Newly Diagnosed with lung mets

Hi all, I’m a newbie to the secondary boards, so a quick intro.

I was diagnosed with stage 3, grade 3, ER+ breast cancer a year ago. Had a mastectomy, 3 FEC, 3 Tax and 15 rads, started tamoxifen.

At the time of diagnosis a few things showed up on my CT scan, including some tiny spots on my lungs, too small to analyse. Turns out, one year on, that these spots have grown and I have 3 areas of mets on my lungs. Tamoxifen stopped, started Xeloda last Friday.

I thought my Onc was going to cry when he told me, although he said it was treatable, like diabetes. My BCN has insisted I’m not dying, that she would tell me if I was.

At the same time though, I’ve been told to apply for DLA under the special rules, to claim under the terminal illness clause on my life assurance policy. The Macmillen nurse I’ve spoken to made me cry talking about creating a memory box for my little boy.

So to get to the point, I know no-one can tell me how long I’ve got, but I’d just love to hear some good news stories from those who’ve been going through this. I’m trying hard to stay positive. It’s still all so fresh and I just don’t know what to think. Can anyone give me a little boost, please?

I can relate completely to what you feel having been diagnosed with secondary bc in April - I start on Xeloda soon (just need another scan before they will start) so we can follow each other with treatment responses. I’ve found these forums very positive and encouraging when I feel down and that helps me to get on with life on other days - “living with secondaries” seems to be a very up and down experience so I have to make the most of the ups on a minute by minute basis and keep my focus on new treatments coming out all the time - I actually think I appreciate life more now and am therefore getting more out of it in the long run. I do sometimes think of memory boxes, funerals etc but have decided not to think about these sort of issues until a time when treatment does not seem possible. In the meantime I think of my cancer as treatable and that helps.
Applying for DLA is complex so I’d suggest you read the thread about this - I can’t apply yet as I’m still very mobile and can carry on fairly normally although I have just decided to retire from work as my energy levels are not good on chemo and at 59 I’m happy to enter a new phase in life. From what I’ve read on the forums some BCNs seem to think we can all apply but this is incorrect - the issue is whether we have a level of disability on our “worst days” that qualifies, if we do we can apply under special rules - I feel happy that my quality of life still makes me not at the level of disability required but the money would help…
Do keep in touch - and hope you get the good news stories that help; they have helped me a lot.
Fran

So sorry to hear that you have mets i cant begin to understand how you feel as im not there. Lots of wonderful longevity stories on here and wishing you all the best.

Thank you so much for replying to me ladies, I’ve really missed this place.

Fran, I’m so glad to hear that you focus on the positive side of things. Inside, I feel that’s the right thing to do, after all, what is the point on dwelling on the future? I’m just worried that perhaps I’m some sort of denial.

I’ve only had one 10 minute meeting with both my BCN and Onc, that was one I was diagnosed. There’s a lot of things I don’t think I know the answer to yet, I think I need to start writing these things down, as they tend to pop up in the middle of the night.

Fran, is it almost a year since you were diagnosed with secondaries? I’m just wondering what treatment you’ve been on so far? It’s great to hear that you’re still feeling fit and well. I need to hear things like that!

I’ve only been taking Xeloda for a week, so early days of course, but so far I’m glad to say I haven’t noticed any side effects. I hope and pray it’s working! I’ll have another scan after 2 cycles to see how things look then.

I apologise if I’m rambling, tbh, my mind is in a whirl since all of this and I find it hard to concentrate with a 4 year old as it is. I’m surprised I can string a sentence together at all!

Thank you both again for taking out the time to reply.

Wendy
x

Lovely to get your reply Wendy - without this forum I would not keep positive as I have to vent my worries somewhere and don’t want to burden my OH too much as he copes in a very practical way and my son’s now 19 and just establishing himself at Uni so I don’t want him to worry and wider family need to “get on” and not worry too much as well - but it’s impossible for me to sometimes not think about the future … I’ve also wondered if it’s denial sometimes - but I try to feel it’s best to get on with the present situation since who knows what might happen… I cope best by giving myself “my time” each day away from other people when I rest, meditate, listen to music or sleep and try to work through issues so they don’t breakup the night time too much - so all my family, former colleagues and neighbours know that early afternoon is “my time” with phone off the hook etc. Can’t believe I actually do this as I’ve always prioritised responding to others! But it helps and if I need a down phase I can quietly use this time to work through issues and come “up” again - I give myself permission to feel worried for this part of the day if I need to but have this strategy to give myself thinking time. Not sure if you can fit this into your family life…

Really glad to know the Xeloda is not causing problems - that gives me hope as I’ve struggled with FEC and TAX. You’ve been through alot of treatments already so no wonder you feel like you are reeling - so far I’ve had operation on my arm as had mets that nearly caused upper arm to fracture and had to have a replacement humerous (that’s how they found I had secondary cancer from the start - am also ER+ but HER-) , had 6 FEC that did a pretty good job on tumours then Arimidex tablets for 3 months that did not stabilise them; then 3 Tax (was going to have 6) and now moving onto Xelado combined with a new chemo that a French company have developed and are trialling. New treatments are coming along all the time - that is one of my main positive thoughts - we are so lucky there is so much research going on into bc and making secondaries so much more treatable with life expectancies rising all the time.

