Just Diagnosed
Hi all, I'm new here, but I've been reading for a week or so now, and reading all your posts has been a huge comfort (and education!).
Anyway, here's my story:
I've had two prior breast surgeries. In 1991 I had a breast reduction, and in 2009 a lift + implants.
I felt a lump (it felt like a tiny pebble) back in November just after having turned 39, but after a similar lump scare a few months earlier that turned out to be a swollen lymph node, I decided to wait until the holidays were over to see if it went down. It didn't, I went in in late January, and a biopsy was performed in Feb.
The biopsy came back "normal breast tissue."
But a palpable lump still remained (and honestly...I could feel it, very subtely, growing larger as the weeks went by, but I was in denial), so the surgeon said he'd be happy to take it out...if I wanted. He was "positive" it was scar tissue from the lift. I was knocked flat on my back with surprise when it came back as ILC. The surgeon was pretty shaken up about it too, after his reassurances that it was nothing.
I'm fairly young, but it seems to me like there are a lot of "youngsters" on these boards, and several with ILC. Isn't that a little uncommon? Those of you in your 20's-40's with ILC, does cancer run in your families? It doesn't in mine. I have no known risk factors, except the obvious (I'm a white woman).The "Why?"question has been killing me for the past couple of weeks. I wonder if that will ever go away.
Sooo...even though the doc took out a 3.5 cm lump of breast tissue, the margins were not clear, so he went back at the end of March and took out 8 cm, as well as four lymph nodes. The margins were clear this time, and the lymph nodes were negative. I'm so relieved about that. Those two weeks of waiting had to be the most torturous weeks of my life.
I've had BRCA testing done (negative), an MRI of both breasts (negative), and Oncotype DX (score was 13). Due to low Oncotype, the chemo decision has been big for me...but I think I'm going to do it. I'm so worried that this cancer was percolating in 2009 (8 months before I felt the lump) when I had breast surgery. They cut that area all up, and I'm so afraid that I have cancer cells spread all over my breast because of that. My oncologist said it was a possibility, but this thing that's causing my big worry right now doesn't seem to be affecting his recommendations for treatment at all.
So here's the current plan:
Chemo (4 rounds of TC)
Radiation
Tamoxifen for five years
...And we'll take it from there. I have all sorts of worries about each of these phases of treatment, but I figure I need to start crossing each bridge as it comes.
I really want a PET scan, or what other options do I have? I'm not sure. With two previous breast surgeries, I don't 100% trust the sentinal lymph node biopsy, but my oncologist seems to... Everyone is treating this as a classic case of early ILC, but I am so paranoid something else might be going on, either in one of my breasts or somewhere else in my body, mainly because of the previous surgeries. Oh, and while the surgeon was dealing with the breast lump, he found a lump on my thyroid. They biopsied that (but not under U/S guidance, which is the recommended procedure) and it came back negative. Still...I need to get that check again (properly), I guess. I don't have too much faith in these "negative" biopsy results anymore!
Do you think I've missed anything? This has taken over my life, which really stinks, as I haven't been able to work (I work from home) and I have 3 young kids. I'm slowly trying to ease back into working, but it's hard. I don't know how people with day jobs do it, though I know so many do!
Thanks for being here, everyone. You are all so amazing.
Jenny
Comments
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Jenny,
Your doctor should order a CT scan and bone scan as mine did - they were both fine. Not sure it's necessary for a PET at this stage. My CT can found a goitre on my thyroid too. We'll worry about that later. I did know there was something there and as I grew up in a country where the soil doesn't have much iodine, it is common.
Be glad that you found it, ILC is often not found until much bigger. I couldn't even feel mine and was lucky it showed up on a mammogram.
Chemo is your choice, if I had had the choice, I probably would have gone for it too. You have to do everything you can to stop it coming back. Because mine was HER2 positive I didn't have that choice and had no option but to go ahead with the chemo. I did ask my onc if he would have recommended chemo if I hadn't been HER2 and he said we would have discussed it.
I am not in your age bracket, but I'm sure there are other girls here who are. I am 57 which is the average age of diagnosis.
Sue
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Jenny, I have ILC stage 3 and am one year into treatment. If you have questions feel free to PM me. Since ILC represents such a small amount of diagnosed cases the thread here is not real active.
