I feel really ungrateful at the moment after yet another breakdown and loss of control this morning …
I had my first biopsy the last week of November and was told then that they were more or less certain it was cancer. Results on 10th December to confirm diagnosis but I needed another biopsy as they wanted to check another area . I had that biopsy on the 13th December. I was that distressed that they suggested I speak to someone . A call from a support worker a couple of days later.
She said - you are waiting for another biopsy
I said - I had it yesterday
She said - you will have met Mr M ( surgeon )
I said - I have not I am meeting him next week
She then suggested counselling….
I was angry, it was either she had not read my notes or they were not updated , either way it did not give me confidence.
Results of second biopsy when I met the surgeon on the 21st December . Biopsy was clear but they had biopsied the wrong area so yet another biopsy booked . I came away with a post it note with 8th January at 2pm scribbled on it . Told that a letter confirming would follow . Phone call from said support worker this morning saying it was now too late to send out a letter and just confirming date and time .
I know that they meet on Wednesdays to discuss cases and my results of the 3rd biopsy will not be back by this coming Wednesday so it will be mid January before they discuss my case and hopefully give me a date for surgery probably early February .
I will be 9 or 10 weeks in limbo by then . I am told this is an early cancer and can be cured but there are days where I feel that I just cannot cope anymore .
I am trying so hard to trust the professionals but my mental health is poor .
Apologies for the long rant and feeling so ungrateful. I suppose what I am looking for is someone to say they have waited this long and it’s ok
Bless you, try to keep the faith, they are just trying to get the full picture before they can decide the best way forward for you. I know the waiting is so hard as we all do.
My journey started at the beginning of September and I’m still waiting for a treatment plan and results from onco test, so I know to some degree how hard it is.
I’m sure lots of ladies on here will respond to you today, just try and ride the rollercoaster none of us want to be on.
I’m so sorry you’re going through this and still don’t have a clear picture of your situation or treatment plan. There are periods of waiting every step of the way, and it really is the hardest part. I hope it might make you feel better to know that I was diagnosed mid March last year with grade 2, multi focal invasive lobular cancer (ER+) and for various reasons I didn’t have my mastectomy until late August. So 5 months (with no concern from anyone). You’ll be pleased to know, I had clear margins
I’m now waiting for results of my DEXA scan and plan for my Zometa infusions - so more waiting! This BC world sure ain’t easy, but we all understand and it does get easier I promise you. Sending hugs xx
Maybe I should also mention that my tumours were 24mm, 15mm and 10mm.
I’m 50 and post menopausal, so was put on letrozole a couple of months after diagnosis and my results after surgery showed my biggest tumour to have shrunk to 21mm. Perhaps you could ask to be prescribed hormone therapy while you wait - it might put your mind at ease that your tumour has less chance of growing?
(Not that a month or two should make a difference, but for peace of mind) xx
I am so sorry you are going through this. Please don’t apologise for anything. It is completely understandable that you feel angry and frustrated. Many people on the forum will share your feelings about waiting, it can be so difficult.
I hope you can find the support you’re looking for here on the forum. Please know that our nurses are here for a chat too.
Thank you for taking the time to reply. It means a lot . The rational side of me knows that they are trying to get a full picture to enable the correct treatment but my emotions are all over the place ….
Hi , yes, in a strange way it helps to know that others find the waiting difficult . It looks as if it will be over 60 days from my first biopsy before I get any treatment . Every one of those days has been or will be difficult emotionally at some point . Thank you so much for replying, it means a lot to me that I can reach out at difficult moments ….
You’re not ungrateful or being unreasonable, I was in exactly the same situation as you last November, I had my official diagnosis on the 25th October 2022 and didn’t start treatment until the 16th January because they were messing around and giving unclear messages. In fact by the time my treatment started my lump had grown and it wasn’t until my partner kicked off they got a move on. I didn’t kick off because we don’t do we when we are feeling grateful someone is doing something.
