I wish my husband were as sensitive to my condition as you are to your wife’s. I’m sorry it’s happened but…
Yes, Google is disastrous. There are women who’ve been living for 5 to 20 years with SBC. It all depends on the specific type of bc and Google doesn’t know that. I’m aware of someone who’s notched up 22 years. Forget statistics and just listen to your oncologist. Sadly my husband (who hasn’t googled) has latched onto the short life expectancy and is all doom and gloom.
Treatments have changed so much. Although it is fact, I actually take issue with the NHS and Macmillan, both of whom start by saying this is incurable but treatable. People don’t understand the distinction and latch onto ‘incurable’. Diabetes 1 is incurable but people don’t start thinking about life expectancy, they start thinking about the best ways to manage things so it interferes as little as possible with normal life.
It’s definitely a chronic condition and, yes, it is incurable but there are more and more treatments available, including those targeting HR+ which extends your wife’s options.
Your life will never go back to normal. Your wife will be on permanent medication, often chemotherapy (again, there are so many better ways to manage side effects now), and at times her immunity will be low. So you are always going to need to exercise some caution. But that doesn’t rule out a cruise here and there if that’s your lifestyle. It’s up to the oncologist. There’s no predicting how your wife will respond to treatment. I’m on my first line treatment for Stage 4 triple negative bc. I have had oral chemotherapy for a year now and the results were almost immediate, my blood markers plummeting and staying stable. But I was a wreck for a few months, mainly fatigue-beyond-fatigue. I know of others who have had very few side effects with the same drug. It’s a lottery.
If I had to give some advice it would be to think very carefully as out how much information your wife actually wants. I prefer to trust my team and ask as few questions as I can. We have never discussed my prognosis - I will do that when it seems I have to. I have enough to contend with without thinking that up to 2 years is the predicted lifespan for TNBC. I’d only have a year to go and I feel fine right now, apart from having to take all those pills. I got through primary treatment without even knowing one of my tumours was triple negative so I had three years of relative peace of mind. Other women prefer to have all the details, include scan photos, and analyse them so they feel they are in control of their condition. Maybe they are. But it has to be your wife’s choice. Your wife also should have the option to choose her oncologist and expect to see her/him routinely, for continuity.
So expect some form of chemotherapy (it can be IV, injections, tablets, depending on what is best for the specific condition) with quarterly CT scans. I believe this is the expectation in the NHS. Expect a lot of waiting. Expect side effects but the hospital pharmacy will probably prescribe for some, like nausea. Have Imodium and Buscopan to hand just in case and stock up on nice things to make fatigue tolerable. Nice smelling hand cream, flowers (my husband bought me a year’s subscription for flowers monthly), more TV choices if you don’t already have Netflix, Prime etc. Be prepared to take on many household chores (my hands were badly affected for a while and I couldn’t wield a kitchen knife; even now, I don’t have the strength to get the vacuum cleaner out, let alone use it). When possible, make the most of the good weather, a break from side effects etc but never force your wife’s hand. And don’t expect the worst. Your wife may well respond well to her first line of treatment, have few side effects and just want to get on with life. I do hope so.
Choose carefully who you tell and how you tell it. As I said earlier, a lot of people do not understand. They are stuck in the last century where it was a considered a death sentence. What you want to avoid is the situation where you end up playing things down in order to keep friends happy, feeling guilty for upsetting their healthy worlds, and you don’t want constant questions. Nor do you want people to stay away, thinking you’re inundated with well-wishers. I say ‘you’, I mean your wife more than anyone.
I hope she will become an active member of the forums here. It’s a wonderfully supportive ‘community’ of strangers. There are also Facebook groups she may later want to look out for, as well as sites run by bc charities that offer online sessions for all sorts. BCNow has a fantastic nurses’ helpline, offers online support groups and runs support groups in the real world at different localities. These things are for later on - she’s still getting her head round the shock, as you are.
I wish you both all the best in whatever lies ahead.
Jan (fortunate to have a husband who happily does ALL the housework and ‘cooking’) x