New and scared....a month to wait for op

Hi Everyone,

I went for a routine mammogram then got called back for ultrasound and core biopsy. Have got invasive cancer and calcifications in left breast. It is HER2 positive.

Had first appt with consultant who was very busy and rushed -didn't get to ask much, he wouldn't tell me stage or grade as " he doesn't believe in them!"

Now because of Easter hols I can't have MRI till 24 th April - surgery early May but no date yet.

Will this delay affect the outcome? My emotions are all over the place- one minute I feel ok and normal, then weak, sick and shaky. Will need chemo and rads.

Would love to hear from anyone

Many thanks

18 Replies

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  • I'm sorry to read of your diagnosis, I'm sure that if the medical team looking after you felt you needed the MRI sooner they would have got that arranged, and I'm sure it's the same with the wait for surgery, as for the consultant not having much time for you, why don't you write all your questions down and ring your BCN, or ask her if there's someone at oncology who can answer your questions, i know its easier said than done but while you're waiting for your appts try and keep busy, see family/friends, have a trip out anything to try and take your mind off the C word xxxx

  • Thank you so much for replying, you sound very calm and caring..logically I know a couple of weeks won't make any difference, but waiting is so hard. People at work are amazed that I'm still turning up, but I don't know what else to do! I don't feel ill, just a bit exhausted emotionally, and if I stay at home I'll only end up constantly googling anything C related, which is scary. Best wishes.

  • Sorry to hear your diagnosis, I totally agree with Jenny Mary,write down your questions, and ring the breast care team. I was diagnosed after a routine mammogram in July 15. I was in Cyprus on holiday until the end of that August.(because it was school holidays,my husband was only here 2 weeks) he opened the letter and phoned me,I rang the breast care team,and was told enjoy your holiday,I could have a long journey ahead,but the delay would make no difference to the out come, as if necessary,the could do the ultrasound and biopsy and redo the mammogram at the one appointment (which they did) and yes it was cancer,had the operation on 9th October 15,so time scale is very similar,as for your emotions, I think we all do this.

    It is hard,for you and your family,try and take 1 day at a time,enjoy the better weather,treat yourself, you deserve it, and I know not everybody is the same,but Victoria Derbyshire was diagnosed a few months before me,and she did a blog,which I watched, and found it very helpful,as I was imagining all sorts, and she made the whole process less scary,it was doable.She explained what the process was,about drains, time scale she dealt with tiredness,emotions( I found it helped)She has since put another blog about her hair growing back and removing her wig,(which did look like a wig,but she is on the Tv,so couldn't really appear bald or thinning) her new hair looks lovely,

    Just a thought,if you can find time,prepare meals, and put them in the freezer,so when youve had the operation, you can just put it in the oven or microwave, because after the operation, you will feel tired,and it take effort to even stand and prepare a salad.

    Good luck,and I hope all goes well.xxx take care of yourself,we all know it's scary.xx

  • You poor thing, I have personally found the waiting the most stressful, that and telling people. Macmillans have been very good, I had to wait for a nurse advisor to phone me back the next day but her advice was sound and not rushed. Write your questions down, I have started a book with questions, answers, phone numbers etc as my brain has stopped working!! Talk to the breast care nurse if you can, you could ask for an appointment with her, although my consultant has been incredibly kind I realise now it was the breast care nurse that I got a lot of the answers from. NICE guidelines help as well, just google NICE guidelines for breast cancer. I have found this site here incredibly supportive and positive so keep posting, wishing you well x

  • I agree with everything that everyone else has said. I'm sure you are doing the right thing carrying on working. If you are feeling ok, why not? I always find the waiting is the worst thing and try and keep myself occupied. I have very supportive friends and family who have kept me going throughout. Good look with your journey and you will get through this xx

  • I absolutely feel your pain. I was diagnosed in June 2015, Er+, her2, early stages. I ended up having 4ops, 12 weeks of chemo and herceptin and now tamoxifen. Right now I've never felt better but out of the whole process, the absolute worst bit is where you are now. What I'm trying to say is, it gets better. Once you have a treatment plan and get started, you feel things are under control, but at the beginning all you feel is absolute panic. Don't google! It's the best advice I was given, it just feeds your panic and fear. Use this site and phone Macmillan for advice, I found them very helpful. Surround yourself with positive people and keep busy. Your mind is your worst enemy at this point. Take a deep breath and be kind to yourself. Sending hugs too. X

  • Hi sorry to hear your news, and welcome to the group of similar people to yourself!

