Newly diagnosed invasive lobular breast cancer

Hi I'm sorry about your diagnosis. But you're in the right place to find some support. I was diagnosed with the same (same grade too) in May. I had surgery in June and radiotherapy in November. At some point soon they'll start me on hormone blockers. It's very much still a learning curve for me as things at my hospital move very slowly compared to some others, and my various specialists have given me conflicting information throughout, I don't think they've been in agreement with each other. Hopefully your team will be a bit more on the ball. But if you find you've got questions, my advice is to start by asking your breast care team. Some they'll be able to answer, some they might not. I have found it helpful to listen to my doctors and then seek out real life patient experiences, because they seem to differ greatly and I'm someone who likes to know it all so I feel prepared.

What I have learned is that even the same category of cancer can vary greatly from person to person which means interventions that are suitable for one person will be different to what is offered to the next person. Your medical team will explain the various treatments options for you to consider when they have all their results and have discussed it as a team. 

A couple of things I found very helpful amid all this, is the Macmillan telephone helpline - just to talk about my confusion and to help me get my head clear. I'm not really a talker, more of a reader, thinker and writer,  but I needed an outlet that wouldn't burden my loved ones and that I could just waffle about my feelings of being overwhelmed and there being so many unknowns.  The Macmillan helpline people were wonderful and I felt much better after our chat.

Secondly is the Breastcancer.org resources and forum. It's an American (but also international) forum but they have very detailed resources to help learn about specific cancer types, tips on how to prepare for any forthcoming treatments that have been collated from patient experience, and an ILC specific sub forum. 

If you need to chat online, feel free to message me. I'm just a patient going through it, I have no expertise. But if you would like to vent, by all means message me.

Take care  

Hi Leanne It looks like you have had some good responses from all the lovely people on here. You can see you are definitely not alone. I was diagnosed initially with one 14mm ILC but they did find a second one which was only 5mm. So treatment changed from lumpectomy and radiotherapy and hormone treatment to mastectomy. I had reconstruction stuff the same time ( a tram flap they use your tummy muscle and tissue). I got my results the other week. No nodes effected but increase in size and grade. One was 9 mm grade 2 but other 16mm grade 3. Even though still small they are doing the oncotype dx test as it’s grade 3. So just waiting the results to see about chemo. They will start me on Letrozole after Chemo or if not needed after Christmas for 5 years as oestrogen positive.
I was done fairly quickly. Diagnosed early September and operation first week in November. I am still recovering from op as it was major surgery I was borderline for it as I had a high BMI. But it does mean you wake up with a cleavage still. However, the main thing is getting rid of the growths. Invasive does mean that it’s growing outside of the lobes but good if it’s caught early like yours.

you’ll see everyone’s journey, treatment and process are all different but with the end goal attached to get us cancer free.

I hope you get some more answers soon . You’ll feel more in control when you have a plan in place . 

I wish you all the best 

Xx

Hi Leanne thank you for your best wishes.

All journeys and recovery are different but I can honestly say the mastectomy has been fairly painless for me x

Hi Rynie 

thanks for your reply and sorry to hear you’re going through this too. Yes it’s all very scary I suppose at each stage but I was spookily diagnosed the same day as a close friend of mine, she was actually in the clinic at the same time so had the same surgeon dealing with her and although I don’t know what type of breast cancer she has, hers is only 4 mm and already she has had her pre op checks and the metal tag in place. She also didn’t have to have a MRI and can’t understand why I’m having one. However it’s waiting for the MRI that’s causing me to fall behind her and that’s adding to my worries since mine is bigger and was told it would likely be even bigger after the MRI. They must suspect some sort of spread that they can’t see on ultrasound. I got diagnosed in October so the wait seems intolerable and I have no idea when I’ll get a date for surgery as I still have to see the surgeon again after the MRI to get the results and plan, then pre op checks. I just hope it doesn’t grow arms and legs before then. Anyway thanks for sharing your story and I wish you well in your journey too. One day I hope I can be a support to others on here but right now I’m just trying to collect as much info as I can while learning to navigate this site. It’s far from simple. Take care and best wishes x

Hi Moominancestor,

thanks for your reply and support. I’m feeling a bit overwhelmed with how many have replied to my original post despite the fact everyone is going through their own personal journey. Everyone has been so kind and reassuring and I actually feel a little bit more in control now, at least until the next stage. I think one thing I’m learning is not to compare myself to everyone else as you are right, we are all different, even with the same diagnosis. I do find it worrying though that health professionals can have so many different opinions about one patient and also that all hospitals do not proceed with the same sense of urgency. I’m getting quite concerned about the covid and how it is affecting waiting times due to staff shortages or sickness but that is something I cannot control and maybe just need to accept it.

