Breast cancer metastasized to lungs.

Thank you so much for that.,

Hope is a word I shall have tattooed on me one day for sure!!

tell me a bit about you

I need every story I can grasp onto for reassurance….

Take a look at my profile by clicking on my user name. There’s also a link to my blog in that entry should you have a few hours to while away - a warning it has not been a straightforward path to where I am. 

I also have lung mets, known here in Spain as release of balloon metastasis but also known in UK cannon shot metatasis so very extensive and in both lungs.    I’d had successfully treated stage 1 breast cancer in 2023, a clear mammogram in January 24 and then in April I found a little lump on my right clavicle.  It had mutated to triple negative and come back with a vengeance.    Now stage 4 and incurable.  

Being treated with chemo.  First line looked promising but again mutated and progressed very quickly between first promising CT scan and then the follow up 3 months later.  So very disappointing.   The genetic tests all came back negative as did BRCA ones and PDL so nothing specific they can target so no immunotherapy or anything else, just old school chemo.

 After failure of GemCarbo, just completed cycle one of Paclitaxel.  They’re hitting it hard with 3 weeks on and one off.   I’m tolerating okay but it’s hard going.   I started chemo in May feeling 100% fit, no symptoms apart from neck lump so very scary it’s gotten so bad so quick.  

I’ll stay on Paclitaxel until it fails or I stop tolerating then Trodelvy is my 3rd line of treatment.    They’re already looking at trials but so far nothing suitable available.   I feel I’m at almost last chance saloon so can only hope and pray one of these options stick for me.  They seem to follow European/Spanish guidelines to the letter when it comes to treatment here.   Chemo by numbers I call it.  My oncologist is good, trained at the Royal Marsden, very empathetic and lovely but I feel has to go by the book.   She tells me I’m doing well, bloods good and coping fine.  She doesn’t see me in dead of night scared sh*tless..  She’ll be my oncologist to the end stages, we’ve already discussed but with no timelines,  I couldn’t stand that.  

Spain is already signed up to assisted dying so at least no trips to Geneva or the like!  Seemingly highest percentage of takers of the service are cancer patients!   I’m trying to remain positive, not feeling quite so hot today as hair has finally decided to start a major fall out.   Timing fabulous just before Christmas but hey wouldn’t have expected anything else the luck I’ve had.   

I have 2 daughters one fully on board with it all, the other in denial.  The health scientist and the computer whizz.  If I need to tell them anything the scientist does the heavy lifting for both.  

Next CT scan will be early 2025, then let’s see how things are going. My lungs good just now and responding well to this chemo, breathing good.  Thank you years of yoga and yoga breathing, I knew it would be good for me!  I still do yoga stretching almost daily but definitely continuing daily with yoga breath work.  Almost 100% normal oxygen saturation on last testing.   

onwards and upwards (gently at this stage!)

Hello Ochno.

i just thought I would send a reply. Compared to my journey, which has been ‘slow and sedate’ really, yours has been very much faster. Clearly you are a fighter and battling hard to be a ‘thriver’. You have my full admiration, as I also admire the many many others on these boards who have been thrust into these nightmare situations. I sometimes think that it’s weird, really, when you are suddenly thrust onto this journey. So many people each day receive so many appointments and treatments, so much bad news, etc., and until we are here we mainly don’t give it a thought abut what is going on behind the closed doors of houses we pass in our daily lives. It’s all a total whirlwind of thoughts and feelings, as well as concerns and worries about our nearest and dearest.

i have three children, who are all taking it differently. One daughter is like me, and is a planner for the future…wants to get things set up and sorted for the future, etc., WhatsApp groups between the three of them, discussions, etc. My second daughter is more a ‘let’s wait and see what happens next’ person, because in her view everyone is different and we won’t know the outcome until further down the line, when symptoms start to appear. In this, of course, she is right, but it is clear that she doesn’t want to look so far ahead. And as for my son…he is supportive and empathic, but doesn’t communicate much, really. Of course, for all of them, and my friends as well, it seems surreal at present. As it does for me.

I saw the breast cancer consultant earlier this week, who signed me off from the breast cancer clinic, and referred me to the Oncology and treatment centre at Christie’s hospital in Manchester.  He thought I wouldn’t get an appointment until after Xmas, but in fact I got a call yesterday with an appointment on 19th December, just six days away. The breast cancer consultant said that most likely I will be offered Hormone Therapy or a trial. No chemo or anything else. He said that hormone therapy had been shown to be as effective as chemo, which surprised me, really. Of course this needs to be confirmed by the oncologist, who will know more, and will have seen many more cases such as mine than the breast cancer consultant has. The breast cancer consultant gave me a doubling time of 45 to 90 days, which actually was faster than I had thought, or read on the internet (medical sites only).  I will be interested to hear what the oncologist says about this issue. In the end, I guess when it happens, it happens, but I do like to know these things, planning for the future, etc.

In Spain, do you have contact, as we do here in the UK, with a breast cancer nurse/macmillan nurse or similar, who you can keep in touch with if necessary?

Hi there, can’t quite believe sometimes how our retirement to Spain has turned out.   Wasn’t quite in the plan.   It’s been hard negotiating the Spanish Healthcare system and also my Spanish not good, didn’t really have the brain capacity to deal with all this and learn the language fluently, I get by!  No healthcare nurses here, none of the fluffy stuff, it’s all clinical and by the book.  I’ve been lucky I have a real rapport with my oncologist and her English is excellent.   She says it how it is and has been proactive in driving my treatment forward, pushing me in the right direction.  She has a heart and has my best interests at heart.   

Not feeling like a thriver today, my friend shaved my head last night.   I look like a sick person, must buy the right hats.   Even here in Spain I’m freezing.  I was so upset yesterday but embracing it a bit more today.   It is what it is!  Shopping opportunities, why are all chemo hats so naff!   

It’s good you have your appointment early, the waiting is the worst.   I remember getting my diagnosis on 20th December 2022.   That ruined Christmas but better knowing.  Hoping you get your treatment plan sorted soon too.  Hormone versus chemo?   Not heard of that before

It’s true you never know what’s going on in other peoples lives.   It amazes me when I go for chemo just how strong my fellow patients are.  We all just quietly get on with things.  It’s tragic there’s no magic cure out there.   

I shall fight the good fight, swearing like a trouper to the bitter end.  

Hope all goes well for you x

Hi Ochno.

Just thought id respond to your reply. Sounds like you trust your oncologist, which is great for you. I’m guessing that if you need to, the MacMillan staff on this site would be interactive with you if necessary.

i wish you all the best for the future. You are clearly a very courageous woman.  You will be in my thoughts. 

Thank you, taking it day by day.   Some good, some not so good when I feel a bit overwhelmed.   MacMillan and each and everyone on here has been so helpful and understanding.    I have Cudeca here I can reach out to if required, so far so good xx.  

Now to find some decent cancer hats, don’t know if it’s just Spain but I really don’t want to look like some tragic Quaker lady.    I’ve looked out a supersoft Scottish beanie, might start a new trend!  Who knew I had such a tiny head!

xx

Good luck with the hats. I agree…I would rather have a bald head than put on one of the kind that are normally available.. however, I understand the need to cover one’s head (perhaps??).

I hope someone else picks up this thread with you. I don’t think I am the right person for that, as I don’t plan to have any treatment at all. Just palliative, really. Just as I hope that someone connects with you, I also hope someone in my position starts to connect with me. I consider that it will be a lonely road, and I am hoping to have communication with someone else on that same road.

take care.