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Topic: ILC Long Term Survivors

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

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Posted on: Dec 4, 2011 08:12AM

NancyNY wrote:

Does anybody know people, or are you someone who has survived ILC long term, (more than 5  to 10 years) without a recurrence?  Please post!

I was diagnosed in 2004, and think I am fine, but, as I see from the boards, you can never be 100% sure.

Thanks!

Nancy 

Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Jan 22, 2013 07:04PM lemon68 wrote:

Thanks Momine. Why do they sometimes do the One step and other times make you wait for recon? I am sorry I have read a ton of things but it hear from someone REAL who had to make these choices helps me to make some, or I least hope it will.

Don't compromise yourself. You are all you've got. There is no yesterday, no tomorrow, it's all the same .... day. Surgery 12/30/2012 Lumpectomy: Right Dx 1/4/2013, ILC, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/23/2013 Lymph node removal: Right, Sentinel Radiation Therapy 3/17/2013 Breast Hormonal Therapy 5/7/2013 Surgery 9/18/2013 Prophylactic ovary removal Surgery 5/4/2014 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 8/25/2014 Reconstruction (left)
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Jan 23, 2013 05:44AM Lily55 wrote:

Momine - can I ask why you were advised to delay recon for 2 years please? For good healing post op or to reduce cancer risk?

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jan 23, 2013 10:07AM Momine wrote:

Lemon and Lily, I had an advanced cancer, stage III, so one-step recon was completely out of the question since my breast skin could not be saved.

At first they thought I might be a candidate for immediate expander placement along with the BMX. This is often done in order to "save" the patient a surgery. However, and this part depends on the doc, I think, there is no hard and fast rule, I needed massive rads and my doctor has seen too many radiated recons fail. But also he was concerned about a local recurrence being missed. ILC is more likely to recur the first 2 years, so he wants me "au natural" until I am past that mark.

It is extremely varied how people react to being boob-less, but although it can be a bit of a bitch in some ways, I really haven't found it all that awful.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jan 23, 2013 04:06PM Lily55 wrote:

THanks Momine - I am having an MRI on my remaining breast now as I have early symptoms that i had in my old breast so your comment about it recurring more often within 2 years is interesting and I am beginning to panic as it was almost this time last year that I first started on this horrid road  - they could not save my skin either but I could cope with mx if I was even on both sides instead of being so lop sided - its the lop sided ness I find so hard and that makes me feel so abnormal as there is over 2lbs weight difference from one side to the other and I am so aware of the difference all the time...........

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jan 23, 2013 05:05PM Momine wrote:

Yes, I do think it is easier being completely without in many ways than having one boob left. I opted for the BMX to avoid frequent mammos and biopsies. Those things scare me, and worrying about another cancer in the remaining breast every 3 months (that is the follow-up they proposed) would drive me nuts.

But there are pros and cons on both sides of this argument. 

I hope your tests come back "clean."

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jan 23, 2013 05:56PM Lily55 wrote:

Thank you - I asked for BMX and for ovary removal but they refused both yet at same time tell me I am high risk of recurrence....!!!

Feeling really sick now as dread being "seen".............

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jan 23, 2013 07:36PM toomuch wrote:

Lily55 - If you are not comfortable with the treatment you have been offered, I would urge you to get a 2nd opinion. If possible at a NCI Designated Cancer Center. There are certainly many women on this board with ILC who have had BMX and oophorectomies as part of their treatment. You should be comfortable with all the treatment you are receiving!

The link to NCI designated centers is below (sorry, you have to copy and paste it.): 



http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names4.html



"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jan 24, 2013 04:17AM Momine wrote:

Lily, I don't know how it works in Spain, but my Greek doctors were very much in favor of getting my ovaries out.

The BMX was against prevailing medical evidence/advice, but my surgeon agreed while my onc thought it was overkill. I have noticed that many female cancer docs say they would opt for BMX in a situation like mine. So it may not be backed by medical evidence, but seems to be backed by the opinion of experienced docs all the same. Supposedly the BMX does not improve survival, and that is probably true. But my idea was that it would save me a lot of anxiety and pain for however long I would be alive. To me that was an important quality of life consideration. My breasts had been ruined by child-bearing anyway and always hurt a lot, so although I miss them for certain things, it was not hard for me to get rid of them.

