP

GP. Your doctor will have been the first contact regarding your original symptom and will be the one that will have referred you to the specialists for further tests. My GP is LOVELY. Really empathetic and sensitive and thorough. When you are receiving treatment you will be having more regular contact with your oncologist,  surgeon and breast care nurse who might be the most appropriate contact point for any symptoms or side-effects that you need to discuss. However, your GP will be able to help you with medication for any adverse side-effects suffered during treatment and after surgery, and for any concerns following treatment if the wait to see your specialist is too long. Mine gave me all sorts of goodies to help with some of my side-effects during chemo.

SurgeonSurgeon. Your surgeon usually be the one to diagnose you, perform your surgery and discuss your pathology with you. Some only do the taking away of bad stuff and don’t get involved in the reconstructive side of your surgery, in which case you will also see a plastic surgeon (if you are interested in reconstruction). Oncoplastic surgeons specialise in both the removal of tissue and also in the aesthetics. My initial experience with my allocated surgeon wasn’t great. He misdiagnosed me for months, dismissed me with antibiotics and assured me that he’d seen thousands of cases of breast cancer – and mine definitely wasn’t… It wasn’t until I broke down in tears and begged for a biopsy that I was given one. Then when he finally had to break the news he gave me the most sugar-coated version of my true diagnosis that I just couldn’t believe the true extent when I finally discussed it with my oncologist. As a result I had no faith in him. I needed someone who would give it to me straight and whom I could trust.

As I had my chemo prior to surgery this gave me a good few months to get a number of opinions about what surgery to have and to meet lots of other surgeons. Some wouldn’t do immediate reconstruction, others would. Others wouldn’t consider bilateral surgery, while again, others would. I was adamant that I wanted both sides done with immediate reconstruction. In the end, I opted to go with a fantastic oncoplastic surgeon who did a presentation on breast reconstruction at a Younger Women’s Breast Cancer Care Forum I went to. I met a few of her patients who raved about her work and showed me the results. They looked fantastic.

Some surgeons will explain things on a need-to-know basis and not inundate you with too much information about your pathology unless you want to know everything (like me!). So think about what you do, and do not, want to know and whether you want copies of the full reports or if knowing too much will confuse and upset you. The most basic things you might want to know will be whether the tumour is receptive to oestrogen or not (ER+) and if it is HER2+++ as this will give you an idea of what to expect when it comes to treatment. You might also want to know the size and type of tumour, the number of lymph nodes involved and what this means for your prognosis. Or you might decide ignorance is bliss! Breast Cancer Care do a fantastic guide to understanding your pathology report. Click here to see it. Your surgeon will either meet your oncologist at a multidisciplinary meeting to discuss your case – or be in touch with them if they work at different hospitals, but your surgeon probably wont know the ins and outs of your treatment plan. It will be your oncologist who will discuss this with you. The number of appointments you have with your surgeon will depend on your type of surgery and whether you are having treatment prior to, or after your operation.

OncologistOncologist. This is your cancer specialist who will devise your treatment plan and explain it to you. Again, you will want to think carefully about how much you want them to tell you about your diagnosis, pathology and prognosis. During your first meeting you might want to get an understanding of what is to come – whether you will need chemotherapy, radiotherapy, hormone therapy and any other targeted therapies such as Herceptin. They will be able to discuss potential side-effects and prepare you for what is to come. Once you know what to expect, you can start to get your head around it, and suddenly you regain a bit more control as you are given your chance to fight back.

During treatment you will have regular appointments with your oncologist to discuss the drugs, treatments and side-effects. Once your treatment has been completed you will then go to 6-monthly appointments, followed by annual appointments.

I was assigned an oncologist who scared the cr*p out of me the first time I met him as my surgeon had sugar-coated my diagnosis so much. My oncologist then gave it to me straight and told me it was a very aggressive form of breast cancer. I left feeling very scared and upset but actually respect the fact that he gave it to me straight, and as such, I trust and believe what he tells me. Following my initial appointment, I did get a second opinion in London with an oncologist who specialises in  younger women with breast cancer just to discuss the treatment plan I had been given. He agreed with it and said it would have been what he would have prescribed, and as such, I left feeling with 100% confidence in my treatment plan.

Others. The radiologist is the one who does the x-rays and scans. I was also assigned a cardiologist to monitor my heart as I was given Herceptin which is toxic to the heart and can seriously affect some people. I had regular echocardiograms (see X is for… X-Rays, Tests and Scans) and unfortunately my heart did suffer and my treatment was stopped after 5 months. I was then put on a variety of heart medication with the aim of strengthening my heart so I could restart the medication, but unfortunately my heart is still not strong enough. My eyesight was affected somehow during treatment – they don’t know if it was the chemo, the steroids or the Tamoxifen – so I now see an opthamologist. My back is also very sore as a result of my muscles being moved around during surgery and due to my muscles being weaker as a result of chemotherapy, so I have an oncology physiotherapist sorting that out. My little team is completed by a dermatologist as I developed a few dodgy-looking mole-type things, but they have decided it’s nothing serious, but are just keeping an eye on me.

Breast Care NurseNurses. I was super lucky as my Macmillan Breast Care Nurse was an absolute godsend. She was present at my diagnosis and spoke to Mr B and me for a couple of hours afterwards, she attended at all of my subsequent appointments and always took me aside after each one to see how I was feeling and if I had any questions. She held my hand when I was being anaesthetised for my first surgery. She called me at home to see how I was doing during my treatment – and even called my husband too to ask how he was coping. She is always there to answer any queries or questions I have. She helped make the whole thing a bit more bearable and I am extremely grateful to her and Macmillan as a result.

However, I have since learned that most people don’t have such supportive nurses and sometimes struggle to even get hold of them which leads to confusion as to who to turn to with questions about treatment or surgery or with any health worries.  They should be your first stop. If you can’t get hold of them, then contacting your oncologist, surgeon or GP (depending on the nature of the issue) would be my next stop. However, if you have some very general questions or niggles or are after a bit of support or reassurance then I can highly recommend the helplines at Macmillan or Breast Cancer Care. I used the helpline at Breast Cancer Care a few times and always spoke to a qualified breast care nurse – a few of whom had had breast cancer themselves. A couple of times I had specific questions about my treatment and was looking for a better understanding. Other times I called when I was feeling low and just needed a cry and a chat about what I was going through. They were BRILLIANT. It is so important to feel supported during such a difficult time – and if your medial team aren’t providing this support (shame on them) – these fantastic charities can fill that gap for you.

I’d like to say a massive thank you to my chemo nurses who made me so relaxed and comfortable when I was, quite frankly, cr*pping myself – and all of the nurses who looked after me during my surgeries.

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One Response to “Q is for… Quacks and Nurses”

  1. Air Optix Night & Day May 7, 2013 at 11:39 am #

    Absoluter netter Blog. Werde jetzt öfter reinschauen Vielen Dank und Grüsse aus Köln

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