No treatment re secondary breast cancer in the lungs.

Hi Lulubella 

I’m Anne, one of the Community Champions here on the Online Community and, while I don't have the same cancer as you, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list again.

I don't know if there are other people in the group who have chosen not to have treatment but, if there are, I'm sure they'll be along soon to share their thoughts with you.

Thanks for doing that. 

Hi, I was diagnosed last Dec with secondary breast cancer in the lungs, Im on treatment now my 11 cycle of ribociclib and letrazole, can I ask what your symptoms are. 

Hello Kine

its good to hear from you, though I am not sure I can tell you very much. As I said in my original post, I have decided not to have treatment. a week or so before Xmas I saw a doctor at Christie’s Manchester (not the consultant), and she said that the treatment which I would be given would be Letrazole and Ribociclib. I have not yet had my final appointment regarding my decision (not yet received it), but if I can get in touch with that department via phone, then I will let them know that way.

So…to answer your question, I am assuming that you are asking about symptoms regarding these two drugs?  If, so, then I cannot tell you, I’m afraid, as I have not taken them. However, I am interested to know if you have side effects/symptoms with them, and what they might be.

However, on the off chance that you are asking what my symptoms are currently, then I can say that I have very few symptoms in relation to these secondary breast cancer in my lungs. I went for a general lung health check that was being offered in Manchester to people between a certain age, and who had smoked, or were still smoking.  That was when the cancer was picked up.  I didn’t have any symptoms before that ct scan, but I may have a cough now, or I may not…seems more like a cold really…and the cough happens maybe once a day! Sometimes my chest feels a bit tight..but not often..maybe twice a week?…Sometimes I feel a bit breathless, but I’m not sure if it is anything more than I might have felt over the last couple of years as I have become older (I am 72).

I would like to know the doubling time of the cancer, but I haven’t had enough ct scans for this information to be even vaguely available. As I plan not to undertake the treatment offered, I will not be receiving any more appointments…including for a new ct scans.  Guess I will only know as the symptoms start to develop in the future.

Im not sure that any of that helps with what you wish to know, but I would like to know if yu have any side effects from the drugs which you are taking. Thanks in advance.  Lulu.

I'm always breathless and I cough a lot of phelm up in the morning, at first I had a thoracoscopy due to bilateral effusion and had a pleural biopsies where samples taken, they drained fluid away and then underwent talc pleurodesis. This was December 2023 then in the January the oncologist offered me the ribociclib whilst I had all ready started the letrazole. The side effects at first was manageable with a few bad heartburn attacks now the only thing is I'm always tired, all my ct scans are showing no progression which they say are good. I'm 64 and I was 50 when I had my breast cancer, it's nice knowing someone else as the same diagnosis, there are not many on here with it on the lungs

Thanks very much for explaining your symptoms. They are very different to mine at present.

You are right when you say there are not many on these boards who have secondary breast cancer in there lungs. It feels a bit lonely at times  sometimes I look at the lung cancer board…I know it’s not the same, but in some ways there is a feeling of ‘connectedness’, simply because it is about lungs!

Can I ask what the size of the nodules were when you first started your treatment? And were the symptoms you described above the ones which led you to have the ct scans which ‘discovered’ your nodules? In other words, how far had it all progressed by the time you had the first ct scan, or started your treatment?

Im really pleased to hear that there has been no progression of your cancer…..you must be over the moon about it. You mention fatigue…One of the reasons I am not having treatment is that I already suffer from Chronic Fatigue Syndrome, which already causes me to feel fatigued all the time. In fact, at the time of my double mastectomy in 2015, I did not have radiotherapy, chemo or hormone tablets afterwards, as a result of my concern about how all of that would impact on my fatigue. I’ve had nine years since then, where I can at least do some things, provided I rest a lot. I can’t imagine how bad I would have felt during those nine years if I had accepted those treatments. But now, possibly as a result of making those choices, here I am again!! I guess that’s life, isn’t it?

I started being breathless Aug 2023 and coughing thinking it was a cold but after not getting better I went to the doctors, xray on my chest which showed fluid, ecg, but after a few no improvement so went back sent for another xray more fluid, from then on I was on 2 week refferals untill I was finally diagnosed Dec, I don't know the size but I also have a dark pad on my left lung, I can just about get round the supermarket with the aid of the trolley. I went to a wellbeing at the christie and a lady there had a nodule on her lungs and could still manage to go out running. 

You mention the Christie…is that the one in Manchester?  It’s interesting about the woman you met who is still running. I think I could do that if it wasn’t for chronic fatigue. lol.

My largest nodule in November was 8mm. I have others (possibly about ten) sized between 4 and 7mm, and then many others (number unknown…they just call them innumerable) which are smaller still but show up on the ct scan (from October this year).

You mention the pleural effusions and fluid. I don’t have that as yet, but anticipate it may happen. None of the cancer has spread to any lymph nodes, not bones, nor any other organs, and of course I consider myself lucky about that!

It’s been really great having these ‘chats’, as I wasn’t in a good place emotionally this afternoon, feeling a lot of emotional tension and tearful. I had spent time with my daughter in Wiltshire the last day or two, and it’s been difficult trying to explain my decisions to her. She doesn’t understand, nor agree, but says she respects my right to make my own decisions about my own body. It’s still hard for both of us as I feel her emotional pain as well as my own. That’s one of the reasons I asked about your symptoms, etc., sort of checking out whether my decisions are right..or not, as may be. 

Hi Lulubella,

I am the same age as you and have lung and liver mets + couple ofsuspicious areas on spine.

The lung met which was biopsied was 1.5cm.

I have started tak8ng Letrozole as it shrunk my tumour when I had my primary diagnosis.

I am also recommended to start Ribociclib, but am not too keen, and certainly would not want to start with 600mg.

I totally get where you are coming from, and would happily never set foot in the hospital again. 

How are you getting on with Ribociclib Kine?

I'm on letrozole, but have not started on Ribociclib yet, and am not overly keen to do so