We are 226,650 members in 82 forums discussing 158,896 topics.

Help with Abbreviations

Topic: Recurrence

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 28, 2019 01:05PM

Beaglelove wrote:

I am currently having radiation and I have such overwhelming fear of a recurrence and that it won't be found. It is actually paralyzing at this point.  I'm sure I'm not alone and I have had the mammoprint done which showed low risk but how do you deal with the fear and all the horrible statistics I've read they say ER/PR positive returns even 20 years later.

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

Page 1 of 1 (24 results)

Posts 1 - 24 (24 total)

Log in to post a reply

May 28, 2019 01:33PM wallycat wrote:

I'm so sorry you are stressed. Time helps but I doubt the fear ever goes away. I'm starting year 13 and I still get the occasional freak-out moment. Nothing like it was when I was first diagnosed (fetal position and lots of weeping).

There's lots of psycho-babble out there on how to deal with it. A lot depends on your personality as to what would be of more help. Some ladies opt for anti-anxiety meds; some do group therapy, etc.

I guess my view is (most of the time) that anyone can develop cancer. The fact that we are at slightly higher odds doesn't mean we will get it. Just like joe-blow down the street, who never had cancer, can develop it. I keep hoping the further out I am that more treatments will be available. The therapies and options are getting more available and more affordable and that is what I cling to. That and hoping I'm one of the lucky ones. There's a beautiful thread here somewhere on "inspiring stories" that really helped me when I first got here. Worth a read.

Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
Log in to post a reply

May 28, 2019 02:05PM Beaglelove wrote:

  I keep reading such depressing statistics so nice to have a positive story of a real person! 13 years is so encouraging to read about.  I'm trying the talking with a psychologist because my MO really thought it would help but it doesn't at all.  It's just talking in circles.  I want information and she just has me do mindfulness and ask my MO who says ask RO....and on and on.

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

May 28, 2019 02:32PM trinigirl50 wrote:

Stay off the internet. Don't read about statistics. It takes about 2 years before you stop being terrified. Then it comes and goes, but eventually there will be more days when you don't think about it. You just need time, and make a concerted effort not to dwell (that's hard at first but practice practice).

Two things really help me: Most women do not get reoccurrence, so statistically and personally, the odds are in your favour. Also, at the very bottom line. We all die. Thats helps me anyway.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
Log in to post a reply

May 28, 2019 02:52PM wallycat wrote:

When I lived in WI, I had a gyn who got BC when she was in her 30s, 2 very, very small kids. SHe's 67 or 68 and travels to poor countries to offer free gyn services;does free clinics, etc... her life is full and giving. She hoped she would live long enough to see her kids graduate high school, one is now a lawyer and the other in film. She's a grandmother and still going.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
Log in to post a reply

May 28, 2019 03:10PM Beaglelove wrote:

trinigril50-I know you are right and I promise myself to stay off but get so scared that I look for positive information...sadly very little out there.  I am going to try to heed your advice.

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

May 28, 2019 03:18PM Beaglelove wrote:

wallycat- That does give such hope.  How stressful that must have been with 2 small kids! What a wonderful way to give back.  My 5 year old granddaughter told me recently that mommy had told her that I was sick and that we should keep me in their prayers.  My granddaughter spent the night recently and was telling me about praying and being very scared.  That just broke my heart as I never really knew my grandparents since they were quite elderly when I was born and I have always wanted to be an involved and present grandma for my grandchildren. I think it is important for them to have that connection to their family history and roots.

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

May 28, 2019 04:44PM nash wrote:

I understand the fear. My advice to you is to let it go, b/c if and when something happens, then there is plenty of worry to be had.

I was originally diagnosed at age 38 in 2007. My mom died of bc as I was finishing chemo/radiation, and my dad had died of pancreatic cancer, so I didn't have high hopes for myself.

It took me about two years to stop panicking. I had a stretch of about six years where I just blithely went about my business. It was heavenly.

My local recurrence was picked up on MRI, b/c I advocated for myself and didn't let my onc stop my annual breast MRIs, despite her best efforts.

My new primary, three years later, was picked up b/c my tumor markers were rising. Tests didn't turn up anything initially, but eventually they did.

