Team ILC Warriors
Comments
-
ILC WARRIORS... I'd like to add a comment to this thread...please remember to check the breast tissue under your arms. 2 years after bilateral mx for extensive DCIS, ILC was found under my right axilla...there is breast tissue there!! i was told the lump was likely a lymph node reacting to my reconstruction/silicone/mesh, etc...so we watched it slowly grow for almost a year.
All 3 of my breast cancers were found by me, lumps that weren't my normal dense breasts. No medical imaging ever found my cancer. Don't neglect your self exams and remember the ARM PITS and even the margins of your mastectomy harbor small amounts of breast tissue also...HUGS!
0 -
Dr Rhodes' Ted Talks gives us hope for early diagnosis of ILC, so in the future we don't have to rely on a lucky call by a radiologist, like I did. I pray it is a common diagnistic tool by the time my 13 year old needs mammograms!
0 -
I arrange my circulating tumour tests privately and send them to the lab in Greece......they are not expensive compared to the prices you are used to but you do need a doctor who understands them to interpret them. The tests plus a telephone consultation with a doctor should come in at under 1000 dollars. Of course a face to face appointment is better but I don´t know if you have doctors allowed to use these in the USA, although they are being used in research.
Google Dr Nicola Hembry and RGCC or look up RGCC Greece - they speak english
0 -
Luckylegs64, I agree. I found mine way away from my right breast, nearly under my armpit, above the ends of my ribcage. If I weighed more I don't know if I'd found it at all. And I had to really dig around in there to find that 2 c. lump. Even then it didn't fit the typical description of b.c.
Thanks for reminding me to do a self exam...right now!!!
Claire
0 -
The registration for this is starting today. https://upci.upmc.edu/wcrc/ilcSymposium/agenda.cfm
This is the registration page. Patients/advocates $50 for the entire event. No link to the registration form yet. https://upci.upmc.edu/wcrc/ilcSymposium/registrati...
I contacted Lindsay Surmacz about the lack of link for registration and she is getting back to me.
0 -
THANKS so much for the wonderful information. I really appreciate it.
0 -
Thanks gardengypsy - I agree, excellent Ted Talk.
it's amazing how many women don't even know if they have dense breasts and the potential for missed diagnoses. And infuriating that technology that can help diagnose them is not being used.
0 -
My ILC is HER2-positive as well. I was diagnosed last December and started to receive neoadjuvant targeted therapy in January. I had a PET scan in December and last week of January. The tumor shrank from 2.5 to 1.7 cm. It had been holding steady since then. I started standard chemotherapy (TCHP) in May and will last until September. I think I am scheduled for surgery in October. I have already made the decision to undergo bilateral mastectomy without reconstruction. I will be receiving Herceptin for a year after my surgery. I am 43 years old and had total hysterectomy a year ago. This made me go into surgical menopause. I have a history of severe endometriosis and my Mom died from ovarian cancer.
0 -
Dear Salve: Good luck and hugs.
0 -
I've been having severe muscle spasms on side where I had cancer. Starts in upper back-rib area and stretches around to front rib cage. Does anyone else have this and any ideas why this is going on? Thank you
0 -
Wishing you all the best, Salve!
Sweetie, I am sorry you are having such painful symptoms. The obvious suggestion is to see your PCP and Onc as soon as possible. You might also see your radiation onc about this. I am two years out from external rads and have sore ribs on the radiated side and muscles I have to constantly work to keep stretched. Any heavy lifting (that never used to bother me) causes pain and discomfort for days. Radiation can cause muscle fibrosis. Picture what happens to meat when it is cooked. It curls up and becomes tough. It no longer stretches easily.
With luck, your problem stems from the common causes of overuse, dehydration or electrolyte imbalance. Hydration, etc. along with gentle stretching provides relief. In the case of radiated muscles, stretching can be difficult and aided by massage therapy by someone familiar with patients that have had radiation. Your docs should be the ones to help you determine the source of the problem.
I hope you find quick relief! Please let us know what you find out and how you are doing.
Sue
0 -
This is a vent about medical profession. I recently had R mastectomy for second primary tumour, 4 years after 1st IDC. It was in opposite breast this time so had uni MX. The post surgery pathology showed ILC with pleomorphic features weakly Er+ and Pr neg. I have been advised that I don't require chemo and that's fine, I don't want it.
The thing that annoys me is that every time I mention that I have Googled 'pleomorphic ILC' and it is often described as aggressive - my BS, MO and GP dismiss my concerns : that I shouldn't Google, that pleomorphic is just the shape of the cells, that it is just anecdotal evidence..... All I would like them to do is Google and see what I have seen. Some info is from BCO site which they would dismiss as 'anecdotal', but other links that come up are from peer reviewed journals.
i have convinced myself that I will get mets in about 3 years and will probably be dead in about 6 years. Having chemo would have only reduced the liklihood of this not eliminated the possibility. As I am concerned about dementia I think maybe stage 4 BC is preferable to dementia. I am not obsessed about this and it doesn't haunt me and I have recovered well from surgery and no side effects from AIs. I am 65, formerly a nurse, with no children or partner. I am not depressed, just want some health professionals to acknowledge that what I am telling them and only dismiss it when they have seen what I am referring to. Thye clearly think I am nuts as I have seen in a letter from my Mo to GP. I am in Australia.
