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Now told need MRI scan before told treatments

23 REPLIES 23
Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Thanks Chris. Sorry for delay, only just seen this reply..... I'm not getting notifications lately of posts!?....  Ha ha! I don't know who'd be more shocked if I was pregnant!? I'm 49!...... Not unheard of I know, come to think of it I'd go through pregnancy (which I loved) and labour over and over in a heartbeat. Than this! 

Been a long evening and I've come to bed. You've been a great help and I thank you for being there and replying xxx check in with you tomorrow xx night night xx sleep well 

Caffy
Member

Re: Now told need MRI scan before told treatments

Don't worry about the questions, I remember being hungry for information (and then other days not wanting to know at all!) the hormone treatment was to shrink the tumour before surgery, but they couldn't guarantee 100% it would work although  they did say I would be closely monitored. In the end, they confirmed that surgery first would be their recommended route so that's what I went for. My surgeon thought she could save my breast by doing a therapeutic mammoplasty, which is a type of breast reduction. It was all to do with the size of my tumour (medium) and the size of my breast (34b - not v big!). I ended up with a scar running down from my nipple but I never did find out how much smaller it was as the swelling didn't have a chance to reduce. I had been told I could have my other breast reduced to match at a later stage if I wanted. However the results of this op showed that there were other 'stray cells' around the tumour and they could not be sure they had all been removed so a mastectomy was recommended. I had it exactly 4 weeks after the first op.it is very strange at first to look down and be 'flat' there, but to be honest I soon got used to it. The good thing about not having immediate reconstruction is that the op is much less complicated and the healing/recovery time therefore much less.  So we are at opposite ends of the country!! Glad you got your MRI sorted, hopefully the week will fly by. I remember seeing the question about menstrual cycle on my letter but they never asked me - maybe it's to check you're not pregnant?? But when it's urgent they obviously don't worry. Hope your evening is ok and you mange to distract yourself. Xx

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Thanks for the info Chris. I fully understand the worry you have about being left high and dry once treatment finalised..... I'm feeling in limbo at moment. I get this lump in my throat which feels like food stuck when swallow and I know it's nerves!.....

i rang hospital at 3:50 to be told couldn't get answer till after 5 when senior receptionist came in!..... Because app they need my menstrual dates. I gave them, then told it may not now be next week as it's something to do with cycle between 6-16 days?...... Argh!! Was confused and angry as they'd sent me an apt with 24 hr notice without thus information!?! Anyway call came 5:20 full of apologies, that next Thursday ok and as I'm 'urgent' period cycle doesn't matter! 

What was your reason for turning down hormone treatment Chris? And you say first op then mastectomy? What was first op? Please tell me if I'm asking too many questions from you? 

Im in north Scotland by the way xxx 

Caffy
Member

Re: Now told need MRI scan before told treatments

Hi again Tina, how are you today? Did you get your scan rearranged? The long delay between my initial diagnosis and surgery was because I had to wait 2 weeks for my MRI then again for the results, them another 2 weeks waiting to see the oncologist to discuss hormone treatment, which I decided against in the end. The waiting around is the hardest part. I am worrying now as I see my oncologist tomorrow when I will find out what future treatment I need. Although I am hoping it is just going to be tamoxifen tablets for 5 or 10 years I am quite apprehensive that once all these appointments are over I'm just left to get over it and get on with my life. The regular meetings with the specialists (who have all been lovely) are  like a kind of safety net, that I think is about to be pulled from under me. This really is a cruel and horrible thing. Anyway, enough moaning from me, I'm sorry I'm meant to be helping you not worrying you . Love and hugs. Chris xx

Caffy
Member

Re: Now told need MRI scan before told treatments

Sorry, had to rush off earlier, I will fill in more details on my timings tomorrow. Don't worry about waiting another week, in the grand scheme of things it is not long. i don't suppose you have a friend you could take to the scan tomorrow? It's not too bad and they won't actually tell you anything there and then. It's a bit short notice though. Where abouts in the country are you? I'm in Cornwall. Hope you get some sleep. Cx

