Hello , I’m new on here . Diagnosed with Grade 2 breast cancer in March - HR positive PR positive HER2 -ve . Coincidentally the week of mammogram I had routine chest X-ray which found bilateral multiple lung nodules highly suspicious for malignancy. This was a huge shock . I am on Anastrazole and Ribociclib - being treated as secondary breast cancer but the lungs are not typical and the chest physician is not sure what they are . when taken to MDT is was decided to treat as secondaries with a CT in 8 weeksto see if respond to treatment . Has anyone else out there experienced this kind of uncertainty over diagnosis ?
Thank you and sorry for rambling on a bit xx
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I have bilateral lung nodules found on a ct. They were not biopsied, I had a PET scan in which some lit up. I had another PET scan five months after treatment and the nodules were not showing any metabolic activity but some still there.
Are they going to biopsy or do a PET scan of yours?
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Thank you so much for replying !
I also had CT then PET CT which showed all lung nodules lit up .The chest consultant thought the nodules would be tricky to biopsy ( there are many in both lungs ) and could be inconclusive . They decided to CT me when I’ve done 2 cycles of Ribociclib and see if the lung tumours are shrinking it will confirm it’s breast cancer cells . If they haven’t shrunk they wii try a CT guided lung biopsy . Feel a bit in limbo with it not being definite .
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Hiya , also wondered what treatment you have had/ are on ? Hope you’re doing well
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I’m on Enhertu and Pertuzumab on a Destiny breast09 trial. I’m only HER2+.
I get CT’s every six weeks and have had two PET scans, last one was in January, next one is this week. Some lung nodules show on the ct, the PET in January showed no metabolic activity. Not sure why they don’t just disappear.
My breast lesion and lymph has completely resolved. My oncologist is talking about surgery stating because I am young and otherwise healthy.
I find your situation interesting. Even with your lung nodules lighting up, is your oncologist not completely sure they are mets?
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Hiya
It’s the distribution apparently that’s not typical - upper and mid lungs and my lymph clear . The radiologist flagged as highly suspicious of malignancy on the initial chest X-ray and subsequent CT though before I’d even had the mammogram results back .
That’s good to hear your breast and lymph are now clear . I’ve multiple small tumours in the breast ( no palpable lump) but an area of 6cm . Is your Oncologist thinking of surgery to remove the lung tumour . Did you never need breast surgery ?
Sorry for the questions , you’re the only person I’ve spoken to with lung mets
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No worries. I find maybe there aren’t many with lung nodules possibly?
He wants to do breast surgery, he says because I am young, I’m 48 and healthy that he wants to just get it out is what he said. I had a mammogram at the end of June and am bi rads 2 and no lesions are seen.
Not sure with the lungs, I asked awhile ago if the nodules could be removed and he said because of the location it might be tricky. I had extensive and I’m honestly not even sure how many are left, they only mention four on my ct which are stable I’m guessing because they don’t have any metabolic activity so they just remain there. I will ask again about removing them.
I honestly just go with the flow with my oncologist, I have to trust him. I have felt fine the whole time, my bloodwork is never an issue and I carry on with day to day life. It’s the metal part that is the worst.
How are you finding your treatment?
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Ah I see , makes sense to have breast surgery to be sure it’s gone . Im mostly fine with the treatment ,unfortunately my white blood count is low after first cycle of Ribociclib so having a break in hope they recover so I can start next cycle . Worst thing is the hot flushes from Anazstazole and Ovarian suppression ! And like you say it’s the emotional side of it that’s hard . I’m 53 , two children - 22 and 26 .Always thought I was really fit and healthy 
I’ve learnt not to Google and only look at this website , MacMillan and trust my Oncologist and Breast care Nurses.
,
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The only thing we can do is trust our dr’s. I hope your white cell count starts to come up.
