So glad I’ve found this forum, I need to understand what’s going on. My Mum told me last week she’s been diagnosed with BC in both breasts, she’s 58. It started 5 weeks ago with her finding a lump and going to her GP, who found another. She then had biopsies and it was confirmed as cancer 2-3 weeks ago. Weds last week she had an MRI full body scan to see if it has spread at all, but we’re still waiting for the results. She has been booked in for a lumpectomy in early September. They don’t know if she’ll need radio or chemo - there is SO MUCH they don’t know
What the hell is going on? 5 weeks since she found it, it’s already in both breasts and the op isn’t for another fortnight? 7 weeks from finding it til the op? Surely SURELY this cannot be right? Also we’re still awaiting the scan results 9 days on. Where is the urgency here? It could have spread so much in 7 weeks, it’s ridiculous. How can they still not know what type of cancer and whether it’s spread etc 5 weeks after seeing her GP?
I’m a very proactive person and it’s killing me that my parents won’t let me phone the hospital and chase them up, ask some questions. Don’t they understand this period of time could be the difference between her living and dying? I’m so scared it’ll have spread and I’ll always be wondering if all this time made the difference.
Hi Ruby
so sorry to hear about your mum.
I’m not sure of timescales but I do know that they do have a certain time in which they have to have carried out surgery from date of diagnosis. I’m sure someone will be along soon who can answer your questions.
When I was dx surgeon would not tell me grade and stage of cancer because it can all change after surgery… but I was adament that I wanted to know. Your mum should have been given the number of a breast cancer nurse that she can phone at any time. They are very helpful.
The waiting is always the worst bit. It is a scary time but do try and take one step at a time.
If your mum won’t let you ring hospital give the helpline a phone on this forum, the nurses on here are just as helpful.
Sending you love
Chris x
I can understand your frustration and fear but do be assured the medics do know what they are doing. I was diagnosed in the October but didn’t (because of complications from another illness) have surgery until the January. You could ask if your mother has been prescribed any hormone treatment which might help during the delay. You could also ask if you could speak to her BCN. Your mother may not want you to rock the boat by talking to doctors but I don’t think she would object so much to you talking to her BCN.
In addition to the valuable support you have here from your fellow users please do call our helpline as Chris has kindly mentioned. The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2, the helpline nurses are here to offer you further support and a ‘listening ear’ which may help at this difficult and frustrating time for you.
Hi Ruby,
We can all understand your frustration, the waiting and the unknown is the worst part to deal with – whether patient or family…
I hope my time frames help in understanding (and I am private patient)
12th January – GP with suspect lump/itch
25th January – breast clinic; mammogram, ultrasound, core biopsy
1st Feb – diagnosis of BC
3rd Feb – bone scan, MRI
4th Feb – consultation with plastic surgeon/plastic surgeon
18th Feb – final consultation with plastic surgeon
19th Feb – pre op assessment
20th Feb – surgery
12th March – consultation with Oncologist – THIS was when I found out about chemo, rads etc
9th April – started chemo… have penultimate chemo tomorrow.
The ladies I have met on here have very similar timeframes, whether NHS or Private… your mums situation is not unusual, just very frustrating - and scary.
As soon as she has her surgery (and they can properly assess the tumor), you will get the histology report (approx another 2 weeks)… then the treatment plan will be defined.
It sounds like a feasible timescale. The docs and muliti disciplinary team which is requred to deal with cancer diagnoses are incredibly busy-and much though they would no doubt love to get things done quicker, they do their best under heavy workloads. Cancer takes a long time to grow, so a few weeeks delay (if indeed this can even be classed as a delay), will not impact negatively upon her prospects. Please try to stay calm-for your Mum’s sake, as much as anything. There are questions that simply can’t be answered until after surgery has been done, so you really will just have to try and stay calm in the meantime-and trust that the docs are doing their best for her.Once treatment has started you will all start to move forward, and feel so much more in control.
Thank you everyone for your thoughtful and helpful comments. I’m delighted to report that my Mum phoned the hospital this afternoon and was told the scan was clear - it hasn’t spread. She asked why they hadn’t contacted her and they said they would have told her on the day of the op - in 14 days time! How cruel and unnecessary is that? Anyway it’s the best news and means we know it’s ‘just’ BC.