0 -
gerrib, I was also diagnosed with PILC last year (second breast cancer) and have been concerned about it and also received patronising comments from my BS about not googling it. It is as though doctors don't realise that articles in well-respected medical journals are now often available to the public online, or that we couldn't possibly understand any of it. I have no medical training, but I know how to read, and abstracts are sometimes written in a way that a layperson can understand. This abstract is relatively reassuring about PILC.
John Smith posted this abstract on this page a few weeks ago from the 2016 ASCO conference - lobular related abstracts: https://community.breastcancer.org/forum/71/topics…
1. TITLE: Pleomorphic invasive Lobular breast carcinoma: Prognosis and characteristics compared with classical invasive lobular breast carcinoma.
Sub-category: Epidemiology
Category: Cancer Prevention, Hereditary Genetics, and Epidemiology
Meeting: 2016 ASCO Annual Meeting
Abstract No: e13094
Citation: J Clin Oncol 34, 2016 (suppl; abstr e13094)Author(s): Christine H. Choi, Ying Liu, Kevin Kalinsky, Eileen Connolly;
Columbia University, New York, NY; Columbia University Medical Center, New York, NYABSTRACT:
Background: Pleomorphic lobular carcinoma (PLC) is a rare type of invasive lobular breast carcinoma that has traditionally been thought to have a worse prognosis as compared to classical lobular carcinoma (cILC), but prior studies are small with conflicting results. We seek to examine differences in clinical characteristics and progression-free and overall survival between PLC and cILC to guide treatment decisions.
Methods: From retrospective review of all women with invasive breast carcinoma seeking care at a single institution from 1998-2012, 146 women with PLC and 262 women with cILC were identified. Analysis was performed to examine differences in clinicopathologic variables and progression-free and overall survival between the two groups.
Results: On average, the PLC group had a significantly higher pathological stage, prevalence of lymphovascular invasion, proportion of node positive disease and proportion of mastectomy as compared to lumpectomy. There were no differences in age at diagnosis, tumor size, or mean number of positive nodes. Differences in race, subtype, grade, chemotherapy, hormonal therapy and radiation therapy were difficult to assess between the two groups as the cILC group had a higher proportion of missing data in those categories. On survival analysis, median follow-up was 60 months. In the PLC group there were 30 recurrences (21%), and in the cILC group there were 40 recurrences (15%), (chi-square p-value 0.175), as defined by STEEP criteria with the exception of death. In the PLC group, there were 27 deaths from all causes (18%), and in the cILC group there were 56 deaths from all causes (21%), (chi-square p-value 0.477). Results of multivariate cox proportional hazards models are ongoing.
Conclusions: In this largest cohort of women in the literature with PLC as compared to cILC, although the PLC group had some high risk clinicopathologic characteristics, there were no differences in rates of recurrences or death.
SOURCE: http://abstract.asco.org/176/AbstView_176_165663.h...0 -
Thank you so much for posting this abstract Optimist52. It is reassuring. Thank heavens for BCO. In my opinion it is the best source of up-to-date info on BC. I have received much better info here than from medicos.
0 -
Dear Gerri and Optimist: I have also been diagnosed with pleomorphic invasive lobular carcinoma as well as bifocal pleomorphic lobular carcinoma in situ. I was also diagnosed with a secondary primary of invasive tubular carcinoma. The ITC is not a concern to me at all. I am worried about the PILC because the pleomorphic nature makes the bc more aggressive. However, I trust my doctors and I feel lucky to have them. I am also "addicted" to this website which gives me good information and helps to allay my fears. Good luck to both of you.
Dear Sweetie: I also have some pain in my ribs on my bc side. My MO told me that I may have arthritis in my ribs as a side effect of radiation. Sueinfl gave great information. Good luck and feel better soon.
0 -
my question is for all of you very bright and incredibly kind women. I just had my six month oncology visit and am scheduled to go in next week for a sonogram and fine needle biopsy of two nodes that popped up recently on the same breat that had cancer. Neoadjvant chemo shrank the original extra capsular node down to a micro metastasis and that node was removed with mastectomy. Had diep flap recon with Dr. Christina Ahn (whom I have so many wonderful things to say about, btw!). The swollen nodes are on the outside edge f the flap. Hoping for a only a regional recurrence--sure more scans are in my future. Did any of you have recurrence while on letrozole
0 -
Dear Mixed Feelings: I do not have an answer to your question since I have not had a recurrence and I am taking Anastrazole (Arimidex). I did not know that nodes could be biopsied. Good luck. I am hoping for a benign finding. Hugs.
