Hi,i am so scared just diagnosed 23rd dec with lobular breast cancer. Not picked up on mamogram 18 months ago as lobular hard to see without MRI which i have in next 2 weeks. I had dimpling in breast 2/3 years but felt for lumps and as mamogram ok thought it was ok. Now i am thinking it must have spread and im terrified they are going to say you only have a couple of months. Team say they are awaiting MRI results to see if i caan save my breast but im more worried about dying. Had neck pain 2 years but did whiplash my neck 2 years ago but having bone scan next thursday. I cant stop crying can anyone help. sorry to be negative everyone keeps saying be positive i dont know where to get the strength from.
Poor you for getting yourself so upset and thinking the worst, but you really are no different from the rest of us as I am sure that we all felt like this initially. Trust me when I say that you will find the strength from within yourself and you will surprise yourself. Remember that you are most certainly not alone on this website as there are plenty of us here too, some just like you who are waiting for their diagnosis and treatment plan, some who are further into their treatment and others who have finished their treatment and are out the other side.
Being positive isn’t easy I know but it really does help, and once you have got over the inital shock you will begin to calm down and realise that things can only get better.
Do phone the Helpline on 0808 800 600 - I will make sure that their opening hours go to the top of the postings when I have finished this message.
Try not to let your imagination go into overdrive and just take one day at a time and focus on what you do know rather than imagining the worst.
With love
Mazzalou x
Mazzalou, thanks for your comment it was nice that someone answered and it has made me feel better. I have just spoken to my son and i feel bit better. i will try and follow your advice as i am trying not to be hysterical. I am so cross that i thought dimpling was just cellulite and felt safe because of the mamogram. Anyway i must pick myself up and try and get some strength. Thanks again for answering x
Hi Hollygypsy
Good advice from Mazzalou. This is the worst time - once you know exactly what you are dealing with and get your treatment plan you will feel better and more in control - you just grit your teeth and get on with it.
Don’t know if it’s any comfort, but just over a year ago I was dx with a grade 3 lobular tumour. Mine was 5.5 x 2.5cm - but it hadn’t spread to my nodes. So one mx, recon, chemo and rads later, I’m still here, back at work full time, riding horses and doing all the things I was before. Still get a bit tired - but that’s to be expected for a while yet.
Good luck and take care
Dx
Hi,
I just wanted to say you are not alone in this.
I was diagnosed in December, and waiting to find out whether it has spread and what treatment I will need.
There is lots of support here, and remember this is a very common cancer, with lots of treatment options.
As my OH keeps saying to me take one day at a time.
Lynda
Hi
I’m 5 months into chemo now and reading your first post brought so so many memories back. My first post was called “just been diagnosed can’t stop the tears”. The response I got back from this website was overwhelming and I no longer felt alone/isolated.
So far I have found the not knowing part the hardest. Waiting to receive scan results was so hard. Knowing someone somewhere knew more about what was going on inside me drove me insane. I was convinced that my cancer had spread. However, once I knew my results, my treatment programme etc my “right lets get on with it and kick this disease into touch” attitude kicked in and yours will too.
Keep strong x
Hello again, Hollygypsy
I’m really pleased that you are feeling a bit better now and hope that you continue that way. Like DJ007 I was diagnosed with a 3.8cm grade 3, HER2+ cancer on April 1st. MX with reconstruction on 18th of April, then chemo of 3 FEC and 3 docetaxel, then 15 rads and carrying on with 3 weekly herceptin now until late summer 2012. My lymph nodes were also clear and I was also half-way between mammograms when I found my lump.
One of my chemo Nurses said that women who have a positive outlook do respond better to their treatment so that has to be your motivating force.
As Lynda said, this is a very common cancer with lots of treatment options. Remember that nearly 50,000 women in the UK alone go through what you and the rest of us are going through too, so join hands with us and we will see one another through it.
