Hi
Is there anyone else on here with this type of BC?
This is what they told me verbatim
Invasive lobular cancer
Infiltration and metastasis in axila
Aggressive as Ki-67 is 90% (this website shows high as anything over 20%)
Chances of survival for 5 years - 50-50
Oestrogen positive but also progesterone positive
I read up on it and it seems it is far more likely to appear in the other breast and other areas of the body than other breast cancers
Due for unilateral MX early May
Hi Sascha
I was diagnosed with Invasive lobular BC in November 2011. I initially had a wide excision and x7LN removed, my LN were clear, but my excision was not. Has a MTX 3 weeks later, followed by chemo- FEC-T starting 21/12/11 and I finished 2 weeks ago. It is a terrible shock and roller coaster at the beginning, but better once you have a treatment plan.The MTX was not too bad, out of hosp in under 48hrs. Chemo is not fun, but it is do-able.( Join a thread on here for the month you start chemo) I now start tamoxifen next week.
Yes, having invasive lobular means your chances of getting it in other breast is 1 in 5 now, rather than 1 in 8.
Ask any questions you want.
My chances were 40% chance recurrence in next 10yrs , ie metasteses, if no chemo.
It is difficult, but it is all do-able,
xx
Hi Sascha,
my cancer wasn’t lobular, but I’ve left a comment on your other thread. You will find lots of ladies on here with lobular who are doing well - even some who had poor prognosis originally. Take care, you will get through this.
Ruth, how did you calculate the 1 in 8, 1 in 5?
WHat is Ki-67?
Sascha - I wanted to send my best wishes for your upcoming surgery and treatment.
As I read this thread, like Tina46 I was also wondering where the 1 in 5 and 1 in 8 figures come from.
My cancer was ductal not lobular but I’ve not heard of the 1 in 8 chance of it occuring in the other breast.
Surely the statistical likelihood of occurence in the other breast is completely individual depending on all sorts of fsctors? Or have I missed the point here?
Sascha, here is quite a good summary of ILC. Your specific recurrence risk will depend on your pathology, the general % rate of contralateral risk for ILC is 26%. (based on numours studies and higher than contralateral risk for IDC)
Your oncologist will explain your individual prognosis and treatment with you.
wccnote.com/womens-health/invasive-lobular-breast-carcinoma-pathology-and-genetics-reflected-by-mri-vol-4-number-2-march-4-2010/
I was diagnosed in 2010 and have recovered well from mx, recon & chemo, now on tamoxifen. It’s scary at the start, overwhelming even, but as time moves along, your treatment will get under way and although tough & challenging, there is a lot of support here to get you through.
Hi - I have lobular cancer too, second time now and still standing. Diagnosed 08, 2 wle’s radio, tamoxifen etc etc then mastectomy with immediate recon, then chemo then ooph - still here and back at work full time now No Evidence of Disease 
Please do not take to heart everything you read - also bear in mind that Lobular has a poorer prognosis generally because its bigger when its found if yours is local and no sign of spread then your chances are nearly as good an anyone elses.
Good luck with your surgery and treatment.
Ruby.x
no one has mentioned KI status to me and there is nothing about this on my path report ( i asked for a copy). is this linked to HER status. Is it normal to be given and KI status?
In relation to ILC, since diagnosis I think I have researched just about every article going. What is clear is that ILC generally has the same outlook as IDC. Even when presented as a larger tumor / tumors at diagnosis. It tends to take longer to leave the breast. In fact, there are studies which say ILC generally has a slightly better outlook than IDC, but not by much. ILC also tends to be grade 2 and highly receptive to hormones so can benefit from hormone therapy. Yes, size is a factor in determining prognosis, but that is only because size generally correaltes with node involvement ie the bigger the tumor the higher the chance of there being positive node/ nodes. As node involvement is one of the most important prognostic factors, then that is why size, as they say matters.
Hi Flower.
It have ILC and IDC in the same breast. I have a large tumour and Am am currently on EC chemo to shrink it.
Can I ask what you mean when you say ‘It takes longer to leave the breast?’
Thanks.
WS
Tina 46 and all us ILC ladies.
