Dx 11/2013

Mypuppy · June 2015

Hi, i feel I am joining in a bit late since my dx, but I am still searching for answersand support from those who can relate. I know people are well meaning, but what woman with breast cancer (or any cancer) wants to hear "if you are going to get cancer, breast cancer is the best Kind. Ouch! Really! I can argue otherwise.

I was dx with invasive lobular carcinoma, stage 2b and Iam still trying to wrap my head around the fact that my oncologist told me i may have had this tumor growing inside of me for 4 yrs! . I was ALWAYS proactive and diligent when it came to my boobs. Annual mammos with clinical breast exams. It finally took my tumor to grow to the size of 6.5cm for it to show up on these screening tests. I dont get that. Had double mast with tissue expanders, 4 rounds of chemo, 33 rounds of rads, implant reconstruction

mary625 · June 2015

Had the same trouble wrapping my head around it after the annual mammos and exams. In some ways, perhaps my non-acknowledgement of the situation helped me through. It took me a while to learn that ILC does not typically show on a mammogram and that mammograms aren't those infallible things that I believed. I thought that all diagnostic procedures could do just that--diagnose. It is just a really unfair position that those of us with ILC are left in. If you want an explanation of why ILC doesn't show up on the mammos, let us know.

Mypuppy · June 2015

Mary, thank you for your reply. Yes, it would be great to learn more as to why ILC is so hard to detect on tests. It did not even show up on my PET scan prior to surgery. I probably have the biggest hang upover this issue and the fact that i had this growing inside of me for possibly 4 years. Praise God it was not an aggressive tumor, otherwise I may have been dx at a much later stage. Nevertheless, stage 2b because the tumor was over 5cm, it was 6.5cm to be precise.

Thanks again for sharing your knowledge.

Chloesmom · June 2015

also was religious about mammos. My previous good one was one year and 5 days before. 2 years before my diagnosis I had one done at another radiology group. They did a call back to do a diagnostic on the breast that got lLC. Am 1/2 tempted to go back and tell them and also get copies

Anonymous · June 2015

Oh yes, so many of us can relate. I remember being elated when I would get the "all clear" letter post- mammo...for five years. Little did I know that dense breasts shield tumors from detection, making it even harder to find ILC tumors, since they grow in sheets--not in lumps, like IDC, and are difficult to find on scans.

And those reasons above are why I had a BMX. I didn't want to worry about any more missed problems if I had any.

Claire

Chloesmom · June 2015

Same here Claire. Once and done with the BMX. It might not change how long we are expected to live but hopefully the quality of our lives will be better not wondering about the other side

wallycat · June 2015

So sorry you are joining the club no one wants to be eligible for. If you read through the older posts, you will see that unfortunately, you are not alone. When I was officially diagnosed, my breast surgeon said that looking at my mammograms and ultrasound and palpating me physically, he would have sent me home, "knowing in his heart" I did not have cancer. Clearly the biopsy trumped that.

I'd been getting regular mammograms since 40. As many ILC gals will attest, mammograms infrequently find ILC.

NOLAGirl57 · June 2015

Just diagnosed on June 1, 2015. Have had cystic breasts and cysts would swell and hurt during certain times of the month. Always had mammo and ultrasound and given the all clear. Not this time. Am menopausal and been on HRT for 6+ years. Don't know much yet. 2 cm in size. Grade 2. MRI scheduled and then holy hell breaks loose in the upcoming weeks/months. I'm pretty scared. Single woman without spouse/significant other and having to depend on my only child (28) and sister to see me through. I hate to burden them with this. And I am terrified. Trying hard to read only about this particular cancer because the internet can scare you to death. How do you all deal with the fear and stress. I am barely able to eat and I can sleep on and off. I lost my husband to brain cancer in 1994 and I survived all that. I know I will make it through this too, and I am grateful for this forum because I have always been someone who needs to share and get feedback during rough patches in life. Glad I found yall. Any words of wisdom from those who have gone through treatment?

jojo9999 · June 2015

sorry to hear your dx. I have one comment about the internet - yes, it is scary and a lot of nonsense out there. When I got my dx I stayed away, but my husband happened upon breastcancer.org and found great, not scary, factual information for me to read that prepared me for many of the doctor visits, especially stuff about reading my pathology report and my options for reconstruction. my doctors also suggested breastcancer.org as one of the few good sites. my thoughts are with you.