I should add that I was treated in the private system, thanks to excellent insurance, so what got done was pretty much up to me.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jan 24, 2013 09:27AM claireinaz wrote:

That's really interesting, Momine.  My status is similar to yours (6/11 pos)but grade 1 and stage 2 as mine was 2 c....but it really doesn't make a lot of difference, does it? We had it and don't want it back.  I'm actually getting ready to call both my surgeon and my PS to schedule bmx and immediate recon in June (so I don't have to try to recover during a semester (I'm a univ. lecturer).  I wonder if I should wait till  at least July instead, since that will bring me closer to my 2 year mark. I had 5 months chemo, 6.5 weeks rads, the lumpectomy dx my ILC at the beginning. 

My MO nixed the oophorectomy when I suggested it. I wonder why. I'll have to ask her when I see her again in March.

Claire

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jan 24, 2013 09:43AM Momine wrote:

Claire, I don't know what the answer is. You should ask your doc.

As far as the ooph, there is a downside. You lower your estrogen and avoid ovarian cancer (seems to be related often to ILC, and it is hard to find) so that is good. However, it does also increase your risk of high cholesterol, heart disease etc. In my case I was on the verge of menopause anyway, the cancer was advanced, and my mother had ovarian cancer. Conversely we have no family history of heart disease and I was otherwise healthy, good BMI, blood work etc. So weighing all the pros and cons, the consensus was to get rid of them. It also allowed me to go straight on an AI and skip the tamox. I was not into the tamox, and it now turns out that AIs seem to be more effective against ILC than tamox anyway, so it worked out well that way.

Also, a lot of docs are reluctant to remove healthy organs/parts. They are, of course, right, but I prevailed because they also tend to be quite accommodating to crazy old bats if the bats have serious cancer and bitch and moan enough ;). As it turned out, my "good" breast had DCIS, LCIS and hyperplasia, none of which showed on any of the numerous scans by various methods (ultrasound, mammo, MRI and CT). So I have zero regret about my decision. My surgeon completely agreed when he saw the path.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jan 24, 2013 01:11PM Lily55 wrote:

my ovaries could not be seen on an mri last year so i am not sure if i have both anyway as one report from hysterectomy said they left "at least" ONE OVARY

I already have hyperplasia in remaining breast but they told me it was not cancer so nothing to worry about but that is not what I have read in reputable sites

If there is even slightest cancer i will want it off as want to keep lymph nodes on one side at least! shaking as i ttype that though......its not even a whole year yet -

I don´t live in USA so cannot benefit from a lot of facilities you have -

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jan 24, 2013 03:52PM - edited Apr 19, 2014 08:24PM by InspiredbyDolce

Lily,

Please go to a new team of doctors if you have lingering concerns and feel that you aren't being treated with the standard of care.  You will be surprised what one team unveils as "impossible" another team does as "routine". Reconstruction and 2nd opinions are your right and most likely fall under some type of protection for you, even if you are in another country.

SlviaExMouthUK is from the UK, but she has such a wealth of information on these boards.  Maybe she has some steps or advice from you, and perhaps she has even assisted another sister from Spain as well.  I would recommend reaching out to her, due to her presence on these boards, and she is also been at this for quite some time, so probably has a lot of knowledge and perhaps some information to help you get a new team.

I hope you can find a compassionate caring place that is willing to make the extra effort and get you properly situated.

We are all here for you - good luck and please let us know how things go.  

- Have Breast Cancer Questions?  Many Topics Asked and Answered or submit your own question, directly to: Ask An Expert - John Hopkins Breast Center: http://www.hopkinsbreastcenter.org/services/ask_expert/

After breast cancer, it's Plan B (as follows): Low-fat, low sugar, fish, veggies, whole grains, fruits, water, green tea; 6 hrs moderate-vigorous exercise weekly; and Metformin. If you need info about Metformin to discuss with your Onc, PM me. Dx 12/27/2011, IDC, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 1/3/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 2/1/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 5/29/2012 Reconstruction (left); Reconstruction (right)
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Jan 24, 2013 04:18PM Lily55 wrote:

THank you so much Debra but I have exhausted all options other than going private, which is just not viable......over here it is a very rule bound system and you do not get to choose, it is down to your geographical location....we do not even have a full time oncologist as the hospital is a sub hospital and we in this area are not allowed to go to the main hospital - I have tried several times!

