Newly diagnosed - 2 days ago - invasive lobular carcinoma 11mm grade II. Feeling scared out of my wits. Lost lovely hubby to cancer 9 months ago. Would appreciate any inspiration and support.
Hello Moonshine and welcome to the forums,
I am sure you will receive support and information from your fellow users shortly. In addition, Breast Cancer Care have written a ‘Resources Pack’ for anyone newly diagnosed with breast cancer which you may find helpful to read, it is filled with information to help you better understand your diagnosis, test results and the various treatments available. You can order a free copy from the following link or you can ask for a copy to be sent to you via our helpline:
breastcancercare.org.uk//content.php?page_id=7514
There is information in the pack about our other support services, including our helpline which is on 0808 800 6000, you may find this useful to use at some point if you need to talk anything through, or just need someone to lend an understanding ear. Alternatively, if you prefer you can use email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
Best wishes
Lucy
Hello Moonshine
There is a few of us lobular ladies out there. There is few threads with lobular theme on going as well. I was diagnosed this year Feb, have had mastectomy and now nearly at end of chemo. It is uncommon. 10% of breast cancers.
I was very scared and anxious and waiting for results, treatments etc is horrible. You may have hundreds of questions or be just too numb. Keep posting what youre thoughts and worries are and someone will have an answer for you.
You will have treatment and it sounds very small. All good.
I’ll look out for progress.
Lyn x
Thanks Lyn, nice to know I’m not alone. Was told on Tuesday my diagnosis - BS says he wants MRI first because US doesn’t always show true size of lobulars - hope it’s not much bigger. Was told there is 4 week waiting list then surgery will be about 2 weeks later. I can’t stand the waiting - just wanna get on with this now. Today a strange thing happened - I phoned the MRI unit and asked how much private scan would be, they said £352. As it’s friday I said I’ll think about it over weekend. Then about an hour later - they phoned me and said they had had cancellation could I come immediately .So now I’ve had it done - one little step further I suppose. Will get results in about 2 weeks. At first I felt really scared that I had got the “uncommon swine” but now I know there are others. This has been a difficult year losing my husband, and facing this on my own. Now my lovely children only have me I really really need to be around, know what I’m saying - life really throws it at me sometimes. Trying to stay strong.
Tracey
just brought a thread up for you that you might find useful, probably just below this one now - called ‘anyone with lobulqr cancer?’
Hi moonshine,
I just want to say hang in there. Life throws some real toughies at us - and for you to have this so soon after the death of your hubby is just so hard. I was dx 18 years ago - back in 1990. I have had a few ups and downs including a couple of lobular tumours but still planning to be around for a good few years yet. That was great to read your hospital came up with the cancellation for you cos the waiting really is one of the hardest things. Keep in touch with us all and let us know how things go for you.
Sending a cyber hug
Dawnhc
xxx
Hi Dawn - thanks - 18 years wow - you have done so well - what is your current situation if you don’t mind me asking. I am 10 year survivor of melignant melanoma - can I beat this devil twice, feel my luck is running out but I was already at a low ebb and this has just knocked me off my feet. Keep getting pains in that boob under and down arm, I think it’s everywhere at the moment and imagining the worst scenario. I have lost half a stone in these last couple of weeks - just haven’t got the appetite, but hey just took my girls for a McDonalds and it smelt really good and I’ve just wolfed down a Big Mac and a Mcflurry - not very healtly I know but at least I ate something.
Love Tracey xxxxxxxxxxxxxxxxx
Hi again Tracey,
I know what you mean about just having enjoyed something to eat. At the moment I am having problems because for the past 6 years I have had extensive bone mets and for the first time really a bit of a flair up. I have just completed 5 sessions of radiotherapy on my lower spine & hip and for the first time in a few weeks the pain has been a lot better and I am at last enjoying my food for the first time this week :). I think the pain, the rads and the medication have made me feel quite sick. The bone mets generally have caused me very few problems - I just make sure I dont overdo things. As I look back over the years (and I am sure you do some of this after 10 years on) I am amazed at how many things I never thought I would live to see have all come to pass. Simple things but what a lot of pleasure they bring.
Do you have a date yet for your surgery? Which part of the country are you? I am in the south east and under the Royal Marsden so have been well looked after all these years.
love Dawnhc
xxx
Hi moonshine
I was diagnosed in october 06, had bilaterals mastectomy and reconstruction in january 07 then my sister was diagnosed in june 07 ,i only had to have rads but my sister had to have both rads and chemo, but we are fine now ,so keep your chin up, you will get through this even though at the moment you dont think so ,god bless.
love gobby
Hi girls, no I don’t have date for surgery yet, guess that will be decided when I get results of MRI. Dawn I’m so glad you have been feeling a bit better this week. I am not under the R. Marsden but I know it’s brilliant. I am in Chelmsford, Essex, Do they give you steroids to help with your appetite .
Yes, you are so right that I do look back and to be honest if someone had told me at that time I would have another ten years I would of been pleased with that at least, but I didn’t count on my hubby going before me - you never know how things are gonna turn out in this life. I thought I wouldn’t see my son graduate, but I did and my husband didn’t. Despite all the sadness there is still so much good in my life and everyday is a blessing. Life is precious.
Gobby - lovely to hear that you and your sister are doing so well, you all give me strength and inspiration.
Love Tracey xxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Tracey
Just to let you know - I was diagnosed with a lobular tumour (21mm, don’t know the grade) in August 2003 after my first mammogram. And I am still going strong!
Will be thinking of you. All best wishes.
Gwyn
Gwyn - thanks so much - YOU KEEP GOING GIRL !!!
