I was referred to Breast Clinic on 17 April and after a biopsy cancer was diagnosed in lymph nodes with none in breast. Since then I’ve had 3 x ultrasound, 2 x MRI, 1 x CT scan. Still no cancer in breast and has been declared Occult. Axillary Node Clearance scheduled for 3 July postponed from 2 July. My problem is that I’ve seen 4 different consultants, loads of different nurses and I feel no one is taking responsibility for me. I don’t even know who will be performing the op next week. I feel I’ve lost trust in them and I’m thinking of cancelling and asking for a second opinion from another hospital. Will I be classed as a troublemaker and get even worse treatment if I do that? The day of the op will be 84 days since I was referred.
Hi @magl it all sounds frustrating and worrying can’t you ring your breast nurse and raise your concerns and need to talk to someone in depth about your surgery , I was lucky my consultant did have 3 at one point , I asked for a meeting to go through everything also the preop team were helpful I know it’s worrying and scary time and you need to get your head around everything ,can always ring the help line they offer great advice as well , hope you get on well take care x
I haven’t been allotted a dedicated breast nurse. That is another thing I’m concerned about. I could leave a message on their answering machine but they only work office hours Mon-Fri and I’m suddenly gripped by huge doubts on Sunday afternoon. The pre-op consisted of a form I filled in on line. The first line warned that it would take up to an hour to fill in. And it did. I haven’t met anything so human as a “pre-op team”.
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Hi Magi sorry it all sounds frustrating for you , ring breast cancer now helpline in the morning and hospital , I don’t think your a trouble maker asking for second opinion are you in the uk , it’s your body and you need to feel happy with your treatment Xx
I was assigned a specific Breast Nurse but when I rang up upset she wasn’t helpful then when I rang up with questions she passed me onto someone else and I’ve never spoken to her since . It might be worth you ringing them as you might then get someone nice and helpful - I did .
You could also try ringing the helpline here in the morning on 0808 800 6000 from 8am they may be able to clarify a few things for you and give you pointers as to what to say etc. but this needs to be sorted out urgently.
The way it works at our Trust for surgeons is that sometimes one Consultant will operate on another Consultant’s patient which can be due to sickness / leave or if they work over more than one hospital it may depend on their other work such as clinics as to whether they can travel to a different site on a certain date . I imagine your date has been moved because of the doctors strike and they’ve had to accommodate you on another list - this will all be adding to your stress but in my experience every Trust has it’s logistical problems . The pre- operative form does sound like a very impersonal thing , it’s not something I’ve heard of before and I’m sure won’t have helped .
I understand your frustration and confusion and I know how easy it is to lose faith and trust in the system and your situation is particularly difficult. Asking for another opinion , at this point would probably delay your surgery further but if you feel you need more clarification and a proper sit down meeting to go through it all then it might be worth doing that either with your current team or a new one even at the cost of another slight delay so that you feel more confident and prepared .
Finally as a Health Care Professional who works in the Operating Theatre Dept. I would just say that if you are going to cancel give them enough to notice to allow someone else to have surgery instead .
Whatever you do I hope it goes well for you and that you are able to get more answers as the not knowing must be really getting to you . Xx
Yes I am in the UK. I shall take your advice and ring them in the morning.
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Please do as I think you need a proper consultation Good luck Xx
Hi magl
It sounds as if you have had a difficult and frustrating time since being referred to the breast clinic on the 17th April.
For some people, a diagnosis isn’t clear from initial tests and as you describe, this means further tests are needed which takes time. Occult breast cancer is rare, and several consultants and nurses may be involved in arranging and reviewing different tests. This may result in people feeling that no one is taking responsibility for them as you have described.
As @charlottebee and others have suggested, the best person to speak to would be your breast care nurse. You explain that you haven’t been allocated a dedicated breast care nurse, but we would encourage you to phone the breast care nurse team. It’s not unusual to have to leave a message as the breast care nurses are often seeing patients during the day. But they should pick up and respond to messages promptly. They can answer any questions you have, explain about the surgery in more detail and arrange, if possible, for you to speak to one of the surgeons. Do let them know any concerns you have about not having had a face-to-face pre op assessment.
People may request a second opinion for different reasons. It’s understandable you’re concerned that you might be classed as a troublemaker or get worse treatment if you decided to request a second opinion. However, this won’t happen as doctors are used to patients asking about this, and often ask their colleagues opinions about individual cases themselves.
A second opinion involves seeing another specialist doctor who will give their opinion on your diagnosis or treatment. While many people will feel confident with their treatment plan, some may request a second opinion to help them feel they are getting the most appropriate treatment and care. Whilst you don’t have a legal right to a second opinion, the General Medical Council, which regulates doctors, says that all doctors must ‘respect the patient’s right to seek a second opinion’. Because of this, doctors rarely refuse to arrange one.
Before you request a second opinion it might be helpful to talk to one of the breast care nurses about your current treatment and care.
You can talk to your GP or treatment team if you feel a second opinion would be helpful for you. They can refer you to an NHS team or a particular doctor. There are no guidelines about waiting times for a second opinion, which may lead to a further delay in starting treatment. Some people choose to pay for a second opinion from a private doctor. Seeing a specialist for a second opinion usually involves going to a different hospital. You may be asked if you have a particular hospital (or doctor) you would like to be referred to.
Having a second opinion doesn’t necessarily mean that the second specialist/ treatment team will offer different treatment options or take over your care. If you would like the doctor who has given the second opinion to treat you, this will need to be agreed by your GP and the hospital where you had your second opinion.
It can help to prepare for a second opinion by thinking about what you want to get out of the appointment, making a note of what you understand about your diagnosis/treatment plan and writing down the questions you want to ask.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.
If you haven’t already done so, we would encourage you to call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Val
Breast Care Nurse
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