Hi all, I was diagnosed with breast cancer on 19 December, after an urgent referral by my GP on 22 November.
I was initially told that the surgery would be 5 weeks from diagnosis but it has taken a long time to get the other tests done. They had to biopsy a second mass and they told me yesterday it’s a second tumour and I’ll need a mastectomy, but they’re only now putting me on the surgical waiting list which is another 4-5 weeks! I’m terrified that this long wait is going to affect my outcome. It has now been 62 days since the original referral which I thought was the maximum time to treatment.
My cancer is ER+ HER2- grade 2, the first tumour is 28mm and the second tumour is 14mm. The doctor has said that he’s not worried about the wait but I don’t know how he could be sure that it won’t make all the difference to my long term outcome? Especially now that we know this is a multi focal cancer it must be more aggressive?
I’m only 34 and I feel like my whole world has been turned upside down. I don’t have private insurance but I feel like I need to look into the options as the wait is so long and it could affect my survival. Does anyone have recommendations for private clinics in London and an estimate of the cost of a mastectomy with reconstruction?
Hi - I was diagnosed with IDC , ER+ HER2- at the end of November 2023. I then had lots of extra tests and another tumour found in the same breast. The tumours were small and close together so I was booked in for a lumpectomy . My surgery did not happen until 6th February 2024. It was hard waiting and I did struggle mentally but was told that a few weeks would not make any difference and that it was important that they did all the tests to ensure that they got everything . Its so hard waiting and I feel for you . Sending lots of good vibes x
Under the NHS you can select which hospital you are treated under. You could potentially ring up an alternative NHS Trust and ask what their waiting times are.
Sorry that you’re going through this and I can very much relate to the anxiety of waiting.
I had health insurance so did end up having my treatment privately. I can PM you more details if you’d like? I had a single mastectomy but no reconstruction.
I was in a similar situation with stage 3 cancer in both breasts needing a double mastectomy and the tests and scans took so long after being diagnosed in August I was given a date in December which was way outside the limits for starting cancer treatment. I was so scared and felt let down, as admissions was no help kept saying nothing available full up.
I found the email of the CEO of my Trust, and decided to write to him directly pointing out that my case was way outside the official guidelines for cancer treatment and what was promised by the NHS and also was quoted on their trust website.
Within 24 hours I had a reply and within 48 hours a new date for the op brought forward to November still not ideal but better than before
Please try this and also copy your MP in too
wishing you all the best
regards
I can fully empathise as I also had a bit of a wait before surgery last year. I was scheduled in two weeks after diagnosis (ER+ HER- Grade2) but MRI showed up other stuff which needed to be tested. Surgery was rescheduled but then MDT didn’t agree about the biopsy or the surgeon’s plan so I had another frantic wait while my case was reviewed by an expert. In the end it took a couple of months from diagnosis to surgery, over the 62 days. Like you, I was really anxious during that time and desperately wanted something done as soon as possible and argued about the guidelines but was told they are that, guidelines and not guarantees.
I know it’s easy for me to say now, but with the benefit of hindsight I am glad that this time was taken as it meant my case was considered thoroughly. I ended up having the right surgery for me rather than rushing into a proposed plan which would not have had such good outcomes. It’s hard, but please try and trust that your team would not delay if they thought it would put you at any further risk.
It’s hard but it’s not a while. It takes between 9 and 16 years for BC to become detectable so I hope that helps for some perspective. Please use the time to pause and reflect on what you want and need to happen. I say this as I have met many BC women who now post treatment feel very rushed with little time to stop and consider everything from emotions and feelings, to practical issues, or take the time to research and understand the new normal.
My surgery was delayed by another life-threatening health condition from which I made a full recovery. The time I spent healing from that, made a huge difference to how I feel about all of this before I had surgery 5 months after mammogram. I truly broke the 62 day rule.
I know what you are going through and I now how difficult it is. I had a lumpectomy three months after finding my lump and a mastectomy six months after. All my treatment was delayed by tests (I had to wait more than a month for an MRI) and strikes (junior doctors and radiotherapists).
I was also very anxious and looked into getting treated privately. My team were unconcerned (which is unfathomable when you are totally panicking) saying it just doesn’t grow that quickly.
The main thing I want to tell you is that I realised that private treatment might be best for a one off surgery, like a knee replacement, but cancer care involves a multidisciplinary team and many different treatments and options over a long period of time. If you leave the NHS it might be harder to get back into the system without a confusing mess or even worse delays. Assuming you don’t have enough money for all the tests and follow up treatments, chemo and radio, this is an issue.
I also echo what others have said, that the long wait is often reflecting the teams thorough approach. Everything examined, checked, double checked and discussed.
I am not saying that you shouldn’t look at other options and the advice from others about writing/ complaining about the wait is good but please try to keep calm and trust them. They do know what they’re doing and they wouldn’t knowingly put you at increased risk. If they were going to, because of unavoidable delays, they should tell you.
Having worked in private health care and NHS. I would say stay with the NHS. If there are any unexpected needs they will be cared for by experts interested in your health not the company profit. NHS care is world class. You’re ok to wait. It’s just really worrying.
When I was in this situation my consultant started me on Letrozole straight away. Letrozole stopped my ILC 39mm tumour getting bigger while I waited another 7 weeks for my Diep flap and reconstruction op. It’s really hard waiting but try to be positive! xxx
In the end my breast cancer nurse managed to get me onto the list for 5 Feb, next week. It was such a relief to get a date. Though I’m anxious what they’ll find and hoping it hasn’t yet spread to the lymph nodes. Thanks all for your advice and kind words xx
Waiting is the worst @ash543 and I know how hard it is.
However, you are lucky they’ve found that 2nd tumour. My 2nd, 3rd and 4th tumours were not identified on original mammogram and US. I had my surgery for a lumpectomy on the lump I’d gone in with, 5 weeks after diagnosis. Pathology found the 2nd, so i had another op which then revealed 3rd. I had a cavity shave to remove this.
Like you, all my cancers were grade 2 hormone+ her2-. This is the easiest type to treat and cure. If there are more tumours it does not mean cancer is more aggressive. My 4th tumour was not found until 7 months after my initial diagnosis, when an eagle eyed radiologist decided to take another look at mammogram done 7 months before!! I have since had chemo and a masectomy with reconstruction. I’m now about to have radiotherapy and start my antihormone medication. It’s now 13 months since my diagnosis and the final tumour was removed in masectomy 1 year after diagnosis. It’s been a crazy long time with many formal complaints to the hospital. Despite the huge 1 year wait, the tumour had not grown much and my prognosis is the same…extremely good.
If i were you, I’d call my surgeon’s secretary, request date for operation stating it is now past 62 days. Chances are you are penciled in already. As you are now having a masectomy, it doesn’t matter if the tumours have grown, and grade 2 don’t grow fast. They will likely take sentinel lymph nodes too to check for spread.
If you’re adamant about going private, remember that most surgeons work for nhs and private so you’ll get similar treatment. You might have to wait while they gather reports from nhs too.
Good luck, all the best. I hope things move quickly for you xxx