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Wife diagnosed with Secondary Breast Cancer, what to expect

17 REPLIES 17
dragoncarine
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

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:

1. Being an extra ear in the early oncology appointments as I was in such a state I didn't listen properly.

2. 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

3. He does my Denosumab injections for me which is 100% better than having to go to hospital for them.

4. 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.

Thumper22
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

I just wanted to say thank you so much for taking the time to share. I’m supporting my mum, and she doesn’t share much. I totally understand that she doesn’t want to talk about it, but hearing your positivity and experience, has really helped - thank you

Thumper22
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

I just wanted to say thank you so much for taking the time to share. I’m supporting my mum, and she doesn’t share much. I totally understand that she doesn’t want to talk about it, but hearing your positivity and experience, has really helped - thank you x

Andy280
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Thanks to everyone for your kind wishes and suggestions!

First Scan results are in for my wife and they are good.

Primary tumor has shrunk a lot and bone mets also seem to have shrunk remarkably.

Doctor says results better than expected.

Now more of hormone therapy drugs so let's see how that goes.

Thanks once again

 

Jaybro
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Hi Andy

I haven’t been around this forum much lately so I missed your question about what we in the UK call the cold cap. It’s probably too late for an answer - you’ll have discovered for yourself by now.

What I did want to say is that, although hair is an important part of our identity, it’s not that important. If your wife has already suffered hair loss, maybe the damage has been done. It’s easier to embrace the idea and the reality rather than dread it and treat it as another problem. A buzzcut can be extremely flattering and then there is no need to touch your hair except to smooth shampoo on under the shower. Equally, a completely bald head can look stunning - it all depends on one’s attitude. I know to lose long hair must be heart-breaking but there is an amazing selection of wigs (though personally I found a wig uncomfortable) and the real hair ones are impossible to pick out in a crowd.

Cold capping is not guaranteed to work. It adds hours to treatment time and can be painful until one grows accustomed to its numbing effects. If it only works partially, women are left needing to wear a wig or a hat just to conceal their bald patches - not a good look. For some, it’s a positive choice and it works for most but I get treated in a huge hospital with several treatment wards and I’ve only ever seen one person cold capping. I’m not sure what that says.

There are other ways to make sure your wife still feels feminine and attractive. Here we have Look Good, Feel Good classes on all aspects of makeup and manicures. But some people (myself included) really don’t care what others think and my husband encouraged me to think that way. It’s not forever, like a mastectomy. But even there, I go monoboobed, regardless of what people think. How I feel is what I care about. I know these are just personal opinions but, in the grand scheme of things, what is a few months of baldness compared to just enjoying life as much as you can, regardless of what you look like?

I know I’ve not been helpful but this idea of hair loss being horrendous needs to be challenged more but challenged gently. I do hope your wife becomes reconciled to whatever happens with her hair. I also hope she quickly has positive outcomes from her treatment that will raise her spirits.

With all best wishes to you both,

Jan x

Andy280
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Thank you so much @Angel2001.

Your reply was so helpful!

I thought that insurance was trying to save money by not approving Radiation, but perhaps it's best so as to avoid more side effects.

 

Angel2001
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Hello Andy

I’m really sorry to hear about your wife’s diagnosis. There is so much information to take on board in those early days but it sounds as though you are a wonderful support to her.

I was diagnosed with bone mets last year. Mainly in my lower spine which caused me a great deal of pain. My oncologist advised radiotherapy could help to ease this but warned me that initially the pain could get worse.

I had 5 consecutive days of 15 minute sessions and suffered badly with sickness after each session. The increased pain lasted several weeks and moved around my upper body. They told me this was referred/nerve related pain.

It was a really tough couple of months and I had pain relief support from my local hospice so things are managed fairly well now and I’m currently stable.

I would say if your wife isn’t in pain, the oncologist is probably correct but every case is different. I hope my experience helps and I wish you both well on this journey.

