Two weeks in - and so confused!

I got the initial diagnosis on 13 September of IDC, 5cm in my right breast.  I had a breast reduction 20 years ago and have never been really able to feel anything since then - I only noticed something was up when the nipple retracted. My GP, who I have to say I am not overly fond, chucked me into the system so fast my head spun - two days from GP to Clinic and then another week to the follow up where it was confirmed. No history/health risks other than some seriously dense breast tissue - I’m (barely) 42, no mammogram would have picked this up, and even feeling around what was left of my breasts I never felt anything. I brushed it off for a few months thinking it was maybe fat necrosis (had quite a few heavy falls on that breast) or that the plastic surgeons in '99 indicated I would probably need a touch up lift by now.


Since then its been non-stop hospital appointments - CT, bloodwork, MRI, bone scan, another mammo on the left (unaffected) breast - leading up to the big reveal this Friday of final treatment plan. Which is fine, all for thoroughness, but I have zero idea who any of my ‘team’ are, no one ever seems to introduce themselves with a name or their role, they were three hours late for that consultation to tell me I had it (I was so angry at that point I almost walked out) that lasted maybe ten minutes because I was so tired I just wanted to get out of there, I met the breast care nurse who has been great about getting those appointments set up but I haven’t had to call yet with questions. I’m assigned to Homerton University Hospital and frankly I am a little disturbed by the conveyor belt feeling. No one ever seems to have time to talk, I dont know who anyone is, the hospital itself is like a massive, slightly run down bus station, and it gives me doubts about my treatment being specific and done for me, not just to hit some targets. There is all this rushing around and I worry about errors being made.


Something else to add - I’m an American expat, so I didn’t grow up with this system, have no friends or family here to explain it, and while I greatly appreciate what the diagnostics must have cost to date, I also have private insurance and am considering using it, probably in an NHS facility with private component like the Royal Marsden. I get that consultants work between the two, which is fine, but will it get me a better pace of care where I won’t feel so rushed? Where I can maybe get to know my surgeons before I trust them with my life? Where I can maybe have some greater privacy?


If I do decide to go private it sounds like the scans don’t have to be redone but there could be a slight delay while a new team is assigned and treatment path determined. I’m ok with that, I just want to also feel comfortable with my treatment and team, and I just am not feeling that right now. I guess my question is - should I be questioning my current path to date or is this standard? Have others chose private and for what reasons?

Hi Sondra, sorry you find yourself on here, but glad you’ve jumped on to ask questions. Sorry you feel like you are on conveyor belt and you are not having things explained clearly by your team. Please use the ask the nurse facility on here, they can help answer things for you. The nhs is very good, but I think teams can vary from region to region, you should have had a bc nurse given to you at time of diagnosis and they should be able to answer questions and support you. I know people who have got medical insurance and did use it to go private. You need to do what’s right for you, this is your journey and in all of it, you put you first and do what you want. You are in control, it’s just to start with you feel like you have been chucked out of the plane with no parachute. Once the treatment plan is in place you will have better idea of how you want to proceed with everything. There are chemo starters threats, surgery thread, rads threads and so much more on here and lots of ?:heart:?where everyone shares tips and ?and ? and ? hope this helps ??:sparkles::sparkles:Shi xx

Hi, sorry you feel so alone…what treatment are you going to have? I had DCIS 14 years ago, and opted for mastectomy. I did go private, as I had insurance, and in those days the NHS didn’t respond as quickly as they do now, and I didn’t want to hang around. Having recently been referred back again, (different type of BC this time, just to be difficult…) the system is much slicker, but I can see that this feel rushed if it is all a new experience.

How are you feeling about it all now?


Hi SondraF, sorry you find yourself here.  It’s a very confusing time to begin with and you are being looked after by a team when you feel that you need someone to guide you through and keep you posted on what’s happening.  A breast cancer nurse should have been allocated to you personally.  Whatever you decide, make sure you research thoroughly as you’re already in the NHS system and could risk further delays if you have to start again with the private system.  If you need help with your progress in the NHS system you can contact the PALS dept in the hospital or the McMillan information centre.  Your treatment plan will have been tailored to your particular cancer type and stage.  I hope things go a bit smoother for you soon.

I have had a similiar situation to you. 41 nothing until a month ago and newly diagnosed with secondary breast cancer. I get what you mean - I always feel rushed at my appointments. Letters dont turn up so I have to chase.  Appointments run late but mine is over in next to no time and you leave feeling no more informed than when you got there. I’m hoping things get better but cant see it. If I had private insurance I’d definitely look into it.  Good luck