Very small tumor, no node involvement, age < 50, treatment?
hello, I'm looking for other ladies who fit the profile in the subject line
"very small tumor" - mine was 3 mm, found in pathology after what I expected to be prophylactic BMX for LCIS concerns
"no node involvement" - I had sentinel node biopsy, it was clean
"age < 50" - I've heard that ILC is old-ladies breast cancer, so I'm interested in finding out if there are others <50 but perimenopausal out there
"treatment" - I've had BMX (May 29th) with tissue expanders & am recovering nicely... except for the ILC diagnosis at surgical follow-up; there is some discussion of tamoxifen for 5 years... I'm unsure of exactly why given the clean node and the BMX, have consult with oncologist planned for next week.
added more details --
Stage 1 ILC, ER+, PR+, HER2/nue-
PBMX for LCIS, ALH, ADH in R breast and multiple cysts and lumps in L breast - May 29 2012
Lumpectomy for LCIS - March 29 2012
Cyst drainage and imaging studies - chronic - beginning in March 2000
Lumpectomy for fibroadnoma - March 5 1987
Mother (and female family on maternal side) very lumpy cystic breasts, 1977 mother had bilateral mastectomy with implants placed below skin only <failed>, implants revised, eventually developed cellulitis of chest wall and had implants removed in toto
Comments
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I don't really fit you critera I was older though still considered young, and my tumor was a bit bigger at 6mm. Thought I would say hello though, and am really sorry you have to join us, but very happy you did.
When you see your Onc. I'm sure he/she will want you on Tamoxifen. I'm on Aromasin because I'm post menopausal. The reason is to get rid of the estrogen in your body. The fear is we might have some stray cancer cells some where in our bodies. It is given to anyone one who's cancer is driven by estrgen.
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hmm...have never heard that it's an old ladies breast cancer!
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Who you calling old?
Over 50 with a +6cm tumor, so I don't fit your profile, but will say that ILC is one sneaky mofo.
Whatever you decide, I hope it works out well for you.
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I was pre-menopausal, my ILC was about 5 cm, and didn't involve my nodes.
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Thank you everyone.
At present, a lot of the frustration is coming because ILC isn't as "popular" as IDC... so it isn't easy to find information that applies more directly to me.
As far as the old-ladies breast cancer goes...I can't remember where I read that ... the logic was because it's so often undetected until it's become quite large and it is usually slow growing; it tends to be more often detected in ladies of more advanced age. I surely didn't mean that 50 was old .
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Popularity is highly over-rated......I like being different.
I totally understand what you are saying. People assume that BC is BC and have no idea that there are so many "options". I know I didn't until I got up close and personal. Then when I didn't have chemo, I think most thought it must not be serious cancer.
Sorry for being "age sensitive".....I'm not generally, but being DX'd with "old lady's breast cancer" and "old man's leukemia" has me shaking my head. 53? Old? Grrr!
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couldn't say. was 51 when dx'd with ILC utlimately at 1.8cm initially thought to be about 1.2 or 1.5cm, turned 52 two weeks later. grade 2. also had multi-focal ADH and ALH in same side as ILC with ADH and PASH in the other side. snb showed nodes were clean.
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I think you'll find that a lot of the women here were diagnosed in their 40's and 50's when info says that ILC is more common in the age 60 range. I was 49, but I did have a large tumor. Pre-menopausal. Yes, there are far fewer of us than those with IDC.
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hi Nora
very similiar
49.9 months
3.88mm ILC, ER+,PR+, H-
stage 1, grade 1
originally dx lcis
incidential finding ilc
had bilateral- one step recon
onco score=1
tami did not agree with me
I take dim, metformin, supplements, exercise and diet
hope this helps
chocolate rocks
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i don't fit your criteria - sorry you had to join us here. you will find lots of valuable info - the ladies on this board are quite knowlegable and supportive. i am ususally not age sensitive either - rather like it when i find myself here for another year. but maybe there is a better way to describe ilc than old ladies disease. not trying to make you feel bad - just sayin. hope you get the answers you need.
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chocolate rocks...
what is dim?
I've been taking supplements for years now (vit E for the profusion of fluid filled cysts, vit D and vit B12 for other things - over the years the supplement list has changed a bit now and then) - also eating chicken, spinach, and avocado regularly (BS has done research that suggests these help with estrogen receptivity and hormone conversion), keep my weight under control (well, it went from 137 to 145 with the surgery), and exercise at least 5x per week (3x per week = 1 hr walking or biking plus 1 hr pilates).
today, my biggest gripe is the itching & burning from TE fill <not that it's really much to gripe about, just makes clothing massively uncomfortable>
Thank you!
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Isn't it interesting how much the "old ladies" part really struck a nerve with us. I actually have read the opposite. That this cancer most often strikes in the 40s to early 50s. I was 55 when I was first dx with this. Also a very small ILC lurking amongst the LCIS.
