Given diagnosis of above yesterday. The waiting over the last few weeks as been awful. Glad to know what I am fighting. Got pre-ops on Monday and MRI scan on Wednesday. Decided to go on my hols to Italy anyway next Saturday. Because of this, op is scheduled for 14th May. Weird and surreal time. Family brilliant except for husband who decided to get drunk Yesterday I went to bed alone while he slept it off when I could have done with someone to talk to. I havent posted before but I have been very grateful to read the information and postings on this site over the last few weeks.Thank you all.
Sorry to hear of yr dx, its hard to come to terms with. Hopefully yr husband will now be able to support you after his initial reaction. They do find it so hard, mine said he wished it could be him and not me! I have found this site so helpful and supportive as my journey has progressed.
Take care love debs xxx
Thank you for your comments. I feel sure this site will be very useful for me.Thanks and good wishes to you.
Hi Jeanie1
I am sorry to read of your recent diagnosis. As well as the support you are receiving from the other users you may find BCC’s resources pack useful, it has been designed for those newly diagnosed and has lot of information which can be helpful.
If you would like a copy please follow the link below:-
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/82
I hope this helps.
Kind regards
Sam (BCC Facilitator)
Hi Jeanie
Welcome to the place nobody wants to be! - but this site has been a massive support to me, I’m sure you will find the same.
As you have already found - the waiting for results is hard - it is easier once you know what you are dealing with - honest!
Notice you are having a MRI - is that part of a clinical trial by any chance - I had one too. (Well, I ended up having two - that’s another story!) They are OK - slighly strange but not painful, you’ll be fine. Let me know if you want more info.
You are doing the right thing having your holiday, that will set you up nicely for the op. I had my op about 3 weeks ago.
Keep in touch, Jeanie, we promise we won’t go off and get drunk! - well we might, but we’ll pour a glass for you as well!!
Take care
Lizzie XX
Hallo,
Just seen your coment on my other posting.Thanks. Not used to this set up yet so opened a new one. Probably confusing everyone as well as myself! Thanks for the support.I have had a MRI scan before when I was diagnosed with cervical spondylosis but I believe it is a bit different for a breast one and I will be lying on my front.
We have changed our mind every hour about the holiday but I dont think our heart is in it. Nurse said it is suspected invasive today.
What as your story been then Lizzie? When did you have your op, and how did it go.
Thanks again.Jeanie
Hi Jeanie
Yes, breast MRI is lying on your front - with boobs sort of suspended in little holes! Bizarre!Arms stretched out in front of you, I had a drip in for the contrast agent (sort of a dye - but clear - shows up on scan)- which I think is standard. I also have neck problems, so make sure you get as comfy as possible before they start, it takes a while! As you will remember - noisy too!
I had a routine mammogram when I was 50, which picked up calcifications. Biopsy showed DCIS, was offered MRI as an alternative method of diagnosing and the breast unit were comparing the two methods to see if one was more accurate etc.
Unfortunately, the MRI showed a suspect area in a totally different area to the mammogram! So then a further horrendous wait for second MRI (hence the postponed op)- which showed the area had changed - due to normal breast tissue behaving cyclically. So basically OK.
Had WLE (wide local excision) - which is what they used to call lumpectomy, on April 5th. Bit lumpy and tender still, but generally OK, radiotherapy to start in next 2-3 weeks.
What made the nurse say “suspected invasive” today, Jeanie? Had they said DCIS before? We just seem to get bombarded with “stuff” at that stage, hard to take everything in, isn’t it?
Keep posting, Jeanie, we’re here for you. The holiday probably won’t be as good as it could have been, but the change of scene might be better than staying at home?..I know it is impossible to “take your mind off it” - especially around diagnosis - I didn’t think about anything else!
Take care
Lizzy XX
Thanks for your message of support again Lizzy. Glad your op is done and things appear to be going OK.
Thanks for info on MRI. How long does it take?
Made a final decision about hols this morning.We are going to keep to the 14th for the op and go on holiday! The indecision was the worst.
Yes DCIS was the first diagnosis but nurse read out suspected invasive yesterday. Not surprised because I found lump first about 7 weeks ago now, but results have been fluctuating. Told me I have dense breast (and brain!)so it didnt show up on mammagram or scan so celebrated too early. Consultant (who is great) found lump easy though and had needle biopsy which came back an inconclusive 3. Then had a core biopsy and got the result of DCIS last Friday.
