What's the point in learning more about ILC?

Mavericksmom
Mavericksmom Member Posts: 635
edited August 2019 in ILC (Invasive Lobular Carcinoma)

My MO wanted me to see a gastroenterologist at the same cancer hospital I was treated for my ILC at. She wanted me to find out when I should have another colonoscopy. So, today I went to the cancer hospital and saw a gastroenterologist. What a total waste of time! The doctor read the reports I brought her, then said she can't tell me when I am due again because it wasn't stated on my last report as to when the next one should be and she can't go by what other doctors do! She told me to drink more coffee, take aspirin, both apparently help prevent colon polyps. Told me to eat plant based diet, etc She said I can wait if I want to or see my PC and have a Cologuard test done. Then if that is positive I could schedule a colonoscopy. Seriously????? Not happening!

When I mentioned my ILC and asked what I could do proactively to check for spread to my colon or mesentery, she almost flipped out! She said there is no way to monitor for mets to those areas and that people who get them have a lot of symptoms including diarrhea!

Needless to say, I will never see her again!

I can't take anything cancer related anymore! I already know I won't have mammograms again on the only breast I have left.

I was going to listen to that webinar on the 22nd about ILC, but now I don't even want to know more. I thought I was doing the right thing reading and trying to be pro-active, but apparently it not only doesn't matter, but I get yelled at for doing so!

I decided for the sake of surviving this, I am going into full denial mode, at least for a while! I don't want to think about anything to do with cancer. I will probably take some time off from this message board as well. I need to decompress. Focus on my job, family and other specialists not affiliated with cancer.

I am DREADING October! I really hate the months that are now deemed "awareness" months. They can take that "pink" and put it where the sun doesn't shine! Sorry, I have just had enough and today put me over the top!

· Share on FacebookShare on Twitter

Comments

  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited August 2019

    I see you were “me" in a way today. Sort of a victim of a medical provider with a poor bedside manner. It was just a bad fit. I have to tell you some drs do not seem to do well with informed proactive or intelligent patients. I experienced this myself today w/my primary care dr. (Just needed surgery clearance) I dont think he likes that I tend to generally be more informed as a whole. Today Mind you I wasnt giving any opinions etc. or advocating... in my case he second guessed my surgery decisions altogether and rudely suggested my bmx w recon was an “elective or semi elective" surgery. I assume he was referring to the recon part.

    I agree, too many cancer doctors. Go to a reg. colorectal surgeon or reg gi. I promise you will be treated better. I see one and he is beyond awesome and still was after he found out about my diagnosis. They can still recommend and In fact they will prob argue more w/your insurance to cover for screening bc of your history. I will get a colonoscopy as soon as I am through w all this, prob next year. He recommended that and so did my geneticist. They just changed the age...

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited August 2019

    IMO, from my experience, full denial mode is not the way to go. The reason to keep educating yourself about ILC is exactly bc of the reason you just cited—the medical community will butt heads with you.

    Read through my bio signature—the only reason I am still alive at this point is bc I am highly educated about ILC and am not afraid to challenge my medical team.

    · Share on FacebookShare on Twitter
  • momand2kids
    momand2kids Member Posts: 1,508
    edited August 2019

    Maverick- I totally get it-- sometimes it is all too much-- in the last few weeks I have had colonsocopy, endoscopy, dermatology and my annual mammogram-I am exhausted. I try to space these things out- but somehow this year that did not happen.

    I think there is a way to know things without being overwhelmed by them. I don't think you have to do alot of research- when something comes up, you can always come here and ask or research. Knowing the basics about ILC-particularly around screening seems to me to be enough at the moment-- you may feel you want to know more later- but sometimes you just need a break. I often take cancer breaks- as far as I know I don't have cancer right now- so I celebrate that. Time does make a difference- as the years go by it really does fade.... but take a break when you need it.



    · Share on FacebookShare on Twitter
  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited August 2019

    I get it, mavericksmom. Sometimes there comes point when you just don't want to deal with this anymore. I think it's okay to take a break from it. Not that you'll never, ever have another colonoscopy, but if you're not having a problem, then maybe this isn't the time to pursue it? Maybe it's okay to put that on the back burner for a couple years, if your last one was less than 10 years ago.

    As for October, ugh! I used to love pink, but the whole "Rah! Rah! Save the Boobies!" campaign has soured me on all of it. I refuse to buy anything with a pink ribbon! I will NOT be identified as "the one who has breast cancer." I had it. I took care of it. I'm moving on. I have 2 gene mutations which cause breast cancer, colon cancer, and others, so I do see my breast surgeon once a year for ultrasounds of my fake mounds, and I have colonoscopy every 3-5 years (I have a very heavy family history of colon and breast cancers.)

    · Share on FacebookShare on Twitter
  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited September 2019

    Thanks everyone!

    TryingToStayPositive, special thanks, so glad it isn’t just me! We are alike, I had some Dx in Dec 2018 with mastectomy and DIEP reconstruction in January. I wish I had your doctor! I went to Fox Chase Cancer Center in Philadelphia and was refused a BMX because they won’t remove a healthy breast! Should have gone for a second opinion but didn’t. Now I have to live with a body I hate and believing that it will show up someday in my right breast. I didn’t even want to have reconstruction but I was pressured into it,

    Hind sight, always 20/20!

    Nash, I haven’t been able to go full denial, but wish I could. Instead I feel totally invalidated. I didn’t have chemo this time and of course no radiation ( can’t radiate a breast twice) so I don’t feel worthy to be called someone who had breast cancer even though I had it twice! My body has been mutilated beyond repair. Best I can do is hide my body in layers of clothes or very least long sleeve blouses!

    Maybe full denial doesn’t work but it is still my goal!

    Did I mention how much I love my dentist and eye doctor? They never bring up cancer!


    · Share on FacebookShare on Twitter
  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited September 2019

    MustLovePoodles! Hi, we must have been typing at the same time! Thank you, your comments mean the world to me! Yes, I don’t need to rush into getting a colonoscopy now. Maybe in 2-3 years, but it is definitely on the back burner!

    I find myself DVRing all the TV shows, movies, to fast forward through the commercials. Cuts down on a lot of the cancer commercials.

    I hate to sound like a horrible person but cancer is such a big business that I believe there will never be a cure because of the big money that would bevlost

    · Share on FacebookShare on Twitter

Categories