Newly Diagnosed with what ????

I’m new to this forum having recently gone from been a fit and healthy 41 year old who’s never sick to being diagnosed with secondary breast cancer within a month. As you all know the news is devestating but the thing I’m struggling with is getting my doctors to give me my actual diagnosis. All my doctor has told is that my cancer has spread from my breast and lymph nodes into my chest cavity and that chemotherapy and surgery is not an option as it will not change the long term outcome. I have just started on palbociclib and letrazole with a four weekly injection of zoladex. At no point have I been told the stage or grade and whenever I raise the subject both with the oncologist and my breast care nurse I feel as though I am an inconvenience and they can’t wait to get me out of the room. I had to fill in a critical illness form for work and needed the diagnosis to which I was told “just put breast cancer” as though its nothing. My question is am I being over sensitive and how do I get them to give me this information??

Hi, just read your post, of course you have every right to know details of your diagnosis, I also was diagnosed with secondary cancer straight away over five years ago, which had spread to my liver and bones, I am under the care of a London hospital and they are excellent, never ever feel rushed at appointments even when the clinic is running late. I think the treatment you are having is targeted therapy which is what I also have every 3 weeks. Iv’e never had any surgery as there is no point if it has already spread, but i did have 6 rounds of chemotherapy when I was first diagnosed. I remain well, work and live life as normal. You could go to your GP as they well be sent copies of all info related to your condition. If you feel mentally strong enough I would make a complaint to the hospital, this is your life, sounds like they are treating you like a number. Most hospital have a PALS team attached, not sure what is stands for but I know they deal with complaints. Good luck x

Hi EV78

So sorry you have to find yourself on this part of the forum, somewhere none of us want to be part of, as you can imagine. We all understand the shock of being told you now have secondary breast cancer so you have come to the right place to get support, answers and advice.  Sometimes I think the oncology teams only give out the information they think the patient wants to know and in my experience (I’ve had several different consultants over the years at the same hospital) they don’t give all the detail out unless you ask or seem able to cope. However you are entitled to a copy of all your letters and scan reports etc and you can request this either via the consultants secretary or the consultant themselves if you are seeing them again soon. I am someone who likes to know what is going on and am happy to look things up on the internet once I know what I’m dealing with but there are many ladies who don’t so I think some oncologists are a bit sensitive to this, especially at first, until they know more about what you want to know. As has been said your GP should get copies of these letters, maybe not the actual scans, as your oncologist will have written to your GP, therefore you can request a copy from your GP if you can’t get through to the oncology department. You can ask to be included in all correspondence from this point onwards when you next see your oncologist as well so you are not chasing up all the time.

I hope this helps and good luck with your treatment, do check out any of the sections relating to secondary BC if you have any questions about the treatment, side effects, other aspects of living with SBC, someone is bound to be able to help.

Nicky x

Hi EB, there are no ‘stages’ when mets are involved. They are measured when you have your scans, and then your Onco can determine wether they have grown, or, hopefully shrunk. Generally this stage of cancer is known as stage 4 in some hospitals. In my hospital it is called metastatic , and we know that we are having care without cure, which is what should go on your form. Unfortunately once the little blighters get into the blood stream they have a habit of popping up where they are not wanted! I always think of that fair game where you hit a ratty thing on the head, only for it to pop up somewhere else! ?

I am on Letrozole and Palbociclib and my Onco is very pleased with my progress. I just carry on as normal, although I do get tired and have the odd joint twinge. I have 2 mets in each lung. I think you need to take someone with you to be your advocate , or champion, to help get answers to your satisfaction. I’m so sorry you feel ignored, very difficult on top of everything else. Best wishes. X