Frustrated, Confused ... bit of a mess really!

Hello All,
I didn’t really want to join this forum but such is life. I am newly diagnosed with DCIS and am awaiting an MRI scan to check for anything more sinister. I have so far had an ultrasound, core biopsy and mammogram. My consultant is not very forthcoming with information and I felt so stupid trying to ask my questions today. I get the impression he would rather I just shut up and go away. He did tell me that the biopsy showed high grade cells. I know I become really defensive when I feel out of control but I don’t feel the approach of the consultant / nurse is very helpful. One so cold, the other so overtly ‘understanding’ - neither actually talks to me like a normal, intelligent person and I get so frustrated.
I really am feeling so angry and confused today. I had an appointment last wednesday when they did the mammograms - everyone (dr / nurse / radiologist person) said they don’t work well for younger women (I am 33) so I don’t really know why they bothered. Went in today to be told they were no good and MRI needed. Am so frustrated by this total waste of time. I now have to wait for them to phone or write to me for the MRI scan. They wouldn’t even say if it would be a phone call or letter. Do they not understand how worrying this is - in all the other uncertainty is it too much to expect a simple answer one way or the other. Letter or phone call - NOT DIFFICULT!!
I am also completely confused by how I am supposed to make a decision on treatment. I have an appointment with the nurse for monday to talk about the surgery options but the Consultant just said it is up to me - no guidence or anything re risk factors / success of different treatments / recurrance etc. As far as I can gather I’m supposed to make a wild stab in the dark based on zero information. My next appointment with consultant is not until 19/09/12 and I am tentatively booked in for surgery 21/09/12. So I get maximum 2 days to make my decision with the information from the MRI scan.
What makes this all more difficult is my family history. My grandmother had breast cancer aged 37 and my older sister (also 37) is currently being treated for invasive breast cancer. My father died of liver cancer in November 2011. I am so worried about how my mum is going to deal with this new blow and feel terribly guilty about adding to the misery. My nurse threw in the idea of genetic testing today. I have no idea what to do about that.
I’m sorry for being so negative in my first post but I feel awful today. Cried and cried after my appointment and in a way feel I am making huge fuss about nothing in comparrison to other people on this site with worse diagnosis… including my sister. I feel angry, sad and stupid in equal measures. Here’s hoping it can only get better!!

First things first and you don’t need to apologise for the way you feel. The first few days after Diagnosis is the worst and you are bound to feel the way you do and you are not being negative. The good thing about this site is that you can say exactly how you feel and you will get loads of support as we have all been there. It doesn’t sound as if you appt with your consultant went very well and yes he shoudl be there to give you info and advise, ultimately the decision will be yours but it needs to be based on information and it doesn’t sound as if you have got any - apart from the need for an MRI but no detail as to when or how they will let you know. The helpline on here is excellent and I suggest you ring them - they will be able to tell you exactly what you should expect (and demand) to be honest and I think you need to speak to your BCN urgently and tell her how you felt (and still feel) as you have so many unanswered questions but you don’t even know the questions let alone the answers. I would guess that you need a Mastectomy if you have high grade DCIS but in a lot of cases ladies have chemo first to reduce the cancer and then have surgery afterwards so you need to ask why he thinks surgery first. Also you need to ask about a reconstruction - are you having an immediate or delayed - an immediate gives better results but is not alway appropriate dependant on your cancer (so you need to ask). I had genetic testing too as my sister had bC and one of my aunts died of it. If you do have the gene then you may need more surgery dependant on the results again this needs to be explained to you in full. No wonder you cried - I remember crying and crying for nearly two days when I was diagnosed and I had much better information. Don’t feel bad about crying but you do need to try and take back some control and get more information before you decide whats best for you. This cancer is a real bu**er, but you will see that there are loads of us have been where you are now and have got through it and are living normal healthy lives.

