Worried about delay?

[1960sgirl]

Hi powdow,

what a dreadful story. Can't believe that you breast care team are giving you such a rough time. Waiting for any op is agonising, but cancer intensifies that.

Had something show up on mammogram in Jan 2015 but despite several attempts could not get a positive biopsy. Had further biopsies at start of this year. My diagnosis was at the end of January - breast cancer in both breasts. My first ops were a month later - two WLEs and one SNB. results showed invasive ducal in one breast (with clear margins) and DCISin other breast (without clear margins). SNB clear. I needed radiotherapy on one side and a mastectomy on the other. The MX was 5 months post diagnosis and I was okay with this as I needed to get the radiotherapy completed on the invasive side first and whilst this was happening could work out whether or not I wanted a recon on the other side.

Have now had my op. Have been lucky that although the DCIS has increased it has not changed to an invasive cancer so the delay has not been a problem for me. But guess this all depends on the type of cancer you have really.

Hope everything works out well for you. X

[swampy1901]

Hi Janey2

I'm glad you were able to change your BCN - it makes such a difference having someone you really can talk to doesn't it? My BCN has called me weekly if she's not heard from me - has found out or explained things for me - gone through my histology report with me and given me copies of things to take away to read and digest. She has told me what to expect from the operation and afterwards at home - given info about complementary therapies I will have access to - all sorts of things. All things that we should all be able to ask our BCNs about without fear of ridicule and that includes powdow.

[Janey2]

Hi Swampy. I too found the first BC nurse very evasive, almost frightened I think of giving bad news. Her starting point was to give me a card with her phone number on, before recall tests were done - so I knew something was wrong! PALS will be a good starting point. The 2 nurses I've seen subsequently have been brilliant; open and honest (as much about what they can as they can't answer). That's what you deserve too Powdow and you should be able to ask for someone else. I'm so sorry you've been left upset again and sending a virtual hug xx

[swampy1901]

Get onto PALS as soon as you can. There is no reason at all for this BCN to speak to you in the way that she has and to leave you feeling the way she has. PALS may even be able to intervene on your behalf and come up with some more information regarding delays regarding your treatment regime and so on. You have enough to be dealing with - without this BCN adding to your woes. I would ask to change her immediately. Just like in real life not everyone gets on with everyone else - you don't have a rapport with the one person who should be able to allay your fears and answer your questions (in triplicate if needs be!) 

I didn't like the first BCN I was allocated and felt that she was evasive and wouldn't answer my questions so when I had another appointment with a consultant I asked to change - it happened no questions asked and I along with my family are a lot happier with our new BCN.

[Powdow]

Hi Janey2,

I just called my breast nurse there, to ask a couple of questions re the timing, whether possibility of cancellation appointment and to discuss my fears re the delay, which I think it's too late to do anything about. Honestly, she really has no bedside manner, everytime I call her, and it's only been a couple of times since May, it's like she's giving me a telling off! I came off the phone there and just burst into tears, there is no compassion in
her manner at all. She's meant to support me and she just makes me feel worse.
No point is asking for another now as by the sounds of it because my op will be at a different hospital I will get a breast nurse there. Hopefully a lot better.
Just gutted

[Janey2]

hi Powdow. That seems an unbearably long wait. I'm not sure whether NICE guidelines or just local to those of us in Devon, but I was told I had to have the operation within 4 weeks for targets. Just squeezed in 2 weeks ago but back in tomorrow, as they need to take a bit more, as bigger than expected. Not nearly as long a wait as you've had to endure. However, I've been reassured the original wait had no bearing on size and lymph nodes but they can't be sure of anything until after they operate properly. A horrible time for you and yours and sending you all the best everything starts to go smoothly xxx

[Powdow]

I got my 1st biopsy in April, results 3rd May confirmed lobular 11mm I think it was.
Due to being lobular needed an MRI, think this was 23rd may, a few weeks later anyway. So had to wait for results of that, then it showed something, so had to get another ultrasound. Then wait for results of that, which ended up being another cancer, 4mm, so lumpectomy changed to mx. So met with a plastic surgeon (wait for that appointment) and decided on Diep. By now it was mid / late June, needed another MRI on my abdominal arteries for the Diep. Had holiday booked 1st 2 weeks July, so they said to go on it as not much would be done in that time.
Got sentinel node biopsy 2 weeks ago and cancer has been found in the node they removed. All along they were confident it wasn't in the nodes, no sign in mammogram, MRI or 2 x u/s. I do know that it is hard to determine but worrying due to delay.
Then they said the original ps so busy they don't want to wait for him (this was discussed before node biopsy, it was at the meeting with surgeon day before op).
So got new ps and op is scheduled for 14th Sept.
So diagnosis to op 3rd May to 14th Sept. Everyone I speak to seems to think this is really long, and the surgeon also commented sorry that it's taken so long. It's hard because it's all small delays that have accumulated, so I feel there was nothing where I could say I'm not happy this is too long, but actually I thought when I met with ps in June, although I still had to have mri to confirm arteries for Diep were fine, I did think he would have pencilled in a date and really did expect the op to be very soon after I returned from holiday.
I am ok with the wait, I don't drive myself crazy with worry, but I am now worried that the delay could be the difference of clear nodes and a straightforward MX to now potential chemo and potential secondaries.
Anyone else had this time between diagnosis and op?