Yes, I write a list a questions ready for each appt - the sheet of paper sits on my kitchen counter so I can jot them down as they occur to me - never feel I’m given enough time to discuss them all though… but am getting much more assertive as time goes on and more probing in wanting to know the details of my condition - finally asked to see the scan reports this week and was given copies to take away with me so I now know the details instead of just a general conclusion.

Hope this helps - I’ve had to adjust to less physical energy and still can’t drive with arm recovering but apart from that feel pretty normal - so sitting at the computer is great for me as it does not require me to get out and use up energy!

Do keep in touch
Fran
xxx

Wendy, i’m really sorry to hear about your dx. I just wanted to send you my love. I hope the treatments are kind to you, that they work and that you find a way through it.

Vickie
xxx

Dear Wubbly,
I’m so sorry you have had to join us, but as others have said, we are very supportive, and understand what you are going through. I was diagnosed with lung mets at the same time as primary nearly 4 years ago, but still remember the utter shock of being told. It helps to know what your treatment paln is-and there are lots of treatments to try with new ones coming up all the time. I think learning to live with uncertainty is one of the hardest things, as well being able to plan only from one scan to the next. I have a little boy who is nearly 7, and his memory box is now overflowing-I also keep a diary of special days, holidays etc.
I hope you are getting a lot of support- please be gentle with yourself.
best wishes,
Nicky

Hello ladies.

Thanks for the kind thoughts Vickie. I’m doing well, but noticed I’m bleeding this morning, so that’s a bit of a weird one. Probably just a period sneaking in, but why does it always happen on a weekend or christmas!

Frances, I’m shocked at what you’ve had to go through. It’s amazing that you can remain so cheerful after all of that. Your posts have helped me enormously. You have a wondeful attitude and I’ll try to take your advice. I’ve been thinking about joining a group my BCN recommended, a sort of positive thinking mediation thing. To be honest, I’ve always had trouble relaxing, so it can’t do any harm. It’s another thing to add to the ‘to do’ list.

Nicky, thank you so much for replying to me, I really appreciate your time. First of all, 4 years sounds promising, something to aspire to. Like you say, there’s new treatments all of the time, so lots to be optimistic about.

You sound as though you’ve managed to create a wondeful balance to living with this. At the moment, I feel I’m veering between desperation and ludicrous optimism. Last night I realised I just felt sad but calm, so hopefully I’m on my way to finding some way of living with this, without it dominating everything else.

The sun is shining today, so I think we’ll head off down the coast and start collecting more stuff for that memory box.

Are you all enjoying hte sunshine?

Wendy
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hi wendy i can relate to you so much! i was dx with bc last jan had lumpectomy and nodes clearance followed by mastectomy cos margins were not clear the lump was very small just 10mm but grade 3,after ct showed clear i had mastectomy followed by 4 ec and 4 tax them 15 rads and tamoxifen i finished my treatment end oct 10 ( the treatment was just supposed to be a precaution!
then just 4 month later i found a lump in my neck the very next day i saw my consultant they did an ultrasound and biopsy and following week was told cancer cells were in the node in my neck i had a ct scan a few ays later and consultant saw me the next day with the deverstating news that it was secondary spotted in my lungs!! i couldnt believe it my world collapsed ive never felt to low all i could think of is omg im gonna dye young and its not fair, i asked straight ou what do i have , reply months years? who knows stuff coming out all the time, i dont drink i dont smoke,i eat healthy surely i can do something?? i was told although now not curable it caqn be contained so i started on tuesday on xedol and i feel ok so far apart from a cough and pain in my chest. ive now crwlwd out of the whole i was in last week cos it wasnt a nice place to be, im an optomistic person and there is new stuff coming out all the time and im willing to try anything they throw at me.
i still have days when i cant sleep and i feel sad but i have to look forward and fight this!
as for dla fran its not complicated at all in fact its never been so easy and u dont have to wait til u need help i filled mine in under special rules online and my consultant sent me a ds1500 report within a week it was accepted and u get £121 per week , u also get a blue badge too, its nothing for what we are going through but u are entiteld so please do it now and enjoy things with your family! if u need any help please ask so wendy and fran apply today!!!
its nice to know we are not alone on this journey i will add u to my contacts ,
karen xxxxxx

Hi Karen

Thank you for posting, you’ve summed up how I feel perfectly! I thought it was bad living with the fear that it might come back, now I just wish I could have lived like that for a little longer. I realise now it’s nothing compared to living with the knowledge that it’s here, inside me.

I had a really good cry last night and moaned at my lovely husband. I’m glad I got it out of my system because I do feel better for it.