Hello Brady40,
Well that was good to have a rant on your first post and I hope it may help in some small way. Rest assured that we are all thinking of you as you await your MRI scan. My Oncologist too is very cold, no bedside manner , does not like me to ask complicated questions and I much prefer seeing her registrar, but I guess they have a difficult job to do , day in day out telling ladies bad news. When my Onc told me that I had got to have Chemotherapy I was devastated as previously they didnt think I would need it.She was straight to the point, told me I would lose all my hair and it was too much information to take in one day. When the time came however to have the Chemo I did the Cold Cap treatment so I never lost my hair!!. So you can take control and plan things for yourself. We need to make lots of decisons and we are on an endless journey but you must stay strong to deal with this. Get as much information as you can from this site and ring the Breast Cancer team if you need answers to your questions. All the very best to you all . Take Care Tracy x

Hi Brady40

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I’m sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.

As well as the support you are receiving on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

Also, as others have mentioned do give the helpline a ring if you need any further support or information. They’re on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes Sam, BCC Facilitator

Hi Brady

Well what a bummer - not only a scary diagnosis but a consultant with no people skills! Poor you!

I would suggest that you ask for a second opinion and hope that you get someone a bit more sympatico and prepared to explain things a bit better.

I had high grade DCIS - like you - but I had a consultant who was prepared to explain things to me at every stage. I am older than you but I had to have the MRI as it shows other possible instances so that they can decide whether to recommend a mastectomy (mx) or whether a lumpectomy followed by RT will suffice. (As it turns out they found another suspect site and I had a full mx with immediate DIEP recon)

I do recommend that you do not rush into anything even high grade DCIS you have a few weeks to look around and find another consultant. Or maybe you would prefer to write a letter to your consultant and your BCN explaining how you felt at their treatment and say that you cannot make a decision based on no information - I would copy that letter to your GP with a covering letter to your GP saying that you would like a second opinion - I do hope you have a decent GP at least! Then once the letters have been delivered book an appointment with your GP and talk to him/her about it.

I also recommend that you talk to the helpline here and get as much information as you can anyway as the more information you have the better your decision - the consultant is right about one thing - it is your decision! But he is at least meant to give you the basic facts and tell you where to look for the rest!
Please let us know what happens and keep in touch!

All the best

Liz x

Hi Brady40,
I was diagnosed in April with IDC. I am 33 and they did they same thing to me: sent for a mammogran (i hate those things!) that was no good. They knew it might not be any good but they did it anyway. Then when the results were no good, they sent me for an MRI the next week.

Believe me, I gave the nurse short shrift when she told be the mammogram was no good!!

(In hindsight, I do wonder if one of the nurses saw me as a child, with the hand holding and wanting to hug me etc.)

In the beginning, you get lots of appointments, scans, etc. most of my appointments were made over the phone, and then followed up with a letter. Do they have a mobile number to reach you?

I beleive there’s a DCIS section on this forum. maybe it would be a good idea to browse and see what people’s experiences have been for treatment. I don’t have DCIS but had chemo first to try and lessen the chances of mastectomy. I’m now waiting to mee the surgeons to hear the verdict.

On another note, feel free to pm me if you want to ask anything you dont; want to put on the board. there’s also a younger women’s forum on here too.

You WILL get through this

Hi Brady,
As Saffronseed and others say, the diagnosis is a hell of a time…I was a total wreck at exactly this time last year.
Like you I had high grade DCIS which was described as widespread. In actual fact there were two tiny mutant cell areas, which as you may know, start in the ducts. They measure the overall size from the outside of one cell which has shown up, to the outside of the furthest one. In my case one was in lower left area and the other in upper right, so the overall size was 7cm.

If there is only one area/cell group, then there’s the option of a lumpectomy to remove it, followed by a programme of radiation to reduce chance of recurrence. They need to get a clear edge around all the cells and sometimes have to go back in and backin to try to get this. In my case, and possibly yours, they recommended a mx because of the area involved. In fact I preferred that option, with an immediate reconstruction, as it avoided rads.

