Hi
Ive just been diagnosed with BC. I noticed changes to my nipple and felt like thickening. At initial clinic 39mm lump and another smaller 11mm piece. The smaller piece was not seen on mamogram but picked up by ultrasound. One node seen on ultrasound as suspicious. I was so freaked as two pieces and the larger size i asked for a CT scan.
At results appointment surgeon says yes both pieces cancer and node malignant. Grade 1 for both lessions. Invasisive ductal NST (no specific type)
Then… CT picked up incidentals including womb thickening and lung nodules at which i freaked. He then explained lots of people have lung nodules and not cancer. He said CT scans pick up loads and i needed to see the gynae team re womb thickening before theyll do anymore. Also…and this freaked me he said something in bones. Could be anything… i said which bones and he said lower back. He didnt say youve got cancer there just that it was an incidental!!!
Then he sent me off with BCN to organise gynae bit. No mention of the lungs or bones. I was having a breakdown and saying why is the womb bit so important?? And why are you leaving the other things? I said ive been getting cramp in my lower leg it must be in my back etc etc… BCN said im sure your cramp is longer term …nothing connected to this… but then she popped back door to the consultant and he added an MRI to the list…he wasnt going to bother?
This was 10 days ago. Ive been given anastrozole whilst they do tests and wait for results. I had womb scan on Saturday which doctor doing scan said fine…normal level. This now goes back to gynae MDT. At my wits ends… not sleeping and feel written off. I will ring gynae people tomorrow to push for it to go back to breast team…but feel dead already.
Just wondering if anyone else experienced anything like this…
Sorry such a long post
Hi,
I’m so sorry that you are going through this, my experience is different from yours but similar in that after the initial diagnosis there was more worry heaped on, I was originally told the tumor was 15mm but as its lobular I was sent for an MRI that told me it was actually 54mm, I was then sent for a CT scan as it was so much bigger, apparently just procedure but definitely the most scary part so far, that showed something in my uterus that needed investigation, today I had a transvaginal ultrasound which showed what the doctor is sure is a fibroid…. Phew! But she wants to rescan me in 3 months?! I’m not sure why that is, if she saw something else, but back to worrying. I think that this initial part- the information gathering is the worst…have you got anything that you can do to calm your mind? I have been doing painting by numbers (I’m not at all arty) but every time I feel anxious I slap on some Netflix and get my painting out… which is alot, I think I’ll be able to open a gallery by the time this is all over! I’m sorry I can’t offer more advice, I’m still very new to this but I can hold your hand x
Hi @nellyh what an absolutely rotten situation to be in. Everyone on this forum knows that waiting for test results is the worst, most frightening part of a BC diagnosis. I also wonder at the “bedside manner” of some of these medics - they seem to have zero conception of the impact their words and tones of voice have on us as we grasp at every little thing to find understanding and hope and yet often find the exact opposite.
I know it is almost impossible to think positively at the moment but he is right, having CT scans or MRIs routinely throw up stuff to query like the womb thickening which, it turns out, is not something to be concerned about. Lung nodules are also not uncommon and are often benign. As for the leg cramp you’re experiencing, surely cramp is muscular not from the bone? It isn’t a sign that the cancer has spread to your spine. It utterly sucks that he presented you with this litany of possibles without giving you some reassurance but they are possibles rather than probables. Try to hang on to that. Anastrazole is a powerful drug and will already be getting to work on reducing the size of your tumours and dealing with any stray cells IF indeed there are any outside the local area (the lymph is considered local).
Nelly, you are not dead already - ooh, I wish I could give you a great big hug!!! You are in the programme now and on a well trodden path to treatment and recovery. Don’t feel awkward about keeping the medics on their toes with regard to progress, phone that BC nurse on a daily basis. Speak to your GP about your state of mind and he/she can give you something to help you sleep and should be able to give your surgeon the hurry up - mine did two years ago. You are amongst friends here so please keep positing whenever you need some support. It will get better soon.
@Tigress Oh wow… Thank you so much for replying to me. I am scared witless. The MRI is the thing thats terrrified me most… but surely if the CT scan had shown bone mets he would have told me? He wasnt going to do an MRI until i mentioned my crampy leg to the BCN. I know it can go to the bones so im terrified its there already especially as the lump was 39mm and although its grade one it must have been there ages so definitely chance to have spread…
@hayley3 Thank you for replying…means so much. I have good days and bad days. The waiting is killing me. I have tried reading and watching rubbish on tele but mind wanders. Glad i have found this forum and im sorry your going through this too. Have your incidentals slowed your treastment plan?
