Hi there I’m new to the forum, I was diagnosed with breast cancer in March this year, first I was told I had one tumour and it was stage 1, then after many tests turns out I have multiple tumours in breast and cancer in my lymph nodes which I was told is stage 3 cancer. My surgery is not till June and I have no oncology team as other people in the forum mention, basically I have had nobody to speak to other than my 2 diagnosis appointments that were very short- 20 mins. Is this normal? Is it also safe to wait 3 months for surgery when it’s in my lymph nodes? Worried that it could spread further. Thanks for any replies, feel like this is the best forum to ask people going through this.
Hi Janet
I’m so sorry you find yourself in this situation. The fear and and anxiety in the early days of diagnosis are bad enough but to be left in a kind of limbo with such a diagnosis without support is wrong. Every patient is assigned a breast care nurse. You must have one but maybe her role wasn’t clarified for you. The simplest thing to do is ring and ask to be put through to the breast care nurses (it’ll go to answerphone but they always ring back. You don’t have to pour it all out, just leave your name and number). Then you can ask if you have a named breast care nurse but, more likely, you’ll have a very sympathetic ear as you pour out your concerns.
At first I was appalled at the time delay but they need to be certain what they are dealing with, hence all the tests and changes in diagnosis. You may find it changes again after surgery. I know it feels unfair but they can’t always get the details right first time. I went from “Nothing to worry about”, through “I’m shocked but it seems you do have breast cancer” to the eventual final diagnosis, stage 3, heavily lymph node positive. I guess this took about 5 weeks but I did go privately (a daft decision). Surgery in June is just over a week away - it’s not long to wait now they know what they need to do.
Surgery will give them the opportunity to make you cancer-free, with clear margins, and to establish the best route forward to ensure they catch any rogue cells. That’s when you will get an oncology team but it’s a multi-disciplinary team who confer and decide on your treatment. You’ll probably never meet them all. You may well have a different oncologist each time but, if your hospital is flexible, you are usually able to express a preference for which oncologist you work with. NICE recommend chemotherapy commences within 90 days of surgery.
I remember only too well that worry about rogue cells working their way round my body while I was waiting for treatment but treatment generally sorts that problem out. It’s not worth worrying about really. I would advise you to contact your hospital about who your bc nurse is and have a good chat now about your anxieties. If you don’t feel you can, then definitely ring the nurses at the helpline above. They run a wonderfully supportive service, believe me.
Meantime, steer clear of Google - a guaranteed way of sending your blood pressure soaring because you aren’t really in a position to understand much of it and also you can’t be sure what you read relates to your specific cancer - and work on your mental wellbeing. Go for a walk or a run, bake, smash bricks; my personal preference is relaxing to Youtube videos, particularly Progressive Hypnosis’s Manifest Healing - it got me through all my treatments and I still use it.
I wish you all the best. It’s tough but it’s all doable - and of course it’s worth it. Good luck.
Jan x
Hi janetg77
Welcome to the forum, you are definitely asking your question in the right place and hopefully you will get more replies soon. From my point of view as you have had a lot of tests before surgery hopefully this will mean your surgery will be completed within the time it normally takes if tests are done in between surgeries as in my case . Though if I were in your shoes I would be asking the same questions.
This is how my journey progressed and in overall terms I was just over 7 weeks from diagnosis to final surgery. I had my first appointment at the end of Feb and was told there and then it was cancer (unusal I hasten to add), but I had to return for my biopsy results a week later, as they needed to get the various test results. My results appointment was about 15 mins long and I was then given a “key worker” she is my “go to person” and a specialist breast cancer nurse(BCN), so I agree with jaybro, you should contact the hospital and ask to speak with one of them, there are three in my hospital and I can speak to any of them.
In terms of my treatment my results indicated that my tumour was a probable grade 3, but the BCN emphasised that grade and stage are different, incidentally I am due to start my chemo treatment in June and still don’t know the stage as I keep forgetting to ask! I was given the option of a Mastectomy or Lumpectomy with SNB (Sentinel Node Biopsy) to confirm if there was any cancer in my nodes as none had been seen. My surgery date was 4 weeks after my first appointment, I then had to wait again for my results from that surgery to confirm the grade, my appointment for that was the beginning of April, unfortunately I did have a tumour in my node and so then needed a second surgery which was scheduled for the middle of April with another wait for the results and then my referral to Oncology. So all in all it was just over 7 weeks from my diagnosis to my last surgery and will be 16 weeks until I start my chemotherapy; which is why I have said because you have had all your tests I think your wait time is probably ok.
We have all been were you are now worried and frightened about how long all the processes take but again I agree with Jaybro, there are guidelines set by N.I.C.E in relation to the length of time treatments should take and I am sure your hospital will be making sure they offer you the best treatment they can. The best thing to do for reassurance though is to find our who your key worker is and speak to them directly. I really hope this helps.
Sending you a big hug xx