I suspect that it’s a routine thing that you can’t progress to MRI until there’s a mamm result. Most ladies seem to have a MRI and as someone says, at least it checks out whether there has been any spread anywhere else, so I saw it as a bit of a clean health check. It is scary, I’d never had any op or anything before, but each step is a step nearer to getting back to normal. It’s all pants, but hey ho, all being well, you and I are actually slightly lucky if it’s DCIS, as it’s such an early form of BC.

You don’t say whether you are seeing a big teaching hospital, but if immediate reconstruction is an option, which it probably is, you are better off at a big hospital as they have more skilled plastic surgeons who offer the best range of options.

And finally, there are national guidelines for BC tReatment, you can google NICE/early breast cancer treatment …and you’ll see that hospitals are expected to give you full info and details of all the possible options.

I never wanted tI be here, and I fought against the idea initially, but the forum wil give you great advice and support…I’m a year on and still check out posts in case I can help anyone as I was helped. I now have a refilled breast, a new nipple, and a flat tum following the mx/DIEP op. There was in fact only one tiny cell area of 1.2mm in the end, as the other had all gone in the biopsy. But at least I know all the cells have gone and that breast is clear, and I haven’t needed rads it chemo.

Fingers crossed for you, done beat yourself up about feeling angry or confused…it’s a he’ll of a lot to come to terms with. Happy to help or send you info or pics if you let me have your contact details. Best wishes,

I just wanted to chime in quickly re reconstruction: some trusts have a policy not to do an immediate reconstruction if the patient is due to have radiotherapy. I’m at a large hospital and when I asked about immediate recon, in case I need mx and that’s what the oncologist told me.

Thankyou so much everyone for the replies - it does help to hear from others who have been in the same position. Gadget-Gal - it sounds like we have the same kind of response to the hand-holding / hugging approach. I just would like to be spoken to normally with some semblance of manners but no inappropriate stroking of hair / hugging etc. I think I just have to come to terms with the fact that is not the way it is going to be!

I got my letter for the appointment on the 19/09 today but no word on the MRI. Carried my mobile round in my pocket all day but no one phoned it. I completely understand the need for the MRI - I’m just furious that no one booked it sooner. I had called the BCN last friday to check on the mammo results and she said then I would need an MRI - so why wait another five days to ask me for the second time if I am claustrophobic, give me a bit of paper and say “we don’t know when it will be”. I know I’ve got to let this go but my god it makes me angry!!

Anyway - I am going to go to my appointment with the BCN on monday to speak about surgery options and maybe she will give me some more helpful information / resources to look at. I am going to try to approach it with an open mind as I know getting angry with them isn’t going to help. I still won’t have the MRI result until the 19/09 though so I don’t feel I can make a decision until then. Maybe the decision will be taken out of my hands - who knows.

In all honesty I have been trying to take the “think positive” approach since my dad was diagnosed and told he would die. Every time I have tried to think positive since then I have been kicked in the face so I’m wondering if “expect the worst” is going to be a better / less disappointing approach from now on. I know that is really negative again but I juat can’t put on a happy front any more. I’m done - too many bad things have happened.

Hello brady,
I dont know very much about DCIS but wanted to join the others in offering your support and encouragement.
We have all been in a similar (if not the same) position and its the hardest part- you feel so frightened and out of control. To be honest, when I was first diagnosed, everything went too fast, and I dont think it needed to be, so dont feel rushed into any decision. Like your experience (and others), it was a mad time of scans and tests and no clarity about what was happening. Like you, I had a mammogram, ultrasound and an MRI. As frustrating as it is, your doctors will need as much information as possible to assist with the decision-making (its a shame they didnt explain that!!)
The attitude I try to adopt is ‘hope for the best’ and ‘prepare for the worst’ because like you, my experience has not always been so positive.
As you have an appointment on Monday, you can try to use this as opportunity to ask questions, clarify the scan appointment. I’d keep the appt on the 19th and ask for another if you feel you need it.
I am sorry if all this seems obvious, but I know when my head is spinning, I go into ‘panic’ mode.
Anyway, the other reason for replying to your post is that I have an inherited mutation brca1. My advice would be to temporaily ‘shelve’ this until you have clarified your treatment plan. You can ask for a referral to genetics-its not a quick process, but it helps to take this one step at a time. When you are ready, there is ‘the family history and genetics’ thread and information/support but deal with what is immiedaitly in front of you first.
Good luck, Rattles