Here is one link that talks about the age thing but as we all know statistics describes groups but every cancer is an individual case.
http://www.cap.org/apps/docs/reference/myBiopsy/BreastInvasiveLobularCarcinoma.pdf -
I am 45, premenopausal and was dx with ILC (ER/PR + and her2 -) and just had my lx last week. It took until today to get my path report. Good news is that the nodes were all neg. The difficult part is that the pathologist had too many things to wade through in my tissue to be sure there were clean margins. Apparently there is DCIS, LCIS, and ALH extensively present. LOVE that word extensively....NOT! So, I thought that I would be doing the lx, rad & tamox route but am now seriously considering a BMX. My breasts are very dense and I've been told "I could hide a dinner plate in there and still it wouldn't show up on mammogram." (Isn't that a spiffy analogy?!) It's funny...when I talk to family/friends about it they all think that surgery is way more radical than chemo or rads. I think pointing a beam at my breast and praying that I don't have anything else in the other breast and don't get a secondary cancer from the radiation sounds worse. I hate surgery and hate the thought of losing the breasts that I love (still perky at 45 the bastards. They are mocking me.) I am so torn. I think that my gut says do the bmx but I want to be sure I'm not being too dramatic about it. If only the research was more clear about the risks.
Anyway, NoraLCIStoICL, a long and slightly narcassistic response to your request for others out there going through the same thing. Nice to meet you. Glad to hear that you are doing well after the surgery.
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Luckily for me, I was an A cup so that you could actually see the tumor once it decided to rear it's ugly head. It literally seemed to appear "life-sized" out of nowhere one day. The thing that helped me decide to BMX was the fact that right up until my surgery day, I was still having clear mammograms and ultrasounds.........with a lump the size of my fist on my upper chest!
I have since learned that ILC tends to act that way and knowing that my sister (38DD) could have a tumor as big as my head hidden in there before it became noticable.
I was not willing to take chances knowing that ILC can be VERY sneaky and hard to find. Not sayihng I am still not worried about a recurrence, just feeling like I took reasonable precautions.
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Kestrel girl- please clarify. What do you mean " you could actually see the tumor"? How was your tumor discovered since you said in your post it was not seen on mammo or US?
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I mean I woke up one morning with a visible lump at 12 o'clock on the right side. It seemed to come out of nowhere. Went to ob/gyn and was sent for mammo/ultrasound which showed nothing but the usual dense breast tissue. Was told to watch and wait and come back for follow-ups in 6 months.
I lasted 4 months, although the lump (I called it a "wad", because it really didn't feel like a lump.......more like a knot in a muscle from a charleyhorse or cramp) didn't really get larger, it just seemed "different". Maybe because I was totally aware of it. I had small breasts and have nursed two kids, so the top part of my breasts were not full and you could literally see a swollen lump at the top of my right breast. If I wore a tight or lower cut top, you could tell something was out of whack.
The follow-up mammo/ultrasound still showed nothing, but the radiologist (a different one) said he wanted to do a biopsy of lump and axilla. Results of that showed ILC in the wad, lymphoma in the lymph nodes. Subsequent MRI showed a right breast full of stuff. Tumor ended up being >6cm and in all 4 quadrants.
I knew then I could not trust a mammogram or ultrasound to find ILC........it was a blessing that I was small-breasted, relatively thin and paid attention to my body.
Edited: FWIW I still have the letter they sent after the initial mammogram telling me that they could feel it but not "see" it and that they considered it benign. I am thinking of framing.....
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Nora.....I am 48 years old and was diagnosed with DCIS on 7/11 and diagnosed with a new primary of IDC and ILC in February of this year. Thanks to the sharp eye of the radiologist the ILC was seen on the mammogram. My surgeon insisted that it was "just a shadow" and almost didn't biopsy it because of the location (axilla). I am perimenopausal. My treatment consisted of lumpectomy to remove both IDC and ILC, currently doing chemotherapy (Oncotype 27 on IDC) and then radiation.
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Just wanted to add that I had a BMX, and I tried, but couldn't take tamoxifen, and rejected the idea of Lupron (for fake menopause) and an AI, and chose to go to the gym 6 days a week, clean up my diet, and take DIM.
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Kestrelgurl- That's quite a story. Thanks. I have heard before that ILC is often difficult to see on mammo and US. I chose to keep one breast but will continue to get MRI surveillance. Any hint of a problem and off she comes.
Best wishes to you and all of us for continued healing and DFS (disease free survival). -
Eileen, my cancer was more advanced than yours, so the situation is different. But, for what it is worth, I insisted on a BMX, which was prophylactic on one side. The first surgeon flatly refused. The second guy agreed, but his oncologist thought I was being way too extreme.
