Theresa, I really think you should push for genetic testing, demand it if need be. I think it is ridiculous that you have not had the option of doing it.
I first went along to the breast clinic when i was 38 as i developed a strange dark patch on my right breast - and explained then about the family history... that turned out to be nothing after ultrasound and mammogram...
Just to explain the family history - my maternal grandmother died of bc when she was 45, her three sisters also died of bc in their mid to late 40's... (this was all in 1940's...) my mum's sister was first diagnosed when she was 48... she had a masectomy and was fine for 10 years but then it came back and she died... whilst i was growing up my mum was forever hearing of cousins back home in northern ireland who had been diagnosed (daughters of my gran's 3 sisters...) despite all this they just didn't take it seriously... they said the relatives were not "close enough" as my mum and sister were okay...
It occured to me really recently that the unusual thing about my mum and sister was they both had early total hysterectomys... my cancer was 8/8 er+... so i wonder if that is the reason they were okay...
When i went for that first clinic appointment i was asked if anyone had ovarian cancer... but they didn't ask any other questions about other cancers etc etc... (my mum's other sister died of a heart attack but her post mortum showed she had stomach cancer, later her daughter died of meningitus but her post mortum showed stomach cancer as well...:( )
I was put on annual mammograms after that first appointment and they explained about other changes to look out for... which is why i knew last May when i suddenly developed IBC... i had a mammogram in the early May which didn't show anything as IBC doesn't show on mammograms even though the tumour was 5cm...:( (It forms as sheets rather than a lump...)
I will ask again what is happening about genetic testing as they said when i had my masectomy that they still don't think i have a strong family history but would refer me if i insisted... (rolleyes) but i havn't heard anything (they said it might take several months...)
Theresa - I cannot believe they didn't offer you a bilateral mastectomy if there's a strong family history of bc?! That's outrageous! Have you ever had genetic testing? If I were you and you need the milk ducts removing, I would definitely push for a mastectomy. Also ask about being genetically tested, as some faulty genes also increase your risk of ovarian cancer, so you might want to consider an oompherectomy if it is genetic. It's definitely something I'll be doing if it proves I have the faulty gene. If they don't take it seriously, I'd ask to be referred to someone who will. This is your life they're playing with! Good luck with MRI, let us know how it goes.
Claire - let us know when you finally get a date for your scan, and good luck with it.
Sorry for butting in, Ive got one tomorrow - tried it a few months ago, travelled 3 hours for it and couldnt find a vien, after hour of stabbing sent me away, try again tomorrow with anethetist!
Good luck x
No I've not got my date yet, they are going to see if I can be sedated by the Breast Surgeon, I know you may think I am mad but I am very claustrophobic, even though I know it is important that I have this MRI I just can't do it without any help.
I shall let you know when I hear anything. I am hoping to hear this week though...
Theresa - good luck for tomorrow.
Thinking of you all.
I'm going for an MRI tomorrow... I've recently started having pains in my "good" breast (I was diagnosed with IBC in the other breast last May and had chemo, mastectomy and rads...) hoping it just turns out to be Duct Ectasia which is a benign condition... but even if it is they may want to operate to remove the milk ducts...
All last year I wanted to have a bilaterial masectomy (had chemo first) but they wouldn't let me... Now wondering if they need to operate to remove the milk ducts should I really press and see if they will do a masectomy... I come from a family with a really bad history of breast cancer - but they never seem to have taken it that seriously... 😞
Although the MRI was clear, I've still decided to go for a bilateral mastectomy. It's looking highly likely my bc is genetic, as I just found out my maternal grandmother died of ovarian cancer (and my mum died of bc at 41). Therefore, if it is inherited, there's a high risk of recurrence, so I'd rather have the preventative surgery now and not spend the rest of my days worrying about it coming back. I'm scheduled for surgery on 16th July (going on holiday to AMerica for 3 weeks before having it done!).
Claire - haven't heard from you in a while; surely you've had your scan by now..? Let us know how you got on.
Hi both, just thought I'd catch up!
Caro - so pleased you got through the MRI, and the results were good. Hope everything goes smoothly from now on, and glad OH could check up and reassure you - and why not! Not many perks in the NHS!
Claire - how's it going? Have you had MRI yet, or have you a date?
When are you due to go in for your lumpectomy? I hope everything goes okay and so what if your hubby looked them up, I am sure I would have done the same if I had the authority to do so. I am really pleased the results were good.
you take care and I hope everything will go smoothly for you. It is coming up to my 3 years since diagnosis at the end of this month. At the time you never think of 6 months ahead, I just took one step at a time and jumped every obstacle put in front of me. This site is fantastic for support and I have met some really nice people on here. I like it as you can be as honest as you like.