Rattles has summed up what I was trying put into words: "hope for the best and prepare for the


Basically, you’ve been told you have cancer, you might need chemo, you most definitely will have surgery. That much you know.

Prepare yourself for those things. When the rest of the info comes through, you can deal with it then

Hi I was diagnosed with DCIS in Sept 2010 . DCIS is the very early stages of BC and it is normally non invasive and contained to the milk ducts. I was recommended to have the area removed and radio therapy but I didn’t want to take the chance of not getting clear margins so I decided to have a MX , many people will think that this was over reacting but this was what I wanted. Since the mx I have had no further treatment and started to get my life back on track. I am a very active person I play squas and go to the gym and walk with my friend. I think you need to get all your results before you make any decisions. DCIS when treated has a excellent recovery rate and many people go on to live a normal life. I hope this helps you.

Thanks again for the replies - I do appreciate everyones thoughts.

Since my last appointment I have felt very down if I’m being honest. I don’t want to have a mastectomy but may not have any choice so can’t put it out of my mind altogether. I have my appointment to talk about the surgery on offer tomorrow… not really looking forward to it! We have a holiday booked for the week of 10/09 and I am in two minds whether to cancel it - seems a waste of time and money if I am going to feel like I currently do the whole time. Still no word on the MRI scan either so may have to cancel if that isn’t going to be in the next week.

It’s not just the thought of the surgery / radiation therapy that is upsetting me - it is also the feeling that I am going to spend the rest of my life with this impending dread… oh and the fact I don’t think I am going to be able to have children now. So feel a complete failure to my partner - he’s wasted ten years of his life with someone who isn’t going to be able to give him any children.

Brady-- I just joined yesterday, and saw your concern about genetic testing. IF it’s the OncotypeDX, it’s well worth it. It is a thorough break-down of recurrence possibilities after analyzing a sample of your tissue/tumor. (They have a website that breaks it down for you if you think it’s a good option for you.) But it would be a science-based foundation for future decisions, if you need that security (I did.) The test clears up that impending dread for good…
And I am speaking only from heart, not head… You are not at all a complete failure to your partner of ten years. Love is not a waste of time. You are in the car-wreck phase… You’ve just been slammed into and your head is spinning. Once the spinning stops, you can make sense of the damage and make decisions. Let loved ones help you through. Strength to cope never must rest on you alone. Save your strength to fight this battle.

Brady, speak to your BCN ASAP about referring you to a fertility clinic. You might be able to have your eggs frozen before chemo.
You would need to begin at the beginning of your cycle so time is of the essence. If your hospital is like mine, they’ll prioritise you because of your diagnosis. I was referred on a Friday and was given a same-day appointment on Monday.

Dont wait for your oncology dept to bring up the subject, it’s not always on their radar. i did that and almost didn’t have it done because we didnt think I had enough time befroe chemo,

Hi Brady

I would like to say - unless your BCN advises strongly against it for some reason - take your holiday - particularly if it involves flying - as you wont be available to go on holiday for several months after a mx and reconstruction and you will need it!

Unless they can make a strong argument for it - do not allow them to rush you into anything - even high grade DCIS can wait a few weeks for treatment unless they are convince it has already spread - obviously if your SNB shows that it has spread then that is a different matter but it is still up to you to dictate the pace.

Best wishes


First of all, what a bummer you’ve joined us.

