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Topic: ILC stage 3 and 10 year survival

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

Posted on: Apr 12, 2016 07:59PM

Gracejoy wrote:

I am wondering anyone with ILC stage 3 diagnosis and made it to 10 year without any recurrence.

Dx 5/26/2014, ILC, Right, 6cm+, Stage IIIA, Grade 2, 1/10 nodes, ER+/PR+, HER2- Surgery 6/25/2014 Mastectomy: Right Hormonal Therapy 9/9/2014 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Radiation Therapy 10/25/2014 Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 25, 2018 02:24PM dakrock wrote:

Dear Chucksmommy

 Wow that is very frustrating.  I can only imagine how you must feel.  I am seeing my BS for the first time since I had the mastectomy in February 2018.  I am going to ask him to let me have a scan or something since I have just developed melanoma on my face.   They are sending me for a mammogram before I see my BS but I feel like that is such a waste.  It never showed my ILC until it was too late and I developed a lump.   I guess we as patients have to insist that we have these things done to at least give us some peace of mind.   I sure hope he lets me get at least an MRI on my left breast.   Good luck and keep us posted.    

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Oct 12, 2018 05:14AM mmbNaplesFL wrote:

Dx ILC 01/2017 when my right arm was swollen from shoulder to fingers. CT scan showed 'chest wall tumor' wrapped around my brachial artery, vein and nerve so tight is squeezed vein and blood could not get out of my arm. Biopsy showed ILC. After MRI and biopsy it was determined that cancer had grown from outer quadrant of my right breast all the way up to my clavicle. Apparently that took many years.

Yes, all the while me having yearly mammograms as well as some u/s. Radiologist was shocked when subsequent mammogram and u/s STILL did not show him the cancer.

For me chemo given first to shrink cancer which was considered non-operable given the location. Thankfully blood flow was restored shorty after very first chemo treatment. Bmx 07/17. Then rads for 6 weeks.

I still have considerable pain in chest and right arm and some lymphedema being controlled with PT .

I have horrible side effects with Letrozole and they keep changing the brand. My pharmacies say they have no control over the brand that supplier sends them. I had Teva for first 6 month. Apotex for next 3 months. I liked Apotex better than Teva. Now they sent me Natco Ltd of India and it is the worst for me. This doesn't seem right to change at the whim of the Buyer for the Pharmacy. Can this be ok for us to change brands all the time? Are the rest of you experiencing this same phenomenon?

It is hard not to think about recurrence ALL. THE. TIME. But that is counter-productive to living whatever life I have left.

My oc also said that the standard currently is for me to report any symptoms and to forgo any testing. That did not sound appropriate for me. I am the woman who had cancer with no discernible symptoms until, as my oc put it, I was 'on the edge of the cliff.'

I had started a Clinical Trial and I didn't do well with it and thought I had pneumonia so ended up with x-rays of lungs, then a CT and finally a PET/CT scan as there was so much confusion over 'spots.' Word now is that no cancer was detected. My oc told me early on that he expects me to develop mets, even taking the AI. My surgeon and radiologist think I will be fine. Not sure why oc felt the need to tell me that. He is not known to have good bedside manner but is considered a good oc in the area.

I pray for us all every day.



Dx 1/13/2017, ILC, Right, 6cm+, Stage IIIB, Grade 1, 5/39 nodes, ER+/PR+, HER2- Chemotherapy 1/31/2017 AC + T (Taxol) Surgery 7/5/2017 Mastectomy: Left, Right Hormonal Therapy 10/12/2017 Femara (letrozole)
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Oct 15, 2018 04:43AM Chucksmommy wrote:

I have read your post 3 times mmbNaplesFL...I'm so sorry you have had to go through this...and yes I agree it's hard not to think about a reoccurance 24/7. It's so frustrating to me when nobody really listens to you when you're worried. I always hear " you look great and you are doing great "...and that is just not true! It's amazing what some makeup and a wig can do for the outside...but what about the inside? I am frustrated that my onc also relies on me to tell him of my symptoms when I never had any to begin with...and I am frustrated that there isn't better mammography to detect the more rare forms of cancer...I too was just about at the cliff so to speak and I want better/more thorough care! As far as the Letrazole I still have hot flashes even though I have been on it for 10 months now...and everyone still thinks I'm crazy when they're cold and I'm wearing a tank top!

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Oct 21, 2018 12:14PM Annette_U wrote:

I'm still here.......had it in 2013, Stage III. I just hate the hot flashes!!!!! still get 'em every 1/2 hour. Other then that the recon on the radiated side still cramps. The prophy side is fine though. Not sure what happens after 2020 when I finish hormone therapy - I would like to continue it seeing I am only 55 now. I'd feel better taking the therapy until 60. Im pleased I've made it this far and plan on seeing the other side of 80.

