Just waiting for a date...

Hi, Just spent the last hour reading all the messages and now I don’t feel quite so alone!
I was told last week I have Lobular breast cancer, need surgery asap and then will have chemo and radiotherapy. I’ve been for an MRI scan today to check the other breast but just waiting for a call/letter with the date of my operation. Feels like an eternity - I just want to get rid of it!So far, Im the only one who hasn’t cried!Don’t think this is normal , I’m always the one looking after everyone else though so its a hard habit to break.
As I’m new to this is it best to post comments on lots of the different topic groups? Hope I can buddy up with someone else at a similar stage.

Claire, of course it’s normal. So is bursting into tears every five minutes. So is laughing hysterically, or any emotion you can think of. Normal? No idea what normal is any more, all I know is, it’ll never be the same as the “normal” I had before diagnosis, I’m just keeping my eyes open to see if I can spot what the new “normal” is.

I don’t have lobular, I have ductal (the common sort) but there are lots of ILC ladies on here who can join in.

Waiting for appointments and results is horrible, and we can all sympathise because we all remember very clearly the anguish of The Waiting Room.

You can post wherever you feel like, there aren’t any “rules” as such, other than to treat others with respect and humanity, which pretty much everyone does. There are all sorts of threads: dates for starting chemo, specific questions about side-effects, threads for people of different ages, humourous threads, light-hearted threads, good news threads, take a browse, look at posts that have recently appears and dip into the thread to see if you want to join in, and if you do, just join in.

Welcome, though I’m sad we have a reason to welcome you. The best thing is, with these forums you know you’re not alone.

NEarly forgot to mention, the helpline is really, well, helpful! Also the Publications section has some very clear leaflets that explain stuff. Try to avoid googling indiscriminately, as there are a lot of sites out there that are out of date, single-issue, marketing, or just plain wrong. This site, MacMillan, Cancer Research, reputable cancer sites are great but there are a lot of charlatans too who could end up scaring you half to death!

Sorry you’ve joined the club, Claire. We all react differently to the news of BC, but many of us find that the period of waiting first to find out details of our diagnosis, then for dates for treatment and then for the treatment itself is particularly difficult.

New threads form all the time around people who are beginning or undergoing treatment around the same time, so I’m sure you’ll find one to suit or you can always start one yourself.

Many of us find that being well-informed helps us to be more active in our own treatment, not just passive victims and patients.

Best wishes


Hi claire and welcome to the BCC forums

In addition to the help and support you have already received I am posting the number to our helpline which is open 9-5 weekdays and 9-2 Sat, please feel free to call on 0808 800 6000.

Chocciemuffin has also mentioned our publications, one of which is a resource pack, this is designed for anyone newly diagnosed and you can order a copy here:


Take care

Hi Claire
I was diagnosed with lobular breast cancer too in my left breast on 22nd February 2008. Had lymph nodes checked and cancerous cells were found there too so had full clearance of nodes. Had checks on right breast as lobular sometimes attacks both breasts at once but luckily mine was ok. Had CT and bone scan too before my mastectomy and finally had my op on 26th April. Seemed such a long time to wait as I just wanted the horrid thing removed from my body.
Had 6 TAC chemo sessions and radiotherapy too.
I had my breast recon using my back muscle on 31st March 2010 and a nipple recon and a lift to my right breast in January 2011.
Just a nipple tattoo to go and that I hope will be that.
I know it seems daunting at the mo. The time goes so quickly and on the positive side you meet a wonderful group of women when you go through the treatment. Have made so many new friends.
Best of luck with your treatment. You will be strong because you have to.
Sue xxxx

Thank you everyone - all advice gratefully received!
Particuarly helpful to hear from someone who seems to have been down a very similar path.Looks like I need to deal with it one step at a time. So, surgery first, just need that date!!

Hi I have just been told 2 days ago I have Lobular BC, It was a bit of a shock but deep down I had an idea something was wrong, going for a mri scan nxt fri,I think the waiting is the worst part, not knowing how bad it is,I just want it took away asap, I have been trying to stay strong and positive but its very hard my mind goes into overdrive,although a think i’ve been a lot stronger than my family and friends.

Hi Katie
I had my MRI on Friday although I was told it wouldn’t delay the surgery. You’ll find you probably are the strong one amongst everyone else but I think that is because everyone feels so useless. Must admit though I’ve never seen so many grown men cry as on the day I told my friends at work- and I didn’t make the tea all week!Probably should enjoy this bit while it lasts!!
I’m having a clearance of my nodes too - are you? Would be nice to chat more as it looks like we are going through this at the same time.
Claire x

Hi claire
Yeah I think they do feel useless, My partner Tom is still in shock as this is his 3rd time of experiencing this in his life,we had already planned a night away with friends the day after I got told I had BC I decided we were going and it was great just to get away and have time just for ourselves and it helped me release my emotions as I had’nt cried yet,I had been trying to keep it together in front of my kids, and beleive me it did heip me to try and come to terms with it…
I want everything taken away and reconstruction done at the same time, well thats my thoughts just now still have to talk it over with consultant.
When do you get your results of your MRI?
It’s so good to talk with someone who is going through this as well…
Katie x

Hi can anyone tell me when roughly how long it takes to get results back after an MRI scan? just newly diagnosed…

It very much depends on the work schedule of the person who interprets the MRIs. It’s a pretty skillful job and there are things that show up as “something” that are perfectly normal as well as things that are suspicious, so it can take time for them to analyse all the pics. I waited 4 days for mine, I think.