Caffy
Member

Re: Now told need MRI scan before told treatments

Glad you are feeling a bit better. What a shame they didn't ring you about the MRI rather than write! I am 48, I found the lump in 9th may, got positive diagnosis on 4th June, had first op 24th July and mastectomy 20th August. It's been a long ride, though gone v quickly. More later. Cx

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Hi, Chris...... I can't thank you enough for your reassuring words! Feeling less fragile tonight. Annoyed/frustrated though as I'd been waiting for the MRI scan apt and came home to a letter after work at 5 to say it was tomorrow!!!! I rang to say was no good as my hubby not able to get back in time..... Told I could catch the bus (I drive but point was I don't want to go on my own!:( am I being silly?!) it takes hour and half drive on a good run by car to hospital so longer on bus! They only do these scans on Thursday Friday so I've begged for next Thursday!! Got to ring tomorrow see if possible?! Worried that every day that passes this thing is growing!? 

My breasts are not small and from what I've read this affects treatments offered?!...... Petrified of chemo, let alone surgery. Wow on your recovery so far!? 👍🏼 How are you coping with not having anything there? 

Im getting more pain now since the biopsy and freaking myself out thinking they've made things worse or aggravated things!? Can I ask how old you are Chris? And how long did you have to wait between diagnosis, treatment plan and treatment op? TIA xxx love and hugs to you too xx Tina 

Caffy
Member

Re: Now told need MRI scan before told treatments

Hi again Tandy, I hope you are feeling a bit better today. I promise you it does get easier. I don't mind telling you about my treatment, I gave the edited version last night! First of all I explored hormone treatment before surgery which can shrink the tumour thus needing less surgery. I met with the oncologist but in the end decided I couldn't live for 6 months or so with this alien tumour inside me, not knowing for sure if it was shrinking or growing. They did stress I would be very closely monitored but 100% success was not guaranteed. So I then went for breast conserving surgery. Because of the smallish size of my boobs and the position of the tumour - inside lower quadrant - I couldn't have a lumpectomy I had to have a mammoplasty. All went well, 1 night in hospital and recovered very quickly. At the same time they did a sentinel node biopsy which, thank heavens, was clear. However the surgery did not have 'clear margins' apparently with lobular there are sometimes small stray cells around the tumour, so I had to return for a mastectomy. I was offered reconstruction but I would have had to wait longer and I was also warned that if I needed radiotherapy it can damage your new boob so turned it down and will reconsider in the future. They stressed I can look for recon at any time. I have recovered well once again, tomorrow it will be 4 weeks since my surgery and I'm feeling absolutely fine. I think I may have said earlier I go to see the oncologist on Friday to find out if I do need any further treatment but my surgeon was hopeful that I may not other than tamoxifen.  I hope this gives you an indication of what can happen. I have been unlucky I think, but none the less it has not been horrendous and I am now coming out the other side a stronger and more motivated person. Please feel free to ask any further questions. Sending you strength and hugs. Chris xx

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Oh Ann I can't thank you and the others who've been there for me so far...... Especially tonight. I'll maybe give the phone line a go. As every day ticks by it seems to be getting harder to bare. I'm ringing BC nurse tomorrow to see if my apt date is any nearer so I have a day to focus on getting to. Xxx I'll let you know 

Weeannie1
Member

Re: Now told need MRI scan before told treatments

Remember Tandy that you're never alone. The ladies on this site are amazing at keeping your pecker up, and the phone line is invaluable. I cried buckets to the lovely volunteers at the end of the BCC helpline, so perhaps you could try having a chat to one of them? They were absolutely fab at making me feel better and always lifted my mood.

 

When they told me I had cancer I came home and bawled my eyes out because of my hair. I never actually thought about dying, just losing my hair. It turned out that I was borderline for chemo and chose to have it (sounds mad, I know) because I felt that if my cancer did come back I would truly know that I'd done all I could to beat it. My cancer was a whopping 37mm, so considerably larger than yours, so you may well not need to have chemo at all. And although I never want to lose my hair again, I loved my wigs!! Loads of people asked me where I got my hair done, so they had no clue that I was wearing a wig. My hair grew back very quickly and has come back really thick and strong. 

