Hi,
I have a 5cm ILC Er+ Her2- which was diagnosed on on the 19th of April with MRI confirmation 2nd of May (originally they thought it was 1.5cm)
I had a CT scan on Saturday which is said to be procedure but has caused me a great amount of anxiety.
I have been booked in for a full mastectomy on the 10th of June, I’m so worried that the delay is too long, My surgeon explained that because of all the bank holidays there have been 3 days where no operations were preformed…this seems Crazy to me! I guess I am looking for reassurance that the timing is ok. I’m sorry if this is a stupid question… I’m just really struggling with everything
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Hi @hayley3, I was diagnosed on 31st October and was scheduled for a lumpectomy on 13th December - this was then delayed until 18th January as we found out that I have the BRAC2 gene mutation and I opted for a bilateral mastectomy which needed more surgeons, plus it was around the junior doctors’ strike. We were worried about waiting but none of the surgeons were and none of my team have seemed to think there was anything unusual about my treatment journey.
I also needed a ‘routine’ CT scan after 2 of my lymph nodes were found to be positive. I was terrified as well, but again the team seemed confident it would be all clear, and was just a ruling out exercise, and thankfully it was.
I hope this is reassuring - I know all the waiting etc is awful, but you will get through it xxx
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I was diagnosed in December. I’m about to have my 3rd surgery in 5 months. I am expecting a 6 week wait before my results and hoping that by month 7 I will finally see an oncologist about the next steps. However you should be reassured by the fact that most cancers don’t grow that fast and you’ve had an mri and ct scan which many trusts don’t even use. They will push things faster if needed. Good luck.and I hope you don’t wait too much longer. X
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Try not to worry. The waiting, whatever the cause (waiting lists, staffing, strikes) seems horrendous to us and they (medics) don’t seem at all bothered. That’s, to some extent I think, because they understand the risk and growth rates etc and we convince ourselves it is romping rapidly around our body. I had the same diagnosis as you including the change in tumour size. My treatment took the whole of last year to complete and the long waits caused me so much stress. But my advice is trust them, they know what they are doing. If you needed fast tracking they would do it. Good luck xx
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Hi , i was diagnosed with invasive lobular BC , 65mm, ER and PR + and HER - on 20.4.22. I didnt have my surgery until 30 June 22 and had clear margins and therefore yours is going to be earlier. Be assured everyone will look after you along the way. I know waiting is awful but before you know it you will be on yhe other side
Thank you all for taking the time to reply, your kind words and reassurance means so much.
I’m desperate to get the show on the road. Lots of love
H xx
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I too had a 50mm tumour er+ pr- her2- diagnosed on 24/6/22 . I had mri and ct scans and had a mastectomy on 26/8/22. The waiting seemed to go on forever although I had a lot of tests/scans during the two months . Stay positive and use the time to organise what you need for the time your in hospital and recovering at home. Good luck and i wish you a speedy recovery xx
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Hi hayley3
Thanks for posting. Waiting for investigations and the results of these can cause a lot of anxiety, and it’s understandable you are concerned about the delay this has caused to your planned surgery in June.
It’s very common to need scans including MRI and CT so your treatment team has an accurate picture of what’s going on, and which treatment to recommend. Unfortunately, these can take time both to organise and report on but it’s important to have these results before proceeding.
As @sap1981 says this type of wait isn’t unusual although distressing to go through. Although the delay to your surgery can affect you mentally, it’s unlikely to have an effect on your breast cancer.
I wonder if you have spoken to your breast care nurse about how you are feeling. They are there to support you during this time and throughout your treatment. They may also be able to refer you for psychological support including talking therapies.
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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Hi Haley,
I had a 4.3cm er+ her- ILC, which pre-op was thought to be 1cm. Histology from the initial lumpectomy had no clear margins and I went on to have a mastectomy and full node clearance which revealed the full 4.3cm and 3 pos nodes. The surgeon at the time said the wait between surgeries was fine because it was a short time in the life-span of a tumour which would be some years. I had chemo and radiotherapy after. All this was 16 years ago and even with the messing about I’ve had no recurrence of that tumour.
Just thought that might be reassuring. Best of luck with it all.
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Good luck @hayley3 i too waited 5 weeks trying to isolate so I didn’t get covid which I was advised or it would put back the surgery another 7 weeks! It was the worst isolation as the weather was so horrid. 5 weeks was bad enough but my surgeon advised it would be fine and I requested a second opinion at the Marsden and he concurred that 5 weeks was fine. I am now 3 weeks after my mastectomy and reconstruction and feeling good - back to the waiting game as 3 weeks for results - fingers crossed for this Friday. If you can do anything in the lead up time without putting yourself at risk then do it… I batch cooked , walked alot but missed my exercise 2x a week but you soon restructure. Good luck to you - you will be fine. Take care x