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Concerned about delays

3 REPLIES 3
Nurse_BCN
Moderator

Re: Concerned about delays

Hello Dizzy

Thanks for posting. It's understandable to be concerned about the wait to start chemotherapy.

There are targets of 31 days  for subsequent treatments. However, this is taken from when the decision is made to have that treatment and not diagnosis. A further five week wait to discuss your treatment does seem like a longer than usual wait. As Jaybro says your team will want to make sure they have all the information they need plus the opportunity to agree this at the multi-disciplinary team meeting which may explain some of the time this is taking.

It might help to contact your breast care nurse to talk through your concerns. They may be able to explain this time frame, which may include some backlog created by the problem with the path lab. If there is no option of having an appointment sooner hopefully they can reassure you this won't impact on the outcome for you.

Do call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

The number is 0808 800 6000 (Next Generation Text service, prefix 18001).

Please be aware our Helpline will be closed on Monday 30 August due to the bank holiday.

If you would like a nurse to call you do complete this form. Ticking the box agreeing to a call back.

Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.

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Best wishes

Jane

Breast Care Nurse

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This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

dizzyc
Member

Re: Concerned about delays

Hi Jaybro

thanks so much for replying and for the link, it was really helpful. I’m a bit new to the forum, I wasn’t sure where to post my question. I haven’t met anyone from oncology yet, but my BCN and surgeon have been wonderful and I totally trust them, the delay for my surgery was because of several changes in the plan as test results came in which was exactly the right path to follow. I was quite chilled about the delay in path results, I felt more sorry for the nurses having to rearrange and calm 40 fretful women. But, now, having got my head around chemo, the wait for the next stage seems intolerable. And the cumulative effect of the delays on my outcome worries me. So thank you again for replying and for the link, I’ll read it again in more detail. DCx

Jaybro
Member

Re: Concerned about delays

Hi Dizzy

Sorry, didn’t see it was Ask Nurses. Comments withdrawn x

I think this is a case (after the errors) of trusting your team to get it right. They may go past the 90 day recommendation for a good reason. Meantime, you might find this useful : https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/access-to-treatment/waitin...

Wishing you a successful treatment x

dizzyc
Member

Concerned about delays

I had my initial BC diagnosis at the beginning of May this year following a mammogram call back. Biopsy showed invasive lobular ca but MRI scan showed another lump in the same breast. Decision was made to have a mastectomy with immediate recon but had SNB on June 11th. Found micro metastases in  1/3 nodes so recon delayed to allow for radio first. Mastectomy on July 12th. So far, so okish. I breached my target date for surgery because of the faffing with SNB, perfectly understandable and my surgeon has been brilliant. Pathology took 5 weeks to come back because of a cock up in the lab, it effected 40 women apparently! (Poor poor nurses and admin who had to call us all to delay our follow up appointments, can you imagine the stress of 40?) I had a review Monday 16th July, the PREDICT tool suggests chemo might be beneficial but an onco type test is being done and this takes 10 days to come back. Just had my appointment for oncology to discuss this and it’s not for another 5 weeks! Surely this isn’t ok? 11 weeks after my mastectomy? It’s no complaint about my wonderful team, they’ve been so supportive, but I can’t believe this is an acceptable wait, given the timescales? Is anyone able to give me some advice on any national guidelines or any tips to help me? Surely if I need chemo, I need to be starting sooner than nearly 5 months after initial diagnosis? Slightly freaking out! I understand the NHS is under pressure and I wouldn’t want to queue barge, but I’m worried to be waiting this long for further treatment. Many thanks Dizzy x