Clinic wait

Have I got breast cancer? Appointments and waiting for test results
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Hello all.

I feel like i’m going out of my mind. I’m 45 and found a 1cm lump in my boob with some soreness . I went to the doctors and they referred me on Monday the urgent pathway. They said i would hear in a few days, i haven’t yet.

i have had aches and pains in my back, legs and arm for a few months and panic now has set in that it’s cancer that’s spread to bones.

Putting my anxiety into context my sister had breast cancer in her late thirties and had Chemo, mastectomy etc. She is in remission and fine so well. However 2 years ago my mum got diagnosed with Bowel cancer and died only a few months after. Which i fear is me.

I was wondering if i could ask a few questions

  1. How long did it take for people to get a breast referral?
  2. What do people do to cope in this stressful wait of not knowing ?

I can’t speak to my sister as she would be so worried and mum no longer here. The worry is off the scale. I also have a boy of 7 who is SEND and i am so scared for him.

Thank you for taking the time to read this. Ceri xxx

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Hello, I am sorry to hear what you have been through and are going through.I am really new here, but will be glad to share what I have experienced so far.

I found a pea sized lump on Tues 12 August, saw GP on Weds 13 and was referred - 2ww. I have very poor phone reception and I read on CRUK website that a phone call advising an appointment date/time will show as withheld.

Stressed with it all and having poor phone reception, I called the hospital Breast Cancer Nurses on Friday afternoon, but they had left for the week and I spoke with Breast Screening and they said that they could see my appointment on their screen and told me there and then.

I spoke with hospital Breast Cancer Nurse on Monday to ask how they communicate and they said they will call and if no response, they will text and if still no response, they will send a letter.

I recommend that you call the Breast Cancer Nurses at the hospital where your appointment will take place, as to when your appointment is. if you’re not sure where your Breast hospital is for your docs surgery, do call the docs surgery to ask. Knowing when your appointment is will give you something to focus on. Mine is on Tuesday 26 August and they explained the initial pathway too, so I would ask for the specific date of when you will receive face to face biopsy results, if you do have a biopsy. At first the BCN said it would be the following week and so I pressed her for when and she said all biopsy results appointments are on a Thursday and patients can choose morning or afternoon.

I imagine every hospital will be a bit different, but do advocate for yourself and keep asking until you have the information you would like.

I think I have found another lump today, it’s smaller, but it made me feel so nauseous. I have drawn on my breast where I think it is, so that I can check again later. Waiting is very difficult, probably one of the most uncomfortable feelings I have ever had.

I recommend only sharing with partner and closest friend if said friend will benefit you. As new as I am to this, I’m am so grateful for this service and the forum and nurses and I recommend you continue to use it as much as you need it.

I’m an oversharer but I know that if I share it with a friend/neighbour, I will have to include her in the process, so I’m keeping my circle very small, just one friend and hubby. The last thing I want to hear from someone is how fabulous treatment and success rate is these days, when I know they mean well, but I also know this.

I’m sorry that I can’t help with your second question, but do know that it is very normal to feel like you do, let those feelings surface, recognise them, I write down how I feel as I think this helps, but I have ADHD and I’m not consistent with anything. Don’t put pressure on yourself to do anything that you don’t need to apart from keeping things ticking over and self care and looking after your boy. I’m about to watch some ‘silly telly’ for a little distraction, but know that it will be a tough few days until Tuesday arrives.

Thinking of you, do let us know how you get on xxx

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An update from my message below… today, I received an appointment letter from the hospital, so to recap timescales:

Found lump Tues 12th
Saw GP on 13th and she referred on Wed 13th
Today Fri 22nd, appointment letter arrived, dated Fri 16th.
Appointment is on Tues 26th

So it was 1 week from the date of letter to receiving it and I am so glad that I contacted the hospital on Fri 16th to ask when my appointment is and they were able to tell me.

I hope you get to know soon.