 

 

 

Andy280
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Does anyone know when Radiation is advised for Bone mets?

The Radiologist doctor says that do radiation ONLY for pain relief.

Since my wife doesn't have any pain, doctor says no need for radiation.

Is it because the radiation has more side effects?

Anyone with radiation experience, please let me know.

 

Thanks a lot!

joycem61
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Hi Jaybro

I don't visit the BCN site very often as I am doing OK so far and only just visited it because we came home from weekend in Wales a day early with what seemed like a UTI.  I wanted to see if any others had suffered the same and any tips.  I didn't ring anyone for advice but did take IBRO per NHS website and it did work.

Anyway the reason I'm just writing is to say what an excellent reply you wrote to Andy.  A really common sense approach Like you I have a very supportive husband who now does the ironing and hoovering.....no cooking and more important doesn't keep asking if I'm ok.  The only problem is that he has recently been diagnosed with Parkinsons - only mild so far. We walk most days and garden, visit the theatre and NT gardens, have meals with friends and children..  Another important thing is to stay cheerful if you can and I just say "I'm alright thank you " to enquiries from neighbours friends etc. In fact those friends waiting for new hips or knees are usually living with pain and don't want to hear my problems.

I have been on the Pal and Letrozole for 9 months now and have not seen anyone since early last July, I suppose that might be a good sign anyway but this site is a big help.

Wishing everyone well and enjoy being outside in the sunshine, by a river if possible - really healing!

joycem61

 

Andy280
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Thanks a lot Jools!

Very insipring to read about your note.

One question I have if anyone can answer:

My wife(Age 48) couldn't do Icekap for her first chemo and is now losing her long hair.  
I ordered the Icekap from Amazon so hopefully she can take it for her next few chemos.

https://www.amazon.com/dp/B06ZY6348Q?psc=1&ref=ppx_yo2_dt_b_product_details

Will she be able to save some hair(50%) if she uses Icekap from second chemo?

I think as part of cancer treatment, one needs to feel good also and losing hair would make her feel more sick.

Any recommendations in this regard are highly appreciated.

 

Best wishes for everyone!

Andy

Jools-50
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

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

Mermaid007
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Hi Andy,

The bone strengthening meds your wife is on will do the trick regarding fractures. prior to this new generation of bone meds I think people could get fractures just my turning over in bed! So she should be ok barring a proper fall or accident. I would encourage gentle exercise like walking on the days she feels up to it and I also do gentle yoga ( lots on you tube).

Take care

Love Debs x

Andy280
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

Thanks a lot Jan, Debs, Nicola and other members.  Your replies have been very helpful and I really appreciate them.

I am at California, but researched different forums however liked this one the best, so joined this.

She is being treated at one of top cancer centers in US which I am happy about, just needs good luck wishes for remission and for NEDsville.

Right now my wife has 4 cycles of Taxotere and Cytoxan and will probably have scans afterwards.

My question is since she has bone mets, how best to avoid fractures?  She is getting some bone strengthening medicines also, but any other suggestions would be great too.

I am also hoping she has few months or years of NED(No Evidence of Disease) if the medicines work as expected.  

Great to hear that some live 15-20 years with such mets.

nicola2610
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

@Andy280  I have just read @Jaybro  response, and cannot agree with her more.  

It’s such early days for your Wife and yourself to get your heads around this diagnosis.

 I have secondaries and my oncologist and surgeon both said the same to me, that I should look at my diagnosis as a chronic illness, and not as a death sentence.  I fully appreciate we all have different diagnosis and prognosis, but the change of language used by the professionals really helped me.  

If or when your Wife feels up to it she will find some wonderful support on here, as will you.

Nicola

 

Jaybro
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

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

Bernard_BCN
Community Manager

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

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

Mermaid007
Member

Re: Wife diagnosed with Secondary Breast Cancer, what to expect

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

Andy280
Member

Wife diagnosed with Secondary Breast Cancer, what to expect

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