Newly diagnosed Secondary Breast Cancer Lung Mets

Hi everyone,

New to this, had breast cancer 4 yrs ago and they are still clear, but was diagnosed with Secondary breast cancer lung mets last week. Feel devastated. Had a lung biospy and just had bone scan yesterday. Get results next wednesday but they are 99%.

I am positive on the outside but overwhelmed on the inside, difficult to speak to family as they want to help but don’t know what to say except be positive or praying for you. I appreciate it, but it is rather getting on nerves but I am polite.

Just can’t get my head round it WHY me?

Hello nuttytart

This must be a very difficult time for you, but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information.
The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes
June, moderator

Hi nuttytart,

I was in a similar situation to you, I developed lung mets just under 4 years after my primary diagnosis and like you was absolutely devastated and could not get my head around it at all. That was 2 and half years ago, I have been on hormone treatment, letrozole, and have remained stable since. I know at the moment you wont think so but life does get back to normal(whatever normal is!!) once you get a treatment plan. As you will see on this site there are lots of ladies with secondaries who go on to live a good life for many, many years. At the time I thought that was the end but it isn’t, I have a holiday booked for this coming June, my son is getting married in August and since diagnosis my daughter has had 2 beautiful little girls.

Good luck with your appointment on Wednesday, will be thinking of you, do pm me anyime you feel like it.

Marina xx

hi nuttytart im so sorry to hear your dx after a clear 4 yrs im a sec lung met lady one yr since dx i know how you feel you feel life is over but that is not the case we still have down days but that is norm you will feel a lot better once you have got a treatment plan im happy to pm u anytime if you wanna chat we have a sec lung met thread gd luck we are all here for u lauraxx

Thank you for your kind word, as you say as soon as I get the rest of the results from the lung biospy and the bone scan things should be much clear. I think it was the oncolgist that spooked me more. I was blunt and said how long do I have.

Gave me statisitcs out of hundred people in 2yrs 50% will be around in 5 years few will be around. So I sort of panic as I have a daughter of 10 she hasn’t be told yet only knows that I have a bad chest. Husband who has not got his head round it but just talks non stop about football. I told him to talk to me, and response was well I cant do anything.

My parents are fantastic especially my dad he is 77 and said when I go bald after chemo one being with T he will shave his head again, I suggested the eyebrows too. But he said he would stop at the head. My dad always knows how to make me laugh my mum is my rock.

Will go through site over the weekend and fine the Lung mets link. As supposed to be working, but as you know cant get me head into it.

xxxx

Forgot to say, I have named my cancer as Medusa

As I am the nice one and she is the horrible on. xx
Fiona my nurse thinks it is a brilliant.

What does everyone call theres???

Result day today for biopsy and bone scan, can’t really get any more bad news so, being positive today once I know what regime I will be in for the next few months.

Finally sat down and spoke with my husband who I have been calling ostrich as he had his head in the sand with everything. Thought today would bring it all home for him and to listen to the onc first had rather from me. Having a family outing as my mum bless her in her 70’s is coming too she wouldn’t let me go on my own as my ostrich originally didn’t want to come with me to get results.

Will post later with results and what they will be doing, would appreciate any tips. xx love and blessings to you all

good luck today! xxx

I was terrified by the stats, but Lovely ladies on here gave me a good talking to!!! Must not focus on that! My little boy is 7 and I just want to see him grow. Have regional recurrence not lung, but still crap stats! Love your naming!! Hope your appt is ok! X

Just wanted to add my good luck to the others for today. Let us know how you get on. The first few weeks of any diagnosis are the pits but honestly, life does get back to some sort of normality and you will find a way of coping with this.

My daughter was 11 and my son 14 last year when I was diagnosed (history is in my profile). They have both coped so well. I haven’t bluntly come out and said I am going to die as I felt that was too overwhelming for them, however they know that I have a serious illness that the doctors can’t cure but there are lots of different hormones and chemos for me to try to keep me as well as possible. I figure as things get worse, we’ll have more conversations.