You take care and I shall let you know how it goes. Did I mention I was going to try hypnotherapy?
Oh Claire, I'm really sorry you feel freaked out. I know there's not much room inside the scanner, but it really isn't that bad once you're in there (as long as you make sure you're comfortable beforehand!). Believe me, I am the world's biggest whimp and really suffer from claustrophobia, so it couldn't have been that bad! Get some tablets from your GP that'll zonk you out a bit.
As for my MRI results; I thought I'd have to wait until Friday to get them back. BUT, my husband got home yesterday and admitted he looked my results up at work (he's a consultant neurosurgeon); very naughty of him, but pleased to report that MRI shows no further lumps lurking in either breast, and no signs of axillary lymphadenopathy! Very pleased to know I'll only need a lumpectomy but won't breath easy until I know there's definitely no lymph node involvement. One more step forward...
Hang in there Claire; it's only 30 minutes and then it's all over!
Let me know how you get on.
I have been to the department this morning and completely freaked out. Poor man who showed me the machine all set up, I couldn't stop crying and he didn't know what to do. the team were lovely though and I feel better seeing it but there not much room for movement at all. I am a rather big girl you see and that has its restrictions. I am hoping to receive some hypnotherapy in time and I will be asking for some help from my GP. I shall let you know how I get on. Caro - le tme know how things go for you with your results?
Take care all of you.
Love and best wishes
I'm not sure but I think they did my whole body(?). I seem to recall I went in feet first, but then they actually started scanning at the head end and finished at my feet.
It's all a bit blurry now since it was a couple of years ago and I might be getting confused with the nuclear one.
Two things though:
- You really are best taking foam earplugs because wearing headphones when you're laying on one ear hurts (and the thing doesn't stay on, and it's loud)
- They really could use bigger booby holes in those things...
I also got some drugs from my GP (Diazapam, 2mg) but he couldn't really advise how many I'd need to take. So, when I woke up in the morning I took 2 pills, after 45 mins no effect so I took another pill, STILL no effect! So, I thought bugger it, as I didn't really like the prospect of being drugged up anyway. So I had my scan without the help of drugs, and I'm so glad I did as I feel I'm on my way to conquering another fear or two! If you think you can do it drug-free, try and give it a go; it really wasn't claustrophobic at all. However, if you really do want drugs to help, just make sure you take enough!! I think realistically I should have taken double the dose I did take.
Good luck with it! Will keep you posted. xx
I am so pleased you managed to do it, well done you !!!! I am at the department tomorrow to see it all set up and so they can talk me through what will happen. I will more than likely get the appointment date tomorrow so I can plan my visit to GP for some medication. I feel a a litte better after reading your post, I will keep you updated and let you know how it goes tomorrow.
congrats to you again, I hope the results are good, please let me know.
Take care and lots of love
Well I have just literally got back from having my dreaded MRI and, weirdly enough, it just was not what I was expecting! I didn't feel an ounce of claustrophobia at all!! What I wasn't expecting was how uncomfortable I would be. I had my left arm above my head and my right arm down by my side with my head turned to the left (venflon in my right arm), which felt fairly comfortable at the beginning. However, about a quarter of the way through my left arm was going numb with pins and needles, and I wasn't able to move it much so I just had to grin and bear it for the duration. Perhaps this took my mind off the claustrophobia aspect?! When they injected the dye half way through it felt very weird; like a warmth travelling around my whole body. Anyway, I'm so glad it's over, and not nearly as bad as I was anticipating. Waiting for the results is going to be a million times harder!
Do you have an appointment for yours yet? Try not to worry, it really isn't a big deal. Let me know how you get on. Good luck!
Hi Caro-I had an MRI yesterday on my chest and neck and had to have the frame over my head with my chin supported so I couldn't move.I'm not usually claustrophobic but that was awful!I had something pressing on my chest and felt suffocated-I was very close to pressing the buzzer but I persevered with it.Never again!
Got me wondering now! Sure I went in feet first!!!
One thing that I found much easier than my neck scan, was the keeping still. When I had my neck done, they said "try not to swallow" - yeah, right! YOU try not to swallow, mate, for about 20 minutes! With the way they sort of suspend your breasts (they kind of used the material of the gown I was wearing - hard to explain)in the holes in the table, they are kept as still as possible without you having to think about it too much.
On the claustrophobia front, it does feel as if just the chest area is "in the machine" - I really hope it goes OK for both of you. When are your appts?