My brain mets were found b/c I was unsteady on chemo for the new primary, and my new onc (she's my fourth onc, BTW) was aggressive in investigating the symptoms.

So, to summarize, if there is something wrong, it will come to light sooner than later. Be your own advocate as necessary. In the meantime, just try to live your life as happily and worry free as possible, b/c when something does go wrong, it will eventually present itself. Then you can worry. Also, don't get caught up in the nonsense about how adjusting your lifestyle will somehow save you from all of this crap. It won't.



Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
Log in to post a reply

May 28, 2019 06:48PM Beaglelove wrote:

Nash- I appreciate your wise advice. You have been through quite a battle and will keep you in my prayers

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

May 28, 2019 07:54PM - edited May 28, 2019 07:55PM by nash

You're welcome :) I wish you the best. And thank you for the prayers.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Radiation Therapy External: Brain Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy Ibrance (palbociclib)
Log in to post a reply

May 30, 2019 11:46PM karen1956 wrote:

Beaglelove - I'm 13 years out since diagnosis and still NED. As time goes on, the fear is not the first thing you think about when you wake up. Yes, recurrence is in the back of my mind - but every day that I'm NED is one more day that I'm cancer free. I now how other health issues (not related to breast cancer or treatment) that are being monitored. There are more and more long term survivors out there - in the Stage 3 thread there is a 5 year, 10 year and 15 year survivor thread.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

May 31, 2019 01:04PM Beaglelove wrote:

karen1956- Thank You for that encouraging response I hope your other health issue will be cured as well

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

May 31, 2019 09:04PM karen1956 wrote:

Beaglelove - no cure but hope for no progression - and that would be just fine with me - if I stay status quo, I plan to live many more years with no treatment! Thanks

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

May 31, 2019 10:12PM Beaglelove wrote:

Karen1956 -I will keep you in my thoughts and prayers

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

Jun 4, 2019 12:51AM karen1956 wrote:

Beaglelove - my labs came back stable - I have an ultrasound on Wednesday and hoping it shows nothing - if so - then its just following me yearly!! Thanks for your thoughts and prayers

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

Jun 4, 2019 06:00AM Beaglelove wrote:

Karen1956-That’s is very encouraging about your labs and praying for great results on ultrasound. I look forward to hearing the good nee

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

Jun 4, 2019 09:03PM momand2kids wrote:

Hi there-

I agree with others--stay off the internet-- it is still a little early for things to fade-but they will. My odds of getting bc again are aroub 7%-that is about the same as the average person on the street-- cannot do much better than that. I do think making sure you are your own best advocate, and keep up with all of your medical appointments-- over time these get tiresome (although I never get tired of negative results!!).

I consider myself cured of bc-- I know everyone does not agree with that-- but I feel that it was taken out, I was treated and I am healthy. If that changes at some point, I will likely figure it out before my onc... 5 yrs after bc I had a nagging cough, did all the follow up, turned out to be low level thyroid cancer. Just last month I found a strange spot on my arm- and because I am at derm every 6 months- we were able to find a very early melanoma. My point is, know yourself and your body. And most importantly, always, always follow up... there are so many things that can literally be eradicated or cured or controlled with early detection. I feel so fortunate, every single thing I have had has been early and has been found because I paid attention or I was regular with my check ups (my pcp found my breast lump).

I once read something here that said something like "don't worry in advance". Yes, it can come back and yes sometimes it comes back years later. But, it is not common--- there is no reason to assume that you won't just go on with your life. I think the counseling is a good idea (I did that and sometimes still do). It may not feel like it is working, but give it time.... as you get further out from your dx it will feel less overwhelming


take care


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
Log in to post a reply

Jun 4, 2019 10:27PM jessie123 wrote:

Beaglelove --- I have a friend who had lobular when she was 45 yrs old. She is now 72 - no reoccurrence. I think that I was more worried about breast cancer before I got it. Now I know that I will be monitored closely for the rest of my life and if it comes back it will be caught early. Since mammograms don't usually see lobular we are lucky ours was diagnosed and treated before it got too large. The worst part of this whole ordeal for me has been my own anxiety. The treatment wasn't nearly as difficult or bad as I anticipated.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
Log in to post a reply

Jun 5, 2019 01:58PM Beaglelove wrote:

karen1956- I am so happy for you. Prayer truly works!