Hugs

Laurie

Will post more later gd luck for today you will cope we will help all we can xx

Good luck for today and your scan results, and so glad you’ve got people going with you, my OH was brilliant all the way through he’s been there every step of the way I can’t imagine going through this without him. You refereed to naming yours medusa, I don’t have a name for mine other than when I was going through chemo I used to imagine the chemo was that old computer game pac man chomp chomping away on the cancerous cells, it really worked for me and now my lung mets are tiny and classed as stable.

Thinking of you today
sending lots of love and light
sarahlouise xx

good luck for today. Will be thinking of you. I was diagnosed with multiple lung mets 5 years ago, so try to ignore the statistics!
nicky

Hi Everyone,
Thank you for your kind words. Well Medusa is only in one lung, confirmed her prognosis secondary breast cancer Lung mets. Again she reiterated the statistics and will scan me 1/2 way through to see how the chemo has dealt with Medusa.

Bone scan was fine, said I had hot spot on R ankle, tendonitus and wear and tear on my feet. (What do they expect after 42 years of walking etc - an electrical item doesn’t last that long)

I feel so much better now I know what is exactly going on, chemo etc.

I received a call from my GP on monday, said she had received the letters from the hospital about medusa, wants to keep continuity with 1 doctor as quite few at surgery so Dr L has agreed to be my only contact at surgery, said to call her if I wanted a chat. Made sure I understood the statistics (Why do everyone quote statistics - like we all say we are all different - sorry rant.)

Well keep you posted with updates. Thank you for your support really appreciate it.
Lisa xxxxx

Hi Nuttytart,

Dont understand why your team keep quoting statistics I also have lung mets on both lungs dx from the start with primary in march last year and not one person has quoted any statistics to me and if they did I would tell them that I am not a statistic I am an individual human being, we all respond to treatment differently you cannot place us in one group as we have found out recently there are 10 sub types of BC! My onc has never given me any statistics in fact he surprised me when he said I could go on for 10 or 20 years, I don’t really care if thats not realistic at least it gives me a confidence boost. Whilst waiting at the hospital on one of my rads appts I was reading a magazine in the waiting room the article I was reading was about a lady who had been living with BC lung mets for 11 years, so I would tell them where to stuff there statistics. LOL

At least your bone scan was clear and now you know what your dealing with and have a treatment plan in place. You may be eligible for Cyberknife if you only have 1 or 2 mets on your lung, you could suggest this to your oncologist next time you see them.

Here’s a link to a positive story share.breastcancercare.org.uk/forum/viewtopic.php?f=170&t=27144

Love and light
sarahlouise xx

Hi I’m also amazed I never been told statistics I’m a yr on with lung mets in both lungs my onc or gp have not sd a word my old onc told me cant tell me because they really don’t no we are all dif and respond to chemo diff I wld also push as much as u can for cyberknife they won’t wanna use it but u have the right to ask if u can see the cyberknife man gd luck tb Laura

Here Here Sarahlouise - well said!

Hi nuttytart,

Sorry to hear about your recent diagnosis. I don’t have lung mets. I was diagnosed with bone mets in 2008. When I was diagnosed I told them that I did not want any statistics. I find the following quote helpful, ‘better to be anacdotely alive than statistically dead’. We only become a stat when we die. Most stats are very out of date and should be treated with extreme caution. There are lots of women on this site who have lived with secondary BC for many years and continue to live full and active lives.

AlexD

the reason is probably when they tell you it incurable and inoperable, first thing that came to my mind was well how long I got then. But Chemo is to start on 11 May 2012, having a picc line put in too!

To be honest up until now I have been positive on the outside, still positive, but I feel very nervous, had a few moments over the weekend when the slightest thing got me upset for no reason.

Only thing now is chemo, not looking forward to it.

regards
Lisa xxxx

Hey Lisa

Statistics - Meh! Ignore and don’t Google.

One day at a time.

I have told my team that I am very happy to talk about my treatment and options but I absolutely do not want anyone to talk stats to me and it’s always the first thing I say to any new Dr that sits in front of me.

I prefer the head in the sand approach which, almost a year out from multiple liver, lung, axilla and bone mets seems to work pretty well for me. I come up for air around scan and results time and then it’s back to LALALALA fingers in the ears / I’m not listening!

Do whatever you have to, to get through and cope whether that’s drugs, counselling, etc.

Good luck with the chemo. What are you having?

Hugs

Laurie x