Hello folks. I’m in need of soothing words please. It’s 05.00 in the morning and I can’t sleep a wink. I’m 2 weeks into a 4.5 week (!!!) wait for my MRI results and slowly melting down. I know they have the results and that they went to the MDT last week (!), but no one wants to tell me them until 8th Jan. I am so angry I could scream. I’ve been holding it together until today but… my ultrasound biopsy results were put onto the portal and I read them today only to read they found a suspected third tumour in the same breast, and that it needs a biopsy. Another biopsy means another set of delays before my treatment can start. My 62 days are up on 21 Jan. Or do they do it during surgery? I am so furious that they can just dump partial results and leave me with no support and no information and so many questions for so long. I’ve emailed the nurses twice this week but they are ignoring me. They also said 10 days ago that the surgeon would ‘be in touch with your MRI results’, which turns out to be nonsense. I’ve heard nothing. I’ve been OK until today but now their apparent indifference is really getting to me. . That plus the fact my surgeon is a maternity locum with nothing online about her experience etc.
Oh, @lollipop1, how I remember those awful waiting days and wish I could give you a hug right now! It’s so difficult waiting for things and more stuff cropping up adds time to this and it feels never ending. I had further biopsies following MRI and then a load of to-ing and fro-ing about possible MRI biopsies, second opinions, MDT disagreements… It was excruciating and the worst part of the whole thing by a mile.
But, and it is a big but, with the benefit of hindsight I am glad all this happened. What all the waiting meant was that ultimately my team were able to make the right decisions for me. Without all the time to be sure something could have been missed or I could have ended up with more significant surgery than I did and the impacts of that. The waiting, hard as it was at the time, meant I had the right surgery with the best possible results. I know it’s difficult, but try to hold onto that your team are doing everything they can to make sure they do what is right for you. x
Hi @lollipop1 so sorry you are going through this. How awful to feel so unsupported
I was in a similar position. Waiting for MRI results and then after that I needed an extra biopsy which meant a further 3 week wait. I haven’t done the maths but my journey actually started in May when I found the lump.
I went to the breast clinic in June and they scanned the wrong area!!! Because my boobs were so fibrous and dense from my hormones they were concentrating on that area. Even though I asked the doctor to double check. I wish id insisted on a mammogram and not just the ultrasound. I wish id not have felt so relieved that they didnt think it was anything, that I left there and waited another 3 months before going back to the doctors.
I don’t know yet if things have spread to my lympnodes but I bet they hadnt done back in May! But what can I do about that now? Nothing. I cant change a thing. I can only trust that now I’m in the system, they are doing everything they need to. I can only look after myself now in the best way possible. Resting, eating well, moving and walking, throwing myself into all the things I love as much as possible.
Ive read a lot of stories here and from what I can see they dont leave anything serious in us for longer than necessary. If they believe these extra few weeks wont make a difference they are the experts right?
I wonder if you could speak to your GP about getting some medication for your anxiety? I know in my case I needed help calming my body. Once my body stopped freaking out my mind was much calmer.
Sending you lots of love and squeezy hugs. You are going through the worst part now, not knowing is literally the definition of anxiety. Stay strong. Once you get your plan it will be full steam ahead
Thank you both! My goodness isn’t it awful for everyone! A nurse phoned me this morning and apologised for not responding earlier. Turns out my surgeon has been off sick and no one told me. She’ll phone me next week to explain my MRI and plan. Also the clinic have complained to management about delays in follow-up biopsies. I now have appt for that on 20th Jan. another month! Thank you for your kind words! I’m feeling better now even though nothing has changed. At least they finally talked to me! I hope things are going well with you both and that you have a pleasant Christmas.
That’s really great news! Good on you for continuing to keep intouch with them even without a response. Don’t be suprised if they call you in earlier than expected. The surgeon wont want to keep you waiting longer than necessary now. My nurses were kind enough to call me in a week earlier than planned and I thought I would panic and think the worst. Infact I was giddy with anticipation.
I hope you continue to feel better as the days go by. You are on your way to the otherside of this now
Nothing wrong with a good rant. Because things take a while I have realised that breast cancer diagnosis has many factors and I’m amazed at what has to be taken into account to give exactly the best treatment. Every stage of testing took 2 weeks and in the end I just had to grin and bear it. Read a lot of books when I couldn’t sleep. Now I’m as hale and hearty as possible thanks to the care of the NHS in Scotland.
Thanks nell3. It’s good to hear you’re doing well! Maybe I’ll move to Scotland. It certainly can’t be worse than England. Good idea re reading; I’ve downloaded some ebooks. I take my hat off to anyone going through this with children and/or a job as well. So much mental stuff to juggle. Take care
I read your thread this morning- just checking with my own little crowd of boob babes to wish us all a merry Christmas (boy do we all deserve one!)
I think we all experience similar stuff with lack of information and it’s torture! But it is always compounded when the white coat boffins seem to be ignoring you. Nothing more likely to make you explode! This journey gives us so little control that any hint of feeling like you aren’t being taken seriously is just adding to the trauma- especially prior to a proper diagnosis.
What I can say is that once you get that information, regardless of what type of critter you have, just knowing makes it’s easier to process. By the time you get to see your surgeon, they will already have a plan in place and then it all happens pretty quickly.
Strap in, it’s a hell of a roller coaster ride.
But, majority of us, it’s surgery, another wait for pathology while you heal, and then you follow on to your other treatments that about preventing it coming back (radiotherapy/meds) and the long term prognosis for the vast majority of us is extremely good (around 90+%)
So, with that in mind ladies, I wish you all a peaceful Christmas and healthy new year.
