About 3 weeks ago, I had my first ever mammogram. I have no visible symptoms of breast cancer but I was called back to the Breast Clinic for further mammograms (many), a physical examination and a sonar (during which there was a lot of photographs taken and hushed discussion between the consultant and resident mammographer). They identified microcalcifications. I think I was going to have a biopsy but the consultant felt that I needed 2 biopsies (one a stereo core biopsy and the other with the sonar) - both on the right breast and that it would be best to schedule the stereo core one before his one. This morning the Breast Care Nurse phoned me to (instead of making the appointment) say that they suggest an MRI scan instead. The appointment is set for next week.
Now, my initial reaction was ‘I won’t worry’ because nothing was diagnosed. I was resolved not to worry until there was a reason to worry! And today some unwelcome thoughts are entering my mind. I admit that I googled microcalcifications and MRI scans and that probably started the idea that perhaps I should be more concerned.
The reasons I am now wondering whether there might be more going on than I initially thought:
Why did they first suggest I needed 2 biopsies using 2 methods? Only 1 should have extracted the microcalcifications for further analysis. Another would surely not have been necessary?
Why do they now want to do an MRI, which is more expensive and not able to pick up microcalcifications so well?
In hindsight, they took a lot of photographs during the sonar of diferent places of my breast and the lymphnode in my armpit.
This seems to happen at lightening speed, contrary to what other people are experiencing. Why the urgency? Is it possible that they are investigating something other than the microcalcifications?
I know that nobody can offer a diagnosis until the further tests are done. This means I must play the waiting game. I guess I just wanted to share this with other people who are going through similar worries and to see if anyone else thinks I should be worried (though I also realise that it would make no sense for people to recommend that there might be something to worry about, given such scant information).
I am now contradicting myself and rambling, which is exactly what has been happening in my thoughts today.
I’m sorry to read that you are having a pretty difficult time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Thanks for the welcome, Sam. I thought about phoning the helpline, but my thoughts have been so inconsistent that I am not sure I know what to ask… I hope it will help to write it down in the forum. I read a couple of other posts of people who are more or less in the same boat as me and felt that this would be the right place to start off. I am trying to stay positive, but then doubts start. I suppose it is all normal.
ThinLizzie
Hi Thinlizzie,
Sorry to hear you are going through all of this. It isn’t much fun, but this site is a great help, the information pages and the skilled staff on the Helpline, and the other people on the forum pages.
It isn’t that unusual for the medical plans whether for investigation or treatment to change after further discussion, usually after the multidisciplinary team meeting, when everyone, radiographers, radiologists, surgeons, nurses, oncologists and all get toether to discuss the week’s cases for diagnosis and treatment.
Nothing shows everything, so in additions to mammograms and biopsies, they do ask for MRIs sometimes, which I understand help with some cases.
I can only give you my for example.
Diagnosed by mammography at routine screening, followed up by biopsy guided by ultra sound. After mastectomy, was shown to have an area of DCIS around the actual cancer, the DCIS did not show up on mammography or ultra sound.
At follow up I asked how they knew I didn’t have DCIS in the other breast, and had a one off MRI as a result, which showed no abnormailty at all and was a big reassurance to me.
Give the Helpline a ring tomorrow, they are lovely, especially when one is rambling, trust me, I have tested that!
I can’t really comment on your experiences with the different tests as I’m only recently diagnosed myself. I just want to say that the rambling thoughts and being okay one minute and terrified the next are perfectly normal.
Ring the helpline, they’ll understand the rambling thoughts (I know my Breast Care Nurse does with me!)
Hi ThinLizzie. The waiting is the worst bit, but at least they’re not hanging around with you. My advice is don’t google anything, that way madness lies as you’re already finding out. It’s best to get your information from this site and the helpline or forum, or the Macmillan site is good as well apparently.
The mri scan is unpleasant, not because it hurts but because it’s like having a pnuematic (sp?) drill going off beside your ear. Mine took nearly an hour but was worth every tortuous second because it confirmed I only had cancer in one breast (which i already knew) not both. Your team are taking no chances with you and you may find you’re one of the lucky ones.