I had the BMX and although I had had MRI, ultrasound, mammo and CT scans which all showed the "other" breast as clear, they found extensive LCIS and ALH. So, good riddance, as far as I am concerned.
It is weird to be boobless, no question, and there are obviously downsides. But I have no regrets.
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Thanks Momine and Kestrelgurl,
I am seeing the RO again today to ask some more specific questions now that I have the path report. I'm trying to do my due diligence and make sure that I am keeping an open mind about it all. I'm just really concerned about the sneakiness of ILC and all of the other garbage that is in there. Still leaning toward the bmx. I have so much death by cancer in my family. The genetic counsellor was surprised at the amount and variation of the cancers, but I am BRCA 1&2 neg. It is so daunting to have to make these decisions. I forgot to mention also that my 20 yo daughter was dx with germ cell ovarian cancer on the same day as me. Apparently her type of cancer and mine are not linked because hers does not originate from the epithelium. They got all of her cancer out, spared her uterus and other ovary and now she's just completed her 1st round of chemo. Anyone have a crystal ball that I could borrow for a few hours? I promise I'll share the lottery winnings ;-)
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Here is my non scientific explanation- dim is a mixture of broccili and cauliflower.. It helps balance estrogen, the good estrogen- it has and continues to be studied- I recommend Natures Way Dim.
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Chocolaterocks... Thank you
Today I have my 3rd fill with PS. Rather uneven, but was told that's because the condition of L was vastly different from R at surgery (4 weeks tomorrow).
Tomorrow... First visit with MO. Not planning on doing much else tomorrow or Wednesday... I expect that my mind will be too jumpy (jumping from shiny object (information or hope) to the next shiny object (some other information)) to focus on work.
Thanks everyone
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Eileen, it does seem odd that your daughter and you would both get cancer at the same time. Mine also came in a cluster with my mother and aunt being DXed around the same time. Mom had ovarian, aunt had breast and uterine, me with breast cancer. We do not have the BRCA genes, but it seems like there has to be some kind of link.
I wish your dd an easy time with your treatment.
How did your appointment go? -
MoMine,
I've been making the rounds of appts. I saw the BS last Thurs, RO Fri and the MO today. The MO hasn't even sent my sample off for oncotypeRX yet! I am not having great chemistry with my MO. The appt with the RO was great. In the end he gave sage advice...trust your gut and don't look back. BS and RO both think either approach is reasonable. MO says that it may be overkill for such a "teeny tiny cancer" and she isn't concerned at all with extensive LCIS and is "sure" that my oncotype will come back very low. In the end I have decided on the bilat mx and to change MO. I meet with the plastic surgeon tomorrow. I may go for the autologous fat transfer for reconstruction. Takes longer but then I don't have to worry about implant replacement later. TFLAP is out of the question due to prev abd surgeries.
My daughter has doen very well with the first round of chemo and is ready for the second round this Fri through Sun. Then there will be only one round left and she'll be completed by the end of July.
There is still so much that people do not understand about cancer. Great advances but too many gray areas. I wish the reliability of negative result of BRCA testing was better than it is. And there could be so many other genetic profiles that haven't been uncovered that are lurking in the shadows. Not to be a pessimist...I feel very good about my decision and the curability of my cancer at this point. I feel blessed to have caught this early. I have friends and family that have had to deal with metastatic disease with various outcomes. At this point my journey is not even close to that. Still, I think calling anyone's cancer "teeny tiny" is inappropriate. 1 cancer cell is a cancer cell too many.
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Boy calling you cancer a teeny tiny was sure is inappropriate to say the least. By the way no one can predict how our Onco scores will come back. My tumor was 6mm but my Oco score came back at 24. I have yet to figure out how they come up with the scores, but it sure isn't size.
Eileen I do hope things continue to go well with your daughter. I just can't imagine how you and she
must feel at this time.
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An Update...
Saw the MO yesterday. Dear Husband was with me and I was armed with the NCCN Guidelines and my long list of questions and concerns.
After the MO left the room, DH was still confused - the NCCN Guidelines say one thing and I had just agreed with whatever the Dr was saying about taking Tamoxifen & the 30 years of data out there & etc (poor DH, I then started crying and confessed that I just hadn't wanted to believe or accept that Tamoxifen was a reasonable treatment for *me*).
When the nurse came it to get me to sign the papers for Oncotyping (yay! I was hoping that this would be possible), we asked if the Dr was with another patient. Nope, I was the last one of the day and he was still in the office. So, Dr and Med Student came back in the room and Dr took his time to reassure both of us and explain why he thought that the Tamoxifen was best for me - especially for latency protection (that is protection against future BC in what breast tissue I have left and against future mets somewhere else).
So, I have a RX in my possession. So, DH and I agreed that I'll start weaning myself onto the Tamoxifen after we return from a business trip the week of July 9th. Fingers are crossed that SE aren't unbearable.
