The waiting is making me stressed out.

Hi everyone thi sis my first post. I was referred for a breast scan by my GP and went on 3 Feb. Panic set in when they also did a scan and biopsy. Went back for results on 15 Feb to be told had Grade 2 invasive lobular Bc. Panic couldn’t take it all in and went home in shock. I was sent an appointment for an MRI scan which was on 23 Feb.
I go on Tuesday 1 March for the prognosis and treatment details. The worry about the results is taking over all my waking hours. As I sit here doing this all I can think is what if it’s a stage 4 cancer and has spread to other parts. I’m so frightened about Tuesday. I don’t know how I’m going to get through tomorrow especially the evening and Tueaday morning. At least the appointment is 9am. The other good thing is I’m going to be treated at Castle Hill Hospital in East Yorkshire (3 miles up the road) which is a new centre of excellence.
Secondly my son is a theraputic radiologist at the centre there so he is trying to help me understand it all.

I’m concerned the cancer might have spread and now I’m getting awful sharp pains in the effected area.

Should I be getting such pain with this type of cancer?

I’ll be back on to post once I have more information on Tuesday. Sorry to rant on so long just felt like writing it all down.

Oh Nellie,

Sorry that you’ve had to find us and also sorry I can’t help with your lobular type of cancer. Mine was DCIS & IDC - common as muck!

What I can empathize with is the waiting & not knowing - the true pits. The one thing I can guarantee is that there’s going to be loads of support for you now, and for your future treatment programme. I really hope that you get a pass from the Stage IV demon but, I think I’d really take comfort in knowing how close you are to a centre of excellence AND having your son ‘in the know’. I’ve no doubt that my team have my best interests at heart but I also believe that sort of being in ‘their gang’ can’t do any harm.

Best Wishes & lots of cyber hugs xx Chris xx

i am awaiting results next week too its bloody awful i know, i totally understand how u must feel . mine was grade 3 the most aggressive cancer and they managed to remove it and had chemo and rads after so try not to panic, be strongm it will really help u , hugs for tuesday i will be thinking of u and will cross everything and wait for your post
kaz xx

Hi Nellie
Know how you feel. I was diagnosed with invasive lobular 3 months ago on left side, then as it was lobular they looked more closely at the mammogram, they found another lobular on the right. Then went for MRI which then found another possible and I was recommended a bilateral mastectomy with immediate reconstruction on the basis that this 3rd spot ‘probably is’. But I’m a researcher and after a week or two I started feeling able to read up on it. Lobular can pop up all over the place, but is usually quite ‘treatable’. I found out that although I had more than one, they were small, very responsive to hormone therapy, and the third one was lobular carcinoma in situ which turned out to be ‘not cancer’ but a marker for being more susceptible - but I know that already. I also had a sentinel node biopsy and my nodes were negative so I put the brake on the mastecomoty and now, after what seems to be a bit of overinvestigation (but glad it happened), I am going in tomorrow for 2 lumpectomies for 2 bilateral stage I, node negative, hormome responsive lesions. What I have learned is not to go down the worst case scenario road until you know more. I’m actually quite ‘happy’ to be going in tomorrow for a small op, and hoping to live a very long life. So try not to come to any conclusions until you know all the details - but that’s what I did, probably par for the course. I do so hope you’ll get good news. I think lobular usually is stage 2 so until you know any more, really don’t go down the imaginary stage 4 road. And before the sentinel node biopsy I was convinced it was in my nodes cos I had pains under my left arm. But there you go, clean nodes, and am so pleased to be going in for the less drastic option. Your pain could well be coming from the biopsy.
So much good luck from me to you. Its just awful waiting for results, but I hope your son manages to put your mind at ease until you get your results.
Take care
Sheil

Hi,

I am exactly 1 year on from you, oh do I remember the terror. The only thing I can assure you of is that once you know where you are the terror subsides. I have had the whole lot thrown at me (I am 41) chem, ops x 2 and radio, In a week I will be having my expander implant replaced by something!! and my good booby uplifted. I have just come back from skiing and whilst my hair is not what I would like it to be my life is realllly good. the sight of spring sunshine fills me with more joy than I could explain.

We may never get the all clear but I tell myself its now behind me and I believe it. I am strong enough now to deal with anything coming my way my life is now lived doing what I want (used to just coast along not anymore!!) I am now happier than I have been in a long time because I now know what life is for.

i really do feel for you, but please believe me when I tell you that these dark days do pass and you will find the strengh to deal with all that is needed.

good luck (I also had a lobular 7.5cm so if you want to pm for any details please do.

sleep well and look to the future

Nicky

XXX

Hi kaz 36 may i pm you? i have grade 3 too and still trying to het head around it, didnt realise till now how many diff types of cancer in the breast there is. i am about to start chemo, 11 March. took control re hair and will have it cut and its being sponsorsed but scared the cancer will come back…Sharx

Hi Nellie and welcome to the BCC forums

In addition to the valuable support you have here please do call our helpline where you can talk through your concerns with someone in confidence which may help, the line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000.