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Jenny...I'm sorry that you have to go down this journey but glad you found us....I am a good bit older than you, but I am 4 years out from Dx...stage 3 ILC....chemo, rads, AI's, ooph....you will get through this....come and visit and feel free to pm me if you want...I've had a little too much wine so not in a position to really write more now...but I do feel good!!!! Hugs,.
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Jenny, I am wondering about your neg bx in Feb - how was it done? By a radiologist with mammo guidance? Did the palpable lump show up on mammo & ultrasound? Did the surgeon have a wire localization done for the surgical bx? These factors can affect the success of the biopsies.
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Happy to meet you, Karen, Sue, Nowords, and MontanaHiline.
The lump did show up on mammo, but they had me return twice before they got a good shot of it. It also showed up on ultrasound--I think the picture was a little better/clearer on mammo.
The biopsy was an ultrasound guided biopsy done by a radiologist. He did put a tag in, and on the mammogram they did just afterward, it looked like the tag was right in the center of the lump. Very odd, in my opinion... And yes, the first sugery was done with wire localization.
Now I'm reading that node biopsies aren't as accurate with ILC. Something new to bite nails over?
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Did the mammo & US accurately judge the size of the tumor? It is very common for them to underestimate the size of ILC. It does seem odd about the needle bx, but I have read that ILC may grow more like a spider web than a solid mass like IDC - if it was a real small needle sample, I guess it could have just hit the wrong part of the web.
I have also read about SNB being very slightly less accurate for ILC - but it is still considered highly reliable. I think that removing more than 4 nodes would have been overkill.
My surgeon also told me my lump was "probably nothing" (in spite of the ultrasound looking bad). I really wanted to believe that & had a hard time when I was told my diagnosis.
You gave the size of your surgical specimen as one dimension. Mine was given with 3 - 2.5 X 1.5 X .9 cm. The ILC was .9cm - duh! no wonder the margins weren't clean.
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Your idea about why they missed it in the biopsy does make sense. My tumor was 1.4 centimeters. I'll have to check the measurements on the first chunk they took out. But the ultrasound and mammogram both measured it as less than 1 cm.
As for the nodes, since I had two prior breast surgeries I read in more than one place that SNB was counterindicated on people with previous surgeries, but my dr. insists that that warning is outdated and SNB is very accurate. Still, I'm glad they didn't take out more (the surgeon told me he took out 2 and the path report indicated 4...uhm, okay!), but I don't know how much I trust the testing that was done on them. The local hospital I went to has a horrible reputation. This week, I'm taking the slides to a different pathologist for a second opinion.
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Jenny,
Mine was 11mm x 6mm x 7mm but they call it by it's largest measurement. I had a wire inserted before surgery. too. I still freak out that the pathology wasn't right owing, to the fact that mine was pleomorphic lobular and HER2+ - very rare for ILC. So I wonder if the pathology can be trusted. I guess there's not much point in getting it rested now as I've already had the chemo part. Still have to do herceptin for the rest of they year. When I asked on this forum for any others with a simlilar diagnosis, only a few ladies replied.
Sue
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Jenny, you asked about young women/family history. I was diagnosed at 38, and yes, had a strong family history of cancer. Mom died of bc (while I was still in treatment). Dad died of pancreatic cancer, paternal grandfather died of bladder cancer, maternal aunt still alive with colon cancer. It's sort of the family hobby.
I had two little kids and worked from home during chemo/rads, plus took care of my dying mom.
My BRCA was negative, too, which was a surprise b/c of my dad being an Ashkenazi Jew with pancreatic cancer (which is almost always BRCA2 in that population). So perhaps he was BRCA+ but didn't pass it to me. The genetic counselor did tell me that I probably have some sort of BRCA mutation that hasn't been discovered yet, and that I should be retested as new info becomes available.
Don't worry about why you got the cancer, b/c that's impossible to answer. And yes, the whole thing takes over one's life for awhile. But things will settle down eventually--I promise!
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Hi, I was diagnosed with cancer in January 2008 because I felt a swollen lymph node. It took a while and a new hospital to find the ILC (1 cm). Had a lumpectomy with clean margins and they took out 11 more lymph nodes that were clean. I also had herceptin for a year. My chemo was TCH and then radiation. I have been on femara but recently switched to arimidex. I had a clean bone scan a few months ago and am doing much better on arimidex then I did on femara. Jenny, good luck with your treatment!
