Not diagnosed but very concerned something has been missed

Samvi
Samvi Member Posts: 5
edited June 2015 in ILC (Invasive Lobular Carcinoma)



Hello everyone

I posted in the not diagnosed boards but would really appreciate some input from ladies that have sadly been diagnosed with this horrible disease...

I have always had one breast larger than the other and the tissue has always felt thicker and more prominent in that breast. I saw my doctor a few years ago who upon examination was not concerned and said she thought it was just fibroadenosis. I was surprised by this as I thought fibroadenosis usually occurred bilaterally and would wax and wane with my cycle but this seemed to be a permanent fixture. It was a lot more tender before I stopped taking the pill about a year ago. Anyway fast forward a couple of years, I'm living overseas and I find a tiny lump under my nipple. Luckily this is diagnosed by ultrasound as a tiny sub centimeter cyst. But since then it's fair to say I have become more than a little preoccupied with checking my breasts. Recently I've noticed (or at least I have convinced myself that I have) that the tissue in my larger breast seems thicker than ever, almost like a ridge of thick bumpy tissue that is sometimes tender to the touch (probably from all my poking and prodding).

I made an app with a breast surgeon who remarked upon examining me that it felt like breast tissue but he ordered a mammo and us to be certain. Both came back clear except my tiny cyst but stated that I have extremely dense tissue although the Mammo stated that this was fairly symmetrical bilaterally which seemed odd to me seeing as there is a clear palpable difference! It went on to say that there were no concerning calcifications, irregular masses or architectural distortions evident. Which sounds great but doesn't give me any answers to why I am feeling something different!

The breast surgeon on review of the results didn't seem concerned at all and just said that I should have regular screening. I asked him why he didn't feel that a biopsy was necessary and he said that the tests hadn't picked out any areas which they could biopsy. From everything I've read though this type of cancer can only really accurately be diagnosed by biopsy. Is this right? I know mammo and U.S. aren't great for picking up ILC and that it can easily be missed especially if the skill level of the person operating and interpreting the data isn't great! He also said that he didn't feel that an MRI was necessary. So why don't I feel reassured?

I had actually never heard of this type of cancer until I consulted Dr. Google after I had been given the all clear and now I have convinced myself that this is what I have got. I just don't feel that being told that I have dense breasts is sufficient enough explanation for what I am feeling. I should mention that I haven't experienced any other symptoms such as nipple inversion or changes to the skin but I don't feel convinced that this is just hormonal as the doctor seems to think. Why does it only appear on one side and why does it seem to have gotten worse recently? Sorry to rant and sorry if I am posting in the wrong place I just really would find it useful if I could hear from someone who has been through this. I just don't know where to turn to next or what to do for the best. My boyfriend thinks I am letting my anxieties take over my life and that I should just trust in what the doctors are telling me. I don't seem to be able to do this though. I have suffered with health anxiety issues in the past and I don't know whether this is a genuine concern or just another of my anxieties spiraling way out of control. I would really appreciate any thoughts from any of you lovely ladies.

Thanks so much,

Sam

· Share on FacebookShare on Twitter

Comments

  • Momine
    Momine Member Posts: 7,859
    edited May 2015

    Hi Sam, sorry you are dealing with this fear. You could ask, on the basis of having super-dense breasts, to have a breast MRI with contrast. Ask your doc or the breast surgeon if they would order one of those.

    · Share on FacebookShare on Twitter
  • Samvi
    Samvi Member Posts: 5
    edited May 2015
    • Hi Momine thanks for your response. I asked the surgeon about this and he said it was unnecessary in his opinion but if I was adamant he would order one. At the time I said no as I initially felt reassured but then I discovered ILC and am now regretting not insisting on an MRI.
    · Share on FacebookShare on Twitter
  • vlnrph
    vlnrph Member Posts: 1,632
    edited May 2015

    You sound as though you are fairly young, pre-menopausal anyway. I think some doctors might be less concerned due to the rare likelihood of lobular cancer showing up before, say age 50. That attitude may be detrimental in your case. Many times ILC goes undiagnosed until lymph node invasion has occurred.

    Get the MRI as a baseline, to put your mind at ease. Hopefully your insurance will cooperate. The order should include contrast which is an IV injection of a gadolinium agent. Let us know how it goes.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited May 2015

    Sam, then just go back and say that you changed your mind and ask him to write the script.

    · Share on FacebookShare on Twitter
  • Rdrunner
    Rdrunner Member Posts: 309
    edited May 2015

    with dense breast tissue mri is the best. Do what ever you need to do to feel assured.

    · Share on FacebookShare on Twitter
  • fizzdon52
    fizzdon52 Member Posts: 568
    edited May 2015

    Hi there, I would insist on an MRI as mine was missed on Mammogram and Ultrasound. In my experience MRI is the best way to pick up ILC. Mine was missed for 18 months as I knew I had something going and and no-one would believe me. I can't tell you how bitter I am about this. So if I were you and your Doctor refuses an MRI, I would go somewhere else. Good luck.

    · Share on FacebookShare on Twitter
  • Annette_U
    Annette_U Member Posts: 111
    edited May 2015

    fizzdon, me too still bitter because of the 6 month lag from 1st I noticed at mammogram and ultrasound and idiot radiologist still saying I was okay after second mammogram - I belted out some choice words and found a breast surgeon for a biopsy!

    · Share on FacebookShare on Twitter
  • gkodad
    gkodad Member Posts: 188
    edited June 2015

    Samvi, insist on an MRI.  Even if it is negative, you'll have a baseline for future comparison and some reassurance that things are OK.  My ILC was not seen on mammograms or ultrasounds, but the MRI was BIRADS 5 - 95% probability of malignancy. I had a normal breast exam 6 months earlier, and was on 6 month follow along due to earlier IDC in the opposite breast, but by my Feb mammo, it was 5cm and could be seen and felt.  Despite my insistence that something was wrong, there no real concern from radiologist, other than a "possible" 8mm area that turned out to be nothing.  So a biopsy instead of an MRI would have come back OK with that giant ILC still sitting there. 

     I'm pushing my sister, who also has dense breasts to get a baseline MRI, even though her doctor is saying "probably not necessary".  He has agreed to order it based on family history - didn't know squat about ILC and assured my sister that she didn't need to worry because her mammogram would have caught anything that was there.  So she educated him. 

    · Share on FacebookShare on Twitter

Categories