Forum Discussion

youngdogmum's avatar
youngdogmum
Member
7 years ago

Breast MRI

Hi everyone 
for those who don’t know my story.. stage 2B lobular carcinoma, one micro deposit in one lymph node Dx Feb ‘19. Currently D9 post mastectomy and axillary clearance.

Wondering who was offered a breast MRI after initial suspicions of something being there? 
I wasn’t, but after reading my pathology report I’m wondering if I need the other breast done before proceeding with treatment.
I had an USS and mammogram which only showed a fibroadenoma in R) breast (known previous) however very dense boob. I’ve noticed a little pea size lump in the very bottom
of my remaining boob and it’s painful. I’m not sure it would have actually have been mammogrammed because of where it is (as in when you pull the girls up it might not have made it onto the scanner) 

My pathology showed - invasive lobular tumour, very small DCIS in that tumour, as well as extensive lobular neoplasia throughout the breast tissue. (classic coledo) 
The registrar didn’t really have much to say about this and my Prof was away. A quick look on some databases indicates having this in one breast can mean it’s in the other.

I guess what I’m worried about is, what if there are changes there that mean I should actually proceed sooner rather than later with a prophylactic mastectomy? Or what if there is another invasive tumour in that breast itself we don’t actually know about? Will chemo be enough ...? I don’t know.

Anyone got any thoughts if I should push for an MRI before I meet med onc (still 1 week away as per my McGrath nurse) 

As always, thank you. 
Xx
  • arpie's avatar
    arpie
    Member
    7 years ago
    Sounds good.  All the best with both your Onc appointments .... xx
  • youngdogmum's avatar
    youngdogmum
    Member
    7 years ago
    MRI describes nil areas of concern in the right breast. Mentions the known fibroadenoma and several small cysts, as well as some larger ducts.
    Comments that MRI may miss areas of DCIS and therefore clinical judgement should be used, as well as other imaging sources to evaluate if specific concerns are had. Given that mammography, two USS, exam by my professor and now the MRI are happy there is nothing gravely sinister in the right breast, I am quite satisfied and this has put my mind at ease. 

    I am still leaning towards having a prophylactic right mastectomy at the end of systemic treatment, given the nature of lobular carcinoma. 

    I meet Oncology on Tuesday so I will share my plan with you all then :) I have been given an appointment two weeks later with Rad Onc so feel I am destined for Rads as well if they’ve already slotted me in to meet them! 

    I truly find this forum amazing. Being able to have others who understand and listen during this is incredible. I hope my experiences help another young woman in the future. 

    Enjoy your weekend ladies 💕
  • lrb_03's avatar
    lrb_03
    Member
    7 years ago
    Good news about the USS result, and really pleased that you have had an MRI.
    Yes, chase the result, and let us know, please 
    Take care
  • youngdogmum's avatar
    youngdogmum
    Member
    7 years ago
    Hi guys, update for you. 
    USS describes normal breast tissue. My GP was happy to refer for an MR for my peace of mind, that happened this morning (couldn’t believe I could get a spot the day after, that seems very easy I always thought MR bookings were difficult!) 
    I had to pay $350 for this, I’ve read others who’ve paid up to $700 so wanted to let everyone know Qld X-ray did mine for $350
    Will chase MRI tomorrow :)
  • youngdogmum's avatar
    youngdogmum
    Member
    7 years ago
    Yes I’m 27...in hindsight I didn’t ask for one and felt so comfortable with this professor once I heard they sometimes happen I didn’t think to ask for an MRI! Hindsight is a beautiful thing isn’t it 😂 

    I asked for a bilateral the day I was diagnosed and he felt not indicated then and there, best to get to treatment and look at prophylactic surgery later. When it came back as lobular not ductal two days later, I again asked and he said yes future prophylactic probably for the best and we could do my recon all in the one go then, perhaps towards end of 2019 early 2020.
    I feel very comfortable with this plan, just now feel there’s surely alot going on in my remaining breast considering the final results from my left.

    I’ve managed to get an USS booked on Tuesday to have another look at my right breast. I will ask my nurse to speak to Prof about my concerns and see what he thinks about imaging the other breast sooner rather than later... i will have her specially mention MRI. 

    Enjoy the weekend ladies x
  • kitkatb's avatar
    kitkatb
    Member
    7 years ago
    I think the others have covered it really well.  Definitely if you have concerns talk to your team and any other questions you might have.  I had lumpectomy then re excision before it was suggested I needed the MRI  which in turn changed everything for me when they found high level DCIS  which mean't a Mastectomy . 
    It is hard being our own best advocate as @Irb_03 has said especially when we are numb with not only a diagnosis none of us expect or want to hear but an overload of information we can barely absorb.    Good luck with everything. xo
  • lrb_03's avatar
    lrb_03
    Member
    7 years ago
    Hi, if I remember correctly, you are young, under 30? If that's the case, extremely dense breast tissue is almost a given. Also, if I'm correct (I may not be) you'd probably be covered for MRI of the remaining breast.  I'm actually kind of surprised that it wasn't offered previously, but that may be because you went straight to mastectomy.  

    I think ask the question. If it comes down to it, you could always have chemo next, and radiotherapy if recommended  and give yourself time to think about what to do about your other breast. As @kmakm says, trust your gut. It is, however, also important to trust your team.

    Throughout this crazy path we've all found ourselves on, we have to learn to be our own best advocate, and that can be hard, too
  • kmakm's avatar
    kmakm
    Member
    7 years ago
    Hi @youngdogmum. I have no expertise but my personal experience of breast cancer has reinforced my inclination to trust my gut.

    Speed is probably not an issue, so waiting a week to discuss it with your oncologist is fine. Lay out all your concerns, hear what the onc says, take some time to think about it and push hard for action if you decide it's what you want and you meet resistance. Some doctors are happy to provide 'peace of mind' scans while others are not.

    My BS is very intuitive and with my family history (mother had it at my aged, my sister died from it 17 mos earlier) and some clever questions, a prophylactic BMX was on the cards from my diagnosis appointment. After chemo I ended up doing it. It took a lot of thought, discussion and questions. I influenced by my re-excision discovering 4cm of DCIS that was invisible on the mammograms and ultrasounds. My breasts were quite dense, something about which I was never formally informed. The mastectomy pathology revealed more unseen DCIS. At that stage my risk for another BC was 27%.

    Subsequently genetic testing revealed I had a genetic mutation that had me at a 66% chance of having another one. As you can imagine, I am very pleased that I trusted my gut and had the BMX (and DIEP recon).

    We all have to live with our decisions, whether they deliver good outcomes or not. It's about what you think you will be comfortable with, should things go well or all turn to shit. Know yourself and trust your gut. K xox