Of course you’re scared witless, (@nellyh) Nelly, who wouldn’t be in this scenario? Who have you got at home to support you through this? I know that not everyone is well equipped to be a support when cancer rears its horrible head but everyone needs someone, whether it is a family member or good friend who can listen and come with you to appointments, so I hope you have one or more to help. Don’t forget you can also call the BC Nurses here on 0808 800 6000 between 9am - 4pm and I guarantee you, you’ll feel much better if you do. The nurses have all been involved in cancer care and understand the processes better than any of us and they may be able to answer your questions about how bone Mets are diagnosed.
You’re doing the right thing by getting on to gynecology department tomorrow to get this thing moving. One department doesn’t necessarily interact with another with speed so keep on them. Keep on to the BC nurse too, I did as I was diagnosed by one hospital in a particular health authority and they chucked my case over the border to another hospital in an entirely different health authority for surgery. There was a time lag, I didn’t get lost in the system but there was a post-Covid backlog. I was insistent but polite and making it clear how the hiatus was impacting my mental health - let’s say, it was persuasive. You have every right to protect your interests.
I don’t know how old you are, Nelly, I am 68, diagnosed at 66, and I am from the generation when a cancer diagnosis (the Big C) was effectively a death sentence. It is not like that any more for breast cancer. The survival rate is higher than it has ever been and amazing new treatments are being developed all of the time. In the unlikely event that you have had a distant spread, many, many women are treated as if they have a chronic condition and life expectancy can be years and years. HOWEVER the way the surgeon expressed himself to you suggests that he expects the lung node and the bone anomaly to be benign so - as is often said on this forum - you haven’t got (secondary) cancer until someone tells you that you have secondary cancer. Seriously, try to get to your GP for some help with your sleep, it will help you see things a bit clearer.
Hey,
I haven’t got a treatment plan yet, I’m just waiting for my surgery on the 10th of June, then my treatment will start, he has indicated tamoxifen, radiotherapy any maybe chemo. it sounds like your doctor is being thorough which is very hard at the time but it’s so important to know what we are dealing with.
I love your advice @Tigress
Thank you both @tigress and @hayley3 …
I will speak to my gp. I am 51 and have 2 children who do not know yet. My youngest is soon to be 13. He is a very anxious child so i cant imagine what this will do to him. I just need to know more before we tell him…his brother is 17 and more independent.
I can live with any treatment i can fight but honestly terrified if its stage 4 even though i know it can be kept at bay. It would still destroy me. My whole leg and hip are aching today so mind is in overdrive.
Please let us know how things are progressing and we’ll keep fingers crossed for good news - at least as good as news can be in the circumstances 
Hi @nellyh, totally understand what you’re going through here. I was in a similar situation after being diagnosed grade 1 in Aug 22. I only had a small tumour 14mm and was told node negative but would double check with a sentinel node biopsy. Turned out node positive sent for CT and bone scans had a lung nodule and hot spot in hip. Utterly terrifying, I’ve had follow up 3month, 6month then 12 month scans the bone scan was signed off as arthritis and I have another (and I’m hoping final) CT later this year to check the nodule has remained stable. This would then suggest it’s not cancer related. It’s a case of trusting the process, taking any niggles and questions to your appointments really helps to write them down and be your own advocate if it doesn’t make sense to you don’t leave the appointment until you are clear. You’ve done the right thing by reaching out on here, stay in touch xx
I really appreciate you responding… thank you so much. Ive been up all night now and starting with pain in hip. Nothing was mentioned about my hip and i presume a pelvic scan would check that bit?
Going to ring the BCN team and ask some more questions. I was on HRT …which stopped and now on anastrozole so not sure if its that or my more sinister worries.
