Waiting for full diagnosis

Hello lovely people. This is my 1st post. Would love to hear your thoughts even though I haven’t got much to go on. First of all I felt a lump in my breast the day of my last mammogram in 2018  (im 63). I mentioned it to the radiographer who said ‘well if it’s anything sinister we’ll find it. When I got the all clear letter I remembering doing a little jig around the kitchen. Then a couple of weeks ago discovered my nipple had inverted. Dr referred me to the breast clinic but they were unable to see me for 4 weeks. I was so distraught and furious with myself. I decided to use my life savings and booked to see consultant at private clinic. (Hated doing this but got new baby granddaughter that I need to meet)  when the money runs out I’ll be sent back to nhs  

got in the next day and had mammogram and ultrasound. Also biopsies. Ultrasound also found 2mm lump on other breast. So another biopsy on this. The surgeon seemed very straight and confirmed that it’s cancer and he said we’d caught it early (don’t know how as it’s massive). It hasn’t spread still contained.  and lymph nodes seem ok. He said it will be a mastectomy because of its size and I won’t need chemo or radiotherapy.  Then he slapped his hands together and said ‘job done’

ive just got an awful feeling when I go back next week for the results  it’s going to be totally different news.    I’m not sure anyone can give any thoughts on this but it has helped to write it down. Thanks for reading. Wish you all speedy recoveries x

  • Hello Valsy, welcome, you'll find lots of friendly support here. I haven't had experience of private treatment but hopefully others who have will be along soon, although I have to say that I'm not sure that a consultant slapping their hands together and saying 'job done' prior to having all of the relevant biopsy/test results would inspire me with confidence. You mention that your tumour is 'massive' - have you been provided with a copy of the biopsy report? This should include information relating to the size, type and grade of the tumour so will be helpful for you to know. Also, although it is stated that the lymph nodes 'look ok' it is only when a biopsy of the nodes is conducted that the consultant will know whether there is cancer there or not, and this may well change any treatment plan. Sorry to hear that they have also identified a lump in your other breast and hopefully you will receive good news next week.

    From my own personal experience of having a large tumour treated by the NHS, once they had the biopsy results a treatment plan was put in place and surgery took place very quickly (a lumpectomy). I'm also having chemo and radiotherapy to give me the best possible chance, and hopefully once you have your biopsy results from both breasts you will be in a better position to consider your future treatment plan. It may be worth discussing the situation with your GP too, particularly with regards to moving from private treatment to NHS. For example, if your money runs out mid-treatment/surgery how easy would it be for the NHS to recommence your treatment quickly as opposed to them taking over your treatment following tollowing private scan/biopsies? You've certianly got a lot to think about but best of luck with whatever you decide to do.   

  • Thank you so much for coming back so quickly. I’m still sat here ‘scrolling’ Rofl  I’m annoyed with myself for going down the private route but I just thought what’s the point of having a holiday fund if I can’t go on holiday. I get biopsy results next Monday so just got to sit on my hands till then. Surgeon knows I’m self funding and it’s not a bottomless pit. I’ve probably got enough for the surgery depending on outcome of 2nd breast. He said at any point he can refer me back to the nhs so I guess there must be protocol in place for this sort of thing. He just seemed so ‘flippant’. I’ve googled him and he has got a really good reputation. Wish me luck eh. I think I need it. Heart

  • I hope you kept your NHS referral appointment as you are probably only two weeks away.  I don't like sound of this private consultant.  2mm is not massive or is there a bigger lump in other breast.  Using the word massive is unprofessional.  Go NHS the treatment is fast enough and the care excellent for vast majority of ladies.  They can also compare to 2018 scan when you had lump.  That lump may have been identified as a cyst at the time.  

  • Hi Grogg. Thanks for coming back. Haha massive was my word not his. I think said over 5cms but after the c word I didn’t take it all in. No I cancelled the breast clinic appointment as I thought someone else could have it. Just feel like I’ve got myself into a mess x

  • Ask to be transferred back to nhs.  It will all be ok xx

  • I agree, don't spend your money on a private operation.

    Time wise I've had no issues with the NHS. Spotted lump on 7th June, breast clinic 16th June, results confirmed 30th June. Lumpectomy 2nd August. First chemo 1st October. And I live in an area of high waiting times.

  • Hi

    I agree with the other ladies - ask to be transferred to the NHS. We have private insurance through my husband's job and when i asked the oncologist whether she was going to transfer me to the NHS for chemo she said it was up to me as i had insurance, however if i was self-funding she said she would transfer me as there is no difference in care. 

    Also with your last paragraph and having awful feelings about what they are going to say next - i am exactly the same and don't want to speak with my oncologist for fear of what new bad news she is going to give me next. But i gave myself a talking to yesterday when it had all got on top of me - i took the dog out for a long walk and i concentrated on putting one foot in front of the other and every time a negative thought came in my head, i tried to bat it away and i told myself - these thoughts are imagined. This is news that i am imagining and not that i have been told. 

    Its easy for me to say this and the early days are truly awful. There are is so much unknown and there are so many scenarios that will play out in your head. Be kind to yourself. And if you can, try to take one day at a time.

    Good luck xx

  • Thanks for your kind words. I just feel a bit overwhelmed by it all. I don’t want to find myself in no mans land.  Seeng surgeon next Monday for biopsy results. I like you am thinking lots of bad thoughts as to what it might be. I like you find taking the dog for a walk. It’s a miniature sausage dog with teeny legs. Poor thing must be exhausted. So if you see a solitary woman walking one. Think of me. Hope all goes well for you xx

  • Hi Valsy I’d be a bit concerned the consultant seems to have ruled out chemo and radiotherapy afterwards.  Seems a bit unusual not to have either one or the other as a back up.  I’m having both even though lumpectomy removed all the tumour and not in lymph nodes so I would question this.  I’d definitely go with NHS now as they have a team of experts deciding on your future treatment and not just one expert.  I had surgery three weeks after diagnosis with NHS and felt very safe and well looked after x

  • Just been thinking it might be because your lump is oestrogen positive and so you’d be able to have oestrogen blockers but how he would know before biopsy results is a bit of a mystery.  Good luck whatever you decide to do x