I feel I daren’t ask what a hemagioma is. I am afraid medical terminology, tests of different organs etc fill me with anxiety hence I only go to see docs if I have a symptom. There’s a whole world out there of people getting good money for worrying all of us.
I found out I had a recurrence of breast cancer only by chance recently but I sincerely believe it will make no difference to my long term outcome. Everyone has abnormalities in tests which will get picked up if you keep testing.
Mammograms pick up a lot of malignancies which won’t kill people. If you look on the NHS website it says three yearly mammograms for women aged from 51 to 70 lead to over treatment for 4.300 people a year in the UK, 1,000 malignancies that are potentially lethal, and that means a lot of people are having treatment for no good reason. Unfortunately they can’t predict who will go on to die from the 5,300 who genuinely is benefitting.
My first cancer was at age 47. My recurrence was found by me without mammograms as I didn’t go for them. I am now 66. It’s been in my body 19 years as it’s the same cancer I had in 2003. It hasn’t spread to my lymph nodes. I get the same treatment now as I would have done if It had been detected earlier. The treatment is mastectomy as apparently you can’t have another lumpectomy once you have had one. 19 years test free and mammogram free hurrah, even if I do now have two tumours. And I have avoided surgery for 19 years too. Tests lead to other tests, they are going to pick up a lot more things wrong with me now as I am now not the incredibly healthy person I was then (I’m joking I had cancer).
I read that the low grade breast cancer I had takes roughly 10 years to reach 1 cm - the size of my original tumour. So that makes sense now I have two tumours roughly 2 cm each. So there should be plenty of time to find any more I get. It’s a weird disease. I think genetic testing may be the future. I am involved in the Generations study where women are followed through for years. I think this is the way to go. Like Long Lost Family we will find out astonishing things soon.
Thanks for your reply and welcome. Much appreciated. Sorry to find you on here too!
I think because my overage staging was 1 and I didn’t have any lymph or vascular involvement, strongly oestrogen + buy HER2 - they’re saying MRI not needed. My surgeon only took one sentinel node out.
My anxiety stems from the fact that I’ve had numerous mammograms over the last 5 years and I’ve been recalled every time! They had another look at me and then sent me on my merry way. All clear apparently only 2 years ago. What were they seeing to justify the recalls? They never told me. Now, it’s been suggested I may have an interval cancer that has popped up between screening. Personally I think it’s more likely that the calcifications were there 2 years ago but we’re missed. I have dense breasts. They even told me they’d had new and more accurate scanners since then which didn’t reassure me!
I was due lumpectomy originally for IDC, then 2 days before my op they phone me up saying they’d found another area. I couldn’t believe it and after all those mammograms too! Anyhow I went on to have the mastectomy but it’s all left me with severe anxiety. Apparently I should be so grateful that I’m low grade and stage, but I’m worried they’ve missed things. I wasn’t even told that LCIS was found post op and I found out when I asked for a copy of the report from the pathologist.
After LCIS was found I felt certain they would offer me an MRI but nope!
Not sure what to do or whether to make a complaint. I’m just so worried.
Hi @Frances55 - first of all welcome to this forum, I hope you are recovering well from your operation.
I’m also interested to hear any more answers about people being offered MRIs. I had one at diagnosis because I had lymph node involvement, but haven’t been offered one since. I’ll make a note to ask my consultant at my next check, or my GP and would be interested if you find out any more.
Very best wishes, Evie xx
I’m new to the forum. I’m 13 weeks post mastectomy. Diagnosed grade 1 IDC and 0 Grade DCIS. LCIS was also found in the post op histology. I’ve had no further treatment apart from Tamoxifen. I really wanted to have an MRI but I’ve never had one. My nurse said I won’t get one even though I’ve asked.
It seems that scans are standard for some people. Why is this? Does it depend on the staging? My mammogram was clear 2 years ago and I’m convinced my calcifications were missed as I have dense breasts. I’m full of anxiety about whether everything is gone. My surgeon left quite a lot of skin. How can I be sure there isn’t any breast tissue still in there and potentially calcifications. I didn’t have a lump? In fact how can they even be sure unless I have a scan post mastectomy?
