Hello, like so many here I’m recently diagnosed; biopsy taken 2 weeks ago and results yesterday in first meeting with breast surgeon; Grade 2 and oestrogen positive, still waiting for Her2 result, lymph nodes “look OK’ish” but a bit unclear on ultra sound so they will be checked out in surgery.
Surgeon quite positive about “curative treatment” which was good to hear but then floored me with saying that my mastectomy op would be on 3rd Feb next year. That’s 50 days away and I’m really worried about the delay. I queried it but was told the wait wouldn’t really make any difference to the outcome. But I’m still very very worried, having being diagnosed with cancer is stressful enough but now facing 50 days of trying to stay positive is exhausting and I’m already feeling drained.
I’m pleased to see that so many here appear to be getting much quicker treatment and op dates after diagnosis but that just makes me even concerned that something in my pathway is missing.
Can anyone provide any info or advice about waiting 50 days for treatment ?
I was diagnosed 1 August & had my Mastectomy on 22 September. It did seem like a long wait.
I had immediate DIEP reconstruction, this meant coordinating 2 surgical teams from 2 hospitals. The consultants & junior doctors strike did complicate scheduling as well.
The “ideal” time from diagnosis to operation is 30 to 90 days.
Good luck moving forward, hopefully you’ll have no complications like me. The waiting is hard, especially mentally but it does give you time to get bits & put in place help for afterwards.
I’m now 12 weeks post operation & am feeling really well, everything has healed well & I feel almost normal again
Laura x
Hello bee2,
I waited 8 years after finding small lump.
Then, 2 years 2021 I got a biopsy: the diagnoses er+ stage 2 with lymph node and chest wall involved.
I needed to buy time for many reasons went on anastrozole for almost 2 years.
By the way anastrozole shrunk one of 3 lumps and one disappeared.
I understand that it has even cleared up cancer completely in some people.
But … not me I just had a single mastectomy Dec, 6th with out reconstruction .
Do not worry help is on the way and if I were you I would ask to be put on the waiting list for earlier date and continue to check in to see if you can get this DONE!! Ask for another surgeon. COMPLAIN if you are not comfortable.
I had nerves of steel to have lumps and do nothing, I was living a normal, joyful life and no one knew I had cancer.
Best of luck you can do this and be joyful. I had NO pain from the surgery.
My friend who had double mastectomy with reconstruct was in a chair for 3 months. I am up and around 10 days later and slightly joyful.
WInda
I was diagnosed initially on 15 May 2023, with HER2 test taking 4 weeks and also needed more tests, MRI to size tumour which then found something in the other breast, another ultrasound biopsy and wait for results. I finally got my diagnosis and had a bilateral (both) lumpectomy on 5 July. Which was about 50 days.
In clinic on a Monday, when I got the ‘final results’, I was told the operation would be the following week on Wednesday. So that was just 10 days.
I have read so many times that breast cancer is not a medical emergency and it’s best to get the right treatment first time. If you’ve received all your results and require no further tests I would have though it would be earlier, unless of course it’s the NHS pressures on beds etc and then they don’t operate as much over Christmas and New year.
Maybe give your breast nurse a call and ask. When will you be getting your HER2 results? Maybe ask then.
Thinking of you. You need advocate for yourself. Push them if you feel it should be earlier and ask them to justify why they have given you that date. You want honesty.
Thanks very much for replying so quickly. There’s such a range of experiences and it’s reassuring to hear from others who have had similar to me. The surgeon did mention the junior doctors strike in January but I was trying to process so much information that that one went over my head.
I also hadn’t realised that 90 days was a bit of a cut off but have now done some reading around and found that seems to be the case. It’s frustrating and maddening though that all the info I’ve been given talks about 2 weeks to get a referral (took 3) and then 31 days for treatment after diagnosis (been scheduled at 50) so I’m expecting things to happen to a timescale they give me only to find it’s taking a lot longer. Then of course all the horrible thoughts seep in ! AAARRRRGGGHHHH ! hate this ! … but so very pleased to hear you are well and almost back to normal, it’s the good news like that that shines the light at the end of a very long tunnel. Thanks again for replying.
Thanks Winda, I am in awe of your resilience, you certainly do have nerves of steel !
I’m feeling my way through it all at the moment and am checking what is “reasonable” to expect, 50 days feels like a long time and before I go back and get pushy I wanted to see how others have been treated. I know we’re all different and will follow different paths depending on our circumstances but there’s some commonality in treating this horrible beast and I do think 50 days is too long. It may be clinically OK but it’s draining me. I will be chasing things up next week.
Thanks for getting in touch, I hope all is going well for you.
I’m not due anymore tests and it’s just now mastectomy, and see if/what else they find in the lymph nodes followed by whatever treatment might then be needed, radiotherapy or chemo and as I’m oestrogen receptive then tablets too but wasn’t told which ones. So yes, I was hoping the op would be sooner than later. It’s the fear of it spreading that’s playing on my mind.
I hadn’t appreciated that it’s not considered a medical emergency. I’ll try and convince myself of that , LOL.
And, thanks for the advocate advice, I’m going to give the nurse a call next week and query things, I’ve got a list of Qs forming. Yesterday was 30 mins with the surgeon going through things and I came home a bit bamboozled. Today things seem a bit clearer and certainly forums like this help to get a better understanding, talking with others is a great help too.
Apologies to all too - I’ve just had a note come up telling me I should post one reply to everyone not individual ones ! Ooops, still finding my way round the forum .
Thanks again to everyone and hoping everything goes well for you.
Don’t worry about the note popping up about replying to all. I’ve had that a few times. It does seem easier to reply to each individual.
If you want to reply to more than one person at a time, click the reply at the very bottom of the page and @ each person you want to respond to. Their names/handles pop up in a box so you can click on them. I’ve found I’ve had to make notes of what I want to say to each person doing it this way, whereas replying from their reply at the end of their comment it was fresher in my mind to respond.
