ILC & IDC found in left breast

Tammy9

Hi,

Yesterday, I had my first specialist appointment to receive the results of my biopsy. The result showed that I had both ILC and IDC in the left breast. The iDC is 2.6 but the ILC was running in lines in the dense tissue. This measures about 6cm. I have been requested to get a breast MRI and a PET scan ASAP. 

I was working up to Tuesday and then I went home after the diagnosis. I'm finding it all a shock and my hope has diminished. Also, I have an elevated temperature and aches in my neck and lower back when i go to bed. This is relative a new set of symptoms and I've had them for a few days.

I'm aged 49 and I have been relatively healthy and I don't tick the boxes for a person at risk for breast cancer. Further, I felt like I was over reacting by heading to the Dr a fortnight ago, I thought it was aging or hormonal symptoms that I was experiencing.

Is there anyone else in our online community who has this diagnosis? Xx

iserbrown

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

Also here's a link to a group for you

https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

@Tammy9

It's a shock but with a definition you can now absorb the information and post with others to get a better understanding 

Take care

Afraser

My sympathies, it’s a shock. And probably the reason for your aches, the body reacts. Unfortunately cancer can strike with no family history or obvious ‘cause’. But your next tests will help clarify the situation and the treatment, getting to grips with that often reduces the tension and shock because you can DO something! Your ‘over reaction’ has helped you have the diagnosis earlier, which is always a good thing. The waiting for tests period is difficult so best to occupy your mind as much as possible. Best wishes. 

Blossom1961

@Tammy9 The MRI and PET scans are part of the course. They want to make sure they get a whole picture and not just a partial one. My PET scan actually unconfirmed a suspected additional cancer spot so I was very happy with that. You don't want to get halfway through treatment and find they should have been treating you differently. As @Afraser says, find something to occupy your mind. It is so easy to get lost in this whole trauma but give yourself permission to grieve then move on to occupying your mind when you can. Also, don't feel guilty for your feelings. Sending big hugs.

Tammy9

Good evening all,

As an update, the second specialist disagreed with the initial specialist/surgeons diagnosis. The PET scan and MRI confirmed that the BC is 2.7cm and not 6cm or inflammatory breast cancer or ILC. It is IDC only... 

Also, it showed it was localised in the breast however, the first LN on the left side appeared to be larger than others. It wasn't glowing on the PET scan so I remain hopeful yet.. Im thinking to be prepared for more uncertainty.

My surgery is booked for Thursday, and I have opted to go private. The specialist / surgeon was vague about my prognosis (and I get this is common practice). It was a case of we wont know until we send the tissue to pathology to know if we have got the margins and if there are precancers in the LN. I will have 3 - 4 LN removed and the left will have a lumpectomy with reconstruction, the right will be reduced for symmetry/size. 

I feel no different physically but emotionally, Im all over the place. Not knowing if this is going to spread in the future is doing my head in, then the idea that chemo / rad may cause nerve damage. You see my mum died of motor neurone disease when she was 38 years, and there are far too many unknowns about the causes of it.

A big part of me is saying to do surgery and hormone treatment and nothing more than that. The specialist said that due to my age of 49 years that it is likely that I will need chemo and rads. I dont want chemo and I feel that when I get through this surgery - then its more pain and suffering to do a treatment plan from hell.

One more thing, they found a <4cm nodule on my thyroid that needs investigation. It wasnt glowing on the PET scan but they want to do a FNA. I said not doing it before surgery, but I will have an ultrasound tomorrow...

Im fit, have healthy BMI, the first in the family with BC, I dont drink, smoke or meet any of the obvious risk factors for BC - so these past two weeks (learning that I have a chronic disease or two) feels ******!

Any way, thanks for listening.

Afraser

@Tammy9

It’s a shock, particularly when you feel you have looked after yourself and are fit and apparently healthy. Unfortunately breast cancer can occur in fit people with no family history of cancer. 

Hard as if may be, now is the time to take one step at a time. Deal with the surgery before making decisions about the next step. Get an understanding of the implications (good or bad) of your pathology results. 

The treatment plan may sound hellish but it may not be as bad as you think. Chemo is capricious and unpredictable but, that said, some people find it manageable and nowhere near as bad as they feared (I am one of them). Remember that any course of treatment can be stopped - stopping if it is too difficult to continue may be an alternative strategy to never trying a treatment at all. 

We would all understand the dilemma - up to now you feel perfectly well, but treatment may make you feel very ill! It seems utterly mad. But step by step many find a strength they didn’t know they had and a determination to lick this thing they never wanted. 

I hope you have the support of family and friends. It’s a part of your life you could do without but it’s not the whole story. The purpose of treatment is to free you from cancer - which is worth the best shot you can give. Very best wishes. 

Cath62

Hi @Tammy9, I had similar surgery to you. I recovered well.  I did the other breast a year later and things match pretty well. Try not to get ahead of yourself. Your results so far are ok and treatment is so good these days  I had chemo for 4 months  I was terrified on the first one and I should not have been. I got through ok. I had radium for 20 rounds and again was fine  I am 3 yes down the tea and taking AIs but I am fine. Trust your treatment team, stay away from Google as you only end up down rabbit holes. You will get through this. Keep busy.take care

iserbrown

Agree with other comments, as hard as it is, please don't get too far ahead and try and second guess!  Trust your treatment team - they have you as their priority to get it under control and hopefully gone!!

Fact sheet: Breast cancer pathology | Breast Cancer Network Australia (bcna.org.au)

The link above will make sense as you move along and your team discusses the Pathology results

Take care and Best Wishes

jennyss

Dear @Tammy9,

from jennyss in Western NSW

Tammy9

Update... Pathology results

Good evening all,

I received my pathology results at my appointment but im going to see my GP to discuss these for a better understanding.

I was diagnosed with a 23mm, grade 2, invasive pleomorphic lobular carcinoma associated with a lobular carcinoma in situ and a duct carcinoma in situ (5mm).

I had a left breast wle, reduction and removal of sentinel lymph nodes. My margins were and six lymph nodes were deemed clear.

Treatment may be - radium and hormone meds (not sure which type yet...) But no chemo...

Tammy9 

Cath62

Thanks for the update @Tammy9. Good to go and talk to your GP and review your treatment plan together. They will be able to explain everything well. Take z friend or partner with you too if you can. It sounds positive for you. Best wishes