ILC - The Odd One Out?

Living life is more important ..and I'm so glad to see you're doing well three years after diagnosis

Definitely praying for good outcome. I am just finishing up radiation and always worrying if all this treatment will work and if it will come back in the other breast. I was diagnosed as IDC from biopsy prior to surgery so only opted to have uni mastectomy. After surgery the path report changed to ILC. Now I'm worried I should've had a double mastectomy. The second guessing and worry never ends!

Hi Evgeniya welcome to the boards. I for one can relate to the whirlwind between diagnosis and treatments. So much varying information to sift through, I am also at the point that I just have to trust my doctors. Especially as there does not seem to be a standard of care, each surgeon, MO and RO seem to have different protocols, if this board is anything to go by. I know everyone advocates taking control of your own care, but to be honest, I am so emotionally and physically exhausted at this point, I am just going with what my doctors recommend and hoping for the best. Although this board has been invaluable re support and info, sometimes, for me, it is just too much conflicting info to process.

smrlvr, your doc is following the official guide lines. My doc is not, but I am OK with that. Also keep in mind that I was pretty much as close to stage 4 as you can get without actually being stage 4. For this reason, they were concerned about occult mets. 

I get a full blood panel and tumor markers before each visit. A good doc can tell a lot from liver function numbers and other such.

On the 1st and 2nd anniversary of my surgery, I had full staging scans, meaning a CT of head, chest and abdomen, plus a bone scan to look for bone mets. When I was still clear 2 years out, my doc told me this meant, to him, that the treatment "worked," i.e. we eradicated whatever buggers were growing when I was DXed.

From here on out, as long as I do not have symptoms, we "drop down" to less invasive scans. So, on my surgery anniversary I will have a chest X-ray and a liver ultrasound. The blood work continues, but instead of the 4X a year the first 2 years, it is now only every 6 months.

Hi, I'm a newby here, from New Zealand. Diagnosed in January of this year and just finished treatment a month or so ago. I read somewhere that there could be a connection between us Lobular ladies and having a father with Prostate Cancer. Does this apply to any of you? My Dad has prostate cancer so I was just wondering if I am the only one?

Hi Fizzdon.  My dad had prostate cancer and both my sister and I got bc, she IDC and I ILC.  I hadn't read about this connection but will definitely look it up.

Kathy

This is interesting about the Father connection. I was reading something about a greater connection with the paternal line for ILC...My Dad had stomach lymphoma (not h-pylori related) and his Father, pancreatic cancer.  I am working on getting the BRACA gene testing.....

Sgreenarch, congrats on your anniversary and son's engagement!!

I was just getting up to date on this thread and was pondering a few things. My father died of emphysema at 40 (heavy smoker) and his father lived until his 80s.My paternal grandma "reportedly" had breast cancer, probably 70 years ago, and died from something unrelated in her 70's so who knows.

My maternal grandma and aunt died from cancer (kidney, and stomach I think) in their 80s which it sounds like may possibly have a link to ILC.The daughter of the aunt with kidney cancer also got a cancer, colon I think, but survived and is in her mid 70s now.

I had an maternal uncle that died from brain tumor before I was born and  My mom and her other sister and brother never had any history of cancer at all.  

I was 59 at Dx. My cancer was discovered early by diagnostic ultrasound, due to an accidental series of events. The symptoms that lead to my ultrasound were identical to those I had had 20 years earlier but that disappeared as had the ones prior to my ultrasound. With the difficulty of routinely spotting LCIS and ILC I could easily be sitting here today blissfully ignorant while the ILC was growing. 

This makes me wonder if the LCIS at least had been present for many years. Given the small percentage of BC our ILC accounts for I wonder how many others there are who do have LCIS or develop low grade ILC at an older age and are never diagnosed and therefore are never counted in the statistics . Just a thought that popped into my head.

Another thing I found out this week that may relate to BC in general is that there is some recent research that appears to show a possible link between nicotine and BC. I gave up smoking 20 years ago but chewed a truckload of the gum as the thought was that nicotine by itself does not cause cancer. Certainly food for thought....

As for me, I am just finishing rads which has been fine apart from the sleepiness. I have an appt. to see my MO this month at Dana Farber who are as good as any so will just go with the flow for now. I expect he will put me on an AI and I will just have to see how that goes. If the SEs are too bad then I will have to rethink. The only thing I do think about is if I should push for MRI rather than mammo next time. BS wants next years mammo done at hospital so she can review.

hi everyone - very interesting conversation about our fathers. The only cancer in my family is on my father's side. My father's father had stomach cancer and my father's brother had colon cancer and oral cancer. There is no other cancer in our family that we are aware of. I am the first on either side of my family to have breast cancer.

Yep, my "dads" (my father and uncle are identical twins) have had, between them, skin cancer (basal cell and melanoma), testicle cancer, prostate cancer, bladder cancer, pre-colon and pre-kidney cancer. Their sister died from melanoma in the eye. Their mother died from bladder cancer. Basically cancer central. The twins are, however, still walking, talking and working at 83.

My father's side of the family (7 siblings and parents) are all cancer free with the exception of one of my aunts who had gallbladder cancer in her late 60s/early 70s.  My mother's side is a different story.  My mother and her father both had the same colon cancer (mom is 73, stage IV, and NED), her mother had endometrial cancer (passed from it), her sister had breast cancer (20 years out and doing well), her maternal grandmother had ovarian cancer (passed from it), and her maternal uncle had late-adult onset leukemia (passed from it).  We tested negative for BRCA 1 and 2, BART (or is it BRAT), and Lynch.

My Father died of Lung Cancer and that is the only known cancer in my family.  Very interesting link

scb1964, Welcome to BCO. You have joined a very supportive and knowledgeable community of others with shared experiences. Thanks for posting your story. Please keep letting us know how you are. The MOds

I have been wondering about the Mirena link...I had it

My father was diagnosed in 1995 with stage 2 bladder cancer, but he did not pass away from cancer. He died as a result of dementia in 2013. : (

My father's father had prostate cancer, but died of old age in his 90's.  I do wonder too if there is a connection.