Another joining the chorus to say yes the waiting is utterly pants and can be terrifying at 4am when no-one else is awake, you’re at your lowest physical ebb anyway and you start spiralling into full blown panic mode. I’m taking comfort from the support on here and everyone telling me that this waiting for results is the worst part, but that knowing precisely what you are dealing with makes it easier for them to give you the right personalised treatment for you, rather than trying things one after the other until they find the right one.
I’m doing a lot of jigsaws on my phone, reading a lot (mainly children’s books and crime fiction because there’s fewer deaths from cancer in those!) and trying to focus only on the things I can control so trying to eat healthily, continue to lose weight and to exercise. The fitter I am, the easier everything else should be.
Oh and I’m in Scotland and I don’t think the waiting times are any better although the communication and care for me as an individual have both been superb.-i was told last week that I need an MRI before they can finalise my treatment plan and that’s not until 18 January (and may result in more biopsies and further wait for results) so surgery is unlikely to be before march.
However they have started me on hormone blockers now because mine is strongly ER/pr+ and they said it should stop it growing/spreading while I’m waiting. I also love the fact that I can phone my BCN whenever I want to ask anything, however insignificant. Whenever I’m really in a panic I either post here or phone my nurse and it really helps. Hugs
Thank you so much! It’s good to know I’m not the only one waiting so long. I too like jigsaws in my phone. I’ve done hundreds! I also play card games and read the news. I will ask about hormone blockers. Good idea. Thank you!! All the very best wishes to you!
Spiralling seems to be the norm at the beginning of this process and yes so many questions with what feels like an eternity to getting the answers. What helped me through was taking control of what I could. I spent time reading and learning about what I could do to help get rid of cancer myself. If you’re up for a bit of study and a new way of life these books will help you along:
Radical Remission - Kelly Turner
Breaking the Cancer Code - Rubio and Gross
The Cancer Kitchen Cookbook and advice on what to do for different symptoms when going through treatment
Chris Beat Cancer. Chris Wark. Also on Facebook and does free training and has a cookbook too.
Remember the mission to get rid of cancer. Take control of what you can, be positive and kicks cancers arse
I have a little tree and some sparkly bits and bobs. Emily in Paris cheered me up. A bit of cheery escapist nonsense! I hope you enjoyed things as well!
Thank you so much, your reply is very helpful! Calm and wise. I will certainly have a look at the books etc you suggest. You’re right, it’s the lack of control that is so infuriating. In any other walk of life we’d fix the mess! Instead we have to wait for the mess to fix us. Sigh. So yes, I will focus on what I can control! Your suggestions sound interesting and I like reading and delving into things so I’ll definitely have a look. Thank you very much!
I’m so sorry you’ve had this experience and I think all agree waiting for and not knowing results is the worst! My own experience wasn’t too bad on the initial diagnosis back in Oct 2023 but subsequent annual mammogram results can take longer. However, my strong advice to you is to keep asking and if you’re not sure of what is being said or proposed, ask questions! I did loads of research as I had a very rare form of Triple Negative Breast Cancer called Apocrine which is thankfully less aggressive than its ‘big sister’. Even my consultant oncologist hadn’t had a patient with it in her 20 years experience. The treatment proposed would have been the same as for TNBC - aggressive chemo (ideally pre and) post surgery, radiotherapy and bisphosphonate treatment after chemo. This was based on not knowing what to do with this apocrine variant. I asked for a second opinion and paid privately for an online consultation with a lovely breast oncologist at the Royal Marsden hospital -in the week after Christmas! She said unequivocally I should not have chemo or bisphosphonate treatments as the tumour was small (7-10mm) plus some precancerous cells and it hadn’t spread (post surgery biopsy) but should have radiotherapy. This was the best Christmas present as I was facing 4-5 months of aggressive chemo just prior to my daughter’s wedding in June 2024. So my advice is that the ‘experts’ are only human and if you have worries or doubts, it is your body and you have the right to ask lots of questions and to get second opinions if you choose. My original oncologist was very supportive of getting a second opinion and was very pleased with the outcome - as am I.
Good luck and keep on keeping on! Sending you hugs, patience and strength.
Thank you peonyviolet4. Your own diagnosis and treatment sounds complicated and stressful. It’s good to hear that you managed to sort it all out in the end. I hope you’re doing well now! I have sent enquiry messages to three private hospitals over the Christmas break, including the Royal Marsden, and waiting (more waiting!) to hear back from them. I want to see if I can get my second biopsies sped up. Currently my 62 NHS guidelines days are being filled with the wait between original and second biopsies, which I struggle with. Plus I don’t have my MRI results after 3 weeks of waiting. The strike and holidays and my surgeon being off sick have really messed things up. Your advice to keep asking is good; they are going to be fed up with me this week! Sending hugs to you…
I can recommend the consultant I had at the Royal Marsden if you would like me to email you her details and of her Secretary who was most helpful. The online appointment was arranged in a week! Message me your email if you would like details. Xxy
Hi peonyviolet4. Thank you for offering to share. The Royal Marsden private service phoned me this morning and said they cannot do just my second set of biopsies. I’d need to go through the one stop investigation and diagnosis route, most of which I’ve already done on the NHS.
I’ve come to the conclusion that the private sector is not always the saviour we want it to be.
The specialist I saw was Dr Okines and her secretary is called Caroline Brash should you decide to revert to this route. I can highly recommend her. Secretary details below.