I told my nurse I’m thinking of paying for a private scan but she said why do that when it’s not needed! I’d still like to get an MRI for peace of mind. I’m also concerned about lobular in my remaining breast.
Any thoughts would be welcome. Thanks.
Hi SP87, yes, fantastic news, congratulations! And thanks again for helping me when you were in such a stressful situation yourself. Big 🤗
Hi SP87, that's great news, thanks for letting us know, it must be a huge relief for you 🤗
Catcusflower I just wanted to come on and say thank you. My amazing hospital managed to get me in for a CT and it was a hemangioma. Thanks so much for your kind words in my time of need xxx
Thank you very much for your message and explanation. I'm going to keep trying to get more info. about why the tumours were missed. And if I'm not offered an MRI and an adequate reason for this, I will seriously consider going privately, I hadn't consifered that yet. All the best to you xxx
Hi Yvette. You are right MRIs do not use radiation so I don't think you need to worry about the radiation.
I have annual breast MRIs because I had dense breast tissue and was only 29 when diagnosed. I do know this seems to be a problem across the country where some people get an MRI and some don't. It could definitely be worth flagging up, especially as there is lobular in there. I do know some other people who fund their own MRI privately. Of course, this isn't an option for everyone and you shouldn't have to but it may be worth considering if it will give you some peace of mind xxx
I am keeping everything crossed for you that it will be ok 🤞🤞🤞 Giving you a very big hug 🤗 🌟
I feel bad about straying from the subject, but I have a question for all of you: it sounds like all of you have been offered MRIs as follow-ups, is that the norm?
I have had my lumpectomy, now waiting for radiotherapy and have been sent an appt. for a mammogram in May 2023. I asked my BC nurse about future MRIs, but she said I wouldn't be getting any "as I would already receive a lot of radiation from radiotherapy". I don't think MRI uses radiation though?
I asked because my BC was missed on a mammogram in Dec. 2022 and then 'underestimated' when I had a contrast mammogram & ultrasound in Feb. (it wasn't 1 cm, but nearly 3 cm). There is a bit of DCIS, but the invasive growth is the largest and is a combination of non-specific and lobular: I understand lobular is easily missed on mammograms and MRIs are best to pick up lobular cancer.
Has anyone had to insist on an MRI?
Many thanks for any reactions ❤
Thank you so much for your reply. I really really appreciate it. Can I ask was this your first ever MRI or an annual one? I think because it's my fifth.. I am worried this is a new thing! But hoping something non sinister could develop at any time! Xxx
Hi SP87, I was in a similar position last year as a 'large mass' was seen on my liver during my breast MRI. I was sent for a CT scan so that they could get a better look at it and they identified that this was a haemangioma, which I was told is just a harmless 'clump' of blood vessels and is apparently quite common, particularly in women. It was obviously scary at the time though because the first thing I thought was that the cancer had spread. Easier said than done I know, but try not to assume the worst, and I hope that you get your CT scan soon and have a positive outcome x
Thank you for your lovely reply. It means so much. I have had a little Google and it says the liver is the worst place for picking up lesions as so many little things can pop up innocently. I am truly praying for this. It is just so terrifying! Xxx
I’m not an advocate of Dr Google but if you Google this you will find non cancerous lesions of the liver are very common in general population - fingers crossed 🤞🤞🤞
It’s horrible when there’s something different on these scans but it doesn’t mean that the changes relate to secondary breast cancer , scans pick up all sorts of other things too . Horrible waiting to find out ☹️
I had my annual breast MRI (my 5 year one) this week and they called me last night to say they have seen something on my liver that wasn't there last year. So I know have to go in for a CT scan! I am absolutely terrified. Has anybody experienced anything similar and it not be the worst case scenario?
I have vomited all night in-between crying and shaking xxx