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HensonChi, I see you were triple positive too. How old were you at diagnosis?
Sue
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Jenny
I think it sounds like you are covering all of your bases... I think they often don't do pet scans when there is no lymph node activity--- you could push for it---
I had no family history of bc.... so it was a true shock when my pcp found a lump- and even more shocking when we found it was ILC..... one thing I remember someone saying was that ILC grows slowly -- but of course, that makes it harder to detect until it is larger....
For what it is worth, I did chemo (4 rounds of AC), radiation and I am on Lupron/Femara (I was pre-menopausal and could not take tamoxifen). My oncotype was higher than yours, but it was in the gray area and made the decision harder--- but I am glad I did it. I sleep soundly every night and almost never remember that I had bc other than my crazy curly hair! I worked pretty much all through chemo and radiation-- didn't do much else-- I have young children and they coped pretty well.....
My onc said something to me early on that was very reassuring--- she said "the chances that you are cured are very good just after removing the lump-all the rest is insurance"...and I agree with her.....
I have a bone density scan annually, a mammogram and an MRI..... I see the onc 2x per year and my gyn and pcp also do breast exams--so 4 times a year at least someone is actually checking the girls- and then there are 2 technical visits- so pretty much every other month I am being checked--- that, plus the surgery with clear margins, clear nodes, chemo and radiation and hormonal drugs really is enough for me..... and I never thought I would say that!
I wish you well-- try not to think ahead in the treatment--- take it one step at at time and it will be over more quickly than you imagine.
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Hi Jenny,
I too was diagnosed with ILC. I also have a thyroid goiter. After reading some of the post here, it sure seems that there is a connection between the two.
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Thanks so much for your responses everyone. It's good to know other people who have been through this. Friends are great, but they only understand up to a point...
Momand2kids, I just see all those ladies in the stage IV forum with 0 positive lymph nodes. That's just so scary. I'll ask about a bone density scan.
Paml, your post sparked a bunch of research for me on the internet, and it looks to me like there is a definite link between thyroid cancer and breast cancer. I'm going to try to get a new referral to a thyroid doctor. Did you have a biopsy on yours?
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Happy to meet all of you too!!!!
My ILC wasn't found by 3 mamograms and 3 sonograms. It was found only via MRI. ILC is very difficult to diagnose according to my surgeon. With respect to node involvement, I don't believe it is any more difficult. My surgical oncologist actually removed a 'pad' of nodes for my biopsy. 5 of 9 were positive but the margins of the pad were completely clear.
Jenny, I struggled too with finding women with an ILC diagnosis so maybe you have spawned a new group here. ILC represents only 7-10% of breast cancers so we're a select few!!!
I was diagnosed Jan 28/2010, had my mastectomy on Feb 10/2010 and started AC chemo on March 29th. It was my option to hold off another week on my chemo start because I wanted to spend a week with my girls. Lara (23), graduated from CMU last year and lives in New York and Marissa (19) is a sophomore at Cornell. My husband and I drove down to Hilton Head and the girls joined us for a week of fun and relaxation. It was a great way to prepared myself for the road ahead.
You'll find that you can ask anyone and everyone just about anything and you'll get an answer and support. It has been said, 'To know the road ahead, ask those coming back'. We are all coming back now and we are here for you.
Fondly, Heather
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Jenny; Make sure your doctor orders a bone scan and chest Xray, that's standard regardless of lymph node involvement. Heather
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Nash, I can't believe all that you've gone through. I'm so sorry about your mom.
Heather, I had a chest x-ray as part of my pre-op appointment, and it came back clear. I'll ask about the bone scan. My post surgery MRI was completely clear, so I hope it's accurate...
And even though you took a week off, it sounds like you got things done pretty quickly. I feel like I'm waiting forever. My last appointment was my post-op on March 29, and my next appointment is with the medical onc to plan for chemo on April 20. I hate waiting. I just want to do this and get it done.
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Jenny...I too am older,so sorry that you have to go through this,My ILC showed up first in my lymph nodes,then the culprit did show with an MRI,but before surgery,I did have a PET scan.I started chemo about 5 weeks after surgery.