    The waiting is the worst, I had about a month to wait for op, the girl next to me was having mastectomy like me, she was Her 2 + and knew she would be having chemo and radiotherapy, she had an implant like me at the same time as mastectomy, she is a swimming instructor and carried on working throughout all treatment, having just the odd time off after chemo, she felt it helped, think it depends on your job etc, mine was physical so I didn't go back until about 4 months later.

    Take each step at a time, and ask questions of your doctor or nurse, not google! Everyone's cancer is different, have you decided on what treatment you will have regarding surgery and reconstruction or not? Are you just Her2 as you can be ER+ as well as the girl as both! I was ER+

    Ask any questions on here as well, as there are so many ladies on here that have gone through the same as you xxx

  • I know how you feel i was the same when i found out mine was 2 days before christmas just gone there ,i was given my news that i had breast cancer they only found it as i was at the hospital for my lung ,it was just after christmas when tests were done then new yr it was 11thjan this yr before i got all my results back i was told i had stage4 breast cancer and triple neg as well ,at the start it is panic but once you have your plan you know whats going to happen ,at the start i had so much stuff to take in with the news but soon coped and with the help of a support group you will to ,ive got lots of family and friends who are helping me get through this just now

  • Hi there, it is the worst time the waiting. I threw myself into work to make sure everything was up to date before I was off for my op. I also found telling people hard too, I had in my head that I didn't want to tell anyone as then it would be real, and also didn't want anyone to feel sorry for me.

    As I've said before in previous posts, the best thing I did do was join this site. There is always someone here who listens to you, offers advice and keeps you positive. We are all on a different journey but in the same boat.

    Sending hugs

    Louise xx

  • Hi Phaedra

    First of all don't worry, I was in the same boat six years ago and am still here.

    Staging - 90% of oncologists do not believe in staging. I asked my Oncologist and he said he has never staged any of his patients, so try and forget that.

    Oncologists - always too busy as so many people to see, not an excuse though. Have you got a Breast Cancer Nurse Specialist? If not get one allocated to you as they will spend as much time with you to answer those questions and if they can't they will get answers for you.

    MRI / Surgery - the delay will not do you any harm, mine was delayed and it gave me time to go out and do things with friends and family that I couldn't do after my mastectomy. If your Team thought surgery etc was urgent you would have been operated on by now.

    This is all very scary but take time out for yourself, go get your nails done, have lunch and treat yourself. Chemotherapy is doable, not as easy as I thought but not bad and radiotherapy was easy.

    Wishing you well and keep us all updated on your journey, yes it's a journey.

    Love n Hugs

    Elaine xxxx

  • My prayers are with you. Sorry you could not have a reasonable chat with your consultant. That was when you really needed his advice and support. However, I am sure you will be fine despite the delay.

  • Hi please don't worry I waited 6weeks to have my lumpectomy by the time I had tattoos for my radiotherapy before surgerythen it is awful the wait because I just wanted it out as you do but try not worry

  • Hi there I was similar but said I would be happy to take any cancellations - and ended up having a days notice the week after diagnosis ( very quick pre-op!) which was great but in hindsight it didn't give me time to properly take things in, in my head I had a time line for when every next part would start/finish and realise now that this was just putting pressure on myself - I went back to work after diagnosis , left for my op but ended up having two more, back to work before chemo , went back after chemo and am now off again as having a mastectomy tomorrow - do whatever you feel is right but don't do things to please everyone else (such as feeling guilty about work!) the time will pass , slowly , but it will xx

    Good luck on your journey x

  • Thank you so much to everyone for replying- it's nice to know there are people out there who understand and have had the same fears. It's definitely the journey no- one wants to go on! I have cancelled my summer holiday abroad as I've been told it's not advisable to fly or be in extreme heat- not to mention the risk of infection, boo hoo, we were really looking forward to it. At least my hair is short and fine, so not so much to lose as some ladies. All the best on your journeys, and thanks again.