Tx, Nora
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Eileen, when I read your post... There are so many parallels that I sat in the car and cried...
Eileen - premenopausal and was dx with ILC (ER/PR + and her2 -)... lx...nodes neg...
Nora - ditto
Eileen - The difficult part is that the pathologist had too many things to wade through in my tissue to be sure there were clean margins. Apparently there is DCIS, LCIS, and ALH extensively present. LOVE that word extensively....NOT!
Nora - ditto except for DCIS
Eileen - So, I thought that I would be doing the lx, rad & tamox route but am now seriously considering a BMX.
Nora - I thought I'd be doing the lx, no tamox, and watchful waiting - at some point after the lx I wanted to do BMX (and I did 4 weeks ago yesterday)
Eileen - My breasts are very dense and I've been told "I could hide a dinner plate in there and still it wouldn't show up on mammogram." (Isn't that a spiffy analogy?!)
Nora - never heard that analogy, but my breasts were so dense that the interventional radiologist at the hospital wanted to do a biopsy every time I walked in the dorr
Eileen - It's funny...when I talk to family/friends about it they all think that surgery is way more radical than chemo or rads. I think pointing a beam at my breast and praying that I don't have anything else in the other breast and don't get a secondary cancer from the radiation sounds worse. I hate surgery and hate the thought of losing the breasts that I love (still perky at 45 the bastards. They are mocking me.) I am so torn. I think that my gut says do the bmx but I want to be sure I'm not being too dramatic about it. If only the research was more clear about the risks.
Nora - luckily (I guess), no one other than the aforementioned internventional radiologist thought that BMX was radical - I suppose because DH and I always approached the "reveal" as... the stress of not knowing I'm safe and the stress of test after test and waiting after waiting is just too much... at least with a BMX we'll know that I'm safe
My breasts were still perky, but I didn't love them. After 12 years of cyst-drainage, imaging tests being repeated, explaining to new doctors what my concerns were (& being told that it's all benign), aching breasts, itching skin because of cysts enlarging.. slightly shrinking.. enlarging even further, excessive boobage popping out of my bra (a particularly obnoxious fluid cysts)... Nope, they weren't my favorite parts but I was still proud of how I looked when they weren't acting up. I already wanted to get rid of the worry and the aggravationt that they caused, but thought I'd wait until menopause was over or until I turned 50.
BS told me that given how lumpy, bumpy, grumpy ridden my breasts were - the chance that they'd improve after menopause was VERY slight - she wouldn't bank on it. And after the lx & dx that it was LCIS, we decided that it was time.
We didn't bank on or expect that pathology would reveal ICL.
That's where we are now... ICL, very small, no nodes... Time for genetic profiling and counseling - especially paying attention to Lynch Syndrome (oh yeah, joy oh joy - Mom had colon cancer at 37 years old and had large portion of colon removed + uterus + ovaries, AND Mom had very cystic breast & has said for years that they were precancerous), time for stepped up testing and observations, and time to start Tamoxifen.
Sigh, all of the choices and the justifications that this journey is bringing set easier on my heart and mind with the passage of a single night (and another night and another night).
***I don't mean "justifications" in any derogatory or negative way, they aren't excuses or vanity, they're the reason that justice/choice makes sense to each individual****
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Hugs Nora!
I was hoping that choosing a BMX would spare me from tamox as well. I spent a lot of time with my MO and she helped me understand the risk of systemic CA, albeit small. I am waiting for the Oncotype results to come back, hopefully in a week or so. If that is low, I will talk to her about Tamox again, but since I am doing the mastectomy to prevent recurrence it makes sense that 5 years of tamox for 20 years of benefit would be wise.
I am meeting with my BS tomorrow to sign surgical consents and will find out soon when surgery can be scheduled. I have decided to go with autologous fat transfer for reconstruction. It is a relief to have finally made the decision, but now I am getting emotionally struck with the implication of losing my breasts and the journey that reconstruction will entail. Silly to be upset about the loss of a body part. (or two to be exact) Why do head and heart always struggle?
Do you work full time? How long was your recovery post BMX?
It is great to be able to connect with someone else going through a parallel journey. Feel free to PM me any time.
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Eileen,
Ditto on the PM if you'd like.
I am very blessed to own my own business - I do research and writing for medical devices (:O makes me a bit of a nightmare to unsuspecting doctors) - so I had the flexibility to ease back into work.
First 2 weeks I planned to be unavailable.
3rd week - I worked about 8 hours, spead out in hour long chunks
4th week - I worked about 20-30 hours, incl one long session that was a mistake
I pretty much held off working until I was no longer taking pain meds & I could start doing some very gentle stretching. My work has me sitting at the computer & frankly, it just wasn't comfortable the first couple of weeks after surgery - it didn't HURT, it was just uncomfortable and very tiring.
Nora
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