Like you, I’m going to fight this, there’s no way I’m giving up yet. I’ve been looking into cyberknife, although I’m not sure whether it’s appropropriate, there’s some debate on it’s use in mets. I did, however, find this

“Lung
Single or several tumours in the lung may be obliterated by single or a few fractions of CyberKnife radiation therapy. Highly focussed obliterative doses of therapy can be used to both kill/ablate individual lung cancers (primary or secondary) with sparing of the surrounding lung (more than other radiotherapeutic techniques). At the same session, the CyberKnife can treat up to several lung tumours notwithstanding the fact that they may be sited in different lung areas (- normal lung sparing from high dose radiation therapy is even more important here, because of the potential cumulative danger from additive radiation normal lung areas). For many patients who are elderly or those who have poor lung function (that makes operative resection risky) or more than one tumour (which the surgeon could not remove at one time) CyberKnife seems the optimal solution.”

That was on the Harley Street Clinic website.

It gives me a little hope and I need hope right now, more than anything else in these early weeks.

I’d love to be a contact and keep in touch with you, I hope we can support each through this journey.

Take care.

Wendy
x

hi wendy i too have been looking at stuff like that i mentiond it to my consultant and she said there is a machine in liverpool but tends to be priority to children but im deff gonna persue this ive never abused my body and for that i should be able to have any treatment that may benifit me i reckon >)
kaz xx

That’s good news Karen, at least your Onc didn’t dismiss it out of hand. Definitely pursue it.

I was reading up on the Cancer Research UK website that the NHS has 2 machines, one cyberknife at the Mount Vernon in Hertfordshire and a LINAC machine in Clatterbridge Hospital.

I mentioned it my Onc too and he said “No, it’s no good for you, you need systemic therapy” Fair enough, but does it have to be either/or? Can’t I have both? I’m fit and healthy still, it’s got to be worth a try surely?

Anyway, this Onc (my second in a year - don’t know what I do to them???) is leaving so I’ll be getting a new one soon. This will be one of the first things I raise.

I’m considering trying to raise the funds to go privately if the NHS refuse. That might not be realisitic, I realise that, but it gives me something to cling onto.

Karen, how are your family and friends coping with your diagnosis? I’m feeling very guilty for putting so much onto my husband. He’s being so strong but I know it’s so hard for him too.

Wendy
x

hi wendy it is very hard for ppl to know what to say , im very lucky my hubby has been strong but also cried with me too which is important cos its just not fair we have to go through this emotional rollercoaster but we can do this ive always been a possitive person so apart from being in the hole i was in last week im out now and gonna do all i can to beat the odds :slight_smile: DO U HAVE FB ? if so pm me your email adress we can chat on there too xx

Hi Wendy

I have just spent ages typing a long message and it all just disappeared! I have been away from this site too long - I forgot to save it first!

I have sent you a personal message instead now.

Take care xx

Hi Wendy and Karen
I am pretty much in the same place as you, dx and told I had lung mets on the same day, starting aggressive chemo and herceptin on 22nd/23rd March, I asked my Onc about Cyberknife and she said it was not appropriate for me, but I am not willing to accept it just like that and have sent an enquiry to the clinic in Harley street as their wording is a little difficult to determine whether several mets can be dealt with. I have read a few posts about Cyberknife and it sounds amazing, I could do with some good news for a change .
I will keep you posted.
Jean

Hi Jean

Sorry to hear you’re in the same position. I can’t imagine what it must be like to get that sort of news in one go.

I’ve copied the wording from the Harley Street Clinic site:-

“Single or several tumours in the lung may be obliterated by single or a few fractions of CyberKnife radiation therapy. Highly focussed obliterative doses of therapy can be used to both kill/ablate individual lung cancers (primary or secondary) with sparing of the surrounding lung (more than other radiotherapeutic techniques). At the same session, the CyberKnife can treat up to several lung tumours notwithstanding the fact that they may be sited in different lung areas (- normal lung sparing from high dose radiation therapy is even more important here, because of the potential cumulative danger from additive radiation normal lung areas). For many patients who are elderly or those who have poor lung function (that makes operative resection risky) or more than one tumour (which the surgeon could not remove at one time) CyberKnife seems the optimal solution.”

Key words for me are ‘several’ ‘secondary’ ‘different lung areas’!

It’s great to hear you’re actually going to have them look at your case though and a get a definitive response. I’m wishing you all the very best with your mission, please do let us know what they say. Fingers crossed.

Wendy
x

Hello you girls,

I have just been wandering around the boards and found you here. I am not in your position at the moment but felt I needed to post to help you find some other people who can help and advise you.

There are some other threads on this site, with great women who are almost pioneering the cause for Cyberknife and curative aggressive treatment for mets rather than just palliative treatment. Check out the threads with Cyberknife headings and Stage 4 etc. Women like finty and Lemonhead will be able to help. They were both posting today on both those threads.

Good luck to you all.

Wandyx

Thanks Wandy I will check them out.
Jean

Thank you Wandy x

my mri brain scan came back clear so thats good news just waiting for bone scan report on friday :slight_smile:
kaz x