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Multifocal and multitype - pathology questions

HallaHalla Travancore, MelbourneMember Posts: 66
I have recently had a lumpectomy which removed 4 tumours, multiple instances of DCIS and one LCIS. Some of the tumours are described as ductal invasive breast cancer (IBC) of no special type (NST)and some are ductal IBC NST with mucinous differentiation -one 90% mucinous and one 50%. 

All are strongly ER + PR + HER -. 

Mucinous - grade 1 - 22mm &21mm
Mucinous - grade 2 - 13mm
ductal - grade 1 - 22mm
DCIS - intermediate stage, several, largest 42mm

They have staged it as early breast cancer,  stage 2.

Clear margins and clear sentinel node.

why would they call it an IBC of NST if it is 90% mucinous?

Is it common to have so many different types of cancer at once? Has anyone else had similar?

Would that mean they are unrelated? Which one would they use to determine treatment?

I am worrying - if there were so many different cancers removed, how do we know there are not lots of other ones still there? 

They had trouble enough finding the ones that were there, some couldn’t be seen by ultrasound. The general areas were picked up by MRI but not each individual cancer.

The surgeon has referred me on for genetic testing, oncology etc but have just been waiting for them to contact me, wondering about all of this...

How long is normal to wait for the team to contact me? It’s been 10 days since the surgery.

Appreciate hearing any of your thoughts/experiences!

Comments

  • Cath62Cath62 Brisbane Member Posts: 182
    Hi @Halla, there are so many different types of breast cancer and we are all unique so treatment is all unique too. I did have genetic testing and that process took about a month once I had tge test kit. May give your dr a call to see where things are up to or call the oncology to find out if your treatment has been scheduled. Let them know you have not heard from anyone yet and are keen to know the treatment plan for you. It's hard when we don't know what's happening but when we know the plan at least we feel things are progressing. Best wishes 
  • Ausmum2Ausmum2 Gold Coast QueenslandMember Posts: 8
    Hey @Halla

    I understand this is a really worrying time.

    The guidelines say the team should contact and see you within 14 days of referral, so it should be happening soon. I would be following it up (but that’s me) so that you have that piece of mind. 


    I also can’t recommend giving the team at BCNA a call to discuss some of your questions enough. For me I found speaking to the Breastcare nurses on their number really helpful in unpacking and clarifying questions I had, what was “clinically relevant” and what was just “noise” in my head. 

    Let me know how you go. Feel free to DM me. 



  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 164
    First "NST" refers to certain cellular features of which "mucinous" is not one. Features they look for to classify "NST" are leomorphic carcinoma, carcinoma with osteoclast-like stromal giant cells, carcinoma with choriocarcinomatous features, and carcinoma with melanotic features (only understandable for pathologists!)  If none of these are present then it is "NST". Secondly, you can have more than one type of breast cancer at the same time, but it is very rare. I had two different types and was tested twice in two different laboratories to make sure. However, breast surgeon and oncologist did not believe the results and have treated me all along as having ER/PR +, Her - breast cancer (rather than this and triple negative as well). I could be wrong, but I imagine that treatment for your different types (which are mostly similar) would be the same so I wouldn't be too worried. If you are worried about cancer still being present you could as for whole body PET scan. It isn't unusual for treatment to take a few weeks to start as they like to have your wound healed (depending on what sort of treatment they are thinking about) so I am sure the team will be in touch with you soon. However, don't hesitate to call as the team should be very understanding of the anxiety you are facing when you don't know what is next. There is also the possibility that you may have fallen through the cracks, although this is probably unlikely but worth giving them a call to make sure. In terms of the genetic testing, it can be a bit of a long process depending on what tests they are doing. If they are just testing for BRCA you may get the test results quickly, but if they are testing for a whole lot of other mutations it may take weeks. Although, I was lucky and didn't have to wait too long during each step of the way, I remember how stressful it is just waiting for each step. Hang in there, everything will come in due course and be thankful they are not coming at you at a hundred miles an hour as this usually suggest that they believe the cancer is aggressive. Mucinous cancers are not usually aggressive so hang on to the positives and take the time to digest everything. Good luck Lisa
  • HallaHalla Travancore, MelbourneMember Posts: 66
    Thank you so much @Lisa1407 @Ausmum2 and @Cath62, I appreciate your responses very much   <3
  • GlemmisGlemmis Member Posts: 328
    Hi @Halla, I was diagnosed with stage 2 breast cancer in 2016. The tumour was around 16 mm and was 60% NST & 40% mucinous carcinoma. Initially I had a lumpectomy but didn’t get clear margins so had a mastectomy where it was found I had 40mm of lymphatic vascular invasion & also 3 lymph nodes with cancer. Also they found a satellite tumour in the breast. I was ER/PR positive. It was 2 weeks between lumpectomy & mastectomy with scans in between & then 5 weeks later started chemo. Mucinous carcinoma is rare but is treated the same as other cancers. You had clear nodes which is great and whilst the waiting seems to be long it is most likely normal but I would give them a ring to make sure they received the referral. 
  • HallaHalla Travancore, MelbourneMember Posts: 66
    Thanks @Glemmis...did they know from the scans that the satellite tumour was there? This is my worry, that there could be more inside that they can’t see...that sounds unlucky that they didn’t get clear margins on one fairly small tumour :-(...have you had any recurrence since your mastectomy? Hope not for you!
  • GlemmisGlemmis Member Posts: 328
    Hi @Halla, no the satellite tumour wasn’t picked up on scans. I had very dense breasts which I only found out 2 years later. It was described as a very nasty cancer due to the lymphovascular invasion which was the reason they didn’t get clear margins as that area was huge. I have since had the other breast removed for my own peace of mind & double reconstruction. I haven’t had any recurrences & coming up to 5 years. 
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