Secondly, I’m glad you’ve got hold of this before it’s got completely out of hand. As Suziex said, DCIS is a VERY early diagnosis, before cancer has developed the ability to spread outside the milk ducts. I have fingers crossed that the MRI will confirm this. I don’t know of anyone who’s had DCIS without any invasive cells who has needed chemo and radiotherapy, so if your final diagnosis is DCIS and no IDC (invasive ductal carcinoma, the cancer that DCIS typically turns into if it’s left to its own devices) then your treatment regime is likely to be less crappy than it could be. But please don’t take that as me belittling your diagnosis - far from it, there isn’t a competition or heirarchy with BC. I’m just hoping you don’t need chemo or rads on top of surgery. And also, most of us on here, including me, aren’t medical, and we haven’t seen YOUR notes, so we can’t say what the best thing is FOR YOU, just speaking from our own anecdotal knowledge.

A couple of things to be aware of with MRI and its results. It is VERY sensitive, and can often show up “abnormalities” that are, in fact, perfectly normal and non-cancerous, and it can be very difficult for the person interpreting the MRI to know what’s a nasty and what’s just a normal difference (like a cyst, or a fatty lump, or other stuff that isn’t worth worrying about and not related to cancer) and they often err on the side of caution. So IF you are called back after your MRI for further tests, DON’T PANIC! When my tumour that they’d spotted on ultrasound didn’t show up on a mammo I had an MRI and they spotted another “suspicious” area so I had another biopsy, but I burst into tears at the result when it turned out to be absolutely nothing to worry about.

As for surgery, there are lots of different things they can do with DCIS, all depending on what YOU have. Some people have wide-spread DCIS throughout the breast or in several places, others have a small localised area. Sometimes they suggest a mastectomy (as DCIS, particularly high-grade, has a fair chance of turning into invasive ductal carcinoma, IDC you might see it referred to as), but sometimes they’ll do something called a wire-guided, erm, I’ve forgotten what they call it! (sorry!) but it’s a bit like a lumpectomy but you don’t have a specific lump that the surgeon can see, as DCIS is a change at a cellular level so they take a look for calcifications or other signs of DCIS and work out what they need to remove.

That’s without taking into account your family history. That might put a different spin on things for you, but your specialists who have access to your details will have a much better idea than any of us on here.

I would certainly recommend you give the helpline a ring in the morning so that you can have some help to work out the questions you need to ask, about DCIS, different types of surgery, genetic testing etc etc. Working out what questions to ask is often the most difficult bit of the whole process! That, and sitting in The Waiting Room, where we have all been, and we all know the agony of.

Some tips for the MRI.
Bring some warm trousers without any metal in them (elastic-waited PJs or fleecy something) and some toasty warm socks, and if you tend to feel the cold ask them to cover you over with a blanket once they’ve settled you into the machine. They have to keep the room chilly for the machine’s benefit, and keeping warm can very much help you relax. When I had mine, I lay on my front (with boobs dangling through a hole - very weird!) and my forehead resting on a very comfortable firm foam block. I just zoned out and imagined I was lying on a massage bed waiting for a massage. Unfortunately the masseur never arrived, but the notion helped greatly with keeping calm. That, or imagine a nice sunny beach sunbathing - I seem to remember that image wandering round my head too.

It’s VERY noisy, with lots of banging and buzzing, but it’s all very rhythmic, so if you can also imagine yourself in some kind of dance trance tent at a festival (while sunbathing and waiting for a masseur) that can also help. At mine they gave me headphones which very cleverly had an echo-y quality, so with my eyes shut I felt much more like I was in a wide open room, because of the acoustics with the headphones.

Sometimes they will want to introduce some contrast dye, so they’ll put a cannula into your arm beforehand, and will warn you when it’s going in, as it can feel a bit weird. I have to say I didn’t notice at all, but some people feel it a bit cold, or perhaps a bit stingy. I actually found the whole thing very relaxing, in a strange kind of way.

If you’re very nervous about that kind of thing, ask if you can visit beforehand, so you know what to expect. They should be happy to show you round.