Tina, in that article you will see that there is a section which says :
"What do we know about the genetics and molecular features of invasive lobular carcinoma?
Most ILCs demonstrate a regional loss on chromosome 16."
You might have read the cancer research paper reporting on the breakthrough re mapping of breast cancer last week. See attached link. You will see at the bottom of that article that it refers to the characteristics of each of the new “clusters” identified. In that, it states that clusters which have a defect on chromosome 16 generally have a good prognostic outcome. I wonder if that means us ILC ladies???
Hi Flower, yes, I read the findings, too. I am weakly ER positive but my PR was not tested, it would have been nice to know!
i know my hospital doesn’t test for PR status if you ER +ve as treatments are designed to target ER status. As I am ER+ve, i don;t know if I am PR +ve or not !
Dear Sascha
It’s too late for me to go into detail tonight but some of what has been said here is concerning me. Things I have never heard before and as a 7 year LBC survivor with large lymph node involvement I thought I knew a lot. Main concerns: whilst lobular does have a higher risk than ductal in going to the other breast, my oncologist told me this should not concern me. 1 in 5 would be something to worry about. Lobular is usually highly ER+ and PR+. Although I understand this is not always the case. I am 100% ER+ and 100% PR+ hence I had tamoxifen for 5 years and am now on letrosole for 4 years. My hospital did not tell me my staging, grading or my ER and PR percentages, I had to ask. I was told lobular is no more likely to recur than ductal and in fact if the lobular cancer is highly ER+ and PR+ it can have a slightly better prognosis than ductal. The problem with lobular (and in my case - I was 4 years misdiagnosed) is that it is often diagnosed when it has reached a later stage due to the fact that it is difficult to diagnose and can be missed on mammograms.
I hope I have been helpful and it gives you encouragement to know I have survived 7 years and keeping well despite a poor prognosis.
Look after yourself and remember you are No. 1.
Jeannie
Hi Jeannie
Thank you, nothing more to say as its late and its been a hell of a day.
I did speak to the helpline and they told me they thought I had been given worse case scenario
Take care
Back again - I have looked into this in various places and it seems clear that ILC does prefer breast tissue to other tissue so it seems logical to my little brain that by removing the other breast as well I increase my chances. I was told I have PASH in my other breast from MRI and that increases the odds of getting BC four fold, now with the ILC type it seems my odds are doubled from that…
What do those of you with more experience think as I am thinking of really pushing the surgeon to do both at the same time, even though the idea turns my stomach?
haya, poor you, your Oncologist sounds like he needs to learn some bedside manners! I think he/she is being just a tad pessamistic…
I think it’s your decision alone whether you have a bilateral mastecomy, but, I would say that you sound a bit more upbeat and positive this morning, which is good. Doing research about options open to you from good reputable websites such as this one will help you. Doing whatever it takes to increase your chance of survival is a positive step forward and will also help you.
This research and talking to others gives you information which enables you to make a informed decision based on what is right for you, you are in control and moving forward…what a great place to be!
When you meet your Onc again take your partner, he/she can write notes and give you stregnth. if you are unhappy with him/her, can you ask if he can refer you to another onc for a second opinion?
Good luck with everything, will be thinking of you…xx
Thank you - I hope you are right. I have not met the oncologist yet! Only the breast gynae doc who deals with all the BC patients and does the actual surgery. He presents me to the cancer team apparently (this is Spain so its a bit different here) and said there is zero chance the treatment plan for me will be anything other than MX first and that will be ASAP as soon as the pre-op tests are done. Anticipated to be no later than 10 May.
He did say based on biopsy reports he thinks I am Stage IIB Grade 3.
I researched the info re my kind of cancer and all reputable sites seem to say the same thing
Its normally more advanced when diagnosed as it is hard to diagnose and that it generally prefers breast tissue, then ovaries.
My personal plan now is to get the surgery done asap, find out the definite results from those pathology reports and then look for an oncologist in a larger hospital and get at least two opinions on further treatment. There is just one attached to my local hospital and he is only here once a week - I will meet him to find out his thoughts then get a second opinion and decide if I will push for transfer to a Teaching Hospital where it has all the departments I will need in one place (other conditions complicate cancer treatment for me).