Team ILC Warriors
Comments
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Hi Lilly55,
I'm new here any trying learn what treatment plans were proposed or followed for ILC women. I noticed you don't list chemo in your treatment plan. Did you make the choice to skip it and if so what factors helped you make this decision?
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Hi Kat
sorry you have to be here. I also had a lumpectomy and SNB but last January, then rads. I have swelling daily, nerve pain and lymphedema. And my BS and RO said I didn't have it. Recently saw a PS and he said immediately I did have it. Some days my hand is so swollen my fingers are like sausages. I also had the underarm area drained twice now. Only 2 nodes taken, I don't believe what they say and it seems our docs don't want to tell us. In saying that for you at only 5 weeks give it some time but I agree I would look into PT now. My pain isn't severe but it lets me know daily its there.
all the best to you as you move into your radiation TX.
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Hi Hope4PILC- Welcome to the boards. Your in the right place to get lots of your questions answered.
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Kat, PT can help with all the issues, whether or not there is any lymphedema. It is very unlikely that you would end up with lymphedema issues, but it does pay to get PT as soon as possible. Also, surgeons tend to downplay swelling issues.
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smrlvr,
Hate to admit my lack of computer skills BUT its true.
Go to the home page of BCO, in the search box type in Bisphosphonates, Jan.28, 2014.
The article is very interesting, and it is only helpful if you are post menopausal. It gives us another 3% survival with this treatment. Time will tell but the oncology nurse I saw yesterday was very interested. She seemed to think it was worthy of discussion. My MO on the other hand, I printed it off and hopefully it will get to her.
It's called....Research Pinpoints which women benefit from Bisphosphonates
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hi Hope4 - in a nutshell they wanted to do chemo given my stage but I refused as 100% progesterone and oestrogen positive, and have numerous bad reactions and allergies to many of the drugs used with chemo, anti sickness, anti histamines, steroids, and only have one kidney that was not 100% (interestingly since i changed my diet my kidney function has improved to almost normal). I took several weeks to make the decision and dont regret it, it was right for me
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Hi All,
New to this forum. great to see the activity in community and help to each other,
I have been diagnosed with ILC and DCIS (both). the lump is 2cm based on ultrasound and biopsy.
I have been reading about ILC and am wondering why my doctor didnt order MRI. i requested for MRI, but he said it is not needed in my case. RIght now i am considering lumpectomy. But after reading about ILC i am concerned that i should get MRI done to see if mammo and ultrasound missed anything since i have very dense breasts. Fellow ILC warriors, can you please share your diagnosis experience before surgery? Thanks
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SoCalMom, I am so sorry you have joined us in this diagnosis, but glad you found us. Did your doctor explain why your case does not warrant an MRI? I did not have one because I chose to have a bilateral mastectomy. I also had very dense breasts and the mammograms didn't pick up my cancer. Based on my ultrasound, my tumor was 2 cm, but once they got in there, they found it was really 3.5 cm. there was no other cancer in the left breast, and the right breast was all normal tissue. I don't know much about he accuracy of MRIs, but if it can give you an idea of how big the tumor is, it could help you decide about surgery.
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SoCalMom71 - I urge you to insist on an MRI. I fought my insurance company for 6 months to have one "just because". No lumps felt, no family history, nothing suspicious on my annual mammogram. However, my mammograms were basically useless due to extremely dense breast tissue. I just felt like I wanted a baseline MRI and my gut told me to have it done even if I had to pay out of pocket. Fortunately, a breast surgeon who had done an excisional biopsy on me the year before finally got it approved. I ended up having 5 biopsies as a result: 1 ILC, 1 DCIS, and 3 benign fibroadenomas. Of those 5 areas, 0 showed on mammogram (even in retrospect after the MRI), only 3 showed on ultrasound, and the 5 showed on MRI. However, I had additional areas of ADH and early lobular "sprinkled throughout the breast tissue" found by the pathologist at time of MX, all on the same side.
I can only speak for myself, but my BC would have taken a totally different course if I hadn't insisted on the MRI. My BS says the ILC would likely have taken another 4-5 years before being felt or seen on a mammogram due to my dense tissue and the way ILC grows (weblike). Because I'd had atypical cells biopsied from the other breast previously I felt comfortable choosing bilateral over unilateral surgery once I was diagnosed.