Lavenderlassie is right, when the multi-disciplinary team meet and talk about the various cases the suggested tests / treatment can change. It doesn’t necessarily mean it’s anything sinister, just that they want to do the best for what you are presenting them with.
The waiting is the worst part. I got through the 3 weeks or so I had to wait for the initial diagnosis by thinking that “it is what it is, I just don’t know what that is yet”. Worrying isn’t going to change what already is, so try and push it away and fill your time and thoughts with pleasant things. And you know what? Even if it isn’t good news, it most certainly isn’t a death sentence either. There are lots and lots of treatments available already, with plenty more in the pipeline so they can keep you going for years. I hope you get good news.
Thanks so much, everyone, for your encouraging thoughts and for sharing your own experiences. It is so strange how I KNOW that there is nothing to worry about until it is confirmed either way, I KNOW that waiting is the hardest part and that the diagnosis could go either way… BUT then the doubts come. I guess I should remind me of what my mum always says: You can’t stop a thought flying through your mind, but you can stop if from making a nest in your head!!
Thank you in particular to Pigsytrotter for reminding me that I might still find out that I am ‘one of the lucky ones’!
Just a quick question if someone can give me their opinion, please…
I was sent a questionnaire to complete before the MRI scan on Thursday. In it they ask “Have you had any surgery under general anaesthetic?” How long ago are they referring to? I had a good number of moles removed (all benign) about 33 years ago. That was the last general anaesthetic I’ve had as far as I can remember. I had a Ceasar with epidural when my son was born 15 years ago, so I figure that doesn’t count.
They say if you answer ‘yes’ to any questions, you hv to phone the hospital! All other answers are definitely ‘no’.
Should I say yes or no?
I would phone the hospital if I were you as you have had aurgery under general anaesthetic. They’ll let you know whether or not it’s relevant how long ago it was. In some ways, it’s probably better if they know, because then they’ll be able to check if you’ve had a bad reaction to the anaesthetic.
I haven’t had an MRI scan but I’ve been asked the same question in my pre-op. I told them about an op I had as a child 50 years ago!!
Thanks, Maggiemay. I think it makes sense to phone them. I guess they will want to know all the facts and then decide for themselves which are relevant.
Every evening before I go to sleep, my thoughts wander there. When I wake up, it is the first thing on my mind. Every moment in the day that I am not busy, I find myself thinking of “it”. “It” can be the MRI and what will happen there. Or how I will cope with another week of waiting until I get the result. Or I envision the moment I am given the diagnosis, which is sometimes all clear and sometimes DCIS. How does one stop your thoughts going where you’ve banned them from going?!
I am usually such a cry baby. I believe that tears are a great expression of emotion and very healing. But I also know that they can be very upsetting to those looking on and therefore try to keep them private and limited. And yet I am glad that I have not cried about this. Except when my mum told me (for the first time after 7 years) how she felt when she heard that her cancer had returned. Not because I am worried for myself, but in sympathy for my mum. I am only now finding out how much she protected her children. And I realised again the value of a forum like this. I can share about “it” here and still protect my husband and son from my worst fears. And the fact that I can do this even before a diagnosis, is so helpful. I can share the itinerant thoughts before they have reason for existing. It is not always posting my own thoughts that helps me share mine. If I read how someone else has the same worries, I am also sharing. Thanks for your support, Breast Cancer Care!
Oh, my goodness. I do hope the waiting is indeed the worst part. My head was behaving better today with thoughts nicely coralled. And now my body is taking over… my stomach is a trecherous nervous wreck. Sigh.
Yes, the waiting is far worse than the diagnosis or the treatment. It just does your head in.
Even if your diagnosis is cancer, you won’t feel as bad as you did when you had all the uncertainty over the tests.
I kept imagining that I might be the worst cancer they had ever seen…
I phoned the hospital about the anaesthetic question and they asked about when I had it but not how I reacted to it. She seems to think it is all ok. So, all set for scan on Thursday.