Suepen..I to am HER+,which I know is rare for ILC,also pleomorphic.Aren"t we special!!!
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Jenny,
I understand your fears--one thing that I always find helpful is to remember that this is about YOUR diagnosis, YOUR treatment, YOUR data--- even when there are people with the exact same diagnosis the treatment might be different, the tests might be different---
Why people get cancer is still a mystery and for me, I decided early on to not try to answer that question--- the information is so contradictory-- and every day there is new research that contradicts the research from yesterday. I felt my time was better spent getting on with the treatment, dealing with my life, etc. But you are still in that place where these questions fly around in your head and it is very normal.
I see that you were dx on 3/18- and have an onc appt. on 4/20--that is a pretty good timeline-remember, the chemo can start within days of your meeting on the 20th..... for comparison, I was dx on 10/29/08, had lumpectomy on 11/25/08 and started chemo on 1/16/09--- waiting for the oncotype and the holidays really changed the timeline but the cancer was OUT-- and I knew I was having chemo to chase down any cells that possibly had escaped.
But we all understand about the waiting--it is torture.... but you will have a plan on the 20th and will likely be in treatment before the month is out and that is a pretty good timeline....
I did have a chest xray and an mri before the surgery- and a muga scan before chemo. for me, as few additional tests as possible..... I had the full monty, surgery, chemo, radiation, hormonal therapies---- I will do due diligence in terms of my appointments every year--- and I know my body well enough to know when something is not"right"... as I did just before dx. I am healthy, I eat well, exercise, sleep well... feel great--- and you will get there too.
I promise, this will NOT be your every thought at some point. I actually almost never think about breast cancer-- or I think about it in the abstract. I feel that I am cured of it.... and I just go forward. Yes, things can happen- but I don't want to waste time thinking about what those things are---- You will get here--- honestly. You just need to power through these next few days before your appointment then make your plan and get started. But most importantly, you have had the surgery and it is GONE!!!!
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Mom, I know you're right. I'm really looking forward to a year from now when I (hopefully) will be thinking about cancer in the abstract, too.
The thing is, I think I knew subconsciously that this was going on. I was so paranoid about lumps, went in twice in 9 months to get different lumps checked out. But on a conscious level, I really believed I was fine. I have never been deeply "in touch" with what's going on in my body.
But now I have this feeling, deep inside, that I still have cancer, even after the lumpectomy and reexcision. Because the surgery I had in 3/09 cut right through the area where the tumor was, I feel strongly that it spread my cancer through my breast on a cellular level that the MRI is unable to detect.
Hence my decision to do chemo despite the low oncotype. I want go at these insidious little cells with everything I can.
I'm currently putting some thought into a mastectomy. Overkill or not? I just don't know.
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Jenny----a positive ILC story---my mom had ILC, lumpectomy, radiation and tamoxifen and is now a survivor of over 23 years without a recurrence. Good luck to you and God's peace throughout this journey.
anne
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Thanks, Anne. It is so good to hear positive news! It seems like the vast majority of readily available information is so negative.
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Jenny
there are lots of good stories-- it is just that those millions of people are not here-- folks here are often just diagnosed or struggling with an issue or,like me, checking in occasionally to see if we can help. There are millions of people out there living after breast cancer--- happy lives. You will too.....it is just that right now it is all you can think about, talk about, dream about...
Only you can decide about a mastectomy--- there are many who have made that decision. I remember my surgeon telling me that "you don't need a mastectomy unless there is some reason you want one"..... I went for the lumpectomy thinking that if I needed to go further later I would. I have not regretted that decision. Others went in different directions... there are lots of people who can advise.
I personally feel I was overtreated with chemo, but I chose that overtreatment.... for me, a mastectomy really would have been over the top, but there are many others with my like stats who chose differently. This is about what YOU can live with, not others..... I have a friend who had dcis and chose a double mast..... that was her choice, but she had a strong family history and she knew that she would worry.....
Sleep on it, talk to the docs-- you have a small lump, early stage, medium grade----- you are in very good shape!!!
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amlg: Glad to know I'm not totally alone. I still doubt the diagnosis and wanted the pathology retested. So, when I hear of others with the same diagnosis, it makes me feel a bit better. My onc said there is no reason to restest it. He said most HER2 lobulars are pleomorphic.