As for the holiday - GO FOR IT! A week or two is unlikely to make any difference at all to your outcome, and you may even be able to see it as a celebration of your boobs before they are subjected to treatment, or if you know you’re due for a mastectomy they’ll give you the chance to say goodbye to it/them.

Best of luck. And call the helpline.


Hi Brady,
Just wanted to say hello. I am new to the forum too, I’ve been lurking around for a few months but just finally plucked up the courage today to post!
I was diagnosed with widespread/high grade (C5) cells, DCIS. I have regular mammograms as my mum had BC at 47 and up to June nothing showed up on them. I had some nipple discharge and saw my GP and it was only found after a very thorough BCN decided there was a weird lump and did a biopsy. Nothing showed up on the mammogram or an ultrasound. I had a microductectomy and deep core biopsy in June and it was found that way. I had a bilateral mx on 24th Aug and have had temporary implants put in. I’m waiting for my biopsy and histology results which I will get on Wednesday. Fingers crossed. I’m going for DIEP recon next year, I’m hating the implants!
I have had to wait such a long time between appointments and they actually left me 6 weeks before any one would decide what treatment to give me. It’s ridiculous as they forget we hang on to every word they say as any information is held onto. As I say my mum had BC and they have done a genetics test on me. There is also a pancreatic cancer relation as my mum and nan both died of it at 68. BRCA2 is related to this too.
What I want you to know is that I completely understand every frustration you are feeling and think about the genetics test. There is a 50% chance that you don’t have the gene, that’s the only way I can look at it!
I will keep checking in to see how you are progressing.

Viv xxxx

Thankyou Vivtwins1 - I’m sorry you have had to go through all of that and I hope you get your recon sorted soon. Don’t take this the wrong way but it is nice to hear from someone who I think really does understand how I feel!
To be honest I am no less frustrated than I was when I last posted. I had my MRI on 5th sept and we had our holiday booked for 8th - 14th. Got a phone call from the BCN on 7th Sept saying MRI results showed only the one area so basically we were on for a WLE on 21st Sept. Thought - great, can now go on holiday and put it out of my mind until we get back… no such luck.

Got a message left on my mobile phone on 13th Sept at 16:00 saying we have an appointment booked for you tomorrow morning at 8:30 to “dot the I’s and cross the t’s”. Obviously phoned back to find out what the hell that ment only to be told by the BCN that she couldn’t remember why the consultant wanted to see me - oh and btw She’d realised you are on holiday (only told them 100 times) so just don’t worry about it!

Multiple phone calls yesterday and I am finally told that actually MRI results do show another area and I need another biopsy. They had known this since tuesday - I could have cut holiday short and come back for the biopsy but as they didn’t leave a message till so late that was no longer a possibility. The BCN I spoke to who “couldn’t remember” why I’d been called back also lied to me - I have been told she got off the phone from me and emailed the consultant about the additional biopsy - so she obviously did know. Was then told that maybe I could have a biopsy on monday but they wouldn’t know until monday so would call me. Cue a rather lengthy rant from me and I now have an appointment on monday morning at 9am for the biopsy. Next appointment is wednesday where hopefully I will get the results and I am still booked in for surgery on friday. Don’t know what I will do if it comes back that I need a MX as none of the options for recon have been explained to me - will I be expected to decide on wed?

Honestly I have lost all faith in anything they are telling me now anyway. To be told the MRI results are one thing and then another has really dented my already minimal confidence in them. To top it all off my sister got the results of her CT scan last week - her breast cancer has spread to her bones… she is now stage 4. She is dealing with it well but I am so sad for her. I am also terrified that that is my future too.

Hi Brady

I am just back from being away from my PC for a few days - sorry to hear about your MRI results I do hope your biopsy results were back in time for today’s appointment but I do doubt if they were!

Please let us know - sorry I didn’t reply sooner - hope all is well.

Best wishes

Liz x