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

Jun 5, 2019 01:59PM Beaglelove wrote:

momand2kids- Thank you for your encouragement and advice. I know that you are right and I will keep those appointments! I

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

Jun 5, 2019 02:05PM Beaglelove wrote:

jessie123- That is so encouraging to hear.  I feel like the close monitoring is like insurance and will stay on top of it. I know I am an anxious person anyway and something I have to really fight but I do hope to have those times when I don't think about it.  I am 1/2 way through radiation and then have A1's to start.  The fear comes from getting a colonoscopy(I'm past due) getting a dermatology appointment(I'm past due). Getting a dexa scan(suddenly started having back pain) because of starting A1...so fearful that something will show it's ugly head even though I'm really quite healthy and other than having 3 babies I've never had any hospital visits and I had them all 3 naturally. This is just overwhelming but I'm hoping and praying all those test come back great and then I can start to move on.I love being a grandma and want to stay around for all of it!

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative
Log in to post a reply

Jun 5, 2019 02:29PM momand2kids wrote:

Hi

I was supposed to have my first colonoscopy in the same year I finished active treatment--I decided to delay it for about a year-- just helped me mentally--- it was a good decision for me--there is only so much a mind can take--- while it is important to stay up with your appointments, think about organizing them in a way that works for you. For a long time, I had no appointments in the summer--I just felt like I wanted the summer "off". I have noticed that a few of my appointments have morphed to the summer-so I am going to go to them but start moving them again to September/October.... you definitely can have some control over the "when"..... I have a friend who has advanced bc, but is doing really well--when she has her scans, she always couples it with an outing of some sort. For a long time, I used to go shopping after my appointments (that got expensive!!) But you can do things that work for you--- we are fortunate to have this follow up but that does not mean you won't feel anxious--so why not do something nice for yourself at the same time???


That said, this summer (not sure how it happened) I have my colonoscopy on a Thursday and my onc visit on the next day--- that will definitely change going forward!!! I know these extra tests can be scary ( I really dont' want another colonoscopy) but there is so much evidence to suggest that catching things early is really helpful, that for me, that helps me overcome the fear (at least a little).

I also have to say that once you have heard you have cancer, if by chance it should happen again (which hopefully it will not!) (which it did with me with the thyroid) it is not as shocking and you have a full arsenal of skills to employ to deal with it. Again, not saying these things are not scary-they most certainly are.... but you still have some agency in the when you do things, how you do them, etc.

hang in there...


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
Log in to post a reply

Jun 5, 2019 02:50PM Nancy2581 wrote:

Oh I get the fear. It was really bad when I was first diagnosed, but as someone else mentioned time will help. I am 5 years out and this month I have my annual mammogram and ultrasound. I get nervous for those always thinking if it's come back this time. Hang in there.

Nancy


2.8 cm tumor with LVI Dx 6/11/2014, IDC, Right, 2cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/24/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/22/2014 AC + T (Taxol) Hormonal Therapy 1/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/29/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/17/2017 Femara (letrozole)
Log in to post a reply

Jun 5, 2019 06:21PM karen1956 wrote:

Beaglelove - I had my vaginal ultrasound this afternoon and all is NORMAL for a post menopausal gal. When I had my kidney ultrasound earlier this year, an incidental finding was fluid in the endometrium. All my doctors felt it was important to have it checked out to be sure that it was nothing especially based on my history - I was not having any symptoms so no one was really worried (at least not the doctors) but they wanted to be sure. So now its just monitoring my kidney disease, this weird thing called MGUS (which there is no treatment but need to monitor in case it turns into lymphoma) and twice year with breast cancer oncologist. No one knows what caused the kidney disease or the MGUS - and no treatment at this time as I'm basically "healthy". So now I have 2 oncologist and nephrologist - plus the regular doctors - I see all these doctors in August and September plus need to schedule my DEXA scan - so all is good today. Thanks for your prayers :)


Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
Log in to post a reply

Jun 6, 2019 12:27PM Beaglelove wrote:

karen1956– That is great news

3/7/19 ILC 1.8 cm 1 very small micromet which they are treating as node negative

Page 1 of 1 (24 results)