Has anyone else had to wait this long from diagnosis to surgery with no treatment? My diagnosis is IDC, ILC and DCIS in left breast 7cm G2.
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I went 98 days between diagnosis and starting chemo, I’m having surgery after chemo, but I was put on hormone therapy after about 9 weeks. I had to ask for it though.
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Yes but only in Lockdown when they told me in Nov surgery would be in May. I ended up paying to go private and have hated our hopeless and uncaring NHS ever since. You need to jump up and down and make yourself a nuisance I’m afraid
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I thought the nhs had to operate within a month? Definitely push and express your concerns. I also went private through my husbands medical insurance x
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I really feel for you. I had to wait 62 days from july to sept 2022. The tumours were 10cm and 3cm.
In july they said they would try and operate within 3 weeks, and the weeks just went on and on.
I asked should i go private after 3 weeks (i didnt have the money but could have put it on a credit card) but was advised the referral process would take a couple of weeks at least and that they hoped to fit me in soon anyway.
If id have known at the start how long the wait was going to end up i would have gone private for the mastectomy right at the start.
It is so difficult waiting. I really hope you are able to get your surgery soon one way or another.
I have remained in the nhs for all my treatment, but i have started pushing a bit more… recently i was waiting 6 weeks for a very particular biopsy under anaesthetic. So i rang about 20 other hospitals in the uk until i found one just 90 mins drive away which were able to fit me in 3 weeks earlier. Then i told my consultant who was happy to refer me there, and it went ahead.
I dont know if you feel up to doing that sort of thing but we know that staff havent time to do that for us, and it might be worth a try?
Good luck, hugs, NorthernJay xx
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I queried the treatment within a month thing as I was 65 days from diagnosis to surgery due to needing further tests and MDT disagreement on the proposed plan. I was told it is a guideline only. I tried to reassure myself that they were doing everything to make sure I had the right surgery but it was excruciating so I genuinely feel for you. I asked if I could start Tamoxifen while I was waiting to feel like something was being done but told no as it would have had to be stopped prior to surgery anyway. It’s a really tough time, the worst part by far in my view, but you will get there. x
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@tori123 how wrong that you had to ask for it but I am glad you are getting some treatment. How are you finding the chemo?
Thanks @teddy271 for responding. Each time I say to my consultant I think I am going to pay privately he says no, you don’t need to and then lo and behold another cancellation. It is infuriating.
@NorthernJay thanks for your response, I can see that you have had a similar experience. I too have been saying I would pay privately but my consultant keeps telling me that it is not necessary and I will have my operation on the very next operating day and then the cancellation comes.
In sheer dispair yesterday after being cancelled for the 3rd time I went up to the hospital to complain. The BCN was really lovely and admitted that it is unacceptable how long it is taking.
I think your comment about phoning around local hospitals is very interesting and is something I may well consider.
Thanks for responding, I really appreciate it.
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I was diagnosed early June (2022) and got my surgery in August. Mind you that’s despite me getting almost immediate confirmation at my screening in May that I had cancer. I asked my surgeon if it would be quicker to go private and he (to be fair) put me on both the NHS and private waiting lists to basically play them off against each other. When I hadn’t heard anything from either a month later I started chasing. The NHS route were AWFUL. Just said they didnt know but their list was long. In the end I managed to push through the private route but it still feels very disconcerting even now that my wait was so long. I also didn’t get any treatment in the interim and I believe that was because I’d be given Tamoxifen and you have to stop that for about 6 weeks overall if havjng surgery because of blood clot risk.
I’m so sorry that you are going through this but as another poster has said, try to make yourelf heard and if you need to you can maybe try PALS if you don’t feel you’re getting anywhere X
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I’m all done, it wasn’t nice but not as bad as I thought it would be. Cold capping made it worse but i did keep my hair so it was worth it x
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I feel for you, the wait is terrible. I was diagnosed 15 September two years ago today, didn’t get my surgery till 2 December, and when I queried the time scale was told that I wouldn’t be put at risk, I really do think it is a postcode lottery.
Best wishes
Alison
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@KChest what a clever suggestion by your surgeon to be on both lists. I feel a lot calmer today and know I am not alone in waiting and I will be seen. Thanks for your response x
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Thanks Alik, I think you are right. The hospital where I am having surgery would have been my first choice so I do feel lucky in that respect.
I am from Canada, but I like the Breast Cancer Now forum website (so easy to read). I don’t know if it was because of my age but I got the results of the biopsy on Sept. 9, 2019 and surgery was Sept. 27, 2019. There is a backlog for many surgeries here in Manitoba so I was happy to have the cancer out! I hope all goes well with you! 
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I am glad you managed to get your surgery quickly. Our healthcare system in the UK is under so much pressure.
Dear bonnie3, i have been in the same position twice. Once in March 2023 and then in April 2024. We put the cost on the credit card because waiting was not an option and no one could give me any dates. The first lumpectomy was £13,500 and the second a mastectomy was £18k. Both of these were in Central London which could have potentially raised the price.
Hi Jan3
Interesting about the price in London. The Priory in Birmingham quoted me £10500 for a single mastectomy. I eventually went through the insurance route as it did take some time to get sorted,