Dx 4/13/2013, ILC, 5cm, Stage IIIA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Chemotherapy 4/17/2013 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel) Surgery 10/28/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 12/14/2013 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/6/2014 Breast, Lymph nodes Surgery 8/5/2014 Reconstruction (left); Reconstruction (right) Surgery 11/24/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 8/31/2015 Prophylactic ovary removal Surgery
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Oct 21, 2018 01:10PM - edited Oct 21, 2018 01:10PM by Meow13

Annette, if you aren't bothered by the hormone therapy and your bone health is good you will probably be given the option to continue.

My oncologist said he would prescribed tamoxifen if I wanted to continue. I didn't want to. My SIL got endocrine cancer possibly from tamoxifen so I didn't want to even though I know it is rare.

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Nov 12, 2018 01:33AM - edited Nov 12, 2018 01:38AM by bootsie7

I have not posted for a while...life has been a little rough. I hope I am posting appropriately. I had my 1st surgery 8/1/18. (see prev post) second surgery 9/5/18. Positive margin cleared and port inserted. 1st chemo A/C 9/20/18. Did OK. 2nd A/C was October 4th and Oct 12th I ended up in ER with fever, vomitting, pain and a raging infection. Typhlitis and a bacterial infection. A CT scan was done in er to r/o bowel obstruction. I was admitted and what a week!! My immune system shut down blood count was so low. Potassium levels actually all levels were wacky. My heart went into A-Fib so I was transferred to telemetry floor and of course more tests and meds. Surgeon was called in scared me as they talked about possible surg to remove a small portion of intestine. WHAT!! (Thank goodness that did not have to happen) Then as my daughter read the computer screen that was open in my room, the CT report from ER stated extensive bone mets. Stage IV?..how? Stunned!! I had a pet scan in September that was negative! The day of discharge Oct 19th at the request of my MO I had a bone scan...results were negative. Now my MO wants me to have a core needle bone biopsy to get a definitive answer. I am home recovering from hospital stay and trying to boost my immune system, tired & scared. Has anyone had this biopsy done? Maybe I am just afraid of the results. Since my dx in May things just keep getting worse. How do I trust any of these tests? Thanks for letting me vent ...everyone here is so helpful and kind.

Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 12, 2018 07:06AM - edited Nov 12, 2018 07:07AM by claireinaz

Oh my god, Bootsie, what a story. It sounds awful and no wonder you are venting and frustrated and probably pissed off, too. Could you, when you feel better, get a second opinion on these scans? Have them read by another radiologist first? I have to say that I have not had great experiences with my own ER. They hinted once that my mom's MRI head scan (looking for stroke damage) also indicated some tumor of some type--not true. We took my husband in once for an allergic reaction (he broke out in hives) and they did an EKG and insisted we admit him for more tests because his heart was wonky (it wasn't). We left, having never recieved treatment for his allergic reaction, which to this day is still a mystery.

I guess my point is you need a gold standard specialist to read these reports and right away. Then, depending on time frame, perhaps the biopsy? I hope others will chime in for you.

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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Nov 12, 2018 09:01AM bootsie7 wrote:

Thank you Claire. Well I am seeing an MO from a Comprehensive Cancer Clinic. When she saw my CT scan results she sent for my Pet Scan slides which were done at another hospital. (where I had my surgeries) She reviewed it with 2 radiologists. They are thinking bone mets but my MO says because all tests are not clear she would like the core biopsy. I spoke with my surgeon she agrees with core biopsy as it is the only way to be sure and also identify if it is from breast or ? So if I hadn't ended up in ER with that CT....would not know any of this . If it is bone mets I should never had the 2 Chemo treatments , ended up with life threatening infection and A-Fib and maybe could have kepy my hair. So I am feeling like I am in a nightmare and can't wake up. I keep hoping the CT in ER is wrong.

Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 13, 2018 07:42AM claireinaz wrote:

Bootsie7, I hope it is wrong, too. I can't believe that the ER even allowed your daughter to see CT results without complete confirmation. That seems like a breach of patient confidentiality (in the first place) and I'd be freaking out too. Get the biopsy and brace for results, hoping that the CT scan reading was incorrect. I just remembered another story--my husband had a back problem the same time I was just finishing chemo. He had a CT scan and the radiologist who read it said it looked "suspicious" for SPINE cancer. My husband didn't tell me about it (he was worried sick, I don't know how he kept it to himself) till our PCP called him and told him the first read was incorrect and that he DIDN'T have any cancer. That was 7 years ago. I don't know how those mistakes can be made, but they are made. Our hospital is notorious for lacking standards for care that larger city medical facilities offer. Let us know how it goes.

