Extensive DCIS with ITC

HiGC003​ I also had invasive DC ER/Pr positive, HER neg. it had escaped into the muscle, skin and onto the sternum. After breast conservative surgery for removal etc the pathology came back with I believe ITC in 2 nodes. Not the best margins on tumour.   I had chemo prior to surgery on the hopes to loosen the tumour off my muscle it obviously worked for the muscle but they did some fancy patch work and removed the section of skin it had adhered to. 
with the pathology results it was decided the best course of action was to increase the scope and duration of the radiation. Sad to say the little buggers had already got into my blood stream and settled in a couple of my bones. There are no guarantees with this shtty disease  but due to my medical team I am still here nearly 10 years on. 
All through I have trusted my Specialist even when I like to throw curveballs at them with new and not exciting health issues at them (not breast cancer related). Which all affect my mets treatment.  I am unfortunately getting closer to the end of my glorious 60’s so age related things keep coming up. 
Trying to  Live healthy in life does help It’s a bit hard sometimes.  
Here’s to some good vibes and care your way. I’m sure you will be given the best options they can gather for your ongoing treatment plan. 
each of us are different so treatment always depends on your Individual needs etc. 

Hi GC003​ I hope you are doing ok.

I had a similar scenario but mine was invasive ductal carcinoma. I had one positive lymph node, taken at the same time as the first lumpectomy, followed by a second lumpectomy which still didn't get margins and then a mastectomy (thankfully with margins and no chest wall involvement). The tumour ended up being much larger than originally thought. No evidence of disease elsewhere in the body from the PET scan. 

I ended up having chemo and radiation, but I got the impression that it wasn't an entirely straightfoward decision/recommendation for the team, and I don't think my disease fit neatly into a stage - although they ended up calling it stage 2. 

When it came to chemo, the team was going to offer me a lesser regime, but given my age (young-ish at 46 and otherwise fit and well) and my desire to throw everything at it, I ended up getting the full chemo experience. Not exactly a picnic but I'm glad I had it. I think it would weigh on my mind if I knew there was an option for more extensive treatment and I didn't take it. But everyone is different and has different medical needs and priorities (medical or otherwise).

Let us know how the decision goes and how you're travelling. Best wishes - the waiting is the worst part if you ask me.

Hello, so sorry to hear this. My diagnosis was similar, however when they checked the lymph nodes they were clear (they thought it had spread but it hadn't).

I did have a double mastectomy though as they said the chance of reoccurrence was high.

If my nodes were not clear they would have recommended chemo or radiotherapy.

I hope that helps and wishing you every strength

GC003​    I am SO Sorry to see you join the club that no-one every thought they'd ever be joining 🙁. 

ITC (Isolated Tumour Cells) being found in the sentinel node would definitely be of concern, as they are the 'guardians' tho it is good they weren't found in the tissue ... so it will definitely be interesting to see what your Team comes up with.  Ask them what THEY would do if faced with the same situation.  If it was me, personally I think I'd be wanting some sort of treatment (even if 'just' radiation to mop up any escapees/randoms ....) rather than 'monitor only' .... 

Do you have a Breast Care Nurse to chat with yet?  They may be able to give you questions to ask your team - or even attend with you? For support as well as advice xx.  

Make sure you take a trusted friend or family member with you to your appointments, as a 'backup set of ears', as it is difficult remembering everything that is said.  Also, consider recording your sessions on your phone, so you can go over it again later, for the same reason. 😉

 Mine was ILC (Invasive Lobular Cancer that was not picked picked up by the BreastScan regional bus Mammogram and the ultrasound was undetermined, so it was the biopsy that 'found mine'.)  I was lucky to only have the one lumpectomy, rads & tablets .... and have recently finished with the tabs now after the best part of 8 years.

You've found the right spot here tho, for support & info from those who've 'been there, done that'! So hopefully we'll be able to smooth the way for your own story.  Whack up ANY question - remember there are NO dumb questions!!!

This diagnosis can really muck with your brain too - so if you feel sad, angry, distressed - that is absolutely 100% NORMAL!  But you don't have to 'do it' on your own!  .... ask your GP (or your treating team) for a referral to see a counsellor .... or listen to Charlotte Tottman's podcast (link below).  You can also ring our Helpline on 1800 500 258 for a confidential one-on-one chat xx   

Charlotte Tottman  is a BC specialist counsellor who was diagnosed herself, also had a double mastectomy, so knows EXACTLY what we've all been thru, both emotionally and physically!  Her reaction to her own diagnosis was also quite different to what she 'thought' it might be, given that she'd been counseling women's reactions for some years before, so thought she 'new' what to expect!  She is VERY easy to listen to, too xx
http://www.drcharlottetottman.com.au/my-podcast.html.

There is HEAPS of info in the link below to help you navigate the blog, including what to take with you to hospital etc - and also some tools to evaluate your own physical and mental recovery thru your ongoing treatment! xx.

https://onlinenetwork.bcna.org.au/discussions/general-discussion/a-big-welcome-to-all-new-online-network-members-/222737

Take care & all the best for your ongoing treatment xx