I am posting a couple of links to some information published by BCC which you may find useful, one is a resource pack designed for those newly diagnosed and the other is information about invasive lobular breast cancer:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/76/

Take care
Lucy

Thanks everyone. Just got home from work which has kept my mind off it all day. It’s good to read all your comments and I feel a little better about tomorrow now. I won’t ramble on but promise as soon as I get the results and get back home tomorrow I’ll be back on.
Thanks for suport it’s great to know there are lots of ladies out there who know what you are feeling.

nellie xxxx

hi nellie,
have been thinking of u all morning let us know how u got on xxxxxx

Hi all

Well finally got back from the B Clinic at 11am. Packed Chris (hubby) back off to work. Had Sbest friend round for a long chat so now sat with a cuppa and peace and quiet with hair dye on the head.(well might as well get it done before the dreaded chemo)

Well the prognosis was better than I expected in one way as it doesn’t look as though it has spread at least to the other breast. The tumour is about 3-4cm which is OK I think. Until surgery they can’t say whether it has spread to lymph nodes etc. They think I will need chemo as well as radio and hormone therapy (ER positive and post meno)but the chemo isn’t 100% certain until they operate. Fingers crossed I don’t need it but my guess, from their discussion I probably will. That’s the part I really could do with out. Surgery doesn’t worry me too much.

Right, now what I know as of this moment in time. I definitely have to have a mastectomy. No date is fixed as I have to make a decision first on what type of reconstruction I want and when I want it. I’ve promised to let them know tomorrow after I’ve thought over the two options I have in mind. First option is an inflatated implant with reconstruction a year later after treatment. A shorter operation of about 1-2 hours for mx and implant. However have to go back after so many weeks to keep getting it inflated to stretch the skin. Initially this was going to be my option and have surgery for reconstruction say August 2012.
The second option is a reconstruction at the time of the mx which involves taking muscle from under the shoulder blade at the back and bringing it round to the breast at the front (plus a little bit more fiddling) This is four hour surgery and a little longer recovery but that’s it. No more surgery a year later. So now I am leaning more to that idea. I’ve no dates for any thing yet. They have said it will be in the next month. If I go for just the Mx and implant with delayed reconstruction it could be in 2 weeks. If I take the other option about 4-5 weeks I think.

Still trying to decide. They gave me a DVd to watch which has helped but I’m going to mull it over tonight with family. Has anyone any thoughts on the pros and cons of both options? I do feel a lot happier now and not worried about the surgery side or the mx. Actually as I’m a 38E cup there’s plenty to play with. If there can be a good side to all this it would be happing smaller boobs, something I’ve always wanted.

nellie

Hi Nellie

Just read through your posts as only joined yesterday after finding out I have bc. Firstly I am so sorry you are having such a terrible time but am so relieved to hear that the news is better than expected. I think if I were in your shoes I would go for the second longer op time option and get it over and done with so once you are home and recovery starts you know you are definately on the mend and you will not face further surgery after a year or so.

I think the recovery is the hardest part of it all and I would feel happier knowing surgery is over and I can concentrate on getting back to fitness and moving on with life. If you go back for the reconstruction after a year or so you may feel you cannot move on and the psychological effects may be harder to cope with. I know what you mean though, I am a 38E and yes there is plenty to play with and like you I too have always longed for smaller boobs.

Whatever you decide my love you know we are all behind you and that we will give you all the support and understanding you need, you are not alone.

Tracy x

Nellie, I didn’t have to make choices like you but I did learn that “go with your gut” was pretty useful - whatever you feel you are leaning towards for whatever reason, cos you are the one who has to do the recovery and exercises etc so its good if you can feel as good about the surgery as its possible to feel.
hope it works out for you, Nicola

Thanks Tracey moorcow and everyone. It’s great having you all around to listen and offer up your thoughts and advice.

I spent the day trying to decide what to do. finally made my mind up and then asked the family (without telling them my choice) They all went for the same choice. So I’m going for the Ld flap surgery as yes better to get it all over with in one go (or maybe two if the other boob has to be made smaller). Once your under do you care if it’s 2 hours or 4 hours and at least you wake up with 2 boobs again.
I’m quite up beat about it now so thats helping. Rang the clinic today to tell them my choice and I have an appointment at the surgeons reconstruction clinic next Tuesday. So hopefully I’ll find out a little more about the procedure and maybe a date too.

I’ll keep reading the forums and certainly report back next Tuesday.
I would like to say that this site helped me make my finally choice. I read some of the stories about the mx and inflatable procedure with reconstruction delayed for a year. I realised then this wasn’t for me. Thanks to everyone for helping me through this.

nellie xx

Dearest Nellie

Congratulations on making your decision, you deserve a huge pat on the back as I know it has not been any easy one. I agree get it all over and done with then you can move on.

I totally agree with you the help and support on this forum is invaluable and it makes a huge amount of difference to know that there are people out there who totally understand.

Good luck next Tuesday I will be thinking of you.

Tracy xx

Hi everyone. Glad to see we are back on line again. I’ve missed the forum as things have moved on a pace over the last week.

Went in and had my sentinel node biopsy on Thursday. Went Ok and Friday I felt fine. however I think it’s caught up with me today as I’m goosed and ache under the arm a little. Results come back at the end of the week (around the 25th). they’ve moved by mx and LD reconstruction from 28th to 31 March. Well it gives be a little more time to organise the family etc. I think I’;m getting to the scarry bit now so the stress levels are starting to rise and the mind working overtime.

As I’m not use to forums can anyone tell me if I am now suppose to post under a different heading or just continue with this discussion.

I’ve got a few questions I’d like to ask about post surgery, bras etc but don’t want to do it the wrong way round.

It’s good to be able to talk again, hope everyone is Ok out there.

Nellie xx