Scared and confused

Heles

Hi my name is Helen. I was recently diagnosed with a Grade  2 lobular cancer on my left breast. Sentinel node biopsy confirmed 1 node was involved and tumour size was 12.7cms at time of surgery. So disappointed because neither scan, or ultrasound picked up the size. Just had double mastectomy and auxiliary clearance came back clear. CT scan was clear as was the bone scan.Will be starting chemo soon, followed by radiotherapy.Just wanted to hear from anyone who has had a similar diagnosis. Need reassurance because very upset at the moment. Just turned 50!

Zoffiel

Hi @Heles

Lobular carcinoma is a sneaky mongrel of a thing. It took me two years to get my first diagnosis because it can be very, very hard to pick up on a scan. The tumours can be quite sizable and it makes you wonder how they could possibly be missed but, unfortunately, it's an all too familiar story.

Clear margins and scan are excellent news. Chemo is nothing to look forward to, but it passes. Radio therapy is less taxing but is still time consuming and that, in itself, can be stressful.

Stress is probably the worst aspect of the whole performance. You've been through your surgery so you would know all about that. You have probably learned by now that waiting is the hardest thing and once you get started with the next phase of your treatment you won't feel so stranded.

It might be poor comfort, but you will be travelling this path at the same time as a number of other people on the site so never, ever, feel you can't ask questions or just get on here and have a bit of a rant. You'll find yourself in good company.

Good luck, Helen. Marg xx

kmakm

Hi @Heles. So sorry that you find yourself here. My re-excision turned up a 4cm dogleg of very busy DCIS that hadn't shown up on any of the multiple previous scans and ultrasounds. The charmingly named 'occult cells'. Not the same as yours I know, but our reactions are not dissimilar. We're taught to trust medical science from when we're babies. And while it's often incredible, it's not infallible is it?

I tend to pick over this kind of stuff too. I've come to realise it's part of my process, that I eventually stop, and achieve some closure. Have a good cry and get those feelings out, and know that you won't feel like this for too long. If you'd like to talk to someone, you could give the BCNA helpline a call, 1800 500 258.

Console yourself that it's gone now, and take some deep breaths. It all happens so fast at the beginning. You're moving onto the next step now. One day at a time. We're here for you!

Molly001

Hi Helen, not the same diagnosis, but thinking of you. The network will be here for you as you go through your treatment. All the best

primek

I get your dissapointment with the scans but I know it can be hard to detect lobular on scans. 
Great news that  all other nodes clear and other scans are clear.
I was 51 at diagnoses  of IDC Es+Her2+. It was a grade 3. Only small but rapidly growing. My mammo was clear only 5 weeks before found. I chose a bilateral because of it and had reconstruction. I'm happy to say I'm now 2 years since surgery with no evidense of disease. 

Sister

Hi @heles.  I was diagnosed on 5 December with ILC from a routine screening mammogram.  I had no idea.  Very hard to see on the scan, too so I was lucky it was picked up.  It was supposed to be 2.5cm.  Had a partial and sentinel node biopsy just before Christmas.  It came back as 4.5cm without clear margins and 3 nodes involved.  Grade 2, OR+ ER+ HER- , slow-growing.  Went back in for single mastectomy and axillary dissection on 8 January.  CT scans clear but the cancer was almost invisible on those scans as well.  My surgeon is sure that the cancer is gone but there's always the chance of floaters.   I'm now having chemo - 4 doses of AC x 3 weekly which I'm halfway through, then 12 weekly doses of Paclytaxel.  Then I will have 15 days of radiotherapy.  Probably followed by some sort of hormone therapy.  I'm 54.  As Zoffiel says - ILC is a mongrel of a thing.  I am just thankful that my screening mammographer was so eagle-eyed.

Chemo is not fun (understatement) and maybe I don't really need it but I don't want to find out in a few years that I should have had it, so that's what I'm doing. 

BC diagnosis is a shock (another understatement) and sends you reeling.  This site has been a lifesaver as far as helping me to cope with the diagnosis and treatment and being able to ask for information from those who have/are going through it.  Ask your questions, vent your rage, reach out for understanding, enjoy the laughs.

Brenda5

It really is the pits and rather surreal that you didn't notice it and scans had missed it too and then they do surgery right across your chest and to add insult to injury they want to chemo and radiate as well. Deep breaths. Don't panic, we have your back. Hugz

Romla

Hi @Heles I was diagnosed 20/2/17 with lobular breast cancer grade 2 LHS - my tumour was 1.4 cm deep down on my breast bone. My tumour was detected by mammogram by a very experienced mammographer who I gather I was lucky to have as I was told not everyone would have picked it up.I had a lumpectomy and sentinel node biopsy with 2nodes removed. The pathology report revealed microstasis in 1 node plus margins not clear so I had a reexcision 10 days later with clear margins.Due to the microstasis I had 16 rounds of radiotherapy - as LHS learnt a breathing technique to lift the breast away from the heart to avoid damage to my heart.Radiotherapy was a very busy time - daily zaps  meant constant travel which was tiring although skin damage was minimal I think due to less zaps and a good creaming product - I used Dermaveen at home and Calendula cream at the centre supplied by the Radiotherapy centre.Many on here swear by Moo Goo.I did not like Sorbolene and noted many patients didn’t either as only Calendula seemed to always run out - the centre no longer uses Sorbolene and has switched to Cetaphil.
I am er+ and have hormone therapy - Letrozole - for 5 years - which I have been taking for 8 months and seem to be managing ok - yes I have side effects  hot flushes , joint pain etc.

 I have learnt the most important things to coping physically/ mentally/ emotionally for me is to walk daily for an hour plus to share with others in the same boat.I have learnt there are many of us in this boat and that life is not over but it is now different .

There is much wisdom and support available on this blog for you.I am willing to help with any knowledge I have gained.

For me active treatment left little time to think and medical/ non medical staff involved in this process cocooned me with such kindness that I was not really afraid.The hard bit for me was when active treatment ended and I felt lost .I am so glad you found this site early as it is wonderful as are it’s participants.Please ask whatever you need to know and we will all try to help .You are no longer alone we are all here in your corner. XO

Romla

PS I did not have chemo but many on here have and can help .