My wife was diagnosed last month with secondary breast cancer with mets to bones.
First chemo went fine, currently under 4 chemo and then scans
Can you please tell me what to expect in next few months?
Reading Google doctor, the life expectancy is 12-33 months.
It would be really helpful if someone can guide me what to expect and what should I do now to prepare for future in terms of caregiving and treatment options.
Thanks in advance!
Stage IV - Feb 2022
Mets to Bones
HR Positive
Hiya,
please try not to google stats they are so out of date as they take years to collate the info and new meds come along in that time. I myself have had bone mets for 7 years now. A lot of the newer meds weren’t around when I was diagnosed with bone mets. Following chemo your wife will have access to anti hormonal treatment and targeted treatment. Yes she will always be on medication and there is a lot of info on these boards for you to read.
wishing you both well
take care
Debs x
Dear @Andy280
I hope you and your wife are doing ok following your wife’s diagnosis, and I hope that reading other people’s experiences on this Forum will provide comfort and support to you both.
We understand the temptation to Google for answers, and we generally discourage people Googling symptoms and life expectancy, because not all the information that search engines retrieve can be medically accurate, and people’s experiences of treatment varies from person to person.
We have a team of breast care nurses who are here to talk things through, at your own pace. You can reach us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).
I found this page on our website that may be useful too.
We also run meet-up groups for people living with secondary breast cancer.
Sending our warmest wishes
Bernard
Hi Andy
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
Hi Andy
Sorry to hear about your wife’s diagnosis. When I was diagnosed with bone secondaries in sept 2020 (in the middle of chemo for primary) , I too went onto Google and nearly passed out reading the prognosis! Only to notice the article I was reading was almost 20 years old
I too am HR positive, mets to bones. Im on cycle 18 of treatment , and doing well. Life is kinda normal apart from the endless appointments, I’m doing everything I did before diagnosis, working full-time, walking the dog, enjoying life looking forward to my summer holiday. Of course I don’t know what the next scan will reveal, but the way I look at it, my team are Keeping a close eye on me and if anything else turns up, they can deal with it. There’s more medications coming down the line, new SERD’s etc, which look extremely promising for our sub type.
Hopefully you and your wife will settle into your new routine and get on with your lives when things calm down. These forums are a great comfort, real people dealing with the same thing.
Take care
Jools xx
It is hard for partners to watch. I know my husband has struggled. I was diagnosed in 2017 (after completing treatment for primary in 2006). I have mets in lungs and bones. The google life expectancy is scary but try to not set too much by it. My current treatment is Palbociclib, Letrozole, Goserelin, Denosumab & Pain relief. Most of the time I feel physically well, mentally and emotionally it’s harder. My husband has struggled on and off, (losing his job due to stress was a particular low point, and I truly hope your employer is more understanding) The important thing is to spend time together and however hard it is to talk to each other.
We consider ourselves very fortunate that we have been able now to both retire so we can spend time together.
The things that I have most appreciated from him are:
Being an extra ear in the early oncology appointments as I was in such a state I didn’t listen properly.
his encouragement to me to get my pain relief sorted (GP not oncologist).
3.being there with support but not smothering, sometimes he gets it wrong as it turns out he’s not a mind reader
He does my Denosumab injections for me which is 100% better than having to go to hospital for them.
being there with support but not smothering, sometimes he gets it wrong as it turns out he’s not a mind reader!
Your wife will have her own needs and desires, she may want you to be her carer or she may want you to be the sanctuary where she goes to escape all the “cancer talk”. Either way you should try to talk to each other and/or find local cancer charities that can offer counselling or other support. We are very lucky here to have Jane Scarth in Romsey who offer so much help. Also I got a lot from Penny Brohn in Bristol, also worth googling.
Good luck and I hope you find the same joy & comfort in each other that we have.
Updating my wife’s status after more than a year and with a new account.
iBrance and Kisqali worked but had side effects.
Since Oct 2022, my wife is on Verzenio(Abemaciclib) and is tolerating it well with clear scans.
Is there anyone who has been on Verzenio for many years and how are the medium to long term prospects?
Thanks,
Andy
Wife(Stage IV, diagnosed Jan 2022, Mets to Bones, Location: California)
Medicines:
denosumab (Xgeva) estrogen receptor positive
fulvestrant (Faslodex) for Breast cancer metastasized to bone, left (CMS-HCC)
goserelin (Zoladex)
Has anyone done this 3D Ultrasound? This may help my daughter who is still 20.
This year, Miller, 58, a retired industrial engineer from Pontiac, Michigan, tried something new. First, she had a conventional mammogram. Then she walked down the hall at the Barbara Ann Karmanos Cancer Institute in Detroit for a three-dimensional whole-breast ultrasound screening called SoftVue, recently granted premarket approval by the Food and Drug Administration as an add-on cancer check for dense breasts.