I am feeling quite weepy today. No actual tears yet, but I keep welling up. I do feel a bit down. My tum is still hollow and I am finding it hard to control nibbling. I spent the last 2 years checking what I eat in order to shed the extra stone that has creeped up on me in the last decade. I don’t want to pick it all up again because I can’t keep my emotions together!
And I have not even had the scan yet! What is the next week going to be like, waiting to hear the results?
Just back from the MRI scan. It was rather noisy, but once I found a positive message that I could repeat to myself to the beat/rhythm of the machine, I was ok.
I have an appointment next Friday to get the results. Are there some guidelines that put the clinic under pressure to provide feedback within a certain time? I was told that they don’t have a slot next Friday, but they will MAKE time available for me.
How come I read sinister meanings into everything? While in “the tunnel”, I kept thinking ‘Why MRI?’ ‘I thought NHS skimps on the cost of the dye but they are using it on me.’ ‘This is costing an arm and a leg - surely they won’t do this unless there is good reason to worry?’ ‘I wonder if the microcalcifications they saw are uncertain or suspicious (assuming benign is counted out or they would not be doing further tests).’ And now, added to that ‘Why the hurry to fit the feedback in next Friday?’
I briefly saw the lovely BCN and could have asked her if she knows whether they are uncertain or suspicious, but I guess I don’t really want to know until I HAVE to know. Given the (limited) information I have at this point in time, I can still believe I have a better chance that it is not cancer than for it to be the dreaded c-word.
So another week of waiting and worrying and trying to keep the thoughts in control, dealing with the nervous stomach and the comfort eating (the latter the least wanted at the moment). At least the hubby is supportive as he normally doesn’t deal well with illness. I guess, like me, he doesn’t want to think of the possibility that this could be cancer.
Come on, girl. Pull yourself together! Chin up. March on. There is nothing to worry about until there is a reason to worry!!
PS The staff have all been lovely. From the day go - those at the mobile mammogram/screening unit, at the breast clinic and at the X-ray dept today. They all deserve a great big thank you for the way they are treating me. So kind and gentle and reassuring!
So sorry you are having to go through this. My mantra was ‘this too shall pass’ and it did! As you know the waiting IS the worst part. Once I was told what I had and when I was getting my mastectomy it strangely became easier to deal with. And don’t forget it could well be good news for you. In my thoughts.
Ann
Thanks, Anne. I am mostly ok. Just a bit wobbly when I think too much about it.
I feel so undeserving. I do think that I would surely not be worth all the time, cost, expertise and effort that is going into diagnosing something that is only possibly and not definitely cancerous… And I am surely not deserving of all the kind thoughts and support from you lovely ladies who don’t have the luxuy of doubt anymore. I say ‘luxury of doubt’ as it feels such a blessing to me that I can be reassured that it could be nothing… I am scared senseless when I allow my thoughts to wander onto the path that you have walk. Yet you are all so wonderfully kind to me. I cannot tell you how much it means to me and how much it is helping me to stay sane.
Many years ago (about 20 or so) a colleague I was quite close to developed bc. She took it on so bravely and was so positive throughout the treatment. I remember saying to a mutual friend that Ria is very brave and that I certainly would not be able to deal with the situation so well if it were me. Her answer stuck with me: “You don’t know how you will deal with a situation unless you find yourself in those very same circumstances.” I do hope when (if!) push comes to shove, I’ll find an inner strength which seems very hidden at the moment!
Distraction, diversion, drink! Well, not too much of the last. You have looked after yourself to the best of your ability by having the MRI, you cannot do any more, and you “just” have to get through the next week of waiting.
It costs to make an accurate diagnosis and you are worth it, whatever the result.
Lavender
xx
Haha, Lavender. I don’t drink much anymore, but tonight I asked the hubby to share a bottle of wine. Two glasses and I am on my ear. Feeling pretty chilled right now… Thanks so much for your encouraging words. Xx