Keep smiling
Mazzalou x
Hi, another lobular lady here, it’s a bit sneaky the ILC, but MRI is the best way of finding the extent of the lobular infiltration, it doesn’t often cause defined lumps it grows in strands. Mine was multifocal, 2 areas, totalling 7cms, grade two, most ILC is ER+ and only rarely triple negative or HER+. I had mx&recon, chemo last year and on tamoxifen now. The uncertainty of knowing what lies ahead is the worst part. Once you get underway with your treatment plan you will feel better, there is so much support here & the helpline will answer any questions that might pop up. Don’t be afraid to ask, it may be helpful to take someone along to appointments with you, they can relay any information you may have missed back to you. Good luck! X
Just to add to what Tina46 says, when I was given my treatment plan my oncologist gave me a written copy of everything that she told me in terms of treatment, diagnosis, side effects etc etc. Take along pen and paper and either ask them to write it down as they go along or get you and whoever else is with you to make notes. Make sure that you ask them to explain or expand on anything that you don’t understand too. You will be assigned a Breast Care Nurse too who will be there to support you through your treatment too so make good use of them - they are a wonderful support.
Hi Hollygypsy and welcome to the BCC forums
In addition to the valuable support and information you have here I am posting a couple of links to further support BCC can offer you and also some if our publications which may help you to understand more about your diagnosis and treatments ahead:
breastcancercare.org.uk/diagnosis
As Mazzalou has kindly posted you are also welcome to call our helpline, it re opens Tuesday 3rd Jan and normal opening hours are Mon-Fri 9-5 and Sat 9-2 on 0808 800 6000
Take care
Lucy
Thankyou to all that have posted on my message; it has given me a lot of comfort as i did feel so alone. i am still confused and scared; but as so many of you said it is this waiting game. i dont really understand ER and triple negative and what all that means yet. i am trying to be braver today. one thing my cancer nurse told me on the phne was that the MRI will also determine if i am well enough for an operation although the dr said it was to assess the size and to see if he could avoid a masectomy; although to be honest i dont really care about the masectomy anymore. i am sorry to hear about the lady also diagnosd december and waiting like me. i cant get back to your name at the moment as my laptop is playing up. Thanks so much to all of you; you have been an enormous help and i did get some sleep last night x
Hi Hollygypsy,
I also was diagnosed with invasive lobular cancer in November. I just had a breast thickening I was aware of. My mammogram was clear but and it was also difficult to identify on MRI. I initially had a wide excision, but the edges were not clear so I then had to have mastectomy. I have now had my first chemotherapy
It is a real shock and a total roller coaster for the first month or so, you cannot believe it is happening to you. I still feel like that at times now, but I’m getting more used to it as time goes by.
I think it is the feeling that you have lost control
I would say that although I have had problems along the way, it has never been as bad as I thought it was going to be.
There are lots of us here in the same boat to support you.
Good Luck.
Fiona xx
H Hollygypsy I was in similar situation as you in May 2010. My advice is enjoy today tomorrow will take care of itself. Someone said to me “you only need light for the step you are on” and that is how i got through the last 7 months. My treatment finished 22 Dec. I just had about an inch of thickening of breast. I had mammogram 15 months before yet I was told in May when I got results of ultra sound, mammogram and biopsy “it” has been there for 9 years but became cancer in the last 2/3 years. Treatment for cancer is very good now. Alot of people are walking around not knowing they have it. We help each other. You are not alone. Good luck and try not to let the mind worry.
B x
Hollygypsy Lobular is less common and most people on the forum have ductal which is much easier to pick up on mammogram. I was really stupid and didn’t get round to rebooking a mammogram I missed 2 years before diagnosis but staff were really kind and said it probably would not have shown up. Diagnosed in May. But agreed to go on a trial of aromatase inhibitors + something else before surgery. I noticed some thickening a couple of months before Dx, and kept thinking I should get that mammogram (…) but it was only when it started to hurt and lymph nodes seemed inflamed I went to GP. Mamm and ultrasound seemed to suggest it was quite small but when I had MRI a few weeks later it was clear there were clusters of cells creeping away from the main tumour so surgeon went for mastectomy and as lymph nodes involved I had to have those cleared as well. NICE guidelines for lobular are to use MRI for sizing, as Tina says it’s sneaky. Also very slightly raised risk of having it in both breasts so they’ll check for that too. Unlikely they’ll do a whole chest MRI to check the health of your heart or lungs. Majority of lobs are oestrogen + (ER+) i.e. they use oestrogen to grow. Hence they respond to shutting off their supply with tamoxifen or AI, which is good.
