Hello, i dont really know where to start tbh. I was diagnosed with DCIS and IDC in my left breast and its also in the left lymph nodes. This was diagnosed on the 19th of January. Its been a rollercoaster since then, ive had MRIs, PET scans, CT scans, SEVERAL biopsies and numerous appointments. I got my treatment plan on the 11th of March after all the results of all the tests came together and then then knew it wasnt in the right breast also. I’m due to have a left mastectomy and full left lymph node removal soon (I hope soon anyway)
My question is, how long does this normally take to happen? When i met with my plastic surgeon (im having an immediate reconstruction too) he said it would be 4-6 weeks, then my breast consultant said that was too optimistic and it would be more like 6-8 weeks. I still havent even been given a date yet, i have no idea whats happening behind the scenes (my breast consultant is wonderful bless him and the team have been amazing so this isnt a slight at them at all btw)
I called my breast consultant yesterday and voiced my concerns because im going to be honest, i cant get it out of my head thats its running all through my body whilst im waiting and then theyre going to open my breast up and its everywhere. Thats whats stressing me out. Theyve told me it wont get worse whilst waiting but i just dont know… so much has happened.
I noticed my breast changing in late August and i went back and forth to the doctors and breast clinic several times, with them telling me it was nothing. I had 3 clear ultrasounds and it was only after i put my foot down that they gave me a mammogram and found it. And as i say, that was in January. Im just nervous that its getting left again, even though theyve proven to me that theyre on the case since finding it.
I dont know… im rambling. Sorry.
I just want to know how long these things usually take. Sorry for the long long msg.
Hi Zara, the specialists are so good they know what they are looking at but of course I know that does not stop you from worrying.
Keep busy and get everything prepared especially meals for the freezer, clothing and plenty of books to read.
Keep positive and ask for help when you need it, talk to friends & family about how you feel.
Most of all your not alone, you will have support from great nurses and other professionals.
Sending you big hugs for your journey x
Thank you for your msg! I appreciate it. I think its just that to them, and others ive only been waiting since January. But in reality, ive known there was something wrong since end of august. I feel like im losing my mind lol. Ive stocked up the freezer and got things in place, thank you for the kind words and positive msg 
Hi Zara, I’m a bit further on (only a month) and I know exactly what you mean about the stress of waiting and all the uncertainty. I was diagnosed on Dec 18th. Since then I’ve had my initial lumpectomy and slnb. Then a second op as my margins werent clear and my lymph nodes were positive. I’m now waiting for results from pathology for that surgery. I posted yesterday about the struggle I’m having with the wait and a wise lady reminded me that they are gathering as much info as possible to ensure they give exactly the right treatments. But you have your plan and once you get to 6 weeks, I’d query when it will be. You surgery is more complicated than mine do probably needs more planning. Good luck. I hope it will be soon for you. Get everything reafy at home. I’d recommend a heated blanket and a small soft pillow. X
Youre totally right. Thank you so much for putting it like that! I was wallowing there for a minute haha. I really appreciate that!
Thank you for the advice and the kind words. This is why we have this forum
Hello zaran
Thanks for posting. This sounds like an incredibly stressful time for you. Waiting for a date for surgery can be an anxious time especially when you have been given conflicting time frames by different surgeons.
Sometimes when breast reconstruction is the option you have decided on it can take a bit longer to organise the surgery. Many women wait 4-6 weeks for their surgery after a diagnosis has been confirmed. Although you have been told the wait will not affect your outcome, it is important to get a confirmed date as soon as possible.
Although you have spoken to your surgeon, you may want to consider contacting the Patient Advice and Liaison Service (PALS). You can find your nearest PALS office on the NHS website.
This is a confidential service for patients, their families, and carers in England. They can help resolve concerns related to health matters, explain, and handle complaints procedures and use feedback to help influence change. PALS work with staff, managers, and if relevant, external organisations to provide support and advice to people concerned about the care they are receiving.
If you live in Wales you can contact your local health board.
The Welsh government provide guidance to people living in Wales on resolving concerns or issues with NHS services. This is called NHS Wales complaints and concerns: Putting things right
In Scotland the Patient Advice and Support Service can provide advice and support with this.
You can register a concern or complain about your care by contacting the feedback and complaints team at your local NHS health board.
If you live in Northern Ireland, The Northern Ireland Direct website provides information on the standards of care which you can expect from NHS services in Northern Ireland. You can also seek advice from the Patient and Client Council They can listen to your concerns and are able to provide information, advice and help if you want to make a complaint.
It would also be a good idea to contact your breast care nurse and discuss your concerns. She may be able to speak the surgeons and get some clarification.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.
For more details about all of these services, please see the information on the link.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Carolyn
Breast Care Nurse
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