Yes hip would’ve been checked in a pelvic scan for sure. Your treatment will deffo cause joint pain I had it initially and was convinced the hip hotspot was something more sinister but it wasn’t. You’re going to think every single ache and pain is sinister but it won’t be it’s awful what happens in our minds following diagnosis but trust the process, no amount of worrying will change the outcome. Sending hugs xx
So i was contacted by the gynae unit today and despite the radiographer saying all looked normal because they couldnt see full extent of womb… i need a biopsy! Despite Radiographer saying my lining was 3.2 and should be less than 4mm. The appointment …the earliest they could do is in a weeks time. Meanwhile breast team wont see me and wont discuss anything until thats done. At my wits end… surely they could pencil in treatment depending on this outcome? I dont know much but i know womb highly unlikely to be connected to boob… any advice on how to handle this would be really appreciated x
Always, always keep writing in . Sometimes I’m just too tired to reply! ((Week 4 o 5 radiation). There are no other people that get this. Trying to find them out there is a frustrating waste of time. Sounds like so much is going on-it’s endless. I am sorry in a way no one out this club can be. Still trying to discover something to stop my monkey mind. Joined a “ anxiety slayer” pod cast. Lots of guided meditations. Still very hard. Every time I want throw towel in-I again realize that isn’t an option. Keep writing-keep crying-washing dishes-gardening-whatever to get you through
Driving actually relaxes me. I’m shocked!
Hoping for fast, positive results. Hoping nothing but the best for you 
@nellyh I can only reiterate the advice I’ve already given you really.
Number 1, get in front of your GP on an emergency daily appointment, explain how this wait is impacting you, ask for something to help you sleep as you are run ragged and cannot be as effective in dealing with this trauma as you need to be without sleep and also ask if (s)he can contact the surgeon to lobby on your behalf - my GP did this with the oncologist to get clarity on an issue for me.
Number 2, be persistent in lobbying your breast cancer nurse for a further appointment to be made in the week following your womb biopsy and if she cannot comply at least get an explanation as to why and what the timeline is likely to look like going forward. I think you need to impress upon them the damage that this process is having on you - for anyone to be given an indication that they may have Stage 4 cancer is one of the most traumatic things to process but to be given this indication and then to be left hanging is unconscionable and cruel. They need to know how you are dealing with this because they probably don’t realise. They deal with bad news and difficult situations day-in and day-out so I suspect they become inured to fear and desperation - let them know.
Number 3, call the Breast Cancer Now nurses on 0808 800 6000 today and download. You need to talk to people who are trained in handling these situations rather than reading the thoughts of well-meaning but ultimately impotent people like me. These are wonderful women and you’ll feel better having discussed your situation with them.
Number 4 IF you get no further forward with your surgeon or his team in a timeline that is acceptable, you can always contact the Patient Action and Liason Service (PALS) at your hospital who will intercede on your behalf. This is the nuclear option so maybe best left as the final weapon in your arsenal.
Every minute feels like an hour and every hour feels like a drawn out day when you can’t think of anything else but the cancer yet have to go about your daily business as a Mum as if nothing is happening. We all get it, we’ve all been there. There is no easy way to get through it but feeling like you have a bit of control and power over the situation goes a long way so advocate for yourself as much as possible with the medics - in order to do that effectively you need to get some sleep. GP first port of call.
Hi nellyh, I had a vaginal ultrasound which should thickening at higher level, n gynecologist I had at time immediately wanted to do a biopsy. Thankfully, I got a second opinion, and had another vaginal ultrasound 3 months later, which was normal. Many factors play into results…and I was glad I got 2nd opinion.
Great job! When I’m nervous I need things out lined exactly as you did!
I was going through chemo for my breast cancer when I was contacted by the gynae team to tell me that they had found a ‘suspicious’ thickening of the womb lining. This sent my anxiety sky high and I immediately thought I must be riddled with cancer. A biopsy of the womb was done at the same time as my mastectomy which was amazing and it came back benign. Our tendency is to think the worst as this is our body’s defence mechanism, preparing for the worst eventuality as it feels under threat. I went on SSRIs to help my anxiety and sleep and they worked wonders. I also had some great counselling about how to manage severe anxiety from Macmillan. You definitely need something to get you through these anxious times. SSRIs take 4-6 weeks to kick in so you may need sleeping tablets in the meantime until they start working. I also liked Nytol sleep and calm elixir to calm me down enough to sleep at night. Sending lots of hugs and keep posting and downloading here as much as you need. xxx
First of all yes this is terrifying. I think you need to see an oncologist, or if you already have one, get a second opinion. Then I’ll tell you that the way I coped is to say to myself: “It is nothing until it is something”. This, in my experience is the way to endure months on end if uncertainty and moths of diagnostic procedures.