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Sep 1, 2019 10:19AM BeingPresent100 wrote:

This post so inspires me! I was diagnosed with PILC and start chemo on Thursday. It is inspiring to read all the posts especially those that had PILC and went through chemo. Warmly.

Dx ILC, Right, 4cm, Stage IIA, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Sep 13, 2019 12:30AM karen1956 wrote:

Being Present - I'm 13+ years since Dx

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Sep 13, 2019 02:33AM Lily55 wrote:

7.5 years for me but now Stage 4

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/3/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/15/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Sep 13, 2019 02:44AM hlya wrote:

Turning to 11 years from dx.

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Sep 13, 2019 02:44AM hlya wrote:

karen1956: Wow, amazing

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Sep 13, 2019 09:30AM Live_love_laugh wrote:

Hi Nancy do you mind my asking, what treatments you did back then?..DMX/Lumpectomy..Rads, Chemo, Hormone therapy/Tamoxifzn etc?

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Sep 16, 2019 10:32AM Martina68 wrote:

7,5 yrs. Still taking Anastrozole.

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Sep 16, 2019 01:33PM oreolau wrote:

I am 13yrs NED since diagnosis. I don’t remember PILC even being mentioned in 2006. The tumors were multifiocul-small ones covering a large area. I was given neoadjuvent dense dose chemo ACT, then right mix with immediate diep (team) flap reconstruction. It was then decided I needed radiation, and this caused necrosis on the tright side of the reconstructed breast. I then had a lat dorsi to repair. No nipple reconstruction in 06, just a tattoo 😆. I also did 6 years of Arimidex, until I couldn’t stand more! Im very thankful to be alive, but would like to hear about side effect-long and late term. I have experienced fatigue since treatment as well as chemo brain. I also have peripheral neuropathy on the right side, as well as a lot of bone/joint issues.
Dx 5/5/2006, ILC, 6cm+, Stage IIIC, Grade 2, 0/10 nodes, ER+/PR+, HER2- Chemotherapy 5/10/2006 AC + T (Taxol) Surgery 10/10/2006 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): DIEP flap, Latissimus dorsi flap
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Sep 22, 2019 04:01AM Cleta wrote:

7 yrs. Still on Tamoxifen; Experiencing fatigue,nausea, mild lymphoedema and few other small side effects that does not count considering the miracle of being alive!

Dx 6/20/2012, ILC, 2cm, Stage IIB, 3/23 nodes, ER+/PR+, HER2-
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Sep 30, 2019 09:11PM BeingPresent100 wrote:

Inspiring! Thank you for posting. Thursday is my third treatment and your post made my night. Keep on! xo.

Dx ILC, Right, 4cm, Stage IIA, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Oct 1, 2019 01:35PM BeingPresent100 wrote:

@karen1956 did you have lymph node involvement? Congrats on the journey. Inspiring.

Dx ILC, Right, 4cm, Stage IIA, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Dec 12, 2019 12:47AM toomuch wrote:

I'm 9 1/2 years out from diagnosis and have almost reached the 9 year mark on Arimidex. Despite my developing osteopenia, I'd stay on it forever if my MO would continue to prescribe it. I'm grateful for every day!

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Dec 12, 2019 02:17AM MikaMika wrote:

too much,

Thank you for posting!

Are you taking the original Arimidex or its generic version?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 12, 2019 09:02AM momand2kids wrote:

I am over 11 years out from dx- not on any drugs at this point--just regular mammograms, clinical exams, MRI periodically--- have had low level thyroid cancer and a low stage melanoma since.... but overall am very healthy and living well and feeling very fortunate so far!!!!!

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Dec 21, 2019 07:50PM IllinoisNancy wrote:

I have had ILC since 2006 which makes me a 13 year survivor. I have not had a smooth road but I'm here and feeling pretty good most of the time. I've had 3 recurrences so my treatments have been extensive. I'm currently on Ibrance and Femara. I plan on living a very long time and will continue to fight this beast:)

Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Jan 22, 2020 09:31PM sweetgirl19 wrote:

Just recently diagnosed, I know of two women who have survived with ILC with no recurrence, one is 17 years, the other 10+

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Jan 31, 2020 06:27PM beach2beach wrote:

Always love to see new posts on this topic. <3

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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