JennyB: When I found out I had extensive LCIS, I thought I should have had a mastectomy too and even thought about getting the other one off. But I was reassured that LCIS is not cancer like DCIS. I think we'll just see how it pans out. I'm happy I just went for the lumpectomy. Having made it through 6 chemo treatments, I can say after the 4th it had been tolerable. It was the 1st and 6th that were the worst. You'll be fine.
Sue
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Jeny- another positve story-my mom was diagosed with ILC 17 years ago. She had a radical mastectomy and no chemo or radiation. At the age of 49, she woke up in the middle of the night with a pain in her breast. She got up and looked in the mirror and could see a faint red line across the bottom of her breast. She was diagnosed a few weeks later. She is alive today and is cancer free!
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Hi Jenny
You sound just like me when I was first diagnosed! I am just over one year past a dx much the same as yours although I was 52 at the time. I know what you mean about reading alot - I joke that I did a crash course on BC in two weeks when I was deciding on my course of action.
Make decisions that you can live with long term, follow your gut instinct if you trust it and DON'T waste your energy wondering why - you will probably never know why and you need your energy to get through the treatments and healing ahead. I remember asking myself questions like 'are your breasts more important than your life?' and thinking 'if I have been the one in 8 to develop BC and have been one of 8% to get ILC BC I was going to make d... sure I got good odds in the survival statistics!' - very black and white but you need to be honest and clear with yourself when you are making life saving decisions like this. I eventually decided, against my surgeon's advice, to have a mastectomy instead of lumpectomy and radiation - after all the reading I just knew that that was the right thing to do for me. As it happens post op pathology showed PILC (another small statistic - only about 1% of the ILC cases are pleomorphic) and LCIS that hadn't been noticed before and although they say LCIS is only a marker that invasive cancer may develop, I was glad I had opted for the mastectomy as I couldn't have lived with the worry of it possibly turning into something nasty. Actually I had a bilat mastectomy (right prophylactic) in the long run and have NEVER regretted it. Decided against chemo because on a 1% benefit and didn't need radiation because margins all well clear.
Re screening exams my surgeon ordered CT scan and chest x-ray before surgery and I had a bone scan a month after surgery and then a bone density scan a few weeks after that as I was going to be having Femara as hormone therapy. Felt quite violated by the tests in a strange way but relieved too when they all came through clear.
I am on 6 month visits to the surgeon now reconstruction is complete, only saw the onc once and so I go forward in the knowledge that I have done the best I can to get rid of this cancer. Fingers crosssed I don't have to travel this rocky road again!
Thinking of you
Rae
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Thanks, Rae. Our situations do sound very similar, and it's good to talk to someone who's a year out and through treatment. I've thought a lot about a mastectomy...I just don't know. ARGH! My doctors are very much leaving the major decisions up to me (since I'm so borderline in everything, I guess). I just wish the road ahead could be clearer. I'm a control freak, so this *entire* situation is very against my nature!
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Jenny
Yes, it is very hard feeling so out of control when it is your body but it IS good that your doctors are encouraging you to make the decision - they are probably thinking not only of your physical well being but also your emotional health. A lot of my fear went and I was quite calm once I had made my surgery decision, accepted that I was in good hands and put my trust in the doctors.
Re mastectomy decision - I just knew, from the moment the doctor did the biopsy, that if it was cancer the breast would have to go and then my reading lead me to the prophylactic mast as well and I never have and never will regret it. I did consider my reasons and options before finally telling the surgeon though and they were many and varied - didn't want rads, wanted as close to 100% that the treatment would get rid of the cancer (I'm not a gambler), wanted to make sure my treatment was completed as quickly as possible (rads would have stretched it out by another few months) so I could get back to life as soon as possible, didn't want multiple surgeries and ILC has about a 60% chance that you will need a redo as the surgeon won't get clear margins, felt I was stronger and healthier at this age for big surgery than 10 years down the track, knew I would want recon and that was going to be a big op so better to get it all done now and many emotional/ family reasons. Have you tried the Pro/Con list? It might help organise your thoughts? However if you are undecided maybe that means you should opt for the lumpectomy option at this stage if you feel more comfortable with that.
Thinking of you
Rae
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