Breast cancer metastasized to lungs.

Hi there,

I was diagnosed de novo with lung mets (between 5-10 of them) back in January and my largest two were 9mm and 7mm.  I didn't have any symptoms of breathlessness or a cough or anything, so it came as a total shock.  I'm TNBC so I went onto 6 rounds of chemo (carbo + taxol) which has resolved them.   Wishing you all the best

I’m sorry for your predicament.,

I have breast cancer gone to lungs which is ‘incurable’.

I had. My first chemo today. 
I’m on the road . Let’s keep in touch as I have several nodules as well as a big lump in my breast.

im trying to learn as much as possible about it 

hope that helps a bit 

What is TNbC? 
thanks

Hello Lifelover..what a fantastic moniker!  Guess it says it all about you, really. 

Thanks for responding. first of all, TNBC is triple negative breast cancer. 

I have found, during my cancer journey, that it is all a learning curve. I have also found that, mostly, the consultants and their registrars tell you nothing relevant. Just the basics. Maybe this is just Manchester? Anyway, most of what I know has been gleaned from medical types of cancer/breast cancer internet sites. Then I ask relevant questions, to which, to be fair, I do get some answers, if those answers can be given at all. But I have not yet met a doctor who gives more information than is basically necessary (as they see it), and for me personally, I want to know everything!! absolutely everything. 

i had an appointment yesterday, at the lung cancer clinic, which was all a bit pointless really, The registrar was only able to confirm that I do, indeed, according to biopsy findings, have breast cancer metastasized to my lungs. Of course I knew it anyway, but a box needs to be ticked to record that I have been ‘formally’ advised of this, I guess. The guy didn’t know much else really. He was not able to tell me the sub type, as the biopsy results have been sent off to a breast cancer pathologist to get confirmation of the sub type. I was very disappointed at this further delay. There will now be a multi disciplinary meeting (don’t know when, yet), where my ‘case’ will be discussed. Presumably I will get an appointment for the next part of this journey. Not sure whether that will be back at the breast cancer unit, or at the actual treatment centre. 

By the time I got home and reflected on the appointment, I was actually laughing, because the guy who I saw was, of course, a lung cancer guy, who knew less (not ‘nothing’, of course) about breast cancer than lung cancer. Totally understandable. It was just amusing to me that I seemed to know more about the ‘finer points’ of breast cancer than he did. However, to his absolute credit, he did try to answer one question I had, which I didn’t really think I would get an answer to. As I have ‘innumerable’ ( too many to count?) nodules spread throughout both lungs, between 2mm and 8mm, I wanted to know that, if you took all the nodules and gathered them all together, like a ball of plasticine, what volume would this equate to in terms of (size) staging in lung cancer?  We both realised that his answer would be speculative, but he came up with the response of lung cancer stage two or three. That helped me a lot. Even though I know it is just a guess. So, even though I don’t know which sub type it is, as yet, which will give me an idea of how ‘aggressive’ it is, I do know roughly (very roughly) what sort of volume the whole of the cancer takes up in my lungs. I wanted to know that, even though I know that lung cancer behaves differently (in terms of progression and aggression) than breast cancer. The guy also confirmed that there is no primary tumour, so those little cheeky cancer cells which are now in my lungs, appear to have broken off and ‘escaped’ into my blood stream before my double mastectomy took place in 2015.

Nevertheless, as a result of this appointment yesterday, I feel less stressed about the period between when I have very few symptoms (now) and when more symptoms will occur in the future. It was this expanse of time which I couldn’t get my head around, really. I’m a bit better about it now, as each day passes.

So..onto you..sounds like you have what I understand to be ‘de novo’? How many nodules do you have in your lungs and what size are they? Has the tumour in your breast been dealt with as yet? How big is/was that tumour?

I guess, having answered your message, and given that you are moving forward with treatment, I must be honest with you and tell you that I am unlikely to have any treatment at all. By choice. My choice. Therefore, the fact that my treatment road (ie none treatment) is likely to be different to yours may mean that we have less in common than you had thought, and I will totally understand if you do not wish to continue liaising with me, as it might not provide the support you may have hoped for. I may be totally different in my attitude to knowledge than you are yourself? If that is the case, I totally understand. In any event, I wish you well, and my thoughts are with you as you travel your own road. 

Wow! I am bowled over by your reply. That was so great of you to take the time to tell me all that.