Think I have had the usual jitters and range of emotions since and trying to take it stage at a time but mind does run away with me at times!
Thanks again for this site.
Jeanie x
Morning!
MRI about 40 minutes, I think, they scan once, then the “dye” then rescan.
Glad you are going on holiday, I know it won’t be the same as “normal” - nothing will feel normal right now! - but looking back, I would have taken some time away - while you are waiting for things to happen, the days drag. You probably come back, and in a very strange way - be looking forwards to the op.
Try not to dwell on the comment by the nurse, I don’t think 7 weeks will have changed things - if they have found DCIS on the core biopsy, keep fingers crossed for that. What op have they planned?
The emotions will be all over the place - and your mind races ahead, I think everyone on here feels like that. Take each bit as it comes, and don’t feel guilty if you need to cry, or rant, whatever. In the early days, with all the “What ifs” going on, I used to find myself apologising if I got upset - in case I upset others! No! - time to be selfish and look after Number 1!
Take care,
Lizzy XX
Lizzy,
have you seen the advert for side-affects of cannabis?
I ask this because I think I have turned into that person!
I go through the whole range of emotions in an hour!( without the help of drugs I might add)
Having a wide incision ‘something or other’ and two nodes removed.
Why am I so tired? Waking about 5 but such an overwhelming tiredness for the rest of the day. Feel that I have been in a battle but I know it as only just begun.
Have you got spondylosis too? How did MRI affect your neck.
Have menierers as well and worried that I will go on a spin!
Oh well.Day at a time.
Loved the poem posted on another posting by the way.Just what people are saying. ‘keep positve’, ‘only early breast cancer’.'you’l be fine’Hate them all!
Jeanie x
Hi Jeanie et all,
Sorry to hear of your recent diagnosis.
Thought I’d join you as I’ve recently been diagnosed with DCIS and share some of your emotions and feelingsI, too, have that overwhelming tiredness that you describe. I’m sleeping fairly well (surprisingly) but as soon as I get to 1-2 ish in the afternoon it’s like I’m in a coma!!
Also wanted to let you know. When they finally suspected DCIS with me ( it took 2 months to get to that point) they also said ‘suspected invasive’ to me.I think DCIS often comes back as inconclusive or suspicious with the tests. To be sure of my diagnosis they had to take my lump out (WLE). Thankfully no invasive was found after all- the consultant said that if it would have been there it would have been in the middle of the lump.Hope that helps!
Glad to hear you’re going away on hols.It’s a great idea and helps to switch off a little,
Love Freddie xxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks Freddie,
Reassuring to now you were told suspected invasive too, and that it turned out OK.
Been to my GP today for a sick note. Weird to see it written down.
I am a counsellor and no way can I help others at the moment. She was the one who rapid accessed me to the breast clinic so I thanked her for her speedy referral.
MRI scan tomorrow and not looking forward to it but another step in the right direction.
Did you have to have radiotherapy or chemo after?
How are you feeling now.
Great that we have this site isant it?
Jeanie x
Hi
I know how you feel, Ive never ever been off with a sick note and I’m now on my second.
I’mnot entirely clear about my treatment plan yet. It took a while for me to actually get diagnosed after finding my lump(mid Feb) and even then it was only after the WLE (April 8th). I’m having another WLE on Friday as they didn’t get clear margins the first time.If they can’t get it all then I may have to have a mastectomy. They really haven’t discussed anything further than that with me.I’m feeling a little better than i was prior to diagnosis but I’m fed up of all the constant waiting.
What are they doing with you?
Love Freddie xxxxxxxxxxxxxxxxxx
Hallo Freddie,
Having a WLE on the 14th. Removing two nodes. Having the dye injected prior to this to see where the nodes are. They said that they would take a area around the lump away too. Then its wating for results and fingers crossed nothing else.
Whats this ‘clear margins’ about? I hope I dont need any more surgary after this one.
Jeanie x
Hi Jeanie
Sounds like you’re having a similar thing to me although I didn’t have any nodes done ( so far anyway).
Well when they said they’ll take your lump out and an area around the lump that will probably be in an aim to get ‘clear margins’. They can’t see the cancerous cells with the naked eye so they try to get the lump out and some more so that they can be as sure as they can that they’ve got any stray cells that may be around the lump. They have to get a certain amount around the lump o.5 cm I think that is clear all the way around then they call it ‘clear margins’. If they find a stray cell in the outside O.5 cm they try again to get some more.