You have given me lots of good advice on links to check out and I shall definitely look into them soon. Is the macmillan telephone helpline the same as contacting the breast care nurses as I have a number for them.? I haven’t contacted them yet as I’m not sure what I need to ask them and don’t want to bombard them with lots of stupid questions. I think I’m a bit like you in that I would prefer to know everything upfront so that I can digest it all in my own time. A previous oncologist I had for a different cancer was very evasive and I lost all trust in her and ended up doing my own research through Dr Google which was frightening, more so because I had to learn that way and not from someone who was supposed to be looking after me, so that has not  helped me so far as I start this new journey. You have to be able to trust your doctor who is making decisions about your life. Anyway sorry for that monologue. I hope you continue well with your treatment and eventual return to good health. Take care and thanks again. X

No need to apologise, Leanne.

You asked about breast care nurses. If your hospital uses the same terms as mine, the Breast Care Nurses are members of hospital staff that work in the Breast Care Unit (where mammograms are done, they also look after patients before and after surgery and other treatments, sort out prosthetics (I call my prosthetic my Stunt Boob) and generally answer questions and be supportive during difficult appointments like results appointments.

Macmillan nurses are something different, they work for the Macmillan charity and are associated with hospitals. Some hospitals put patients in touch with a Macmillan nurse (mine didn't). I remember my nan also had  Macmillan nurse helping her with home care.

Then there's the Macmillan helpline which is separate again. Macmillan is the charity that runs this forum. Their telephone helpline is staffed by different sorts of people depending on what you need to discuss, such as finance and benefits advisors, or Macmillan nurses. I have spoken to both and they've been absolutely brilliant in letting me just ramble and helping me put my concerns into some sort of order. You can talk to them anonymously if you want to, or tell them who you are if you prefer. I'll look up their number in a sec and post it below. You can talk with them about anything. 

I'm sorry you didn't have a positive experience with that previous oncologist. I hope you have someone you can feel you can trust more this time.

Take care.

Here's the Macmillan helpline number. They're open 8am-8pm. 

0808 808 0000

Sorry this is your 2nd cancer experience.

I can't offer much advice, I'm at about the same stage as you. Diagnosed in November, I had excision 2 weeks ago but now need a mastectomy,  apparently the problem with this cancer is that not all of it can be visualised on MRI or ultrasound  as microscopic areas can be invisible and only found in pathology. I understand grade 2 doesn't progress rapidly so don't panic. I've found next steps are not unduly delayed, my mastectomy is already scheduled for 5 January. 

Hi Leanne, I’ve also been diagnosed with Invasive lobular cancer in Nov, Grade 2 but told my stage would be confirmed after surgery which is on 5th Jan. I’ve had CT scan, bone scan and MRI and also been taking Letrozole since Nov after a Goserekin injections as although 54 not yet through menopause. After MRI my lump size increased from 5cm to 8cm. As I am a EE cup size I am having a lumpectomy on the right side and  left side reduced at same time by a plastic surgeon, rather than a mastectomy as they’ve plenty to work with. So far all biopsies and MRI show not in a lymph nodes but consultant has warned me can’t be certain until pathology back, and that will determine if need chemo or just radio. I’ve been like you constant round of appts but keeping positive and just think it’s going to be 4-6 months of crap but then I’ll be fine, so I can cope with that - just take one day at a time xx

Hi Leanne4,

I too have been diagnosed with lobular cancer , although wasn’t detected on my mammogram the previous year, large tumour 9.5cm , had mastectomy and just recovering  from auxiliary node clearance and nervously waiting to find out extent of lymph node involvement.

it’s all very scary and the waiting for test results is awful but the ladies on this forum are so supportive and helpful.

Lobular cancer is supposed to be a rarer type but my nurse told me they are seeing so many more ladies with this type of cancer recently .

so sorry to hear this is your second experience of cancer, once is bad enough so I can’t imagine how you must be feeling .