I just wanted to say that I was diagnosed with Lobular C in June 2005 (the day before we won the olympic bid and the day after my dads birthday!). I thought the end of the world had arrived and I was really scared of the unknown, especially when the consultant told me that i had a ‘rare’ type of Cancer. The waiting part is definately the worst. I just wanted to say that I had a mastectomy, chemotherapy and radiotherapy, reconstruction, nipple reconstruction and now awaiting my tattooe. I would never have believed I would have got to this stage three years ago, but I have and am determined to be around for a lot longer! You will find loads of support on this website and encouragement from everybody. I wish you well and am thinking of you.
love Gill
Just to say I was diagnosed with lobular in Feb 08. Had mastectomy & node removal. Now ploughing my way through chemo. About to have 3rd FEC day after tomorrow. I am 56.
Hi Moonshine
I was diagnosed in Sept last year 4.2 cm lobular invasive BC. Have had WLE and SNB - both clear and have gone through chemo and radiotherapy and feeling good. Hair is thickening up nicely.
Waiting is hard and I found once treatment started I coped better.
This site has been invaulable to me even though I don’t post very often.
Hope all goes well for you and let us know how you progress.
Val
hi,
I had pathology results yesterday, they said grade 1, 1 cm, 1 lymph node affected and “more suggestive of ductal carcinoma” when they originally said it was lobular, I asked the consultant which one it was and he said “take your pick”! They didn’t get clear margins on WLE and so I am booked for re-excision on 18th August. Seroma has been drained twice and burst twice in the night, TX Maxx are doing well out of me for new bed sheets, buy your TX Maxx shares quick at any price! I am 36. Chemo, rads and Tamoxifen to look forward to, but the waiting has been the worst, like everyone has said treatment is easier.
Hope it’s gettig easier for you, let us know how you get on,
Irina xx
Hi Tracey,
Really sorry to hear about the death of your husband, it must be very hard for you to deal with this diagnosis on top of everything else.
I’m not only another lobular lady but also an Essex girl!!! I was diagnosed in april 06, grade 2 but unfortunately 10/12 nodes affected. Anyway had mastectomy, chemo, rads and then reconstruction last year, which I’m very pleased with, and I’m feeling well.
Anyway I hope you’ve got a date for your surgery, do you have the results of the MRI yet? The waiting for results and treatment is one of the worst things as far as I’m concerned…enough to send you barking mad!
Take care.
Claire x
Hi all,
I am also lobular cancer. Diagnosed on 14th May and surgery on 4th July. Had mastectomy and reconstruction. Was told that although lobular cancer is difficult to detect it is also easier to treat so everyone HANG ONTO THAT!!
Mine was a grade 3 but no lymph node involvement so looking good. I will be starting chemo on 20th August but this is more a preventative than a cure as they are sure all cancer was removed. Thankfully will not need radiotherapy.
Moonshine, I can’t imagine what you’re going through. All I can say is I symapthise, the waiting is awful, but the time will come when treatment starts and then you can feel that it is under control.
Best wishes to you all
Valentine
You lovely, lovely girls,
Thanks all so much for your encouragment and support. I think I have just about got over the initial shock now, but the worrying is endless. I’m so sorry you have all had to have this to, and glad (hopefully) that you are all doing okay. Now I’ve had the MRI - of course I’m getting in a state about that, what is it gonna show!!
Did anyone else have one prior to surgery? Will find out results 5th Tuesday and will know then what type of surgery I’m having. I really think this site has kept me sane - no one knows how you really feel unless it has happened to them. Like Lily200 said on another thread - it’s like safety in numbers!!
Valentine - how is it easier to treat? please tell me as I can only find out that lobular doesn’t respond to chemo as well as ductal. Yikes!!! got stop going on the bloody net. I know it is more likely to spread to other breast aswell - is that right? hope you gals more down the line than me don’t mind me asking all these questions. I found mine easily - very hard lump - feels about the size of a paving slab - with overlying dimpling - dent. |
Never knew before this breast cancer business is so complicated - just thought breast cancer was breast cancer if you know what I mean. Shows how ignorant I was, I didn’t even know there were different types. Clare - so glad you are doing so well 2 years on. How does it affect you if lymph nodes are involved - does it just mean more chemo? glad to have another Essex girl around, I’ve got the name but I’ve long given up the white stilletoes and handbag!!!
Irina - cor talk about pick n’ mix. You’d think they would know would you? It sounds small and low grade so all good I hope, best wishes for next op on 18th - stay in touch pleaseeeeeeeeeeeee.
And that applies to all of you girls - if you can bear me!!
Feeling hot and muggy today - have got two fans blowing on me - just feels like central heating. Now i bloody raining so I can’t take my lovely little pup for walk down river - which is the only other thing keeping me sane apart from you lot. Maybe I’ll be able to later.
Got to think about getting some dinner - kids are all starving! could be a trip down the Kentucky - Well it’s too hot to cook - well I deserva a night off - well it saves on the washing up - do you think I sound guilty? Ha Ha
Speak to you all again soon
With much love Traceyxxxxxxxx
Tracey Hi!
sorry you have to join our club ~ you will find lots of support on this site ~ you are not alone. I was DX 21st Dec 04 with ILC grade 2 (Happy Christmas Rosie) and like you hadn’t heard of it. I started off with chemo then had my surgery in the July then rads the following October ~ Ive had recon, Tamoxifen and changed to Arimidex last Nov and TOUCH WOOD ~ am well. Its a long haul and my advice is to take each day at a time ~ bite sized chunks ~ think only about your next appointment and try not to worry about ‘what ifs and maybes’ I didn’t do any research until I was half way through chemo ~ didn’t want to scare myself! now I know quit a bit!! take care. Rosemary xx