I’m sad to hear you find yourself in this position. My first thought was to reassure you. Terrifying though the diagnosis initially is, it’s made worse by the language oncologists use - invasive, aggressive - they make it sound even more frightening. But they are just ways for oncologists to distinguish between different kinds of breast cancer (I had both in the same breast). Then the images that shoot through your mind - it’s invasive, my lymph nodes are affected; it’s aggressive, it’s spreading fast - all sorts of horrors are pictured but actually the details help the multi-disciplinary team determine what’s the best treatment for you and, although it pushes you more towards the dreaded chemotherapy if your lymph nodes are infected (19 of the 21 removed from me were positive), it also indicates that the lymph system has done what it’s designed to do - catch those little b*****s before they spread elsewhere. I’m not playing it down to you, just adding a bit of perspective.
I admire your approach - my mind virtually shut down once I got my only priority (sickness) sorted so I just let them get on with it and moved through most of it in a fog. What I would stress is the importance of resisting the temptation to google. By all means arm yourself with facts from the Breast Cancer Now leaflets that are very helpful but steer clear of Dr Google. Google cannot take into consideration your unique circumstances, your unique diagnosis and, above all, your emotions. What you read, you can’t unread and there’s some pretty frightening stuff around, some accurate, some not, a lot out of date. I think almost everyone on here would agree with me that it’s a minefield.
Your suggested treatment sounds about right. It will depend on what drugs you have in chemo but some are administered once every three weeks, some weekly. I had my mastectomy and axillary clearance before chemo but I think it depends on the hospital which way round they do it. Radiotherapy is almost always given as, according to my oncologist, it makes the biggest difference. You might ask why they have selected the particular drug regime and what you can expect from it. You might also ask what steps they will take to minimise the potential side effects, particularly as you have a daughter who you really do not want to distress any further than she is already. I was given additional anti-emetic and anti-nausea treatment as this was a major concern of mine. You could get bogged down in the percentage difference each treatment will make but, personally, I felt it was wiser to trust the team to do their best for me. And percentages are pretty meaningless in the end. You will be assigned your own breast care nurse who should be a mine of useful information. The other thing I wish I had asked is where you can access support services (alternative therapies, counselling, emotional support, hair loss etc). Currently, these are probably still closed but you need to know what’s there for you.
As regards getting the best treatment, I believe you can look at the major specialist hospital in your region and ask for referral there, particularly if you are covered by BUPA, but I know many people treated in small hospitals who were very happy with their treatments. You may well find that, once you are dealing with Oncology rather than the general breast clinic, the atmosphere is different. It certainly is at my hospital (the breast clinic seems enormous and chaotic) and that is a regional centre of excellence. I had my surgery done privately and my initial oncology consultation. It was the oncologist himself who persuaded me to move across to the NHS (where he also worked). Plus, private radiotherapy is usually done using NHS facilities so you end up there regardless.
If you are working, your employer must register you as disabled and your rights are protected by the Equalities Act 2010 - worth looking up because you can’t know how you are going to respond to chemotherapy and, in the pandemic, if it’s even safe for you to work.
Hope something here helps, if only the Google bit. Take care and I wish you all the best for what lies ahead - it’s all manageable if not pleasant!
sorry to hear about your diagnosis. I found it helpful before my consultations to read up on the publications produced by breast cancer now so I could be better prepared and prepare a list of questions. The booklets, which you can download from the website, also have some suggested questions for your oncologist. Your medical team should follow the NICE guidelines-and I’m sure the nurses on the helpline would be able to help you understand what the guidelines suggest for your particular diagnosis and what decisions the team should be consulting you about. May be worth giving them a ring before your appointment. I also found it helpful to have my list of questions written down, and to tell the Dr that I had a list that I wanted to go through. They were always more than happy and patient to answer my questions and address my concerns. Wishing you well.
I was diagnosed with HER2 positive breast cancer last week. At the moment they think it’s just in the breast although it is in a lymph node within the breast. I’m waiting for the results of the sentinel node biopsy to Be sure it hasn’t spread.
like everyone, I’m an emotional rollercoaster at the moment. I have a telephone consultation with the oncologist on Monday. Please can anyone tell me what to ask him/ her? I want them to know that I’m informed and that I’m not taking anything less than the optimum treatment. The nurses at my local hospital are lovely, but the drs are clearly overworked and I can’t risk becoming an unfortunate statistic, I really need this sorting.
it’s been 5 weeks since I first found the lump, which seems like a lifetime. They say it’s an invasive cancer and I’m so scared that it’s growing inside me now.
ive been told to expect 6 months of chemo before surgery followed by radiation. I don’t know if that’s a bad thing or a good thing. The main tumour is 2.5 cm.
any advice about how to get the best from the NHS would be really appreciated. Is there anything extra that I can ask for? I have Bupa through my work, but due to COVID there is no option to go private.
ive just turned 50 but I consider myself to be youngish and fit. I have a 15 year old daughter who is breaking her heart over this news so I have to get this fixed for her.
thanks for helping x