 

Hope you feel better as the days go on and remember that you'll make loads of new friends on this site who are going through the apsame as you at the same time. Big hugs, Ann x x 

evs_71
Member

Re: Now told need MRI scan before told treatments

I had an MRI scan before my treatment started, and after again 2 chemos. They can use it to monitor the effect of the chemo, so it's a very useful test to have done. Unfortunately for me, my tumour didn't respond so I had earlier surgery than planned. Mastectomy with temporary expander implant (with a view to permanant recon once all active treatment complete). The surgery was fine, a bit sore but doable with painkillers. Good Luck x

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Oh Caffy, thank you so much for your reply!........ Can I ask,( will understand if you prefer not to say, ) did you gave to have full mastectomy? Were you offered or did you get reconstruction? I'm sooooo worried about this dimpling and creasing fearing there's more in deep. 

And I will keep in touch on here, feel at the moment it's only place I can be truthful of how I'm feeling! 

Caffy
Member

Re: Now told need MRI scan before told treatments

Tandy, I wish I could give you a hug and tell you everything will be alright, but I can't. What I can do though is tell you I was in exactly your position just a few weeks ago. I have (had) lobular cancer and it was 27mm. I had to have an MRI scan which delayed surgery. I was petrified of the surgery, I've never been in hospital before but hand on heart, it was OK. I hate needles but coped fine with all that happened and you really know nothing about the op as you are fast asleep. I didn't suffer had any pain either. Recovery has been fairly easy too and I now feel quite 'normal' again. I will find out this week if I need any further treatment but my surgeon has said it might just be hormone tablets eg tamoxifen, ie no chemo or radio. Sorry for rambling but I just want to show that it is all very 'doable' you will be fine. I kept telling myself I would rather lose a breast than an arm or a leg or an eye etc etc etc. best of luck. Xx

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Thank you everyone, trying to type through tears so excuse any spelling mistakes!......

my husband is being so strong, sensible and reliable. Military ways I suppose, getting the job done in stages?:)........ As you may know from previous posts he's not long been posted 4 hours away (which going on past experiences it could be worse!) This time last year was worried about him being in Afghanistan for 5 months and we thought this year was going to great!....... Then BAM! Told of posting in March, he moved jobs mid July then this towards end of July!...... 

I know my kids are not far away either .......... I'm just feeling very sorry for myself tonight and fearing the worst. 

I do put on a brave face during the day, friends jeep saying 'how Well I'm coping' and how strong a woman I am........ Little do they know how much I cry when I'm home, to the point of urging. I do not want to lose it in work, it's keeping me 'normal' even just for the day. 

Xxxx thank guys for reading and supporting 

Jobey68
Member

Re: Now told need MRI scan before told treatments

Hi Tandy, I just wanted to say I know just how you are feeling and how utterly traumatic it is when you are waiting on results, this truly is the worst part but things do get easier, honestly they do! Please try and take things a step at a time and not to look too far ahead, it's far too much to try and process the whole picture so I found dealing with one bit at a time helped me cope, lean on your husband and good friends and family, let them take up the slack, sit and cry all day if you feel the need and don't feel you have to put on a brave face. Both my sons have been to uni and I cried for days when they left, that in its self is hard enough and coupled with all this it's no wonder you feel so bad! They eventually come home and never forget about you, my eldest got married last week and is back living at home while they save for a house so we are really enjoying having a busy house hold again, they have been a godsend through all this and have helped keep me focused, keep talking to us love, there is always Somehere to listen xxx Jo 

Cs66
Member

Re: Now told need MRI scan before told treatments

I'm with you there Tandy. So hard not to think the worst and the prospect of the treatment is just so scary. We should take heart from the amazing brave and positive people on here who have got through it and come out the other side but it's not easy especially when you are having to put on a brave face to others. Xxxxxx

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Hi Ann and Cs........ Thank you so much for your words of support. Yes, I am thinking every day that passes and every  discomfort, pull or twinge I get its getting worse or spreading!..... Yes, in the grand scheme of things hair loss is a silly thing to fret about!? But I'm a hair twiggler and playing with it helps when I'm stressed or tired!..... Love my hair and I can't bare the thought of losing it! Feeling sick with worry about losing my breast, chemo possibility and my life changing forever!......  One day I'm thinking, get this thing sorted, get it out and get treatment get back to normal! Then I go into tearful panic mode of worrying will I ever be rid, will it spread? Will this be it!?!........ 

