Grade 2 Invasive Lobular Diagnosis

Hi Cazza! One step at a time is the way to go! The main thing to remember is that BC is a very treatable/curable condition.I had my shocking diagnosis in November last year and was terrified! However, 8 months on, I’m done! I had a mastectomy, you may get away with a lumpectomy, most do! Anyway I had chemo and radiotherapy and am now on hormone pills. I feel great and relieved for it all to be over. Chemo isn’t so bad, it’s a means to an end, the worst bit is the hair loss; having said that I didn’t care about it before, if it was necessary to get me through this; so I thought bring it on…. There’s plenty of ways to get through that, I’m only bothered about it now because I feel like I’m well again and want it back, because it’s the only reminder I have of the cancer, it’s coming though. Take one day at a time and don’t go to that place in your head where you wonder “what if” just think that you feel well and enjoy that and take any difficult days when/if they come! The treatment really may not be as bad as you imagine, I found it surprisingly OK (I was/am very fit, an avid exerciser) and, more importantly, it’s got me here, healthy and happy! Being fit is no guarantee to avoiding illness, but it certainly makes recovery and treatment much easier. All the best, keep smiling xxxx

Hi Mazz

Thanks for taking the time to respond. I'll pay it forward when I'm done. 

Did you have lymph node clearance and if so how did you find it? 

Can I ask what grade and stage you were?  Did this grading/staging change after MRI or surgery?

Sorry for all the Qs but not much info out there on accuracy of initial diagnosis and while everyone is different it just helps to know about other people's journeys.

This site is amazing. Some strong people around!

I never had an MRI, my cancer was stage 2, ER+ HER- with no lymph node involvement. I had one node taken during my mastectomy which was clear. They told me my grading after biopsy, but they had more accurate results after my mastectomy, they sent it for an oncotype score which was borderline (25 or under is best but I was 28, so offered me chemotherapy, which I decided to have), it’s not that bad, or at least not for me, we’re all different. I was prescribed 6, but stopped after 4. Then 5 sessions of radiotherapy. I’m done now! I’ve heard that sometimes the lymph node clearance can be a bugger, try ask for them to take as few as possible, although not sure how that works, but I think they can get a good idea if the give you a scan! Best of luck! You kick it’s arse! xxxxx

Thanks so much Mazz. Glad you're all sorted!

Hi Cazza I have inflammatory breast cancer stage 3 but it was also invasive lobular grade 2. I’m also er\pr and Her+  I have just had a mastectomy and axillary node clearance and I find the mastectomy scar fairly numb but I am finding under the arm the most uncomfortable part. They have to cut around nerves to take out the nodes. Other people find it is numb or both numb and painful but I use a mastectomy pillow and do the exercises daily so that i can get my arm up for radiotherapy and I find it helps to keep it moving. Everyone’s treatment is different and some people manage chemo really well and others it can be harder but tell the staff how you feel and they can adjust your dose or give you extra meds to take home to help with the side effects. Do you know if you are HER positive if you are then I think that they need to give you chemo so that they can give you trastuzamab ? Take each day as it comes hun. Jxxx

Hi J, thx so much for your response!

Are you going to have chemo or escaped it? I ask because I thought chemo came before radio?

I'm HER neg. If the lymph node number doesn't change I get the feeling I'll be borderline for needing chemo. That will be a tough decision - put toxin in my body for very little value or regret it later if it comes back!!

I hope aux node clearance isn't too life changing. I'm quite small so a balloon arm would be noticeable

You sound like you are taking it all in your stride. Do you have your op path results back and all as they thought?

One thing about Lobular I've read about is that the size they think it is initially can change after MRI!

Hate waiting and petrified that while waiting a month for op the cancer could spread more!!

Hi cazza, I had 4 months of chemo before the op as it was also inflammatory. Lobular cancer grows in sheets and is harder to see in mammograms and ultrasound. The mri will hopefully give them a clearer picture. I know your mind is going to all places at the moment and when you actually have a treatment plan and you will know exactly what is happening. At the beginning people said to me that you will be surprised how quickly your treatment will go and I didn’t believe them but it really has. Chemo was hard but doable and some people have no problem with it but you may not need it. I got a fantastic result of a complete pathological response to the chemo so i am now getting 15 sessions of radiotherapy to mop up any stray cells and 10 years of hormone blockers. Will you let me know how you get on? Sending healing hugs. I did find that finding something positive in each day no matter how small really helped. Do some nice things before your treatment starts. Jxxx

Hi

I had a similar diagnosis although mine was ductal not lobular but Grade 2 and 1 lymph node involved. I had a full axially clearance in April which showed no further spread so I managed to avoid the chemo. I really didn’t want all the lymph nodes gone and was terrified about lymphdema and other side effects. 
At the time the node clearance was a more unpleasant procedure and recovery took longer than the therapeutic mammoplasty I had for the lump and my arm still isn’t quite back to normal. However I have had no signs of lymphdema and started back weight training very cautiously 4 weeks ago and have just started back running again very cautiously.

So in summary whilst none of it is pleasant, it’s all doable and it’s amazing how quickly you can return to some level of physical normality! The mental stuff takes longer or it has for me but I’m getting there on that now as well. Fingers crossed you can avoid chemo but if you can’t as others on here have said you will get through it and this too shall pass.

Good luck with your treatment

Aly x

Hi J, will defo update. I'm so pleased you had a good result to chemo. A weight off your mind and makes the down times worth it I suspect. I'm just about to tuck into Vic Derbyshires book! Something to occupy the mind as I've felt really off with nusea and anxiety, with back pain near liver (and of course that little voice tells you it's spread before you've actually had a chance to fight it! X

Your story is really encouraging. The nurse did say, to encourage me I think, that with my build and fitness I might not experience any side affects. I just hate not being active! I'm praying they tell me only one lymph gland affected after the op. The ultrasound only showed one reactive but fear if there is one there could be others.... and the your mind wonders to what if they all are, where did it go from there!! I keep trying to rationalise how could a small 1.5 lump cause that much spread. Then you google and pop down into a dark hole ggrrrrhh!