I am on the chemo road yes. But I am very much dithering about it and am reading all I can about other options.

my situ: tnbc(thanks for that!) found on 4cm lump in my breast I am very large in this dept - this is why I only found it later I guess- on left and biopsied to find two lymph nodes with tumours too. 
then

i was Ct scanned mri Ed and eventually PET scanned to discover it had metastasised to my lungs. Coupla nodules in each lung. I don’t know the size does that matter I thought?

anyway so began meeting oncologists. 
1. was black and white. Told me straight off it was incurable. 
I was on my own thinking that I was was just meeting him. Very shocked. 
here started my denial.

after the Pet scan where it was confirmed, I saw another oncologist that the the nurses were raving about.

he is lovely. He patiently answers all my questions.

im sorry you’ve had a bad experience. I live in Southampton and the hospital here is fab.,

I’ve been amazed so far at their efficiency and care.

since I met him - btw he told me I had 3 years 5 at best-I have become the ‘ knowledge is power’ guru!!!

I’ve found out about nutrition , supplements, healing ( thought that WAS NOT ME but at this stage I’ll try anything!). Etc

i knew I had to act fast so am going ahead with the chemo and immunotherapy. I have 18 weeks of it every week and my first one was yesterday. 
I asked my dr what would be the outcome if I went another route. He said I’d have months.

however my reading tells me differently. Is this what you hope to do?

im 56 but still want so much more!!

may I ask why you’re deciding to not have treatment?

I like to be informed and I’m reading everything I can about my situ. Knowledge is power as I say.

They can’t operate because there is no point. That’s the bit I don’t get.

I will wait my time to see if shrinking if tumours happens. I will then ask again about  surgery as I want it gone! 

I listen but also want to be in co troll of it. My body: I know I can do more.

by the time I recover from surgery they think it will have spread again. Who knows. 

id love to hear back from you.:)

What a lovely reply. Thank you. I’m debating whether to try to make this conversation more private…ie, out of this forum…not because I have any thoughts about privacy for myself, but mainly because both of us have shared such personal information, and, because you have said you would like to continue with our contact, maybe it is a bit boring or personal for others to read. Whilst I am happy to do that, if that is what you would prefer, for the moment I will continue here as long as you like, or feel appropriate.

Another reason is that I feel almost embarrassed about my (possibly easy?) choices regarding my own future path, given the stories I read on here about the bravery and associated suffering experienced by others (your own story included). What tragic stories there are here…people, including ourselves, go on with our lives, ignorant of the pain and suffering experienced by others…until it happens to us, or our close friends and relatives. And through all their suffering, people (mainly women) strive and suffer so that they can have just a little more time with family, friends, their children, their responsibilities, etc. I read these stories and just can’t imagine the suffering experienced by these women. It was not until this final diagnosis that I, also, began to understand what it was like to know I was going to die (as we all do eventually), but worse still, to watch my/our friends and family around me/us suffer, possibly even more so as they looked to a future without their loved one. To feel, myself, the trauma of that had escaped me until now.

So, that said, I will tell you (as you have asked) why I am not going for treatment. I need to stress, really hard, that this is just abut me..no judgements of others…and recognising I am not the same as others…we are all different.

I am nearly 20 years older than you. Aged 71. I have always had a bigger fear of old age than of death itself. I have watched relatives, older than me, live to a far greater age than myself, sitting on their sofa’s, with only tv to watch, with illnesses that have rendered them with difficulties with mobility, which have finally resulted with visits by four carers a day..handling personal care issues which would embarrass me to the extreme. Fear of dementia (both my parents had dementia when they died) and any other illnesses which take senior citizens, many of which are too horrible to imagine. I could go on here, but will not add any more abut this. Suffice to say that that scenario just seemed hellish to me.

i have three adult children. I live in Manchester, but they all live in the south of the country.  Truly wonderful children, all of them. but I have never subscribed to the idea that children should have to look after their parents. I made the choice to bring them into this world, and they should not have to feel that it is their responsibility to look after me. Giving them birth was my choice..they had no choice in the matter..and whilst I know they love me (as I them), I am not their responsibility.

i have two grandchildren, one severely disabled. My daughter has enough difficulties with that burden. I will not add more practical problems in requiring her to look after her mother, travelling vast distances, etc. My other two children have their own lives, have forged careers, etc of which I am proud. Proud of all of them…but I don’t want to be an extra burden. The practicalities of looking after me when I get old and infirm are not ones that any of them should bear.

