ILC - The Odd One Out?

Momine

Deb, yes, I started, but realized that it needed quite a lot of work to ask the right questions, with the right options for answers, and options that could later be tabulated in a meaningful way. Then I got side-tracked by real life.

Deblc

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

Momine

Deb, thanks for understanding. I may still do it, if I get the time.

My next round of testing is in August. Keeping fingers crossed for clean scans. I am grateful to be doing well, but I also know the beast could rear its ugly head anytime.

Deblc

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!

Evgeniya

hey girls! new here...... joining you if i may....  when i was diagnosed things started to moove so fast that time for research and qwestions was out ..... scance more scance docs mor docs sergery mor docs and scance... crying nights out...... drains.... alll was done before i could say " cancer" you jast hope that docs now what thay doing.. you pray for god that he knows what he is doing.. and thats it learning to live through all side effects amotional and fizical... such a crup..... 

Deblc

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

Momine, what scans will you be having in August?  My MO isn't doing anything.  Just goes by my symptoms alone.  I do t know how I feel about that.  

Momine

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.

Lily55

I have annual liver ultra sound, annual chest X-ray, annual ovarian scan, and for last two years have had an annual chest MRI at my insistence, and six monthly blood tests for everything including tumour markers, although the latter are not necessarily reliable. 

In addition to the above that are paid for by the government health system I pay for Oncotrail tumour stem cell marker tests to be done at the testing centre in Greece - the RGCC at least twice a year. 

fizzdon52

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?

Trisha-Anne

Hi Fizzdon, welcome, I'm an Aussie!

I too have read about the connection with prostate cancer, but my dad didn't have it. The only cancer in our family was my brother - he had bowel cancer at the same time as I had bc!

Trish

QCA

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

Nocompromises2013

my dad had stomach cancer, but my paternal uncle had prostate

Deb - welcome 

I had ILC and a uni Mx a year a ago I was very hesitant for my first mammo on 'good ' boob this year. But all was well and  my BS said you only have a 1% increased chance of Cx in that side. You made the best decisions for you at that time and hopefully all will be great for you too. 

rivercaralee

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

Hi, All,

Long time no speak. Mostly for good reasons, (been busy w work, a son got engaged, family ok, just living!) Today is the four year anniversary of that initial routine mammogram that started this whole thing. The good news is that I am now graduated to just seeing the onc once a year, and I continue to see the Breast surgeon 2x a year and have an MRI and a mammogram/sonogram alternating every 6 months. I have tried to begin to see this anniversary as day one of my healing, rather than as the start of something terrible. Had they not found it, I would have been much worse off. I guess we all get some knocks in life, and I hope that this is one that I can see as one that I've dealt with and can be aware and watchful, but no longer paralyzed w fear. Stuff happens, and then maybe it will all be ok. Hope so.

My father had leukemia, (which he survived for 21 years until he had a relapse) but also had prostrate cancer in the middle. I do wonder if there is a connection, but I think that my BC came from exposure to DES in the womb. Will never know, but I tested BRCA neg.

lyzzysmom

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.

woodyhollow

hi all

Fizzdon - nice to see you on the ILC forum (under not such nice circumstances!), saw you on the kiwi one... My brother and I are the first ones in our family to get cancer as far as we know. My brother has had leukemia for the past 13 years.

Just starting on Femara as (on my insistense) they have done a blood test and I am post menopausal, as I thought. Was on Tamoxifen for the past 6 months, so will be interesting. Just had a bone scan and CT scan one year after DX and all clear!!

aff

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.

fizzdon52

I found this really interesting, apparently it's not just prostate cancer but cancer in general in fathers of Lobular breast cancer ladies, although prostate cancer does stand out.

http://www.biomedcentral.com/1471-2407/11/497

Momine

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.

Sweetie1972

no cancer as of yet for my dad. He is 67.

AmyfromMI

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.

vlnrph

Thanks to fizzdon for that link - we are quite the international group here!

There are now expanded panels for gene testing available. They are also much less expensive in the US than earlier versions, due to our Supreme Court decision that struck down the Myriad company patent. 

The one called BreastNext goes far beyond the usual BRCA 1/2 and BART "rearrangement" analyses. For instance, CDH-1 mutations, although rare, are associated with both ILC and hereditary diffuse gastric cancer. 

Genetic counseling centers should now be getting caught up after the deluge they experienced last year following Angelina Jolie's announcement. Something to think about if you have a significant family history.

aquarian23

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

scb1964

Guess I will add my fun facts to the mix, very interesting and helpful information from everyone.  Diagnosed at age 49, had 1 child at age 30.  Grandfather had cancer, father cancer free.  Have a cousin on grandfathers side who had IDC.   Curious how many of you pre-menopausal may have been on birth control.  I remained on it until diagnosis to make my periods less heavy, etc.  After prescription was changed to another generic I remember feeling breast changes in the left breast where ILC was found.

I also found mine myself, mammograms negative and ultrasound results suggested I should check again in 3 mos.  Luckily my surgeon disagreed and wanted to see what was going on.

Currently in process with chemo (4 AC, followed by 12 weekly Taxol -- 7 left to go); radiation will be for 6 weeks.

Moderators

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

mary625

scb1964--your situation sounds very similar to mind.  I'm now 52, but was diagnosed at 49.  Came out of nowhere!  No real family history except a maternal grandmother with uterine cancer.  I was on birth control up through diagnosis too.  Wondering if yours was also progestin based (ex. norethindrone pills, any bc pills that have green as well as yellow, Mirena, etc.)?  I am doing well now and just about ready to celebrate 3 years as a survivor.  

You've been through the worst part.  Everything from here on should be easy peasy in comparison.

woodyhollow

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

MomtoIrishQuads

Interesting thread.  My birthfather had prostrate cancer.  I was tested twice for BRCA1/2.  First time after I found my birthfamily (I was adopted at birth) and found out that every female on both sides had breast cancer (talk about a freak out moment).  I tested negative.  Then, 3 years ago after I was diagnosed with DCIS, I was re-tested - and again, BRCA1/2 came out negative.

Then in May of this year, at the age of 54, I was diagnosed with ILC after I insisted on an MRI (they didn't want to do it since they said that a mammo would be better for catching DCIS).   Luckily I was Stage 1 - I was tested for the expanded genetic panel (Ambry) and it was negative.  

I didn't realize that ILC is not that common (my oncologist doesn't tell me much).  My oncatype was in the middle (21) so I opted for chemo as a precautionary measure but dropped out after one, very scary and intense chemo treatment.  5 treatments of 22 into radiation - and then Armidex. 

It would be interesting to look at the incidence of ILC among daughters of prostrate cancer patients.  

KSil

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.