finding those sneaky mets

By doing a double mast I avoided radiation and never have to wear a bra again. That made me very happy. I go flat all the time and the arthritis from my neck and back improved dramatically!!! Seriously. I used to wear a neck brace and haven`t had to since.

Wow! Thank you ladies for all the info here.  I thought that with the bilateral mastectomies, even nipple sparing, that we were completely safe from a recurrence in the breasts.  I had no idea that it could come back in the nipple or armpit or skin until AFTER I'd had the surgery in 2008.  It helps to know it could happen so that if it ever does, I won't be so angry and shocked.  Thank you and good luck with fighting the fight!

I am so sorry to hear about your recurrence Bighair. How frustrating to be dx'd incorrectly as well!

Did you get a 2nd opinion, or only find out post stomach surgery?

I hope you are coping ok with any treatments and post surgery.

Sending you a big cyberhug.

Astrid. xx

Same thing happened to me. I developed large-volume ascites. Had a normal abdominal CT scan, normal liver labs, no jaundice, no high-risk behaviors, yet the doctor was INSISTENT that I had cirrhosis with end-stage liver failure. Had an unnecessary liver biopsy before they finally scanned my pelvis. I had a twenty pound ovarian tumor. Ovarian cancer is about the second most common reason for ascites. You would have thought he wouldn't have kept trying to cram a square peg in a round hole, so to speak. I kept saying all along that they were wrong about the liver.

Barbe, I'm good.  I've been doing quarterly follow-ups for almost two years with tumor markers drawn also as my CA125 & CEA were very high before my surgery.  I think I have either one or maybe two more quarterly, then get to go to twice a year.  I was very fortunate that my tumor is considered low malignant potential. Going into my surgery based on my CT scans the gyn/onc thought I had a very poor prognosis. 

More than anything, aside from the trust issue, I'm so angry at how badly that doctor (not the gyn/onc) scared my parents for most of a week.  They thought I was dying and not eligible for liver transplant because I was uninsured. My liver is fine.

Kristin - I've been wandering the Web all year looking for a forum that I can relate to, and finally found this one. Your topic ILC mets hit the nail on the head and so now I've joined to post a thank-you. All the topics under ILC finally sound like what I've been up against this past year and what I expect to face in future years.

Thanks for starting this topic. It's a problem -- the breast is gone but I know the cancer cells remain. Hopefully AI will keep them small, wherever they've got to.

My next decision is whether to have the other breast off too. It certainly looks lonely. I'm not ready yet, just had a clean MRI. Also last year I had to have a TAH for Grade I endometrial cancer found on PET scan. Plus simultaneous chemo/RT for anal cancer, which was way worse than surgery. Add in the biopies and port insertion and removal, and I think I had 5 surgeries last year with minimal time to recover from each one. So I won't be up for a prophylactic mx for at least another 6 months, maybe a year.

At first it drove me nuts that I had this BC for so long undetected by annual mammograms. I can't imagine your experience of finding mets with no breast tumor, but I'm slowly learning how cancer works and now feel mostly pity (not anger) for oncologists who spend their days giving unsatisfying answers to our most important questions. it was enlightening that last month my surgeon went back and looked at the old mammograms and could not see the growing ILC even though she knew it was there.

Lobular cancer CANNOT be seen on mammograms - only an MRI or CAT scan with contrast can show lobular cancer or lob mets

I understood it more commonly grows in lines likes grains of sand or on sheets not masses - by the time it gets to a mass it is more advanced of course, most ILC is grade 2 when found according to the Royal Marsden in London

Thanks for posting, you guys! I'm so sorry for all who've had a recurrence, but am amazed at your courage and tenacity in fighting the fight.  My ILC was discovered by digital mammogram (my first mammo ever at age 42).  The doc said I had dense breasts, too, so he did a needle biopsy and confirmed the diagnosis.  I opted for a mastectomy on the right and a prophylactic mastectomy on the left.  I'm glad I did both because they found cancer in situ on the left as well.  I'm 5 years out now, just stopped the Tamoxifen, had a hyst and ovaries out with lots of cysts back in '08, but now lots of pain in my spine.  I'm hoping it's just a herniated disc. 

