Large lobular tumour

Hi Missi K. I’m due in surgery on Monday for full left breast removal. Lobular also and although only about 2 cm can be felt the various scans suggest 6-10 cm I’ve been reassured by consultant that no spread detected in CT or MRI scans and I directly asked if they could see any evidence of it spreading into chest wall since it goes that way but he said not, just possibly some lesions. I guess nothing is certain until they operate and even then will have to wait weeks for test results from lymph nodes. 
this whole journey has only been about 7 weeks so far but it feels like forever. I’ve got a lot of support talking to friends (surprised by how many have themselves been affected!), but if you haven’t got anyone close then maybe try the McMillan help line. One of my best friends volunteers on there and she has been amazing so I’m sure all her colleagues will be too. 
“Keep on keeping on” We’re all in good hands. 

Thankyou so much for your reply. Most people’s tumours I’ve read on here seem much smaller in comparison.

I’ve not told anyone about my diagnosis as don’t want my mum to know until it’s absolutely necessary as she is ill herself , waiting for a big operation so I really don’t want her worrying about me on top of that.

Also don’t want to worry my adult sons . I know I will have to tell them at some point , just wouldn’t be fair of me to tell anyone else before them.

Good luck with your operation Monday, it’s an odd feeling waking up without breast but also good knowing the tumour has been removed. I was a little worried not having drains but so far so good.

Thankyou for your advice , I may try the McMillan helpline . I know they do such wonderful work.

wishing you the best of luck for Monday x

Hi Missi k

I had a large HER2 positive lump, 5.2cm at diagnosis, however by the time my neoaduvant chemo started about 6 weeks later, it had definitely gown, as it was causing a lot of pressure in my boob. I also had one positive node diagnosed by needle biopsy.

I remember  being convinced that it would have spread everywhere, for the same reasons as you are.

However, MRI and CT showed no evidence of spread and oncologist said that they considered it to be only local spread. It is therefore being treated as 'curable'. Chemo worked so well that that I got a complete pathological clearance. They did a lumpectomy, took 6 nodes, and 2 showed evidence of previously being cancerous as well. However, all the tissues removed from lump area and nodes were completely clear.

As far as is known, I am cancer free. I still get herceptin and pertuzumab every three weeks and this will go on till March 2022  [had 9 cycles and have 9 more to go] and bisphosphonates [two more years to go] as a precaution to mop up any stray cells which might have gone wandering off elsewhere. 

So as far as can be known, no spread everywhere, in spite of big lump and a known positive node at the outset.

The oncologist ran the predict test after my chemo, surgery and radiotherapy. She said I have good prospects of 10 year survival, [my chances are more than 79% probability of surviving - I am in my mid 60s] providing I keep up with the meds above and Letrozole [for 5 years], which I have been taking for about 4/5 months.

Don't prejudge your own situation. Easy for me to say, but very hard for you not to do. The waiting for tests and results is the worst time. It is absolute torture.

Thinking of you and wishing you all the best

WallyDug

Hi, Wallydug, 

I’m really pleased you’ve had such a positive outcome. It does help so much to hear positive stories . 
The waiting is definitely the worst part. All I know is mine is Er+and Pr+ which Iv read doesn’t respond very well to chemo .

I’ve only had breast mri and awaiting results for bone scan (only had this as I have very painful neck at times) 

Hope you are not suffering with any side effects to the prescribed medication . Thankyou for taking the time to reply , wishing you all the very best x

Hi Missi K, so sorry to hear about your BC, I didn't have a mastectomy but like you I told no-one but my husband. Well done you, one day at a time.  Love from Ann

Hi, my story is very similar to Wallydug, though I am about a month behind her in treatment.  I had a 5cm lump (ductal,not lobular) with no lymph node spread and had chemo then surgery, which showed no active cancer cells, the chemo had worked it's magic. I am about to start preventative radiotherapy next week and I am on Phesgo injections until April 2022 as well as Letrozole Tablets for years to CoE end.   Waiting is by far the worst experience ever, once I knew the plan it was much easier to manage.  If you're interested, my blog is over on the blog page and is called One Alice Live It.   Best of luck  

Hi my lump was removed in my first surgery a theraputic mammoplasty. And no spread to lymph nodes. Unfortunately they could not get clear margins as I still have a large area of dcis, and I have now decided on a masectomy with immediate reconstruction.  How worried should I be I have not got a date yet still awaiting a dare yo discuss with surgeon.  Best wishes xx

Thankyou for your kind words Ann.

I thought it was just me , I really don’t think I could cope with everyone’s emotions on top my own to be honest. I know we are all different with how we cope and it’s nice to have support around you, I just think I would feel too overwhelmed at the moment if everyone knew. 
wishing you all the best x

Thankyou Irish girl. Your blog is very inspiring, it’s so good to hear another positive story. It gives us all hope and strength to hear such success stories.

I’m trying to take one day at a time, it’s far easier than racing too far ahead .

good luck with your continuing treatment and Thankyou for taking the time to reply x

Hi Shaz52,

So sorry to hear you did not get clear margins, Although a mastectomy is not something any of us ladies ever expected to have to deal with it is very manageable pain wise . I think mine may be slightly more uncomfortable due to having also had ruptured submuscular silicone implants removed at the same time and obviously having the chest muscle put back to the chest wall.

Im not sure what type of reconstruction you will be having Although if it is an implant , I know from experience this gives tight heavy feeling on the chest as the muscle is lifted and placed over the implant but it soon settles down . Wishing you all the very best with your upcoming surgery and treatment and Thankyou for your reply x