Hi - I’m in the UK and have been having breast pain for 8 weeks. I’m 62yo, post menopausal. It started with severe stabbing pain in my right breast (like in the centre of the breast tissue) if I wasn’t dressed. I had to manually hold my boob when getting dressed or showering, as it was excruciatingly painful not to. It was OK whilst wearing a bra. But then the pains started even when I was dressed. Saw my GP. Got referred to Breast Clinic who I finally saw at 7 weeks from onset of pain. The pain had improved and is now much milder, but still a constant pain in the same area. No lumps. No visible breast changes.
Breast Clinic did mammogram and ultrasound and said both were clear. However, in the in their letter to my GP they’ve written “There are no NEW focal lesions…” since my last mammogram in April 2024. I’m stuck on the word NEW… implying there were some focal lesions previously?? The doctor I saw at the clinic claimed breast cancer does not present with pain, but I have since read many, many experiences from ILC ladies who state that they had pain as the first symptom.
I’ve also read that ILC is often very difficult to detect in early stages using mammogram/US and MRI is better. I’m seeing my GP again next week to ask for an MRI, as I am SO worried that things are being missed. There is not enough knowledge and experience about ILC in breast clinics. If a radiologist is looking for signs of ductal cancer, they will miss the very different looking linear ILC, which is often only detected at later stages. I cannot dismiss the pain I’m having in my breast and will only be reassured that it’s not sinister by having an MRI… even if I have to pay for it privately.
But I think I need to find an oncologist (and maybe radiologist?) who is knowledgeable about ILC and what to look for on an MRI scan. Not sure which is more important? Do oncologists interpret scans themselves, or do they go by what radiologists report back? I’m wary that an MRI will only be as good as the person interpreting the results.
Sorry if I sound like a hypochondriac, but my mum died of breast cancer, my aunt (her sister) also had it, as well as my cousins, so I am extra concerned… despite the breast clinic doctor telling me that if I did have breast cancer it wouldn’t be the genetic type as my mother was over 50yo when diagnosed.
I’m taking the initial breast pain as the loud indicator that something is not right and I need to get checked out properly. The reduced pain is my body nagging me to not let this go without further investigation.
So my question to you lovely ladies is can anyone recommend an ILC-knowledgeable NHS oncologist in London? And should I seek out an ILC-knowledgeable radiologist too?
Dear @offy , always best to trust your instincts. I had breast pain for 18months with no other symptons before I found a lump which was diagnosed as IDC. Surgeon said I had probably been growing the tumour for…at least 18months.
Where are you in London @offy? I’m West London and had a very good experience at St Marks which is the modern bit of Northwick Park Hospital (NW London HA). I was originally diagnosed at Charing Cross Hospital in Hammersmith (Imperial HA). I was ductal but both Charing Cross and especially St Marks were good. I was 66 at dx. If you wanted to go private, I had an MRI with contrast at a Nuffield Hospital on Christmas Eve last (nothing to do with BC) and it cost £850.
Hi @offy , welcome to the forum. I’m sorry you are having such a worrying time . It might be worth running this past the Breast Cancer Now nurses on the helpline, they might be able to talk through your situation and help work out a way forward.
0808 800 6000
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Welcome to the forum, we are all here for you, I think if this were me I would call the breast cancer nurses on the site they are extremely knowledgeable, very kind and feel that they would point you in the right direction.
Maybe, have a few notes, scribble down and we always seem to forget the most important things.
Wishing you lots of happiness ahead, please keep us posted of how you’re getting on.
I’m in West London too! I know St Marks (go there for other things) and I went to the Breast Clinic at Charing Cross last week. It’s very unsettling doubting radiologists’ detection skills when I’ve read so much about ILC being so difficult to detect in early stages. Also how the doctor I saw at Charing Cross dismissed pain as a symptom of BC. I need to shop around for private MRI prices, but more important is to have it done where I’ll be confident the radiologist is looking for the right thing. I think with a contrast MRI, anything sinister will be pretty obvious.
Thanks. I will give them a call. I’ve been writing my notes on what I want to say to my GP next week, to backup my reasoning for getting an MRI done.
It was interesting (and surprising!) how my brain scrambled when I talked to the doctor at the Breast Clinic last week. I thought I was fine and knew what I wanted to say/ask, but when I got called in, my brain just froze. I’m normally the calm person in a crisis, and am a problem-solver by nature, so I was completely thrown by my own reaction. I won’t make that mistake again and will go to appointments fully prepared with notes in future!
