Invasive Lobular carcinoma, ER8, PR7, HER2 negative - Grade 2 - anyone have the same?

Hi Jacster and welcome to the forum, a club we’d never have chosen to join but a great place for support and shared experiences. I had invasive ductal rather than lobular but there are lots of folk here who’ve had lobular so I’m sure some will pop in soon. Mine was Grade 2 like yours and also ER8 and HER2 negative. Your proposed treatment plan is also similar to mine - I had lumpectomy and sentinel node biopsy, radiotherapy and hormone therapy. Still popping the pills (Anastrozole in my case but there are others) and am just over 5 years since diagnosis. 
It’s a huge shock to be diagnosed with cancer but I found it ‘better’ once treatment started. And was very glad to find this site as there’s so much support and friendship here. I’m still rattling around here after all that time! Love and hugs, HFxx

Thank you for responding. I really do appreciate it. Can I ask if your lymph nodes and margins were positive then?im trying to figure out what things I will need to consider whether it’s negative or positive. People seem to have the same treatment plan either way which is confusing… 

The tears seem to come when I least expect them… xx

Hi Jacster,

I agree it is a confusing & distressing time for you. Until the lump is out there is uncertainty regarding the full plan. Once they know what they are dealing with you will know what’s ahead. 

I have a similar diagnosis except I also had lymph node involvement. I had 8 rounds of chemo followed by 20 days radiotherapy. I’m now on Anastrozole for 5 years. Whilst on the hormones I will also get 6 monthly zolodronic infusion for the bones.

if you click on my name you can read my diagnosis. Hugs to you x

Hi Jacster welcome to the forum and I am so very sorry to hear how worried that you are. There are lots of different types of Breast Cancer but until you need to know its not something any of us ever think about so you will not be alone in that.

My Breast Cancer was Lobular and Grade 2 but I only knew this when the Lumpectomy was done and the results were back so Im surprised that they know all this at this early stage in the process.  Surgery proceeds with expectations, on their part, of finding what they think but with anything sometimes surprises jump up, like larger areas affected or when they take the biopsies they don't get enough of  a clear margin and have to repeat the biopsies and take more breasts tissue than had been initially thought. I hope that makes sense? The Er8 and the PR 7 means that it is a hormone receptive cancer therefore the pills they will give you will stop you producing these hormones and thereby minimise any risks for you. Radiotherapy will be preventative as well. I had mine 6 years ago and had 20 sessions but I know that there are shorter sessions now  where a larger does is given over less time, which is great news, so they may decide on that for you. 

Its ok t be scared and its ok to scream and yell at the world because it all feels very unfair but there is no rhyme nor reason to who gets breast cancer and who doesn't, its so random . 

Happy to answer any questions that you have as best I can but the best piece of advice I ever got was from someone who had been here before and they said "take one piece of the journey at a time" otherwise it will overwhelm you and she was so right.

Sending some huge big hugs meantime xxxxxx    

Hi Jacster , ask away that’s the great thing here, you can ask anything! Like the other lovely ladies have said, you can click on our usernames to read our profiles. It’s not compulsory to fill them in but useful, I think. As has been said, each stage and process informs the final ‘plan’. My sampled lymph nodes were clear and the surgeon felt he’d got clear margins so for me it was straight on to an oncology appointment to discuss radiotherapy and hormone treatment. Well I say straight on but I waited 6 weeks for the oncology appointment and a further 3 weeks for rads to start. Christmas and new year got in the way! I had 3 weeks of radiotherapy but like GRANNY59 said, many folk now have the one week regime. Rest assured that your team will discuss your case thoroughly and come up with a plan to suit your particular situation. It feels like it all takes forever but better that they get all the information they can. HFxx

Hi J,

Mine was similar, op in Dec last yr. Started on Letrozole but switched to Tamoxifen after 3 mths. I had 5:Sessions of radiotherapy in Feb. Oncotype DX said I wouldn't benefit from chemo. I scored 6 which gave me 11% chance of recurrence. 

It was a whirlwind of tests, treatment and emotional reactions. Just had my 1 yr Mammogram, I have osteoporosis and have now started Bisphosphonates. Waiting between each stage is torture but nothing can hurry it. Too many people in the system. Good luck with everything, it teaches you a lot about yourself and people. X

Ps I'm still dancing. Keep walking 30 mins x5 each week I was told. Routine and TLC crucial. 

Hi Jacster  I was sorry to read you have been diagnosed with lobular breast cancer. It must be a very scary time for you.

Earlier this year I had biopsies and they told me I had lobular Her2- ER+ and PR+  My ultrasound showed two lesions close together. I then had a MRI which showed it as one lesion.

I was given a choice of a wide local excision lumpectomy followed by 5 sessions of radiotherapy, or a mastectomy with no radiotherapy. I opted for the WLE and RT. They also took 4 sentinel nodes.

The surgeon made clear that it is harder to get clear margins around a lobular lesion and explained, were that to be the case, I would have to decide between re-excision to again try for clear margins, or mastectomy. I was pleased to get clear margins so no further surgery was needed.

A few days before surgery they bracketed the lesion with a mag seed each end so surgeon could find it easily. They also injected mag trace a blue dye through my nipple to show the sentinel nodes.

Two weeks after surgery at my results appointment I was told that the pathology report had confirmed the initial diagnosis. I often read of results being sent to USA for OncotypeDX test to see if chemo is advisable, but mine wasn’t.

i am now on an Aromatase Inhibitir, Anastrozole, for 5 years to lower my ER levels.

If you do Facebook there is a good group called Linking Lobular Ladies.

Things do get better once treatment plan is agreed.

Sending you a hug xx

Hi. Mine is similar diagnosis and treatment plan although I havent had confirmation of stage yet.  The one thing I have noticed is everything seems subject to change and even though I have a treatment plan the breast care nurse keeps telling me nothing is definite.  I had my lumpectomy on Friday and everything went well.  The lady beside me was in for a second op after 5 weeks so Im already adjusting my head to that possibility. I have definitely found reading up on procedures and treatments has helped me come to terms with whats ahead.  Liz O Reardon on tiktok has great info.  One step at a time is all you can do xx

Thank you so much I’ve been to see the surgeon and macmillan nurse today and feel strangely much calmer.. they explained everything to us and didn’t seem to mind being numbed with questions. 
i think my imagination had run away with me and I was imagining all sorts so your advice about a step at a time really helped. I tried really hard to focus on the first step (the surgery). I had a choice to make regarding the incision and even that helped because it made me feel more in control x