I was dx with invasive lobular in nov.

Because of the unfortunate way that lobular appears (not nec’ lumps)they do all of the scans as norm. So over 2 weeks i had mri, ct and bone scan. The 2 weeks were hell. Everyone will tell you the waiting is the worst. Fortunately it hasn’t spread, although lymphs suspicious, and was told treatment would be mastectomy, chemo, rads and then recon.

Unlike you i didn’t feel desperate to ‘get it out’, don’t know why just didn’t. I thought hard about the treatment and realised that, for me, having a mx 1st and then chemo would do me no good. I thought that having the op would make me low and then when having chemo i would become even lower. I asked for chemo, then mx with immediate recon - the oncologist and surgeon met and discussed and agreed.

After a few stop-starts, due to allergy to one type of chemo, i’m now on my 3rd chemo. My lumps, which had become v. obvious, are noticabley shrinking, which gives me a real boost and i wouldn’t have had this with the op first.

Try not to worry (!) about the length of time for results to come thru’, the medics need the whole info to be able to work out the best plan.

If you can think about what YOU want to happen. Maybe the best for you is to have the op first or maybe you hadn’t thought about other options that might be available - use the time for you to make a plan too.

best of luck. x

Thank you, feel bad saying this but it’s good to know am not alone.
My fear is what if it’s spread to other parts of my body and how long have I had this? have they caught it in time?
Since I found out every ache and pain in my body has put my mind in overdrive…
How did you find your BC? I thought mine was hormonal at first as it was more of a thickening and I only felt it when I had my periods and I was having sharp pains, my breast have always been tender when I’m having my periods but pains where getting worse so went to docs to get it checked out, she thought it was just a thickening and said to wait until I finished my next period, so I went back and said I want to be referred to get it checked so glad I did.
All the waiting and not knowing is mental torture once I know what am dealing with I’ll probably feel more in control, trying to keep things as normal as possible at the moment, especially for my kids.
Take care x

Hi Katie

I could have written your last 2 messages!
My husband still in shock 2 weeks later, he cried more than me but the night I 'let it all out’he was great.
He is a bit surprised that I’ve kept all our social engagements but actually its better to tell our friends face to face and I can’t bear this waiting around so might aswell enjoy ourselves for a bit longer.Plus as I’m still at work its nice to do some fun things too.
I spoke to my bcn today and I am on the discussion list this Thursday so she’ll ring me after that.Can’t bear not being able to plan anything though so I hope they make a decision soon.

By the way does anyone have any idea how long chemo begins after the op?
Happy to text if anyone wants to pm and i’ll pas on my mobile


Hi Katie and Claire

I totally know how you are both feeling and I will gladly answer any questions that you may have, i too could have written email re waiting and it being sheer torture. I have had my op, it was 14 Jan and my chemo is starting a week on Friday, waiting for those results, has it spread, did i catch it in time, everyone says thats what everyone thinks and it so is true. I too carried on as normal and amzed my other half and family and friends but you just do it cos there is not a choice and there is so much help on this website its humbling, everyone has been through or going through or feeling as you do, there is always someone to comment and advise and as much as your family are fab support its that support from the outside that adds the strength we really do need. I am scared too of the unknown, this time last week i was waiting for my CT scan result and i was scared too as you can imagine, it was clear but i can still relate to how you are both feeling now. this website is fab and you can always ring the helpline number if you are unsure of which way to turn or if you just want to talk to someone. please pm if you wish too, I was actually dx in Dec last year, Im triple neg and had a lumpectomy, chemo is 6 sessions starting as I said, 11 March and then i have radiotherapy. I have long waist length hair and i am having it cut next week and raising money for charity, my way of taking control back from the BC, good luck to you both and please keep posting and smiling Shar xxxx

It depends on a few things, including what sort of op you have, because they want to be sure you’ve healed well enough before they start stressing your body again. If you have a lumpectomy then chemo can start fairly quickly, but they won’t set a start date until they’ve had the results of your op, just in case they don’t get clear margins. If they don’t, then they’ll probably do another op to try to get clear margins, and then you have to heal from that second op. If you have a mastectomy, particularly if you’re having reconstruction as well, then the recovery period could be longer depending on how well you heal and what sort of op you’ve had.

NICE Guidelines say it should start within 31 days, but they are GUIDELINES not rules set in stone, and your own healing is what counts most.

Thanks Shar and choccie muffin!

The reason I ask is that we have a holiday booked and I was hoping that 4 or 5 weeks post op thats what I will need but hoped thatit wouldn’t be chemo that stopped me going.
S’pose it all depends on how I feel and heal.
Next problem will be travel insurance!!

Katie let me know when you have your date and I’ll keep you informed about mine.

Take care xxxx

Hi Claire - I had lumpectomy, sentinel node biopsy and axillary lymph node dissection on 12th January. I had a few days booked for 3rd Feb to visit parents who live abroad and I was worried about travelling but my Consultant and BCN advised me to take the break before the chemo started. Even to the day of departure I was anxious but went ahead. So glad I did as it was nice to see them and I needed a break from all this. My first chemo was on the 10th of Feb. With regards to insurance I already had it in place and informed them. They were ok but declined any cover for the BC which is fair enough. But I do believe that there are specialist insurance firms who deal with this and would be interested to know if anyone has used them. Enjoy your break you deserve it but obviously only your consultant can give you the answer as to should you/shouldn’t you. All the best. Adi x