I’m sorry you got fobbed off at Charing X. I actually live in the NWLondon HA area but was sent to Charing X three years ago when the NHS was mopping up after Covid. After diagnosis they referred me back to St Marks where I had exceptional care especially from the surgeon who was fantastic.
I’m not sure if you can pay for a private MRI directly or whether you have to be referred by a specialist but it’s worth asking. Whatever the methodology, you need to get this done quickly for your peace of mind. If you haven’t already been there, there is a good Maggies’s Centre at Charing X hospital where you can talk about your situation and maybe meet others who could advise you? Good luck.
No I didnt see anyone. I did look it up when it persisted but just found sites which said breast pain common and it wasnt listed as a sign to look out for in relation to breast cancer - especially with no other symptoms. Also I was caring for elderly parents. I found my lump two weeks after the second death.
I got my GP to refer me to a different Breast Clinic (St Mary’s) for a second opinion. My appointment is a little over a week away. My question is whether to accept a contrast enhanced or 3D mammogram or tomosynthesis (if offered) or should I insist on a contrast MRI? I’m not sure I will accept there’s nothing sinister going on unless a contrast MRI comes back clear… as the pain (albeit reduced) is still present. Has anyone had CEM/tomosynthesis which has missed ILC?
I had my ‘second opinion’ appointment yesterday. A complete and utter waste of time as it was with the very same doctor I saw at the other breast clinic (Charing Cross)! How is that meant to be a second opinion?!
No further imaging offered, as the doctor is sticking to her opinion that nothing concerning was visible on standard mammogram and ultrasound. She still has no explanation why I still have pain in one breast 12 weeks on. She still is of the belief that pain is never a symptom of breast cancer - despite all the online evidence I have found saying otherwise.
I’ve hit a dead end with the NHS, so I will have to self-fund a private MRI. Nuffield Health at St Barts have quoted £725* for bilateral MRI with contrast… so I’m now waiting for another GP appointment to get a referral letter, so that I can get on with it.
(* Putting info on here in case it’s useful to others.)
I had a similar pain and it really worried me, but mine turned out to be a cyst. The waiting is the worst part, but talking it through with my GP helped.
Hi - did your cyst show up on mammogram or ultrasound?
I’m still waiting to get a private MRI booked. Everything takes such a ridiculously long time! Had to wait a week to get even a telephone appointment with my GP to request the referral letter… then another week for the letter to be sent out… then the private radiology department said the letter was missing information so they’d have to write back to the GP. The waiting just goes on and on… Radiology said they’d call me when they are ready to book my appointment, but I’ve heard nothing since Monday… so expect the GP surgery still haven’t responded with the additional information requested. I’ll be chasing everyone up again tomorrow. Just needed to vent…
I have numerous cysts which were picked up after I found a lump in my 40’s, I had a mammogram & ultrasound and was told at that time I had too many to count, so when I had a lump at 58 I thought it was just another cyst but this time my 3 year screenjng mammogram picked up the cancer.
Hope you get your appointment sorted sooner rather than later.
I’ve been dealing with similar worries and found that managing anxiety really helped me sleep better and handle the waiting. Someone on here mentioned alternative options like medical cannabis, so I looked into how policy changes might affect access. This article explains it well: How Labour’s Win Could Impact Medical Cannabis Patients | Releaf UK . It’s interesting to see how things could shift and maybe open up more choices down the line.
So I finally had a private MRI which didn’t show anything sinister. (Phew!) But I am still having pain in my right breast which nobody can explain. The best my GP (and breast clinic) could offer was to take Evening Primrose Oil, Starflower Oil (neither have proven evidence to help with non hormonal breast pain) or agnus castus. AG may help with PMS (I’m post menopausal), but I’ve read “can affect hormones and might affect estrogen levels. Don’t use vitex agnus-castus if you have a hormone-sensitive condition.” As my hormone levels have not been checked, I’m not inclined to take any supplements that might make things worse.
My breast pain is still there every day. At least it isn’t as severe as it was in May. Whilst I’m somewhat reassured that nothing obvious was found on the MRI, I’m very conscious of the fact that ILC is sneaky and difficult to detect in early stages. All I can do, for now, is try not to worry and keep a very close check for any further changes to my breasts.