On a very down evening tonight guys........... Can't stop crying.

Cs66
Member

Re: Now told need MRI scan before told treatments

Hi there, I have read your thread with interest as I think that I am heading down the same route as you. I had my appointment at breast clinic and after 2 lots of mammograms ultrasound and several biopsies I saw the consultant who said I will needan MRI too. I am thinking lobular although still clinging on to the vague hope it will be benign! I totally agree that losing my hair is the thing I dread most. Sounds ridiculous in the grand scheme of things but I feel as if all my femininity will be stripped away. Just wanted to let you know I understand how you feel. Lots of love xxxxx

Weeannie1
Member

Re: Now told need MRI scan before told treatments

Hi Tandy,

 

Hows you today? Hope you're feeling a little better than yesterday. I felt like it took forever to be given a treatment plan after diagnosis. The fact that we lobulars need MRI scans means that we wait a little longer than ductal cancer ladies for treatment to start. I worried daily that the longer the cancer was inside me, the more chance there was of it spreading and it's perfectly normal to feel like that. But I'm lucky in the sense that I work in the NHS and was able to speak to someone who worked in the Pathology lab. They pointed out that the cancer hadn't grown over night and that it had taken considerable time for it to reach the stage it had, so the chances of it spreading in the time it takes for treatment to start were tiny. So try not to worry (and I know how difficult it is) and although you feel you're not coping at the moment, you will when the time comes. After diagnosis, I was a bit of a wreck for the first couple of weeks but after being given my treatment plan, I felt more in control and found it easier to think clearly. Please remember that you really are in good hands and your team will have your best interest at heart. Take care and sending big hugs, Ann x x 

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

thanks Ann for your reply. So, BC nurse rang Friday, all she could tell me is its a grade 2 Lobular cancer, about 27mm in size. Need MRI to see if/what's going on deeper in breast, what's causing the dimple/dragging? She couldn't answer what treatment would be first. Another wait for appointment, may not be till wk Thursday, 25th. Then a week wait for results and another appointment wait for meeting team. 

Not feeling good at the moment. Emotions high, hubby moving my daughter to uni today, both flown nest now and I'm lost! I've been 'jolly self' in work all day, but as soon as I got in my car cried all the way home! And only now stopped! Crying for all the changes that are and are about to happen........ Feeling very down today, not coping very well at the moment xx

Weeannie1
Member

Re: Now told need MRI scan before told treatments

The questions I would ask are first and foremost the grade of the tumour and whether it's hormone or HER positive. They should be able to answer these basic questions from the info gleaned from your core biopsy. Once the results from your MRI are known, they can see the size of the tumour and will also be able to give you a predicted treatment plan based on all of the above. 

 

Have they mentioned anything about lymph nodes? If there's no lymph involvement, and the tumour is grade 1 or 2 and is small, then the chances are that you'll only require surgery (probably wide local incision rather than mastectomy) and radiotherapy. If the tumour is medium size and/or you have small breasts, you may prefer to have a mastectomy meaning that radiotherapy is not required at all. If the tumour is large, then they probably will recommend chemo and this may be done before or after surgery. In some instances, chemo is given before surgery so that they can shrink the tumour prior to removal. This is the best option if the cancer has spread to the lymph nodes because it allows your treatment team to see how effective chemo is at killing off the cancer cells.

