Dumped because I'm Stage 4?

Hi Harebelle I agree with a lot of what you have said. I think it’s important that everyone remembers that with cancer, it’s as much an emotional experience as a physical one. If we feel we’re being sidelined, then that affects how we deal with our treatment, scans, and other issues regarding our health. I admit that I feel like this at the moment. I asked my nurses if I could request an appointment with my oncologist, and was told he’s very busy and to leave it with them. Anyone who has read some of my most recent posts, will know that I have been struggling with my diagnosis and treatment plan for a while now. On Monday, when I explained that I believe I have only just accepted what I am now dealing with, the nurse’s reaction completely floored me! She actually said that if they hadn’t misdiagnosed me, that I wouldn’t have had my last surgery. I honestly didn’t know how to respond to that. Having been told that my cancer is a new primary, while I was being treated for secondary bowel cancer, I don’t consider my request for an appointment to be unreasonable. If I get no response, I will take it up with PALS. That will be a last resort, as I wasn’t raised to question people in the medical profession. Having said all of that, it was my oncologist who actually gave me a prognosis of 6 months without treatment back in December. When at a later date I questioned this, he admitted that this wasn’t based on any of my personal information! Sending you a big hug. 

Hi Jools, I am sorry to say the days of doing what you are told without questioning professionals are well past! To be honest, if I hadn't questioned the Head of the Eye Dept, a Professor, i asked for a second opinion and refused to talk or be seen by the "Big Boss" everyone was scared of, then I would have lost an eye! He actually NEVER looked at my eye, his Registrar did, then asked the boss questions then came back to me to "tell" me what they were going to do. I asked to speak to the Prof, face to face and the Registrar actually said "Oh he doesn't see patients" Then when I was being screened to go on a Trial, they look at everything. I saw a Consultant Ophthalmologist. Told him I had been diagnosed with Inflammation of the Eye 7 months ago. He asked if I had been sent for a scan, when I said no, he said then we will do one now, I don't think this is inflammation. Scan result "Malignant Melanoma" in my eye. He told me MM in the eye was usually a primary cancer and didn't usually spread from elsewhere in the body but obviously it is rare but does happen!

My advice would be to ask for a second opinion. Everyone is entitled to it. It is your body, your life, you have to have faith in the person treating you. If not please do something about it! Going through PALS can take a while, see someone else for a second opinion then contact them. It is terrible we have to do this but Needs Must! Please let us know how you get on!

Only when I queried why radiotherapy to the prostrate bed (prostrate removed) did I get a scan to prove cancer was elsewhere, I would be dealing with radiotherapy effects on bowel for no reason 

Hi

After my first appointment with my consultant when I was told the diagnosis, I have had 3 monthly appointments with different registrars. All they do is read what has been put on the screen. I assume this has been written by the consultant when he reviews my scans.

the registrar can’t usually answer any questions. I get more from my chemo nurse when she reviews me every 8 weeks. She also has the scan results weeks before I get an appointment through for the breast clinic.

I think you should ask to see your Oncologist, as you trust them more.

I think my consultant just has too many patients to get through, so I’m relegated to a registrar because there is nothing new to tell me.

Wow Annette! The more I get to know about your experiences, the more shocked I am at the difference in how we’re all treated. It feels too random and with virtually no consistency. I am now on the list to see my oncologist, and hope to find out on Monday, when that is likely to be. Apparently, he’s very busy, particularly in the next couple of weeks. I had asked the nurse about getting a referral to see a specialist, just as a one off. My support group have said that their oncologists consult with them to ensure they’re getting the right treatment. Thanks for your help.

Hi Jools, There is one thing I must say. My Oncologist is superb, I have always been seen by her at the Oncology Clinic. When I failed the Screening for the Trial Drug, because of my eye, she fought for me to get one of the Combo drugs they were using in the Trial Combo. She even secured the funds to pay for it!

The reason I told you the story about my eye was to emphasise not all Consultants are the same and they are all human, so can and do make mistakes, so it is up to us to stand up for ourselves if we think something is not right! Your GP can refer you for a second opinion! Good luck!

I understood your reason for sharing. I appreciate your guidance. I like and trust my oncologist, so hope it hasn’t come across that I don’t! My GP is amazing, so I’ll ask him about getting a second opinion. Thanks Annette.