I finally had Mx in October and am now 1/3 way through chemo. Ignore all the people who are having chemo first, lobs don’t respond well to chemo before surgery. Even though I had 8/15 lymph nodes affected they haven’t checked me for further spread so seem quite confident treatment will work.
With the difficulty of sizing lobular this process does seem to go on and for people like me things appear worse as the investigations go on but once you know the situation you’ll get a treatment plan and life will fit into a routine. You are right to be cool about Mx, because of the growth pattern of lobular people who have conservation surgery often end up having Mx anyway as Ruth did, and I felt very relieved to know it was all gone.
Good luck with the next few weeks and I really hope it turns out better than you’re fearing. Remember even though lobulars are often picked up later than ductals, once they are diagnosed there is evidence that the prognosis is slightly better.
hi all this is my first post after being diagnosed on20/12/11 with lobular bc.I had an mri scan last weds and see the consultant on thursday.Have been told to expect mastectomy and chemo.Feel very down at the moment but have found comments on here very helpful, its nice to know you are not the only one.
Mine was picked up on a routine mammogram that i had on 23/11/11.Ihad tests last year on the lump but told all was well, so this was a real shock.
Looking forward to being able to share my journey with others in the same boat
d
Hi Mollie43
Welcome to the Breast Cancer Care discussion forums, where I am sure you will get lots of good support from the many informed users of this site.
While you are waiting for replies I have put for you links to a couple of BCC’s publications you may find helpful.
Treating breast cancer:
www2.breastcancercare.org.uk/publications/treatment-and-side-effects/treating-breast-cancer-bcc4
Resource pack:
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early-breast-cancer-bcc145
Take care,
Jo, Facilitator
once again so many have you have been so kind and supportive with words that have made me feel stronger. i honestly do not know how i would have coped without this site and your support. Thankyou to all of you from the bottom of my heart, I hope the other ladies recently diagnosed are feeling a bit better. My husband had to go away today to work abroad so it will be hard without him. i will be glad to know i can come on here. Thankyou all xx
Hi Mollie43,
It is really difficult early on, there is a lot of waiting for results, and a lot of uncertainty about what is going to happen in the future. Don’t be too worried about mastectomy, I ended there with a second operation any way . If you need a mastectomy ask if you can have reconstruction at the same time, I initially forgot to ask, but then wasn’t allowed as they were not certain enough about the extent of spread. Something to look forward to in the future!!
Just remember that at each step you are closer to the end and finally getting rid of the cancer. I’ve had x1 chemo so far of FEC-T, only 5 to go.
There is lots of support here. Take care,
Fiona xx
Thanx for your positive comments, still don’t feel like its happening to me.Only 3 days towait to find out what happens next.M husband starts a new job next week but has to go to germany for a week so that will be hard but i’m sure with all the suppoert here it will help.
Hi to all of you recently diagnosed, my heart goes out to you as I know just how terrified and shocked you feel but mainly because I know it gets better when I really didn’t ever think it would and there were times when I didn’t know how I was going to put one foot in front of another for terror. I couldn’t look at my kids without my heart feeling like it was breaking. But here I am now and I don’t know where the time has gone. I was diagnosed with lobular cancer in April 2010 and I am sure with hindsight it had been around for about a year. It was in three places and I had two big and one small tumour, my sentinel node biopsy was clear but it proved to be wrong and I had 3 out of 23 nodes involved. I had MX chemo radiotherapy and now on letrozole. Its been a hard couple of years and I am still achy and stiff in my joints but hey I am here, back at work, riding my horse (after a fashion as I’m no athlete!!) and I have learnt a hell of a lot about myself. My top tips would be to breathe, deeply and a lot!! It really does calm you, get some sleep even if you need to take something to help, as its all more bearable when your not shattered, and remember that the more you believe you will get well the more chance you will - so banish those black thoughts as they do you no good, once your mx is out of the way (which I found a lot easier than I expected) you can wake up and think - right now I am getting better. My doc said to me that from this point on you are recovering and I held on to that. Keep checking here and if you want to chat don’t hesitate to send me a private email, think you can do that on this site. Lots of love and positive thoughts coming your way. xxxx