Hi again Claire
I phoned my radiology department and it sounds similar to the scan Lizzie had - lying on my front with arms above my head, BUT I will be going in head first. It's funny how that makes a difference isn't it?! I also have had a brain scan before, which was awful, as I had to have this brace thing placed over my head and face; I felt a bit like Hannibal Lecter! I kept my eyes closed the whole time and listened to music and tried to pretend I was lying on a beach (yeah, right!). Fortunately, that scan only lasted about 15 minutes, which was lucky because I don't think I could have stood it any longer! Yesterday I crawled under my desk on my tummy and tried to imagine being in the scanner, but it wasn't quite the same, lol!! Anyway, I'll let you know how it goes.
I had a breast MRI last July, and I am th most claustrophobic person you could imagine, I even hate it if someone is stood in a doorway to a room blocking my escape route!
I went in head first but had my arms above me on a pillow, but because I was laying on my front I was able to see out of the end of the machine, having had an MRI of my brain in the past where I had to lay on my back, I can categorically state that being on your front is so much easier and less scary than being on your back, on your back you can only look up at the top of the machine which is quite close to your face, but on your front you can only see out of the end of the machine so it doesnt feel so bad, so whichever way you go in, feet or head first, your head will always be near an opening, they played some music through headphones and I kept reminding myself that it it would only take 4 or 5 songs until it was over, best of luck
I have just received a phone call from the radiology department and I will be going in head first...I am gutted, i think I woul dhave been better going in feet first. They are going to call me back with a time to go and visit the scanner (I know that sounds mad, its as if we are going to be friends). I really hope I can do this.
I will keep you updated.
Yes, my arms were definately not strapped by my sides, but just resting on pillows - really hope it goes OK for you both,
The thought of my arms being strapped is a little off putting, I think what I will do, when the appointment comes through (should be any day now) I will call the Radiology Department and speak to someone there and ask if they can talk me through what is going to happen. It is a worry that mammograms don't show everything up which is why I am having the MRI just to make sure.
Caro111 - Have you spoken to the Department asking what they are going to do? It might be a good idea as I have had mixed replies as you can see, some strap down the arms and other don't. Please call them and put your mind at rest, thats what I'll be doing. Clautrophobia is awful, I never realised how bad I was until last year when I had to have an MRI on the hip/pelvis area, I couldn't go in and was hysterical. I was lucky enough to have an open MRI the following month. I never used to be like this but it is since my treatment. I will definitely be visitng the GP asking for sedation, I need all the help I can get.
Let me know how it goes and thanks for your replies.
I'm also claustrophobic and have to have an MRI on Monday. I feel panicked every time I think about it, especially having read the last post about having your arms strapped down?! I'm more worried than ever now!! I did go to the GP yesterday and he prescribed me some Diazapam to take before, which apparently makes you feel drowsy, but I'm worried it won't be enough! Claustrophobia's so stupid and irrational isn't it: I mean, what the heck can happen?! I really wish I could get over it. When's your MRI? Good luck and let me know how it goes.
I have had several breast mri's as mammograms didn't show up anything despite there being a palpable mass. I was also face down on the table with my breasts in cups under the table which they tighten up to stop you moving around. My arms were then strapped to my side and i went in head first, although i couldn't see anything as i was face down all the time. I also had the contrast dye half way through. I am not claustrophobic but i did find the fact my arms were strapped to my side quite difficult. I have a friend who got sedation for her mri and found it much more manageable.
Best of luck, any more questions ask away.
Thanks for that, it makes me feel a little better knowing my feet go in first...strange I know but that way I feel I have more control. I will let you know, hopefully everything will be okay. They are doing this as an extra precaution as I have a very strong family history yet I have no gene.
Thanks again and I will let you know how I get on.
Claire, having had neck, low back and 2 breast MRIs (I know - I'm greedy!!)I found the breast ones the least claustraphobic.
You lie face down, with arms resting on pillows above your head. Your breasts sort of suspended in two holes (well odd!!), and your head turned to the best side for you. You move in feet first.
They put a drip in your arm so they can give you an injection of contrast medium (sort of colourless dye that shows up on the scan)This happens halfway through the scan time, you don't notice anything much, maybe a slight cold feeling.
The staff really go out of their way to make you feel as comfy as possible, as you know it IS noisy!
Hope it goes OK, Claire, let me know if you have any more questions, I try and answer!
I'm in need of a little help, has anyone ever had a Breast MRI? For those of you who know me, you will know that I suffer from claustrophobia and the last time I had an MRI (Pelvis) it had to be open. I am hoping to have a sedative but I wondered if anyone had had a Breast MRI performed. If so, did you go in head first or feet first? I am waiting on the appointment coming through but I am started to try and gear myself up for it. Can anyone help?
Take care all of you.