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It can depend on how snowed under the clinic is how timely they deal with appointments. Some actually do manage to give you one within 2 weeks of a Dr’s referral, some take the 2 weeks from when they ring you to arrange it. I got phoned a few days after my GP said they would ring by (there was a weekend in between). They offered me a couple of options and said I had to pick one as anything later was outside of the 2 weeks and wasn’t allowed a date outside of that. It ended up 2 weeks and a few days from Dr referral. It’s probably more like 2 weeks from putting you on their list to be seen would be a more accurate description and may be enough to satisfy targets from their pov. So it can be a little over 2 weeks in all. Unless at a trust that has real problems delivering on the target and have somewhat given up on meeting it - in which case they probably get fined, or lose an incentive they would of had.

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And after seeing another post, it prompted me to check my NHS app and my appointment was on there, but don’t know when it was added.

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Thank you so much for your messages. I haven’t been able to respond. But it prompted me to phone the hospital on Friday. After calling around a good few areas i got through to the right department. They told me that they are very busy and many people before me. That i most likely I wouldn’t get a phone call next week and the appointment at least 2 weeks away. I didn’t kick up a fuss, but was relieved i didn’t have to wait by my phone for a week.

After this the panic set in - was so upset for the afternoon. However a miracle happened, about 4pm another woman called me and offered me an appointment at the outpatients for next Wednesday 27th. She said if i needed imagery i’d have to come back at a later date.

So i will at least see someone next week. Even if i dont have all the tests. I dont know if my call prompted this or just coincidence.

I’m still not sleeping as so worried, i’ve almost convinced myself i have cancer due to my family history. I need to stop this.

Ceri xx

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Good luck, and I’m glad you are seeing someone next week.
Waiting and the unknown really is hard, I too have a family history my mum diagnosed and died within 5 months, though it was at a secondary stage by then, and my dad died within 2 weeks of colon cancer.
So naturally me aged 50, I’m now thinking it’s coming for me. Thankfully a mammogram caught something , and I was diagnosed with dcis (early bc) and had a lumpectomy a few weeks ago. I’m getting twitchy about my results in a couple of weeks as I know there is a risk that things can change.
But my take home message is acknowledge these worries, but that these worries won’t last, you’re in the dark at the moment. Physical anxiety can really crank up during this period, but again lots of aches and pains can be normal part of ageing. Try not to Google too much as there are lots of types of bc and stages and grades. Try and do some nice things, be it watching good TV, walks, days out, any mindful activities and try and sleep and eat well. Remember this period will pass xxxxx

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Hi Ceri, I am so glad that you have an appointment - it’s good to have a date and time to get some initial answers and not have to wait by the phone.

I have an email address for my breast clinic, in case I want to use that too. I asked them for it. The BCN had to ask a colleague for it because it’s not something they usually use. Of course they’re going to be busy easch day and might not be focussing on emails, but I wanted a back up in case poor phone reception at home meant not being able to connect.

At the moment, I’m imagining being in clinic, sitting with the experts, having lots of questions, running through what I think will happen at my appointment, based on the usual clinic session of physical examination, health history, likely mammogram, potential ultrasound and biopsy.

I have ADHD and so it’s normal for me to go down a rabbit hole and hyper focus, this is very deep rabbit hole and not easy, so I completely understand how anyone in our position might do this.

Do let me know how you get on and keep posting and asking for answers from this fabulous community.

I watched the series of 6 ‘videos’ that Victoria Derbyshire created with the BBC from her mascectomy day to finishing treatment. It was 10 years ago, so some things might have changed? They’re easy to find. it helped me to understand what might be ahead and see that I and my family can get through it and i think that if I do have breast cancer, I can refer others to them to save on me trying to explain what’s going on,

it’s ‘normal’ and ok to have down and not positive moments and days. let’s not beat ourselves up over this. I never imagined that this would happen to me.

Bye for now.

Allison xx