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Natwitts

Hello it's been just a long process already and still yet to start treatments. I was diagnosed on the 15th of August. Scan said 2cm mixed duct. Had a lumpectomy on the 5th of Sept and just got my results. The cancer turned out to be 7cm grade 2 and I'm ER/PR + HER2 - my K67 is 30% not in nodes and clear margins. But I have LCIS so they want to do an MRI. I'm am in a confused state at the moment as he wants to check if there's any other cancer in my boobs, but I look clear margins means not spread. Has anyone been diagnosed with LCIS and or a tumour being bigger than scan. Also they haven't told me my stage just my grade. Is that the same thing? Sorry I'm totally in the confused bubble. 

Blossom1961

Hi @Natwitts and welcome to the forum where you will get heaps of support and where every question and fear is reasonable. There are ladies on here who will give you heaps of info that helps you navigate this whole BC thing. I just walked in a fog for most of it. Lots of virtual hugs for you. What general area do you live in, You don’t need to be specific. If any of the other ladies on here are in the same area they will be able to direct you to wonderful local services. xxx

Sister

Welcome to this site @nattwitts I'm sure others will jump on soon and give you more info - you'll soon find that you become familiar with more than you ever wanted to know!  Lobular is a sneaky beast so my guess is that your doctor is just trying to be sure that any further treatment plan is based on evidence.  It seems to be really common, particularly with this sub-type, that the tumour turns out to be bigger than expected.  Mine was scanned at 2cm no nodes - turned out to be 4.5cm with no clear margins and 3 nodes affected.  My ki67 was really low but the cancer was pleomorphic which means it was really fast-growing.  Basically, lobular is a different animal than ductal and most of what you read will be based on ductal.  Stage and grade are different - grade refers to the cancer itself (2 being in the middle) while stage is how far it has gone through your body.  I imagine that yours will be Stage 1 or early 2 but I have to say that my medical team don't seem to be too interested in the finer points of staging.  Whether it's because, as a measure it has become a bit outdated, or because lobular behaves differently, I don't know.

You may want to check out the private group.  There's also a good US advocacy site - Lobular Breast Cancer Alliance.

kmakm

I didn't have lobular but my tumour was twice the size than estimated from the mammogra and ultrasound. Our imaging is good, and improving, but the technology is not perfect by any stretch of the imagination. You'll find the increase in size story quite common.

Regarding the stage, like @sister, none of my doctors paid anytime to discussing it. As far as I can tell it's just a short form of describing a patient's diagnosis without detail. Grade and ki67 are more pertinent.

Stage describes the size and spread of a cancer. There are many shades in between so it's further divided, eg Stage 2A. The grade refers to the activity of the cancer cells, how fast they're multiplying. 1 is slow, 3 is fast. It's shorthand for how aggressive the cancer is.

The breast cancer learning curve is vertical. You'll soon get the hang of it, and emotionally it will get better once you have a treatment plan. One day at a time is the way to get through this. Big hug, K xox

Natwitts

Thankyou. Xx. I'm grade 2 but couldn't see stage, so was alittle worried, but you have explained that well. Mine is clear from nodes and clear margins, but I have LCIS so they want an MRI to see if there's future cancer  mayb around. Thankyou again for taking the time to explain. Xx

Natwitts

I'm in Melbourne bayside. Xx

Natwitts

I should point out I'm invasive carcinoma lobular with ductual features. So many words. Lol

Zoffiel

Lobular is sneaky and difficult to assess--tumours are often larger, or more numerous, than first thought. 

Scan and tests are stressful and nothing is without some element of risk--no-body likes being in a machine with chemicals swishing through their veins--but it sounds like you are being offered  a thorough assessment. Which is pretty sensible given the form of the disease you have won in life's crappiest lottery.

Don't worry too much about the grading business; the main game is  your medical team figuring out exactly what is going on and what can be done about it. This stuff is confusing and confronting and it takes a while to get used to a whole new language. It also requires a level of trust which doesn't come naturally to some people. Hang in there. Mxx

Caz1

Hi Natwitts. I’m bayside Melbourne too.  Diagnosed 31 st July, so just ahead of you. Stage 3 I THINK I’m grade 2. Invasive ductal . Mammogram found it in one node. 
Hat PET, further ultrasound, and bone scan. I am so lucky it hadn’t spread elsewhere. I had an MRI on both breasts, it was my second opinion doc who requested it. She wanted to be certain it wasn’t in the other breast, particularly as my gals were lumpy.  Personally I didn’t mind at all....I wanted them to have all the info that they needed to make the best decision. (disclosure -I am a medical scientist so that’s how I roll anyways!) The MRI revealed the tumour was bigger than they thought, and in one more node.  But not in the other breast , which was a bit of piece of mind tbh. 

Where are you having your treatment done?

Natwitts

I had my lumpectomy and sentinel node biopsy at Monash Moorabbin hospital but also Monash breast clinic in Clayton. 

kezmusc

Hi @Natwitts,

Welcome lovely.  The ladies have got everything covered as usual.  Just wanted to say hi.  I was grade 2 stage 2 but standard garden variety DCIS. The stage and grade becomes irrelevant after the start.  No body has ever mentioned it too me again and I had to ask my breast care nurse to find out anyway.  The doctors never said anything.

My breast tumour was a bitch to find.  The MRI was the only thing that could spot it (we knew it was there because I had found the lump in my nodes to start with).  It was exactly the size the MRI said to the mm.
It still surprises me that MRI is not standard at the time of diagnosis.  Cost factor I guess. That way we'd all get one big bloody shock instead of two.

All the best for a clear MRI result.  Big hugs.  xoxoxo

kezmusc

Gee I can't even remember the type of CA it was..IDC..not DCIS..was someone talking about memory loss before???????????

Flaneuse

@Natwitts Mine was invasive lobular also. Very difficult to find. Had "clear" mammogram 9 months earlier! My symptoms were physical - inverted nipple and distended shape. It took ages in ultrasound, biopsies, etc. They thought it was 8-9 cm but in the end it was 12 cm. It's the fine spider-web nature of lobular that makes it so difficult to assess before surgery. Nothing left between chest wall and chest muscle. I tell everyone now to not rely on mammograms, but have ultrasounds as well. My daughter and nieces are doing that.