I wish you all the best. Listen to that little voice inside and ask for an MRI. Just my two cents' worth...
lemon68 - Some women, like me apparently, have such dense breast tissue that even MRI can miss some things. The additional areas found were very early and small, no size even mentioned on pathology so might have been smaller than MRI can detect. Yes, the pathologist will examine all the breast tissue removed whether from lumpectomy or mastectomy and report on everything that is found.
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Tina, I had a similar experience.
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SoCalMom- I am sorry you are here. Decisions are all hard to make. I was told after my biopsy I did NOT have cancer. I did have LCIS, I insisted the area be removed and that is why I found out I did have ILC with some DCIS around my ILC. I didn't get to choose a MX at that point because as I said they told me no cancer, untrue. Before I would start my Radiation I insisted on a MRI, my thinking was why do rads on my 'bad' boob and not do the good one if there is something there also? I got my MRI and it showed nothing anywhere, my mammos have shown nothing other than the micro calcifications which led to the biopsy. I am sure glad they did show that. I like so many others at a younger age have too dense of breasts to see anything or everything. Get your MRI for you, you need peace of mind, don't let them brush you off. I just had my mammo a couple months ago, was so wanting to hear they saw nothing, I was only told we cant see anything due to the density. UGH. I had a total hysterectomy so taking out my ovaries will help with the density as I move along. In the meantime I have decided to have the BMX with immediate reconstruction. I don't want to do this anymore, I don't want to worry anymore and I want to be here for my kids and someday my grandchildren. For me my risk is too high. I feel like I have let cancer make the decisions, now I am in charge.
Thank you Tina, Sounds like you made the right decision in your MX. I will be so interested to find out if they find anything else in there. It truly seems life saving to me, least that is what my gut is saying and I am listening.
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wow lemon thats a huge decision to make but you seem at peace with it, do you know when yet? X
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SoCalMom,
I did not know to ask for a MRI, I found this website when I was almost done with chemo. I really liked and trusted my surgeon, he ordered a Pet Scan after my lumpectomy because I had so much cancer in the axillary. Also fused nodes with extranodal extension.
I have asked for a MRI for my healthy breast when it is time for my mammogram. I have gotten a NO from oncologist & radiologist. I figured the breast with cancer should be ok as it has been radiated.
I felt like the mammogram had failed me, since I had so many nodes with cancer. My radiologist says no, it found the tumor, it was only 1.1 cm. I will never know how long it was there, and how such a small primary tumor could spread so much.
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Sounds like me, my tumor is only1 cm, but they already know of at least 2 lymph nodes involved. I have never had anything show up on a mam. I have already decided on a BMX. Who knows what they'll find when they get in there, all I know is I want it out.
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I am in my 50s and my mammos continued to be useless. Even on the MRI the radiologist commented on the dense tissue. I think very often primary docs in particular just read the bottom line of that mammo report and see "negative". However, if you have dense breasts and you request a copy of the mammo report you will likely see what mine always said: "No masses seen, but lesions could be obscured by dense breast tissue". Which basically means they can't see much. Mammography has improved greatly with digital imaging and now tomographic mammography (so they can look slice by slice), but you have to be sure you are at a state-of-the-art facility. I still would push for an MRI before making surgical and other treatment decisions.
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Thanks all for the input.
Right now, my surgeon has scheduled a lumpectomy in a week. I just now came across this new information that ILC is difficult to diagnose and common to be bilateral. I am planning to get hold of the surgeon tomorrow morning to find out why my right breast is not tested with US or MRI. My surgeon has 30+ yrs of experience, but i not sure if he wants to do this lumpectomy as a exploratory surgery to see the extent and then decide if i need MX.
However, i think the decision of the first surgery itself can change if we find more info with MRI. this is so stressfull.
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its not common to be bikateral just more common than IDC to be bilateral
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My BS said it can be multifocal, but not necessarily bilateral. In fact, I think I remember her saying that's it more typical to be unilateral, like mine was. Ugh...
SoCalMom71 - I'm so sorry if any of my posts have caused you extra distress. I'm not an expert, I'm just telling my story. It is stressful and scary, especially in the beginning. It usually gets much easier after a plan is in place. I decided right after diagnosis that this journey would have lots of ups and downs. I try to take it one day, one step, one decision at a time and I know if I'm in one of those low spots to just keep plowing ahead. Easier said than done, I know
Please take good care of yourself and keep us posted!
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I agree, MRI should be mandatory for suspected ILC. I only had MRIs on my good breast after MX and then decided to have a prophylactic MX on the good one. There is a higher chance of bi lateral ILC than IDC.
