Waiting is so hard!

Make sure you get a 2ww (2 week wait) to the breast clinic. Soon as my (rather crap) GP saw the inverted nipple I had a referral in two days to a clinic (although not in my home NHS trust which sucked for travel for a little bit). She barely touched my breasts too in the 'exam'.

NHS diagnostics are gonna move slower than what you see on this forum - at the breast clinic appt you get : a) the hard core breast exam then sent to b) mammo and if the radiologist behind the curtain doesn't like the look of it then you go to c) biopsy. I started crying on the biopsy table because that was when I knew it was some serious shit. They will have a preliminary diagnosis for you before you leave (as in - 99% sure it cancer). Then two weeks later you meet with another doctor who tells you the biopsy results and next steps. If they want scans then you hit the scanners (CT, MRI, bone scan) and its more 10 days to two weeks of waiting at each step. If they don't want scans I think they get breast patients in pretty quick at any rate - I don't know cause I never passed the scans!

Good luck - be insistent and don't let the GP fob you off - point out everything you just laid out here. If they don't refer for whatever boneheaded decision I would highly recommend going private for an initial mammo and proper check - you can always drop back into the NHS system.

Dream, are you in the States, or U.K.?

Thanks❤️❤️

Blah33

The CT scan is probably to see if there are any other areas of concern, which would change the treatments going forward. The u/s is just for a small, specific area.

Dreamcatcherr - are you on the Breast Cancer Now forum too? It doesn't move nearly as fast as this one (or have as much information), but its UK-specific and they have the Call a Nurse service where you can speak to someone for support and information/guidance. Some other ladies on there had to go to the GP a few times to be taken seriously, but you have enough red flags that the GPs really need to get it in gear. They may know of some better ways/phrases to use and how to ask for something to calm the anxiety. I'm still trying to figure out how the NHS works and how to get what I need out of it and find it very frustrating at times how lackadaisical and passive it can be at the GP level.

My timeline below is a little out of whack - I saw GP on 3 September (two weeks to get an appt from mid-August, but I was on holiday over that time too), breast clinic on 5 September, biopsy results and confirmation 13 September, scans scans scans with final diagnosis on 27 September at which point I was passed from breast surgeon (in one trust) to medical oncology (the chemo people - in another trust) because they won't take the tumor out at Stage IV. First meeting was on 5 October, more scans, second meeting on 18 October. They had to shut down my ovaries for a month before I started Ibrance, hence why it looks like two months from diagnosis to starting a therapy.

I do have private insurance but the NHS actually moved along fairly quickly so that to stop and reroute through a private clinic would have meant redoing a lot of scans and would have probably moved along at the same pace. If I had needed surgery I would have gone private for that as I really hated the surgeon and hospital assigned. I'm not super keen either on my MO as he is more of a researcher, but at this point he will do and his professor is a top-ranked international name in the BC field.

The Christie in Mancs is as highly rated as the Royal Marsden, Royal Free, or Barts here in London and will have access to the same clinical trials, research, and up to date equipment. I ended up at Barts - they just do cancer and cardiac so its much more sedate and focused care than a larger hospital that provides things like A&E and maternity on top of cancer care. I think the Christie is similar, so if you can get in there that would be your best option. They likely have a Maggies on-site where you can get all sorts of support and programmes and the like.

There is a private provider on site (HCA) - you may want to ring them and see what a mammogram cost would be paid in cash.

The treatment they have me on is pretty standard first-line stuff and I'm feeling better than this time last year. The armpit lump is gone and my breast lump is greatly reduced. Just having trouble with a pelvis that has been munched on by cancer, but even that is getting better. Most days I feel pretty good (barring the walking situation!). I only go to the hospital twice a month - the day before to give blood and then the next day for oncologist, drug pick up, and for my bone and anti-hormone injections. My breast care nurse takes great pride in making sure her ladies (she only does Stage IV) have as little disruption to their lives as possible from this, so is always on the ball for scheduling and keeping things moving. My main onc is so Oxbridge he probably has a straw boater in his closet for the Boat Races, but hes not a bad sort, maybe a bit too robotic but I don't need original thinking on this right now, just need to get stable.

I keep a notebook with notes of questions I want to ask and what the response is so that I am prepared before every discussion. For example, I go in next Thursday for my monthly chat and I have about 7 questions I want to ask him about, ranked in order of preference/importance. I start thinking of questions maybe a week or ten days before and write them on a card so I don't forget. I am really bad at remembering conversations and also get flustered, so this was the best approach I could think of!