After I had my mastectomy, and gave consideration to it, I realised that when cancer visited me again, I would not resist, this time. I am pleased to have had these extra years, but I have other illnesses which will impact more so in the future. I was diagnosed with chronic fatigue syndrome in the year 2000. Whilst I have managed (with a lot of rest) to live a fairly normal life, I knew that any cancer treatments would make this an awful lot worse. so I refused chemo, radiotherapy and hormone treatments offered to me. To be fair, I did try tamoxifen for one month, but terrible side effects (as per my fears) set in quickly, and I stopped it. Quality of life was more important to me than quantity…especially if that ‘quantity’ meant that I suffered those extra years in pain. That is still the situation now.

So that, in a very large nutshell, is why I plan to refuse treatment currently.

HOWEVER… you are in a totally different situation. younger than me without, I assume, any of my own experiences. You have TNBR…that is totally different from me. From your moniker, and your comments, it seems like you are not willing to give up, and it sounds to me as if you plan to become a cancer thriver. You may have children…younger than mine…who need you? You may have a partner who you are thinking of (I have a partner..ten years younger  than me….since 2012, and she has known my thoughts on this for years…she will be devastated at the outcome…but knows she will get through the bereavement and get on with her life. She says that very the years I have prepared her for this. In addition to that she works in a hospice, and before that with people with dementia…she knows what old age can bring, with its own suffering). It may be that you absolutely NEED to live as long as possible…for their sake’s.

But in any event, it sounds like you might have a bucket list? Things to do which you want to experience? Either way it is clear that you want to live…for as long as you can, with as much of a fulfilling life as you can! So go for it, as feels right for you.

I just remembered you mentioned about alternative therapies.  I looked at these, and believed for a time (before the mastectomies) that they might help. Relaxing ones certainly did..others I tried didn’t make any difference, and I realised there is a lot of information and stuff out there on the internet that you can waste your time, hopes and money on. I do not plan to go along that route any more, but one thing I do do, and have for a number of years, is use a tablespoon of milled flaxseed/linseed as well as milled sesame seed with my breakfast yoghurt. However, my cancer is oestrogen-led, and I started taking this to try to give myself more energy as the menopause progressed, as well as in relation to chronic fatigue. I knew that they were plant based oestrogens (phytoestrogens), which, I have discovered work in a similar (but much weaker) way as tamoxifen. Lots of scientific data and studies about this.  But I am not kidding myself that they are as effective as tamoxifen….however, I comfort myself thinking that they may be delaying things just a tiny bit. Who knows..the main thing is that I like them with my yoghurt and it makes me feel a bit of positivity.

Onto other things in your message..you say they can’t operate as there is no point…do you mean can’t operate on the breast tumour? Honestly, I believe that if they say there is no point, then you should probably believe that. It may mean that even if they do operate, the fact that it has travelled further means that it is in your blood system now, in your lungs, etc…so I would imagine that there is no way that that can be halted in any way, other than chemo and related therapies like immunology and hormone therapies. In many cases immunology has been a major breakthrough, along with targeted therapies and hormone therapies. Whilst at present your consultant says three to five years, with new approaches coming along, it could be much longer than that, in the end.

having said all that, I understand where you are coming from regarding your thought processes. as humans, many of us need to feel that we are in control of our lives, and cancer seems to take that away…but it sounds like you will make sure you keep trying, as you “want so much more”. I would say, trust your consultant..they know what works, which therapies and drugs interact best with each other, etc. They want the same for you as you want for yourself…more time! It’s just the most massive roller coaster that any of us have ever been on!

I’m going to finish there for the present…hope my honesty has helped you a bit, and look forward to hearing from you again, if you want to offload or say more.

Gosh. I appreciate every word.how amazing to be in your place of life. Content with what you have.

 May not be there yet but WHEN I get to 70 and cancer returns I’m sure I shall be with you in my thoughts.

I can’t be there yet. Give me 15 more years and I’ll be content.

Im looking for a person with similar situ as me. Someone I can compare with , share new ideas with and help support. 
I shall check in on you from time to time and tell you how I’m getting on.

tHank you and bless you for your sharing and story. 
the mountain begins!!

I understand totally why you need a different support. I hope you find it..perhaps our liaison will draw that person to you, if they read the texts.

i hope things go very well for you in the future, and you get to do everything you want to do.

Hi Lifelover56 

It’s usual to treat cancer that has spread systemically rather than through surgery - as cancer cells are already circulating around your body, new mets could pop up even if they remove the primary cancer.

I think those of us who are eligible for immunotherapy for TNBC are very lucky. Whilst it doesn’t work for everyone who is eligible, it can be a game changer. I have been in remission for a year following Pembrolizumab and NAB-Paclitaxel for metastatic TNBC. I hope immunotherapy works for you. 

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