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Lung mets

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Member

Re: Lung mets

Hi, I had  my lung biopsy at Guys because the consultant thoracic surgeon holds a clinic at my local Kent hospital  but only operates in London so I had to go up to London for the procedure.  My onc is at my hospital here in Kent. Have follow up with them both in the next few days as lung nodules are def BC mets.  Still waiting on final histology but its looking like TNBC. So keeping  busy finding out all about it. In some ways  it's a relief to know -ive felt like I was waiting for the other shoe to drop!

Hope you're getting good treatment  and help in surrey - couldn't fault them at Guys,  they were great. So onwards  and upwards or whatever... pam x

Member

Re: Lung mets

Hi good to hear your story. Who is you onc at Guys ?

Member

Re: Lung mets

You are so positive, well done.     Think Ive gone through similar to you but for 2 years (seems like a lifetime).   Suffered with breathlessness, had plueral lung drain, and then talced !!!! Been ok for quite a while , but now breathing bad again,  Waiting for scan results, but dont feel very positive. Im 71 and would have loved a few more years, but am worried treatment stopped working, Im on capecitabine, with no side effects, except fatigue.   Good luck to you. Keep in touch .

.

Member

Re: Lung mets

Morning, thanks for your reply. Am guessing you're still having chemo. I have had a portacath from day one, couldn't have managed without it as I'm needle phobic so couldn't have dealt with all those canulas.  I've kept it flushed thru once a  month just in case I needed it again.....

I used homeopathy for sickness and other side effects from chemo which worked well for me and no sugar in diet, ketogenic some of the time. Cancer cells love sugar but Im diabetic anyway, so no prob for me. I had 5 days in hospital with neutropenic sepsis which was awful, so I would advise staying away from any bugs particularly day 10 to 14 - you might not realise how vulnerable  you are after getting over your initial side effects and starting to feel more normal.

Hope you're getting thru it all ok. Sounds like you have some travelling to appts. I live in a small village in Kent so had to go to Guys for my lung surgery but I appreciated their expertise so it was worth the journey.

Keeping everything crossed for you. Pam x

Member

Re: Lung mets

Unfortunately, I think the only answer right now is you need to wait for those results.. 

 

I'm also at the beginning of discovering what having lung mets is gong to mean for me, but one thing I have been told is that there are a LOT of options out there and not to get too bogged down in the idea of it being mets and secondary.

 

It sounds like your team is good, is it possible to request a change of main oncologist though as the one you have now doesn't sound so good for you?

 

Other than that, I can't help much I'm afraid, I can give virtual hugs and the promise that folks here will be there if you reach out, it could well be worth you looking at the "someone like me" section to find someone close to your situation who may be able to help you through this initial process with better empathy.

 

Good luck, and stay positive... 🤗 

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Member

Lung mets

Hi all, it's probably 2 years since I was last here and not sure where to post this but now find myself in the secondary group, looking for a bit of support. Brief BC history - 01/17 self detected multifocal bc in R breast. Biopsies confirmed

1st one ER/PR - HER2+ and 2nd tumour ER/PR- HER2 - , grade 2 IDC + axillary mets.

3/17 pertuzumab (P), herceptin(H) and docetaxel x 6, then 3 weekly P and H. Some reduction

12/17 biopsies pre surgery show TNBC.

1/18 R MX +ANC - 5 of 15 nodes showed mets.

4/18 to 5/18 15 x radiotherapy to R chest wall + SVF

P and H continued till 9/18.

Regular 3 monthly CT scans and a bone scan throughout.

9/18 ct showed small progression in lungs, too small to biopsy.

Onc decided to try H and Capecetabine to target either or. Discontinued after a week becomes of awful side effects from Cape.

01/19 ct stable , continued ct monitoring but had almost a year treatment free. New onc confused my scans with someone else and gave me the "put your affairs in order" talk!!!

11/19 ct shows some progression in thorax,  need biopsy to determine phenotype to work out any treatment

So, just had VATS pleural biopsy at Guys and waiting histology results! 

Sorry for the long message but everyones bc is so different, that it's hard to compare treatments and outcomes without all the info. 

Lung nodules have shown up since 1st scans but it seems there are more of them now though they're still only small and "pleural deposits". Managed to stay fairly positive and focused during treatment  but took a bit of a mood dive last year when I felt a bit cast adrift and new onc wasn t helpful(!!) but I'm told that's normal after treatment ends.Just not sure what to expect next - do I need to dust off my wigs??

Obviously no longer a new grandma and another grand child on the way so much to still be grateful for but although I'm now 73, I want much  more time!!! 

Grateful for any encouragement or info to keep me going. Thanks for taking the time to trawl thru all this. Pam