Tripple negative metastatic still waiting to start threathment

Yes I was seen fast after an urgency appointment with breast service, first appointment got cancelled, second appointment was mammogram and ultrasound plus biopsies, week later I be told I had cance Mri and CT scan, week later results, the other side and axilla was also cancer, needed more biopsies, 2 weeks before that result was in, tripple negative metastatic or what ever it's called, appoin ent with oncology, curing plan... Uh realy? Start with Chemo they say around 7 days to start, funny enough I'm now on 21 days and stil waiting to get to see a nurse and a start date, I call, I email ut it feels like I be whimped off, they say I let a nurse call you but that nurse isn't calling, oncologist say yes it's agrassive so why not start threathment??  Makes you wonder what's the use if u be seen within 2 weeks but your treatment not start? So the bit chance you have to survive be taken away with each day you have to wait, all appointments we had they say, contact when you have que ions etc etc..I . DO. but there is nobody home

  • What we ideally need is a new nhs system, probably similar to the one they have in Germany whereby a  system like theirs needs to be in place.  Everyone contributes into a private system and monies are deducted from your  weekly income to cover the annual cost of sustaining it.  Instead people are  now choosing to pay personally from their savings if they have any to allow them to have prompt appointments to get diagnosed or whatever and we should all be entitled to  timely surgery if it's needed. The NHS hasn't really changed in it's methods for 75 years. There needs to an openness in the way they communicate with us all as none of us really know what goes on behind the scenes - they're like the secret service!  Lots of people. are taking out priate health insurance now anyway so why not change the way the system works completely.

  • Hi ,the last thing you need after your diagnosis is the stress of not knowing  when you are going to begin your treatment ,things seem to be getting a whole lot worse recently ,keep ringing and emailing that way they won't forget you and they may just think lets get this person seen so they stop contacting us , you are not pestering you are just worried ,I hope you get an appointment soon let us know how you get on .

  • I agree with you ,its going to pot and people don't want to risk their health by waiting to start treatment ,but because of the delays as you say many people are choosing to go private but many of the Doctors etc will be NHS so that's taking them away from the NHS appointments I would imagine ,its a knock on effect .

  • It's crazy isn't it, but going private for cancer threathment, who can afford that, only the rich and they won't use NHS, I just had another phonecall again to another receptionist and she say that my threathment was planned to start on the 2th, I haven't even seen a nurse not yet no wonder you have a headache, it's the stress alone already and not be taken serieus when you make a phonecall, I was OK in the beginning but now I get utterly sick from the stress and scary toughts 

  • So if your treatment was planned to start on the 2nd why didn't it start ,is it because of the Doctors strikes or something else ??

  • I had finally contact now, they had called me the 27th December, but my hubby did miss the call, he didn't know how to pick it up and I was in the bathroom, so they didn't even call back or try the house line, that receptioniste I dpoje today had contact the coordinator wish they told me few days ago she would contact me soon she was back at work the 2th, now she called and if I get my bloods taken fryday they start threathment theusday, I'm dreading it, but at least now I know, 

  • That's really good news ,you need to start treatment as soon as possible ,do you know what treatment you are having first ??

  • Thank you and yes I agree I lost 4 weeks with delay etc it's nerv wrecking, they go do first chemo teraphy 8 courses 4 diffrent meds seems one be given weekly and the others I don't know not yet how it be combined or counted, hope they tell me that Monday, first they say operation but when the second biopsie showed cancer to they came with this plan seems to work better he say, I could get immuun teraphy, but the way oncologist was talking I didn't had the idea he realy didnt supported it wondering if it was worth it for side effects, i don't know if I done the correct thing but I think they give us the best options, cross fingers 

  • Yes they will have discussed your case and between them come up with the best treatment plan for you ,I really hope it goes well for you ,I'm sure it will , let us know how you get on .

  • Greenie 

    good luck with your treatment just read the thread glad it’s all sorted now x