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@tinaT, thanks for the reply and no, its the whole process in initial stage, if i am doing the right thing, is causing me stress and not your comments. I appreciate all information i can get. I am planning to discuss my concerns in detail with the surgeon tomorrow. I also have preop and meting with breast coordinator tomorrow when i am planning to bring up these questions.
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Lily- I have seen the PS to make sure I qualify and this Friday I see the breast surgeon to discuss further. I have been calm until I come to the boards!! LOL.. then I start freaking out. I read such good but then I see a lot of bad too. The number who have a mx and still have to go through this again blows my mind. I want to be happy with my choices. The hysterectomy I thought was a good thing, sure is tough to go though. I am not sure it was the right move but it seemed to be at the time.I feel like BC has already taken enough from me. When I know my dates I will share, I will even probably post in the pics forum to give back to those that have inspired me by posting.
none of us should have to be here but I am so glad we have this place to come to.
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I had dense breasts, yearly mammos. My last mammo showed the cancer. Had many ultrasound biopsies and some MRI biopsies, too, after dx. Then LX which did not have clear margins. I said to heck with this. Take both boobs so I don't have to worry about them any more. My BS said she supported my decision. Had expanders for fifteen months through treatment, DIEP reconstruction last July and I got new nipples two weeks ago! The beginning of this fandango is the worst when there is so much unknown, differing opinions, etc. On all the views from ultrasound and MRI, my nodes looked great. BS even said they looked good after LX and MX yet three nodes were found to have big cancer in them, all contained in nodes. Pathology rules over any imagery, not to say imagery isn't helpful, it is. I hope reading my story encourages somebody that time passes and you, too, will be "moving on" (as much as any cancer patient can move on), too.
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Of course, you can move on without reconstruction, too! Whatever floats your boat!
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Momine, an MRI is a good alternative to CAT scans - no radiation. In the past I asked for it, instead of CAT scans and insurence always approved it. Don't know if this will continue now, my first year on Medicare.
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SoCalMom, I am sorry to hear of your diagnosis. We all have different histories but we ILC gals have one think on common, most of us we diagnosed late and often times the tumor was larger that expected.
My cancer didn't show on either mammography or sonogram, so you should really insist on MRI for your ' healthy' breast. Both the MRI and PET/ CAT scan prior to my surgery had shown the tumor to be 2, and 2.5 when the final biopsy post mastectomy showed it to be over 4 cm.
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antonia,
MRI was going to take 2-3 weeks for the insurance to get approved and get appointment, so i went ahead and got it done outside on my own today.
BTW, did u get MX done that they found the 4cm tumor? I am scheduled for lumpectomy this friday. not sure how the surgeon would find out while doing lumpectomy that the tumor is actually bigger than it appears.
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SoCalMom, yes, I got double mastectomy and then the size of the tumor was finally fixed, after surgery. I went for DMX because both mammogram and sonogram failed to find cancer 10 months earlier and it was discovered only after my breast changed shape. I didn't want to take the chance that later on the cancer could be missed again. It was my personal choice. Actually my surgeon suggested lumpectomy, but given my history I chose more radical route.
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SoCalMom71 - Wow, already done? Since my initial MRI was a "screening" scan and I hadn't been diagnosed yet I didn't feel a time crunch. Still, I had decided that if I didn't get approval within six months I would pay out of pocket. Fortunately, the fourth doctor that ordered it (after 2 internists and my GYN) finally got approval.
Sending good thoughts your way. I hope the results are good and will give you peace of mind and a better foundation for decision-making.
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just know - U/s can be accurate - it predicted 20mm tumour and intramammary node - my BS 'predicted 5cm+ ' on feeling my lump - the path came out 20mm and 2 satellites. And no Intramammary
So whilst i may be in the minority - it isnt always bigger then first thought - just have a healthy cynicism to all guesstimates until you grt the path
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Hi. Sending positive vibes to the new women here. Welcome. Sure this wasn't totally in your plans, but you've found a warm, comforting group of women.
I had to have a brain MRI. I had been having tinitus (pulsatile, heard my heartbeat loudly in one ear,) and with a hx of bc, I guess they want to check out everything. Had a carotid doppler (clear) and then the brain MRI. I must say that I was nervous before this not knowing what they'd find, but thank God, all was clear. I think it's important to share all the good news we get here, too. So sharing! Probably an SE of femara, but it has subsided, so no more worries on that front. And if it recurs, at least I'll know it's not anything serious.
Here's an article I saw today. Really doesn't say too much, wish it had gone into more detail, but at least good news that ILC is sparking some interest.
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