Apparantly somebody told me about 20% of people need another WLE in an aim to get these clear margins. Don’t worry though, hopefully you’ll be one of the lucky 80%!
I think that’s right anyway, I’m sure someone will correct me if I’m wrong!!!
Love Freddie xxxxxxxxxxxxxxxx
Morning Jeanie, Freddie,
Emotional rollercoaster time, Jeanie! - certainly don’t need drugs to get you there! - Most overused term, all those reality TV stars who are on “an emotional rollercoaster” or “devastated” - if they don’t win some stupid competition or other!! - we know what it is really like!
And yes, you will get mightily pi**ed off at the things people say…I try and be generous, and think I probably said crass things myself before this experience…really, I believe you have to go through the process to understand what it is like. That is why this site is so great.
Clear margins means they have to get an area all around the “lump” with no suspect cells in. I was “lucky” - they got clear margins first time, so only one op. (My fingers are crossed for you and Debs, clear margins this time round, Freddie! )Think radiotherapy is pretty standard after DCIS has been treated by WLE. (All these abbreviations we suddenly learn!)
Jeanie, the only issue with you neck and MRI, is you have to lie on your front, arms above your head, with your head turned to one side or the other. Yes, I have spondylosis, and a previous disc problem, so was really only comfy with my head to the right. Make sure you get onto your best side, or ask if and when you can alternate sides if you feel you cannot stay one way for the duration. Does that make sense?! Easier if you were here and I could show you!!
Really - it’s easier than it sounds, I was worried I wouldn’t be able to keep still, but as long as your boobs are still, it’s OK! Let them know you have a neck problem, they try really hard to get you as comfy as possible.
Take the time off sick - my GP was the same, I went expecting to be off a bit, then work a week or two, then off, - she said, no, take the time, and it really has been the best way. This is time to concentrate on YOU - people will try and say “You should work; try and keep things normal; It will take your mind off it” - Cr*p!! Nothing really takes your mind off it - why should it? Focus on one day, one step at a time. Do what is right for you - I’ve had a very dangerous bout of retail therapy!
Keep asking away - Jeanie, we’re all here for you, hope you are OK Freddie, and Debs - be thinking about you Friday,
Lizzy XX
Jeanie,
Thanks for the advise and info for the MRI. I will tell them about neck problem. Can’t get arms up though without discomfort.
I keep telling myself day and stage at a time. Stomach settling a bit now and not so ‘wired’. Time helps us to adapt.
Lucky I am in the counselling profession because I have been counselling myself over the last few weeks and I suspect I will be doing the same for the next few weeks too.
Thanks for the support Lizzie and Freddie and my thoughts are with you too.
Jeanie x
Had the MRI scan today. Was surprised when I got there to be told I was to have dye injected. Not able to have the headphones and music either only ear plugs.Staying in one position and having to stay so still as really upset my neck and I have been in pain since. Unfortunetly I felt very upset and in pain after and I have been ‘blarting’ all over my daughters and hubby!
I feel so sorry for them now seeing me like that.
I have also been saying all sorts of stuff about never seting foot in the hospital again and leaving things alone.
Did other people feel like that?
jeanie x
Morning Jeanie
Hope you are feeling OK this morning - and the neck isn’t too painful. Another step out of the way, Jeanie, look at it that way.
Yes, I just had ear plugs - doesn’t do much to block out that row, does it?!
How old are your daughters? I have 2 sons, and in the first few weeks, when everything was uncertain, they did see me upset, Jeanie, you cannot really hide your feelings. Don’t beat yourself up over it, but, things WILL improve, you’ll get there.
Have you got any decent pain relief for your neck? - I can recommend tramadol - only thing that really sorts mine out if it gets really bad! Don’t take anything much regularly - but that is needed occasionally.
Take care, and take things easy - you’re worth it!
Lizzy XX
Hallo Lizzie,
Thanks for the messages of support.
Neck not too bad today. Only take painkillers when desperate or use my collar for a couple of hrs.
I have three daughters and One son. The son lives in Ireland and works as a architect. Fortnightly phone call if he thinks about it.
The two oldest girls have been brilliant but the youngest is pregnat again and we are sheltering her a bit from it all. It is her birthday Saturday but we are going away so we all went for a meal last night.
Consultant should have results from MRI this afternoon and pondering whether to ask him about them?
What do you think?
Jeanie x