Marguerite, thank you so much for all the effort with your post, it has reassured me a lot. I’m surprised that it took from 20th Feb til 12th March to find out about chemo etc, so that has prepared me for that too - I assumed they would know straight after the op! I also didn’t know chemo could go on so long. Thanks again and hope tomorrow goes well.
ElaineD - I didn’t realise it takes a long time to grow, thought you could get more aggressive forms, but that’s just an assumption I guess so thanks for the clarification.
AlexG, Chris and Lucy thank you so much. Thank you all for being there for me this afternoon, it’s so good to have this forum here and I intend to stick around for the foreseeable future to give and receive this great support.
Glad that the replies have eased you a little - the unknown is awful.
Best wishes to your mum, she will get great advice from this site. Family support has been paramount for me, so your mum is off to a good start with your support.
This whole process is frightening, but absolutely doable.
Best wishes to your mum
Marguerite
Ruby-you are quite correct-there are indeed aggressive forms of cancer. But until all the groundwork is done, it still remains true that a few weeks “delay” really won’t impact too hugely. If you think how long it takes for a tumour to go from being undetectable, to detectable (as much as 10 years in some cases, I believe), then you will appreciate that having everything done, say within a month, isn’t too releveant. Much better that all the necessary steps are taken at this time, to ensure that your Mum’s progress from hereon in goes as smoothly as possible. Glad you have had some additional good news in the meantime, which will make the wait, slightly easier too.
when I had my diagnosis in Feb, I would have gladly walked from the outpatients into the operating theatre to get rid of the cancer! My surgeon said “Breast Cancer is not a medical emergency”, and that many tests are done before the op to establish as much as they can & what they are dealing with before they operate making the operation as successful as possible.
You can read the NICE full guidelines to treatment for early&locally advanced breast cancer and maybe that will help to make the timeframes clearer for you.
Good Luck to your mum. Tinax
I think that sometimes it can be more difficult dealing with a loved one’s serious illness than it is to deal with your own because you feel more helpless.
I agree with everything that has been said before but would add that I think that it is important that you understand now that your mum’s treatment may actually take the best part of a year from beginning to end, and that this is quite common. I had my biopsy on 21st December, have had lumpectomy, 6xchemo, mastectomy and recon, started my hormone therapy and am still waiting for a date to start my radiotherapy which will last over a month from my set-up appointment to the end. This will be 10/11 months from biopsy. I do not feel that there have been any unreasonable delays.
So take a deep breath and be ready to see the year through with your Mum. Your mum is actually in a very fortunate position as most of us do not get to have an MRI if BC is found in only one breast so have no idea whether or not it may have spread beyond the lymph nodes. At least your mum now has peace of mind as far as that is concerned.
Hi Ruby- I can see things from your mother’s perspective as I am near to her age - and am a mother (and grandmother) with BC. I was picked up on a routine screening but had no symptoms at all : my previous screening had been 3 years before so goodness only knows at what point my cells had started to mutate abnormally. My cancer has proved to be Grade3, stage 3 so is ‘aggressive - but I really do not think it would have made any difference if I had been seen, had surgery and started chemotherapy a few weeks earlier; even fast growing cancers take a very long time to show themselves with signs and symptoms.
I didn’t have an initial appointment until 5 weeks after the screening as I was on holiday when the letter was sent - and after being seen and the diagnosis confirmed I actually opted to postpone surgery for another 6 weeks .
I know it is hard for you but it is not helpful for you or your mother for you to beat yourself up about the delay - when in fact your mother has been seen very promptly. . Obviously you are very concerned for her- maybe my own adult children would have reacted similarly if I had told them about my diagnosis but I didn’t tell them until I knew exactly what was happening and what the treatment plan was to be.
My younger daughter(was diagnosed at 32 with triple neg BC followed by a 2nd BC in her other breast 4 years later - so we have had to come to terms with quite a bit in the last few years. The NHS is not perfect and our BC survival stats are not as high as we would like them to be but I think it sounds as if your mother has had an excellent response so far.
Good luck to her and your father- and try not to let your own anxiety add to what they are both going thro’ at the moment.