I have just had a circulating tumour cell blood test done - it can detect cancer cells before they start to grow and develop a blood supply............so if the level is too high I can begin treatment early before symptoms show - its private of course but I can send anyone the link if you want to know? 

I think standard doctors do tumour marker tests which are completely different and not very reliable at all in their results as it depends on what you ate before, time of day blood is drawn and all kinds of other non cancer related variables that affect scores......- but I am in europe where even tumour marker tests are not always done as standard practice - you could ask your doctor though

Bean, I am SO sorry no one has posted for you!! I've been off the boards for a bit and just saw your post now. Your sister is in my prayers now, how is she doing and what were the results? ILC is different than a lot of breast cancers. Did you find support on another ILC thread?? Please know we care!

Bean how,lovely to think of practical help too many people are not happy asking for that. Other than that just be there for her listen care and show you care - perhaps look at support services like counseling or support group for her children so she knows they have focused support too and she has the space to focus on herself

Thank you so much, ladies . . . It's so wonderful that you are available to those of us for whom this is all so new. Whether it's a personal dx or one of someone we love, it brings a level of comfort to know there are others out there who are willing to help, listen, and care. Because there are so many like you, others don't have to be in the dark.

I am prepared to talk to my sister about death. I KNOW that will not be a good thing for my mom to have to do with her. Ironically, talking about possibly loosing my sister soon has helped me deal with this whole thing a bit better. I don't talk about it with my sister or my family yet, because I don't think any one else realizes how bad this can possibly turn out to be. I'm not convinced that my sister even understood the implications of her metasistized ILC after her first dx 9 years ago. Never did I hear anyone say that it was not curable and that it would take her life sooner or later. I don't think the doctor's ever explained that to her, and if they did she did not share that information with anyone else. Through the things I've learned on this web-site, I now know what we can be facing. I'm not saying that I'm ready for my sister to die or that I think she is going to die soon; I'm just prepared for the worst if that's going to be the case which I know it could be.

Once my sister is released from the hospital for this whole colon thing, she will then see her ONC and undoubtedly undergo more tests and then she (and the rest of the family) will better understand her prognosis. Once we get there, I will be more comfortable talking to everyone else (including my sister) about the inevitable and how soon it may come.

It's funny that you say I should keep my sister laughing . . . I've taken on the role lately of her personal comedian. After her surgery to remove the blockage in her colon, they were waiting on her to have a BM. I text'd her "Praying you poop." before I went to bed one night last week. She got a kick outta that.  

Enjoy our weekend everyone! Thank you, thank you for being wonderful! Brenda

I just joined the boards a few minutes ago. I had my second fat transfers today to help with damage from radiation side effects. I feel the same as you do. My.doctors missed my tumor even with 5 scans and begging for MRI or biopsy. I was told I was to young to have cancer...my Dr reluctantly ordered another scan she was afraid insurance would've cover the cost! The results came back no evidence of malignancy and treated me like a hypochondriac. I ended up calling a friend of mine to order another scan and do a biopsy She sent me immediately for surgical biopsy. My tumor was over 12cm even after 6 rounds of aggressive chemotherapy. The tumor was in my chest wall and had filled my entire right breast and causing a reaction by casing larger areola and a growth beside my nipple!!! I have most recently developed excruciating pain in my right middle back and have lots of nausea and I also am scared. I have 3 oncologist fighting my insurance company on getting a PET scan. Haven't had one since first diagnosed. It has been a nightmare! I have to travel to Atlanta because no surgeons in my area do lat flaps. I have made so many trips I cant count the but looove my Drs here. Just praying I get the scan. I am just scared!

It is nice to vent to someone who understands

Just remember we must live with passion!!!