  • Hi Paedra and welcome to the group nobody wanted to join! There are lots of lovely ladies who have lots of experiences to share, all very helpful.

    My 1st mammogram 3 October led to ultrasound biopsy and fine needle aspiration of lymph 18 October - 15 days later. Results 7 days later = breast cancer = 22 days after mammogram. Invasive and multi focal - 2 tumours, poss lymph involvement, grade 2, stage 2, er+, her2-.

    MRI 3rd November - 9 days later / results 8 Nov - 5 days later. This was the 2nd breast surgeon I saw who declined to have a 2nd consultation after I just found out I couldn't have immediate reconstruction! He referred me back to the previous / 'my' breast surgeon to have that conversation with (and it was almost lunch time after all....😳) who I subsequently found to be on holiday for the next 2 weeks!

    So final diagnosis 18 Nov - 10 days later, now 46 days since my mammogram with yet another breast surgeon.

    I told her I felt dictated to and didn't like that. Bless her they don't have the time to spend! I pushed for a surgery date, she gave me 7 December. Total wait 6 weeks from diagnosis.

    Between final diagnosis and surgery I was beside myself trying to understand my situation. Eventually I had a telephone conversation with my breast care nurse 6 days before my surgery who couldn't help me completely and offered me a telephone call from 'my' breast surgeon who called me the next day. At last! 20 minute phone call Friday evening - 7 was after diagnosis - and my questions were answered (still had to do some more research! But satisfied enough to go ahead with full mastectomy and delay the reconstruction.

    I wrote it all down and even now when I re-read all my notes a little bit more falls into place as I have progressed thro this 'journey' and gradually understood more and more.

    I did make enquiries in that time about a private operation believing / hoping it would speed the whole process up but Macmillan and my gp seemed to think it wouldn't have speeded it up as all the same tests would have been required. It would only have been quicker going private if it had been in their hands from the beginning. And yes you will find some ladies on here who had much quicker surgery (post code lottery? Not cynical, just realistic).

    I am on treatment 5 out of 6 chemo, I am down for radiotherapy in June.

    Hoping there is something of value here for you Phaedra.

    Keep asking your questions. They will be answered.

    All the best xx

  • Thank you so much for replying. You've had a long frustrating wait, sounds like a nightmare, glad you are getting through it all, hope it's not as bad as you thought, the chemo that is- dreading that more than the surgery. I'm away on holiday this week, trying to act normal but think about it dozens of times a day- it still feels a bit unreal and nightmarish- I thought I was healthy! Hope you soon get the all clear x

  • As will you ultimately! Yes Phaedra I really do see light at the end of the tunnel now, with so much treatment under my belt. It certainly didn't feel like I would ever get to this point let alone finish with it all so it will happen to you too in time.

    You will manage the chemo. Keep asking questions! Enjoy your holiday.

    Wishing you some peace 🙏😌x

  • Dear Phaedra

    I can only agree with all the other comments from the other ladies - if you needed to be rushed in you would be

    I was diagnosed after a routine mammogram - within a week I had my diagnosis - but I had holidays planned - I asked if 3 weeks would make a difference of life or death as I needed my time out in the sunshine to charge up my batteries and get everything prepared at home before the surgery.

    and that's what I did - holiday (great) supermarket shopping for a couple of weeks (not that I don't have enough in the house anyway), laundry, cleaning, gardening - pre-op then surgery

    All I needed to do when I came out was recover

    Write down all your questions and call the oncology nurse in the hospital

    Here in the Netherlands they always have someone on duty 24 hours if you need to ask any thing

    It will be an understandable emotional rollercoaster but I hope you have someone there to support you in whichever way you need

    Good luck - there is light at the end of the tunnel :-)

    xx

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