0 -
I am so sorry for your new worry, Mixed. I recurred in what sounds like the same area two years after my recon, but I had declined rads and AIs after my initial treatment. I hope this gives you some hope. Please let us know. Sending you healing vibes!
Sue
0 -
My name is Heather Hillier, 6+ year ILC survivor and I am the Advocate Co-Chair for the 1st International ILC Symposium.
Like so many ILC survivors, my diagnosis came late and I was Stage 3A at diagnosis. I am so excited to be participating in the 1st International ILC Symposium as Patient Advocate Co-Chair. We have amazing researchers in Pittsburgh who are committed to answering your questions and concerns you have raised in this discussion board.
The goal of this gathering of 32 of the world's leading ILC researchers is to gain a better understanding and improving care for thousands of women with ILC is of high significance. We hope to gain a greater appreciation for the characteristics of patients, unique tumors, and treatment response for ILC and an expanded knowledge of options for patients with ILC, such as patient selection for neoadjuvant versus adjuvant, breast conserving surgery, etc.
This symposium will form the foundation for a vibrant, collaborative community of scientists that will lead research in ILC, ultimately resulting in improved outcomes for patients with this disease.
We are also focusing on ILC Advocates with a special breakout session for advocates only on Thursday afternoon to discuss many of the topics you have addressed here. We will also have an open Q&A that evening with Researchers, Clinicians and Advocates. On Friday morning we will present our findings from the Advocates to all attendees.
Additionally, I am compiling a booklet of ILC survivors and their respective stories to provide to each of the clinicians and researchers. So many of our stories are the same yet are experiences, side effects and treatments are different. We hope that this will help personalize this disease for those in attendance. Over the next few days, I will post a brief Q&A for anyone and everyone with ILC to complete. I am also hoping to secure a photo of each participant with their respective story.
Finally, we will be offering 6 - $500 scholarships to advocates who will be traveling to the symposium. Details to come. This is a 1st time opportunity to have our voices heard by the best ILC researchers in the world.
Below is the registration page for all interested.
https://ccehs.upmc.com/registrantCategories.jsf
Please don't hesitate to reach out to me with any and all questions. Thank you, in advance for your time and I hope to hear from you soon.
Sincerely, Heather Hillier
0 -
Heather, I forgot to mention (on the other thread) that we have a similar thread going on the Inspire website. Please feel to post here. https://www.inspire.com/groups/advanced-breast-can...
Thank you!
0 -
Aloha Heather, Looking forward to the questionnaire and news of the symposium.
0 -
hawaiimom thx for your interest. Should be up next week. Have a great weekend. Heather
0 -
Heather, Very encouraging to hear all these plans. Is there an official definition of advocate?
Thanks for your efforts.
0 -
WndrWoman, That's a great question. I've included the link below for our local advocacy group in Pittsburgh which is spearheaded by three brilliant women, Karen DeVito, survivor, Carola Neumann, MD and Prescilla McAuliffe, MD, PhD
http://upci.upmc.edu/wcrc/patientAdvocacy.cfm
Have a great day, Heather
0 -
Thanks. I am unable to attend but will gladly share my story.
0 -
This is in response to Lily55 and sueinfl discussion about ILC being hard to detect by imaging and other tests. Actually, there is a simple urine test that detects BC with 91% accuracy. The patent has already been filed in Germany: https://www.sciencedaily.com/releases/2015/06/150611091935.htm
I doubt we'll see it any time soon on our side of the Atlantic.
0 -
Dear Lisa: THANKS!! Wonderful article.0 -
Hello all,
I had a lumpectomy (left) on 7/12/16 for ILC tumor (1.8cm.) They also removed two sentinal nodes. Happily, my nodes and margins all turned out clear. But here's the issue: Has anyone else had burning (nerve) pain on the underside of their arm from the node surgery? At almost 2 weeks post-surgery, I can't stand anything -- even a sleeve-- touching the skin up to my elbow. Feels almost like a rug burn, but with no marks, and it's constant. Is there anything I can do to ease the pain?
Thanks for your input.
0 -
napsalot - yes, I think that is normal. I have had 2 separate mastectomies with nodes taken each time and the underarm sensitivity showed up in week two post-op both times. It was just as you said - like a rug burn or as if I had shaved too close.The sensitivity diminished by week three and was much better by week 4. I'm now about 2 months out from my last surgery and the pain and sensitivity has been gone for quite a while. I found that putting a baby diaper (like Pampers) between my arm pit and clothing helped prevent my clothes from rubbing on sensitive areas.
0 -
naps:
That reminds me of the precautions about shaving after surgery. There is a thread on the topic
0
