Hi, Sorry this is likely to end up a bit of a ramble!! I had primary breast cancer in 2017, all annual mammograms and breast checks fine since then and was on tamoxifen until recently. 2/3 years ago I developed a cough, was treated for all sorts but never went or has any big improvement and I went very downhill last year. I was back and forward to GP’s constantly until in Nov 22 I ended up having a CT scan from that referred to respiratory.
I have been seeing respiratory consultant since Feb 23 and despite numerous breathing tests all being diabolical and several CT scans showing changes and some pleural effusion kept being told it was nothing sinister. Had a CT bone scan just incase in May and was apparently normal. Fast forward to Aug where I was just so breathless all the time so I had yet another CT scan in Sept which showed a very large pleural effusion. So I had the max they could take in a day drained off and tested which showed cancer cells, cue the start of my secondary breast cancer journey!
In between all this going on, I found some weird patches on my scalp in Feb 23 which got worse from May, again had spoken to GP about them but there never seemed to be any real concern about them or about the coughing tbh. Eventually was referred for those, had a biopsy (also in sept) and they have cancer cells in too as well as an enlarged lymph node in my neck that came up in July but not biopsied until recently.
Knowing what I know now, in my opinion there was a lot of red flags that have been missed. I’ve recently got access to my GP records and reading some of the stuff there, there are lots of inconsistencies/ wrong info in there that if I had known at the time I’d have addressed. Also I’ve had to deal with copies of letters being sent from hospital showing incorrect information for me e.g drugs I’ve not ever been on and the worst one was the follow up letter from scalp biopsies saying it was metastatic lesions containing renal carcinoma (It isn’t, it’s breast cells, didn’t stop the initial panic that I could have a new different primary though!).
Then there seemed to be no urgency to get me back to oncology either, it was nearly 7 wks from finding out about SBC to seeing oncologist, maybe that’s normal?!
Told you this would be a ramble! Anyway…… I now have lost faith in the GP’s/ hospital and want to make sure that going forward things aren’t overlooked and the right action is being taken.
When I saw oncologist for the first time 07/11, I was told I would have an MRI scan so they’d got a benchmark. I’ve only ever had mammograms, X-rays, chest CT scans and CT Bone scans done, should I have had an MRI done before now?
I currently have metastasis in pleural fluid (although going to be asking when I go soon about if anywhere else in lungs as some things I’ve read in GP records don’t tally up), on my scalp and widespread in my bones - Ribs, spine and pelvis. The bone mets were confirmed from bone scan in late Oct, again going to ask a bit more about these too as there was apparently nothing in May and I wasn’t in right frame of mind when I saw them to ask these questions.
In the last 2 weeks I’ve had a pleural drain put in so I can keep getting excess fluid off and started treatment - I had prostap injection, started on letrozole, ribociclib, had denosumab injection and take calcium tablets. I’ve still not had MRI date through, Secondary BCN was going to chase it but I’ve had nothing yet. My concern is, how do they know the cancer is not anywhere else? Also do they use a contrast dye for an MRI?
If you’ve got this far thankyou! 
I would ask for a PET scan plus a contrast TC on brain, as PET won’t see brain.
Ribociclib go everywere in the body, so that is the important thing, and so even if you have cancer in othercspots, is most important that you start the meds…than in the mean while you can do more test.
But this is just my opinion!
Ribociclib was super powerful for me, and even if now stopped working, it did get ready of all my mets befor, and my PET went from a super costellated sky to a dark no e idence of disease one in one year.
I wish you good luck, ribociclib is a strong medicine. And I hope somebody with more knowledge may answer you.
Thankyou for you that, very reassuring to hear about ribociclib. Glad to hear it’s been working for you, long may it continue! I’m hopeful it will change things for me!
I have developed an allergy and had a bad reaction to the contrast dye used for CT scans and although the hospital know about it I’m not sure they’ve taken it into account. No one had mentioned a PET scan something I’ll ask about.
I have no idea but I’m sure others on here including the nurses can guide you but just wanted to say, well done for being persistent and reaching out and please keep going,
As we know each day brings opportunities and advancements in all manner of treatments
Hugs and many blessings to you
Hello lovely.
I am so sorry you are going through this. Remember you can always get a second opinion, get a different doctor. I am not sure though the waiting times.
I agree with Amel i would ask for a pet scan. The problem i have found and just recently CT scans dont pick everything up even with the contrast dye.
I had 2 lesions in my liver and the cat scan didn’t pick it up, but the pet scan did same with the bone scan, CT said everything looked ok but the bone scan said progression in my ribs, which unfortunately I was taken off my second clinical trial.
I pushed for a new biopsy in my bones and i have now found out my cancer has changed to Triple negative.
Its so hard when you are seeing conflicting information and we can only advocate for ourselves going through this journey ,I understand you would start to lose faith in your medical team.
I live in Australia so treatments and time frames are a bit different.
Normally with my previous MRI i would have the scan for about 40 minutes and then they came in and put the dye through and the last 10 minutes they take more imagings.
I always take a valium when i am in the MRI just to relax me,through that one.
I was diagnosed last year at 49 de-nova, er+pr+ her 2 negative I was put on Riboclicib and Lextrozle and have the denosumab monthly and then zoledex implants but then i had an oophorectomy.
The Riboclicib is very good it targets all the cancers and i found it very tolerable, the Lextrozle made me ache a bit but was managable.
I would confirm though taking calcium tablets as sometimes we can produce to much calcium.
I take 1000iu vit D daily and 1000iu of magnesium recommended for me by my oncologists. Always check though.
Unfortunately for me i got progression as they found out i have the pik3ca mutation.
So after Riboclicib, I have been through 2 clinical trials as my cancer has been naughty and now i am starting my 4th line on Thursday for TNBC.
I think it its good you can get to your medical records, its a bit harder here. Fortunately i have a good GP now and he shows me all my results. But i do agree with my oncologist not to read into Dr google as cancer is so complex and different in each individual.
I pray sister, you get some answers soon and i so admire your strength 
. Keep pushing and hopefully all will fall into place. I wasn’t on Riboclicib for more than 4 cycles but for me it a good treatment side effects wise.
I pray they get to the bottom of the excess fluid, I am sure it isn’t a pleasant experience having to have it drained. Do you feel an instant relief afterwards?
You are in my thoughts and prayers
Let us know how you go. 🩷🩷
Thankyou, I shall certainly ask about PET scan and see what they say. The pleural drain is quite straightforward tbh, the hardest thing is puttin a dressing back on! Definitely notice an improvement in my breathlessness when it’s done as getting a lot off at the moment. Hopefully that’ll reduce if treatment starts to improve things.