I too, had several biopsies, one that went very wrong and I bled out and my boob was back and blue for months. Two of my biopsies were by contrast enhanced procedure meaning it’s like a tiny op and if someone doesn’t know what they are doing it can go wrong and my first one did go wrong.
All this caused my treatment to be delayed, so if you’re worried don’t do what I did and be patient, say something. I wish I had said something a lot sooner.
I had chemo before surgery, so when
I met with my oncologist treatment started very quickly. The breast clinic however, was extremely slow and the wait times were always 3 weeks in between appointments which is far too long!
I can say now, whilst I am still going through immunotherapy at the moment until April, chemo worked and cancer is gone completely, I had surgery and radiotherapy as well.
Trust me when my partner drew an imaginary clock on the consultants desk table and told them it’s ticking, they took him seriously and got a move on.
Waiting is so hard. My original mammogram was mid July and I start chemo a week today, 6 MONTHS later. It feels like a LONG time but I’ve had 2 surgeries. They completely missed my cancer in my biopsy and found it within my DCIS so my original plan has changed from 5 days of radiotherapy to 3 years of treatment. I’m worried valuable time has been missed but they reassured me that the treatment plan would have been the same. I guess everything is screening until they put it under a microscope. It is so hard… and I constantly have questions. Online research v oncologists varies greatly too. This is a mental battle more than anything. No easy answers but just to say, we all understand. xxx
Thank you Sarah for sharing , the wait is horrendous . I also have the worry that plans will change after surgery so the sooner my surgery is the better because only then will I know what I am facing
My god you have had a difficult time, I wish I could be more helpful but the waiting time is unacceptable and completely taken out of our hands we just have to go with it.
I would like to wish you lots of luck and happiness going forward and let’s hope that they get you sorted very soon. Take one day at a time and all the support offered.
You must be going to the same cancer center I went to. The fear and frustration does not get any better. I am at the point where I refused chemo and radiation twice from the same cancer center (insurance dictating where I go) because they can’t get their crap together enough for me to have ANY faith in them. With what the anastrazole has done to me mentally and physically I am looking at stopping that, also. Some people do OK on it. My oncologist ordered a dexa scan for osteoporosis back in October. Anastrazole causes osteoporosis. Since I did not want her treatment she did not bother following up with me to tell me I already have osteo and look at alternatives. I am a nurse and I am about done with Western medicine. I am sorry for your frustrations but please make sure you ADVOCATE for yourself and fully document everything
Hi, I totally feel your pain! I was complaining to one of the doctors that they weren’t telling me everything and she offered me counselling! I never did get the counselling either. Point was I wouldn’t need it, if they just kept me informed. I’m sorry, you’ve had to deal with all this. I was originally diagnosed in September, had various scans and eventually had surgery in March. Hope that helps x
I am so sorry that you find yourself here. I think I would be really cross in your situation . I know it’s down to all the pressures on the system but I feel that all patients deserve better than this. Having said that I am certain that all the consultants, doctors and nurses will be thorough and endure everything is managed appropriately. I think you are very much with in your rights to complain and I know there used to be a service called Pals which was a vehicle for this.
Strangely that does help . The fact that others have a long wait should fill me with shock but all I can think is thank god I am not the only one . I don’t like the person I am turning into……
Yes , I think it is pressure on the system but the wait is horrific …. The breast care nurses/ radiologists etc have been lovely . I suppose there is only so much they can do . I had my final biopsy yesterday , I now wait a week for results and another meeting with the consultant. Hopefully then I will have a date for surgery
Thank you . I have started to get more vocal . I am not sure what will be offered after I finally get surgery but I worry about hormone treatment more than chemo or radiotherapy. The thought of 5 years with possible side effects fills me with dread. I suppose I won’t know if I will get any side effects until I start . I hear that many women stop taking the tablets …… I already know that I have poor bone health after a really bad broken wrist a number of years back.I had a dexa scan then where I was borderline as needing treatment, It is probably much worse now
but just to say, we all understand. xxx
