Hi Elizabeth
First, a huge hug. This has been well and truly stretched out and I can imagine most days have been an agony of waiting for you. It’s too late to advise you on dealing with the second-guessing but it’s important to know two things. Breast specialists are ultra cautious and need to rule out all possibilities. The fact the you are having tests doesn’t actually mean you have breast cancer. It means they are looking for evidence that you do not have it - to be certain. As Shi always says, you do not have cancer until the oncologist tells you that you have. Most breast lumps are harmless but, since they’ve also checked your lymph nodes, the suspicion is there and has to be eliminated.
I have been there, over two years ago, and was numbed by the news. I remained consciously in a numbed state throughout my treatment and just let them get on with it. It got me through. So there you are - a woman with a lifelong phobia for vomiting, obsessed with that and panic attacks, with no room to fear cancer. Almost surreal in a way.
To help you understand the ultra caution, I had two MRIs yesterday, one for the ophthalmologist treating my eyelid, the second for my oncologist who wants to rule out an enlarged node in my neck. We all know that node works overtime since I had full node removal (axillary clearance) so being enlarged isn’t unexpected but the possibility of cancer has to be ruled out. I don’t feel anxious and don’t expect bad news on Friday (if I can still have my appointment) because I understand the need to caution in this field. I may be wrong. I’ll deal with it if I have to. Meantime, my husband is being physically sick with his renewed anxiety about me and I can’t convince him otherwise!
What you need to ask depends very much on your approach to illness and treatment. Some women want to know and recite every tiny detail (ER+, PR0, grade, stage - my hospital doesn’t do stages), others don’t. If the news is reassuring (ie not breast cancer) you need to ask if the lump is better left alone or removed. I certainly would ask what the node biopsies showed/why the node is enlarged. You might want to ask if there is any future risk and what advice do they have for you to monitor things (probably monthly breast examination). You don’t give your age but I assume you don’t yet have the 3-yearly mammogram so it might be worth asking if you’d benefit from having regular mammograms.
If the news is that you have breast cancer, you will be told everything but it will go in one ear and out the other. Do you have someone who could sit offscreen and take notes for you. My friend acted as my PA after my first appointment and was invaluable! They will suggest a plan of action. You may want to ask why they propose surgery first, why a partial and not a full mastectomy, why no reconstruction etc, all depending on what is said. If they mention any hormones, ask exactly what that implies for you. Statistically, some treatments don’t appear to make a great difference to survival rates in the first 5 years (2% here, 3% there) but ask exactly what difference each treatment will make for you - they all add up. Ask what will be the consequences if you choose not to have a treatment they recommend. It’s also important to ask how this is going to affect your current treatments for chronic health problems: will anything make things worse? Can you continue with your medications etc?
There is just so much you COULD ask. Personally, I’d say ask what you need to know, what you want to know. Let anything else slide. You can always ring your breast care nurse if you get struck by a question! I don’t believe knowledge is power myself; not with cancer. It has a will of its own and we can only trust our team to do the best they can for us. This they do and the survival rates for breast cancer are very good, way better than say 20 years ago. It’s a disease we’re learning to understand more.
Of course, you may not have it. Let’s hope not. I wish you all the best in your videocall.
Jan x