December · June 2015

Puppy - I'm sorry you are joining our club - but I think you will find this a comfort zone for you. I think most of us with ILC have stories much like yours. --- I'm probably the most bitter, angry, member on this board. Like you, I did "all the right things". Still, when I caught it early Feb, it went from an itsy bittsy little nothing to 5cm and in lymph notes. 5/6 BMX, and 6/5 auxillary node removal surgy - so, I'm very, very sore.

I wish I had answers - all I can say is that you have lots of support here on your journey.

I'm stage 3, apparently, after the path came back from my BMX - next week going for more scans - looking for Stage 4 stuff. I'm not afraid of the "D" word - I'm 55, still want to do a lot - but I don't want to go through a lot of harsh treatments to extend my life if that =s pain. I've got chemo then rads scheduled.

You've got a lot to think about - but since you said you've been dealing with this for a while - you are probably no longer in that "shock" phase. I think it gets easier when you know what your journey is going to look like - to a point.

Many Blessings, Prayers, Hugs, and much Laughter!

Jerilyn (Formally Vol4Life - now I go by December)

WinningSoFar · June 2015

I didn't go through the "how could this happen to me because I did all the right stuff" phase, but not for a good reason. First, I didn't do all the right stuff and second, I've from the Big Time Skeptic School. I've always thought the press was doing a number on women (in order to sell magazines basically) that if you exercised, were slim, vegan, mammos every year and God-knows-what you'd not get breast cancer. I always believed that bc was basically random and I still believe that (not to say there are some women set up for it genetically).

I've had two different breast cancers and am BRCA negative and no family history. So to me, that's random and I guess I'm just the lucky one. On the bright side, chemo has worked spectacularly and I'm in good health (if you can say that being stage IV) and am living my life as well as I would be. I try to remember that life doesn't have to be perfect to be good.

Moderators · June 2015

Puppy, NOLAgirl and December,

We are so sorry that you are here but happy to be able to hear about your experience, and have you receive support here.

December, please let us know how your scans go!

We're thinking or you all.

xo The Mods

Mypuppy · June 2015

thank you all for your replies and caring words. While i know im a year and a half into my journey, i feel there will always be questions for which I will never get answers to. Like why my tumor did not show up on my PET scan? as it turns out i had gotten two different opinions before my bmx. I dont know if any of you who had a bmx, ended up having cancer in both breasts? My post op pathology showed ilc on right breast and in situ on left breast. Good thing i went for the double. Or My oncologist said i have been looking at deja vu down the road. He did highly stress prior to surgery the fact that ilc tends to show up on both breasts, and sure enough he was right. I am now on Tamoxifen which is making my hormones rage. 49 yrs old and full blown menopause. This sucks. Feel like cancer has not only taken my boobs, but my sexuality and joy right along with it. Now please i hope no one judges me for having a pity party so late in the game, but it aeems this journey is neverending. Hot flashes, sweats, no libido (totally non existant (poor hubby), nerve. Pain from chemo, breast. Pain from rads, sadness, weight gain, depression, but i still manage to hide well from my 2 girls. (10&18). Its been hardest on my oldest, but i still showed them mommy got out of bed every single day and fought real hard for them. The rest is in Gods hands from this day forward. Thank you all and my prayers are with every single one of you who is just starting this fight, for those just going through it, and for all those who fought and survived. We are all survivors no matter what.

Tight hugs.

Dx 11/2013

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