I was recalled after a mammogram being done on 17th May. Had further mammograms, scan and biopsy on 23 June. Told there and the I had cancer and at my hospital appointment on 17th July confirmed and told I have hormone receptive cancer. The shock was that they have no dates before end of august and will be intouch. Iam going out of my mind … I have to have a lumpectomy, lymph node removed and radiotherapy. The isuue is not the surgery for the lump but I am fightened that it is in my lymph nodes and may have spread. I cannot sleep and my head is constantly bursting. Seven weeks to wait to find out if its not in my lymph nodes is driving me crazy
Hi Nel - The first couple of weeks of diagnosis is the very worst and waiting for results and treatment is very frustrating and worrying and I do understand where you are coming from - I did all the wrong things by googling and worrying myself to death thinking of the very worst scenario - I think this is ‘normal’ if there is such a thing. In respect of your waiting there are NICE guidlines on breast cancer care and I am sure that NICE say the max time from diagnosis to surgery is 31 days - I haven’t attached a link as I am not sure if BCC likes you to do that - but its worth ringing the BCC helpline they will check the standards - These guidlines are there to reduce anxiety in patients and if your trust is missing them you certainly have a case. They also state you should be given a date at your appt and not put on a ‘waiting list’ by having an actual date it does help. My surgery appt was about 10 days after my dx (which was long enough for me) and I can’t imagine how I would have felt if had to wait 7 weeks - by the way they probably won’t be able to tell you that it is your lymph nodes after the op - that again is approx another 2 week wait as the tissue has to go to pathology for a full report. Can I also say that even if it has spread to lymph nodes its not the end of the world, and is quite common - that is what the lymph nodes are for, they catch stray cells. I had WLE, then had to have full Mx as they didn’t get margins - had lymph nodes affected to (quite a few). That was in 2010 and I am fit healthy and well so whilst I know its easy for me to say don’t worry too much. I would ring your BCN tell her how anxious you are and insist on an earlier surgery date which is within the NICE guidlines. lots of hugs xxxx
Thank s saffronseed. I think it is 62 days in Scotland. Surgeon said that the time scale for my treatment is due to the holiday period. They did suggest if an earlier time at another hospital came up would I go … that was a no brainer and said yes. I am normally a very strong person but if I had been given my date maybe I would have been able to focus a bit more. The registrar also mentioned that it was safe even up to 12 weeks after diagnosed.
I too was recalled after a routine mammogram on 23 June. Had ultrasound and biopsies and was told on 17 July that I have DCIS and invasive breast cancer grade 2 in my right breast. I have been told that the best treatment is to have a mastectomy, but as yet I have no idea when. I too am shell shocked and constantly going over in my mind what has been said. Just want a date so I know what I am working towards
Hi Dollie sorry yo hear that you too have a diagnosis. I have written to Nicola Sturgeon to make her aware that the recommended guidelines have not been met with regards to my situation. This is not down to the doctors and staff at My Hospital in Paisley but lack of resources. I feel totally let down. But what can you do. I feel I am at the mercy ofthe NHS and wish I could afford to go private.
Hope you get a date soon
xx
Hi, I was diagnosed on Monday 7 July and have had my appointments through for my lumpectomy Wed 20 August. I am really pleased at how quickly things have been put into place. I live in Scotland, although my treatment will be outwith my own health board area.
I was initially told is would be 3 weeks from diagnosis to the op stage but I’m going on holiday 31 July so I asked if it could wait till I came back, so 6 weeks it will now be.
It seems to me its a postcode lottery!!!
Best wishes xxx
I telephoned The Consultan’s secretary first thing this morning to be told that she was just back her holidays and that she would have sit with Dr K to make up the list for surgery. She also said there are other ladies waiting too. That she would get back to me by the end of the week. I live in Scotland too so I dont understand …
I am in Edinburgh. Diagnosed 11th June, pre-op 13th June, WLE surgery 7th July and results on nodes and margins tomorrow on 22nd July. It has seemed like a lifetime but in actual fact it has been quick! I hope you get your dates soon as the waiting is definitely the hardest part. Good luck. P xx
Hi Nel,
Just to reassure you. I found my lump in late September 2012 but didn’t do anything about it for 7 weeks. Then I went to GP who referred me to the breast clinic. Another 2 weeks. My surgery was on December 12th, another 41 days, one day short of 6 weeks. So a total of 11 weeks between me finding it and having it removed. My cancer was also in my lymph nodes, but hadn’t spread beyond one (although 3 were removed). I know you are going to worry, and the waiting is the worst time ever. I hope my time scale helps you worry a bit less.
poemsgalore xx
I too was diagnosed on the 10th July with lobular cancer, waiting for either a call or letter with date for operation for mastectomy.
It is dreadful waiting and all sorts of things are going through your mind, I have read and read the internet stuff about it.
What to to take to hospital to what the procedure is when you get there, my son also is reading through everything and has been really positive about everything.
Hope it won’t be too long for either if us, stay positive and it will be over before you know it.
Best wishes
Lynne
Hi took BBC advise line nurses advise and contacted my BCN. She told me that the next surgery time my consultant had is 17th September but did not confirm that I was on the list and that there are other ladies waiting too. I asked if these delays were due to lack of resources and was told it was. She also said I should not ne concerned as mt cancer was only 14mm and was invasive. She also told me that a scan of my lymphnode s did not suggest thst it had travelled there. I asked her if she could guarentee this but she said she couldn’t. She also stated not to worry I would get my surgery within the 31 day period because I am willing to go to snother hospital. Still not heard anything. I have now been in touch with my MSP who has written to the Medical Officer At Gartnavel Hospital for an explination. I havebeen in melt down a few times in the past week. You should not be given false advise (31day target) this only makes you worry your … because someone must made the decision that is the maximum waiting … sorry for the rant … is anyone elso in thesame situation. I live in Scotland and my Hospital is the RAH.
I have received my letter today and my appointment is the 20th August, it is in the day surgery unit which has took me by surprise I did think about 2 days. I live in the Midlands and was diagnosed on the 10th July so not too long to wait.
I notice someone is attending Paisleyx It is comforting to know there is someone in the and also Gartnavel. Meanwhile before my diagnosis I had severe depression so I am not coping. Any tips?