Big hugs,

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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Nov 13, 2018 10:04AM bootsie7 wrote:

Wow Claire you have had your share of scares too!! To clarify my daughter saw the scan on the computer in my room after I was admitted. The screen was left on and she read it. (she is her mother's daughter ;) I am sending a message to my MO that I will do the biopsy. I have to know for sure. Has anyone had a core biopsy of bone? For some reason I am afraid of a complication. And of course more inconclusive test results. Thank you for responding to my message Claire.

Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 13, 2018 01:50PM Chucksmommy wrote:

Oh bootsie7 I am reading your posts with my heart in my throat...do you have the option of going to any other hospital...one with higher standards and good reviews? You need to have the biopsy for peace of mind but you deserve to have confidence in the care you are getting! Many hugs and prayers for you and your family...praying your biopsy is negative...xo


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Nov 13, 2018 03:01PM bootsie7 wrote:

Thank you Chucksmommy

I have been to two hospitals that are ranked high, with good reviews and I feel that after the biopsy if necessary I could go somewhere else.?

But even if I have someone else read what I have so far a biopsy will still need done for a diagnosis.

Good thoughts, hugs and prayers to you too. :)

Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 14, 2018 05:50AM dakrock wrote:

Bootsie7

 I am so sorry to read your story.   I can only imagine the thoughts running through your mind.   I would agree with everyone here and get the core needle biospsy.  Then find a specialist at a cancer center and have them look over everything.   The last thing you need is to not feel trust with your doctors.   I am going to see my BS for the first time since my mastectomy in February and have to have a Mamogram of my left breast.  I'm nervous about that so I can only imagine how you must feel.  Please keep us posted.  Sending all good thoughts your way.

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Nov 14, 2018 10:43AM - edited Nov 15, 2018 05:37PM by bootsie7

Thank you dakrock,

I still haven't scheduled bone biopsy even though I know I need it. Why such a hesitancy on my part..not like me. ;(

Every good thought goes out to you that your upcoming Mammo is AOK.


Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 15, 2018 06:03PM bootsie7 wrote:

Hi again,

I was able to talk to radiologist who will be doing my bone biopsy. He was kind and honest and I felt better after our conversation. Scheduled for this Monday. He was the doctor who read my CT scan done in ER and he said he stands by the reading however the biopsy will be the definitive answer. So here I go getting it done, then spend the rest of the day resting. Tuesday enter Thanksgiving week with my family and enjoy.

Thank you all for your comments and encouragement.

Hugs to you all.

Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 17, 2018 05:42AM dakrock wrote:

Sending all good thoughts and prayers your way for Monday.   Enjoy Thanksgiving with your family....I know it is hard to put on a smile sometimes but hopefully it gives us all a  chance to get out of our heads :)


Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Nov 17, 2018 03:58PM Trvler wrote:

Bootsie,

Nothing to add but just want to send you hugs and prayers. Please keep us updated.

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016
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Nov 18, 2018 08:23PM bootsie7 wrote:

Thank you all for the kind thoughts, hugs and prayers. :):)

Chemotherapy 9/18/2018 AC Dx 10/19/2020, ILC, Left, 6cm+, Stage IV, metastasized to bone/other, Grade 2, 17/21 nodes, ER+/PR-, HER2- (FISH) Targeted Therapy Ibrance (palbociclib)
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Nov 19, 2018 05:17AM Chucksmommy wrote:

Good luck to you today bootsie7...many hugs and prayers for you! xo

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Apr 9, 2019 09:53AM Texas357 wrote:

Sending prayers, Bootsie! I am 10 years out. After I finished chemo and radiation, I was just told to go live my life and not to think about statistics or the odds of recurrence. I've always tried to live a healthy lifestyle and have redoubled those efforts.



DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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Apr 9, 2019 10:13PM karen1956 wrote:

February was 13 years since my diagnosis!

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Apr 18, 2019 06:14PM Ihopeg wrote:

I made it 12 years before recurrence to spine and brain and pelvis

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/28/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/6/2007 Chemotherapy 1/9/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/29/2007 Breast, Lymph nodes Hormonal Therapy 8/18/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Oct 1, 2020 01:39PM Texas357 wrote:

I'm so sorry to hear that Ihopeg. How are you doing?

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.

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