You can private message me anytime if you need someone to talk to
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Hi niki2 and Deb_M, I am so interested to see your posts. I had mastectomy with fnc, chemo and radiotherapy which finished about a year ago. Im now 51 , and my tumours were 10cm, 3cm , 9lymph nodes. Hormone positive. High risk due to ginormous tumours and burst lymph nodes so have also been on abemaciclib, plus letrozole, zoladex and bisphosphonates… Having 4 weekly bloods done and calcium has been high so had ct scan as it could indicate bone mets. However on Wednesday i was told the scan had showed a tumour in my lung and that i will go on treatment for secondary cancer. However when the lung specialist saw the scan the next day they rang to say it wasnt what they would expect to see so more tests needed. They are saying it is cancer but atypical. Im waiting for a date for a procedure where they put me under to get a biopsy, as it is in an awkward place. Will be interested to hear how you get on as it sounds like we may be having a similar experience. Sending hugs, NorthernJay xx
I have multiple bilateral lung mets, original diagnosis in 2012 and then secondary diagnosis in 2022. I had Ct guided biopsy as they weren’t sure if secondary or new cancer. I am on palbociclib and Fulvestrant and seem to be doing okay. I had some radiotherapy in January as one of the tumours was causing a partial lung collapse which has resolved the issue. I was told they will not operate on the lung tumours as too many in too many places so chemo was my only option. Cycle 25 or 26 coming up 
Good luck and hope they find a treatment that works and keeps you stable
Spikey
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Hiya and thank you so much for your reply . I’m really sorry you are going through this . I think the uncertainty and waiting for investigations is really hard . Hope you don’t have to wait too long to have that done and that there is a definitive diagnosis from it with a solid treatment plan .
Your situation is very similar to mine in that I was told definitely secondaries in lung then chest physician thought unlikely . My oncologist says that we will know more when I’ve had the CT scan but I find the waiting and uncertainty difficult at times .
Do let me know how you get on and I wish you all the very best
Warmest wishes , Niki x
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Hi there and thank you for your reply .
It’s good to hear that your doing okay on your treatment . How often do you have scans ? Is the chemo more for the lung tumours or breast or both and is that alongside the targeted therapy ?
Sorry for the questions , it’s all quite new to me and I don’t want to seem prying but am curious .
Sending all good wishes , Niki x
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Hi Nikki
I have 3 monthly scans and the treatment is for all the tumours as they are all breast secondaries so all require the same treatment.
Happy to answer any questions you have if it will help you
Spikey
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I had a PET scan last week (also had one in January) that shows complete resolution in my breast and lymph.
There are bilateral lung nodules that the report says “no significant and minimal SUV” one is at 1.1 uptake.
Of course I try to do some reading and it says 2.5 and above is malignant.
I feel some relief as it doesn’t seem like anything is active. I’m basically living my life.
It was after this scan that my oncologist said he wanted to talk to the breast surgeon.
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Hiya
This sounds really positive and thank you for sharing your experience .Hope it goes well with seeing the breast surgeon .
X
Hi niki2,
I have had the biopsy and it is secondary breast cancer in my lung, a 2.3 cm solitary tumour. However my primary was hormome positive and the secondary is hormone negative. So im due to start chemo 12th sept and they will scan me a few weeks in and see if the chemo is helping.
Ive also asked about cyberknife radiotherapy as although there are strict criteria to be eligible for this on the nhs, im hoping i might be eligible. So ive been referred for an opinion on this, and if they agree i would have it prior to chemo.
So there isnt so much uncertainty now, and although secondary cancer is bad news, im trying to focus on my current good quality of life.
Hope your investigations and treatments are going ok.
Hugs, NorthernJay xx
Hi northernjay
Good to hear from you .
I’m sorry that you now have a secondary diagnosis but also it’s good not to have the uncertainty and know that you can start treatment soon .
I had my CT scan last week and just 2 days ago saw my Oncologist who said that the lung tumours are responding well to treatment but that this does confirm secondary breast cancer in both lungs . Like you I feel sad about the confirmed secondary diagnosis but am pleased that theres no more uncertainty and that my treatment is working . Also like you I’m focusing on how well I feel now and enjoying a good quality of life .
I hope you are eligible for Cyberknife - as I understand it solitary tumours are treatable with this .
Do let me know how you get on and feel free to message anytime .
Sending you hugs and warmest wishes
Niki X
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Thanks niki,
Im sorry your diagnosis has been confirmed too, but glad to hear treatment is having a good impact.
I see that I’m a similar age to you…I’m 51 with a 19 and 20 year old, and likewise had been fortunate to have been fit and well with no previous health issues.
Hoping that this will stand us both in good stead for our bodies to cope with the treatment and to make the most of a good quality of life.
I feel like i may be clutching at straws with the cyberknife referral, as my oncologist doubted i would be eligible…but he then spoke with the radiotherapy team who said they were happy to at least take a look at my scans and see.
Warm wishes to you too niki,
Hugs, Julie x
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Thanks Julie , let’s keep in touch xxx
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