I was diagnosed in July with her triple positive cancer. I am still waiting for CT scan of the head results.
I found the whole process very messy and confusing. For example:
- the cancer was big on the mammogram and in the ultrasound. why don't do biopsy of sentinel node at the same time.
- I was referred to the oncologist 40 days later by the surgeon. I was not told clearly I wouldn't be operated without chemo first though.
- the surgeon keeps booking appointments to tell me the same all the time, that they want masectomy even if the tumour is reduced in the next year. We don't even know if the chemo will work
- I was booked straight away all the chemotherapy even if it was not results of CT scan or heart check.
- the tests were very spread, like one week MRI breast. After MRI breast you qualified for CT scan chest. To get checked the whole body, I had to beg and threaten to go private. Why not to do all the tests in one or two weeks? Why not to start chemo with the whole information?
- they decide treatments without results or with partial tests. You carry on waiting for results all the time living in anxiety.
- the surgeon and the oncologist don't email results to each other. They keep calling from everywhere: the GP cancer support, the surgeon nurse... They always finish the conversation I will let the doctor know. You don't know what it is told to the doctor. After the doctor talks to you and says the same that he/she has a board of doctors. They make you wait without shame.
- it looks to me that they don't want to discover any metastasis, like they want to fix your cancer one by one.
I am very uneducated and not very smart either. It looks to me a whole waste of time and money. All the hours paid to this people to talk rubbish is the same cost as a petscan that will stay in your records for life. These people talk all this rubbish and send you a small report by email that you just don't understand.
Sorry for moaning. So how do you manage these situations? What advice could you give me? If the cancer becomes metastatic, do you just keep going to all these appointments and jumping hulahops? Should I lower my expectations as it is free? Is this my personal experience or does it happens to you as well?
Any advice and constructive feedback welcome.
I'm sorry to read what a difficult time you've had getting a diagnosis and treatment.
My 'journey' from diagnosis to treatment went like this.
The hospital I attended had a one stop clinic so I first had an enhanced mammogram followed by a physical examination and then an ultrasound. Unfortunately this showed a lump, as well as an area of calcification, so I then had a biopsy of the lump.
A few days later I saw the breast surgeon and she told me that the results confirmed that the lump was cancerous. An appointment was made for me to have a lumpectomy and sentinel lymph node biopsy (SLNB) 3 weeks later.
About 5 weeks after the operation I met with the oncologist who told me that I would need chemotherapy and radiotherapy to prevent the cancer from returning. I noticed that you said you've been told that you'll have chemo first and I know that is often the case if they want to shrink the tumour before surgery.
You ask why the SLNB isn't done at the same time as a mammogram and ultrasound. A SLNB has to be done under a general anaesthetic as it's a surgical operation where the lymph nodes are removed from your body and then sent off to the pathology laboratories.
The advice I would give you is to speak to your breast cancer nurse (BCN) either over the phone or, even better, in person. You can explain to her the problems you're having in trying to get treatment started. The BCNs are usually excellent and part of their job is to help you understand what's happening and why and to also liaise between you and your consultant.
I hope you don't have too much longer to wait.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Yes, I was lucky that my breast cancer was an early stage and small enough that the surgeon was confident she could remove it by lumpectomy rather than having a mastectomy.
No I didn't have any scans. When I saw the oncologist I did ask the nurse afterwards if I should be having any scans but she said that this would have been discussed at the multidisciplinary team (MDT) meeting and if the oncologist thought I needed a scan one would have been arranged.
What test did you want that the surgeon's nurse say you couldn't have and why did they say you couldn't have it? The breast cancer team have to follow NICE guidelines for treatment of breast cancer.
I have a phone number to contact the breast cancer nurses on. If I phone first thing in the morning I can usually speak to someone immediately but if it's later in the day then they are with patients so I have to leave a message and they then get back at the end of the day or the following morning. Do you have a phone number to call?
You talk about changing doctors and I assume that you mean changing your breast cancer consultant. Have you thought about asking for a second opinion? This can be arranged either via your GP or your hospital team.
Another thought is that you could speak to the Patient Advisory and Liaison Service (PALS) at the hospital you're being treated at. All hospitals have this department and part of their job is to look into problems you might be having with your treatment.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
I'm afraid I've run out of ideas to help you move your treatment forward 
It might be an idea to also post in the breast cancer group, which I can see you've joined and posted in before. There may be someone there who can suggest something else that helped them get treatment started.
If you don't mind me asking, what have you been told is holding up your treatment?
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Oh sorry, I misread your post and thought that you were struggling to get treatment.
I haven't had scans so don't know how long results usually take. I know you don't think the BCNs are helpful so perhaps you could ring your consultant's secretary instead and ask her if the results are back yet and when you'll hear. The secretaries aren't allowed to tell you the results but they can look to see if they're back and if the consultant has seen them.
I hope you don't have too much longer to wait.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