 

I know how you feel re loosing hair, but I actually bought 3 different wigs and loved each of them. I had a short blond one, a long blond one and a feisty red one. Sometimes wore them all on the same day!! Used to get some funny looks from the neighbours till I came clean and told them what was happening. I had some real fun during chemo (seems really strange to be saying that!) so it's not all bad. Hopefully you won't need it anyway.

 

I think that BCC have a section about what to ask at appointments, so you might well want to have a read of that. There's also help on the Macmillan site about questions too. Please just stick to this site and the Macmillan one. There's so much unregulated stuff online and it's very difficult to differentiate between what's scientifically proven or not. It can lead you to a dark place, believe me coz I've been there!!!

 

Anyway, sorry for rambling on. I'm here to help if I can. Oh and my daughter left home for uni 9 years ago at the age of 17. Broke my heart for a whole week before I realised I wasn't tripping over her stilettos or having to continually pick up behind her anymore!! And wooly heads are more than acceptable at the mo.

 

Hugs, Ann x x

 

 

 

 

 

 

 

 

 

 

Tandy 4
Community Champion

Re: Now told need MRI scan before told treatments

Thank you Ann for your prompt reply, I'm feeling sick with worry, can't stop crying, trying hard to keep it together as my daughter is off to uni Monday, which is upsetting also. Just feeling pretty sorry for myself at the moment! 

So worried about the thought of chemo, can't bare the thought if losing my breast, or my hair!...... Fearing the worst I suppose! 

What should I ask? .......... Mind feels like cotton wool!!! Xx

Weeannie1
Member

Re: Now told need MRI scan before told treatments

Hi Tandy,

 

Please dont be alarmed at the fact that you need to have an MRI. I was diagnosed with lobular cancer in my left breast almost two years ago and also had to have an MRI scan. This is because lobular cancer can occur in both breasts at the same time, but this only happens in a VERY small number of cases. The way lobular cancer grows means that it's sometimes difficult to see on mammogram, so to make sure, they always do MRI scans on the "good" breast. Also, after biopsy, your breast tissue reacts to the site where the needles were inserted and can make you feel like the lump is growing daily. But in reality, this is just your body reacting normally.

 

I was 50 on diagnosis and underwent WLE, chemo and rads. I finished active treatment a year ago and am physically well now. After your MRI has taken place, your results will be discussed at an MDT (multiple disciplinary team) meeting which will consist of your consultant surgeon, breast care nurse, oncologists and pathologists. They will decide what will be the best way forward for you. unfortunately, I can't tell you how long your recovery time will be because it will depend on what treatment plan you have, but If you have any questions at all, please don't hesitate to ask me. The ladies on this site are invaluable for understanding, advice and confidence boosting, so you've come to the right place for help. Also, perhaps you may want to phone the helpline tomorrow morning. I used it a lot when I was first diagnosed and always put the phone down in a better frame of mind than when I'd picked it up. 

 

When you're first diagnosed, it's such a shock and can be very difficult to take in the information that your BC nurse or surgeon give you. I took both my husband and daughter with me to appointments so that I wouldn't miss anything they said to me (6 ears are better than 2!) Please take care and be kind to yourself over the next couple of weeks. I promise that you will feel more in control when your treatment plan is worked out. Sending you big hugs, Ann x x 

 

 

 

 

 

Tandy 4
Community Champion

Now told need MRI scan before told treatments

Hi, every day that passes I'm becoming more scared!...... Have had core biopsy two week ago, told I'd get call back appointment for results and treatment plan. Had phone call from BC nurse who told me I'd get a call to go in for MRI to see if there's more going on!?...... Then wait, again, for results before appointment to see consultant team to discuss treatments next!........ She mentioned Lobular breast cancer..... PLEASE if anyone has had this diagnosis I'd appreciate the support and hear of your experiences, treatment received and recovery timescale? After the biopsy (even now two weeks on ) my breast seems more misshapen, painful and I can feel more of a solid lump now!!!!???? Is this usual?? 

think I'm going to have to speak to my dr as the constant thumping and palpitations in my chest are scaring me too, as well as the feeling of a lump in my throat when I swallow...... Soooooo scared!!!! 😒