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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 10:59PM

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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May 15, 2018 04:28PM Texas357 wrote:

I will be 10 years this coming fall. I go for my annual oncology visit next week to get this year's test results but I feel great and I'm not anticipating any issues.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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May 16, 2018 09:50PM Gracejoy wrote:

Congratulations. This is so encouraging.Many more years in good health

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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May 16, 2018 11:17PM luv_gardening wrote:

I'm coming up to my 9th anniversary and I'm well. I'm rarely on this page now as I'm in Facebook groups. One for ILC and another for all BC but very informative. I'll probably visit again when I get to my 10th anniversary to encourage others.

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-
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May 20, 2018 08:08PM ck55 wrote:

Gracejoy- I am at 11 1/2 years and feeling great!

Cyndi👍


DX 11/9/06 9cm ILC Stage 3A Mastectomy ER+ PR+ HR- 2/16 Nodes DD AC/Taxol Radiation
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May 23, 2018 03:58PM - edited May 23, 2018 03:59PM by Gracejoy

Congratulations luv gardening and CK55. Wishing you many more years in great health

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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Jun 7, 2018 07:53PM - edited Jun 7, 2018 09:10PM by Chucksmommy

In April of 2017 I was diagnosed with ILC in my right breast...I was told then that I had likely had it for at least 2-3 years...maybe longer. I realize it is a tricky cancer to detect but I have had my mammograms done faithfully every single year like clockwork for almost 20 years! I had several ultrasounds and biopsies and was originally told not to worry because due to my age ( 61 at that point ) that that type of cancer is slow growing and was only the size of a pencil eraser...and maybe a stage 1 if that. An MRI revealed something much different...after being told that even though I had cancer in only one breast that this sneaky cancer would likely develop in my healthy breast I elected to have a bilateral mastectomy and that was performed in July of 2017. The pathology reports don't lie...and not only did I have many cancers throughout my right breast but 27 out of 27 lymph nodes were full of cancer and were removed. My report says Stage 3C...I had 16 rounds of chemo...4 A/C and 12 taxol...I had tremendous bone pain and instead of giving me some type of pain medication ( other than tylenol ) my onc decided to cut my dosage by 25%. I was so upset about that I decided not to tell him of my dizziness or headaches...or neuropathy fearing that he would cut my dosage again...or even worse stop my treatment. When I expressed my fears about not getting the full dose he said they have to make adjustments all the time. Following chemo I had 5 weeks of radiation. Even though I never ever missed a treatment I am told there are no guarantees that my cancer won't return...or that it hasn't already metastasized and will show up eventually...I did have a CT scan a few weeks ago that showed a spot on my liver...I was told not to worry and they will do another scan in 6 months...who tells a cancer patient not to worry?? I could be the poster child for worrying!My cancer was also estrogen positive...so I am taking Letrozol. I find myself to be very depressed and anxious...I am preoccupied and can hardly think of anything but cancer...and when mine will show up again. We are expecting our first grandchild in about 5-6 weeks and I wonder if I will live to see her grow up. I can't really talk to anyone about my fears...they all say but you look great so you are doing great! Well you can't see cancer...I am just a total wreck...

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Jun 8, 2018 06:28AM MRock wrote:

Hi Chucksmommy,

Our diagnoses are identical - I'm 3C ILC as well. I just wanted to say two things to you -

First of all, have you tried therapy? You need to have someone to speak to, and a therapist specialized in cancer patients can be very helpful. And there are often organizations that can help you with costs if that's a hurdle.

Then, my method of coping has been to focus more on each moment. I notice how good my coffee smells in the morning, and I try to stay with that pleasure for a few moments. I focus on what lovely flowers I have on my balcony, and keep my mind only on these, and their colors, for as long as possible.

This is now called mindfulness, but it's a very old practice/habit that we can all develop, and if you reflect on people over your lifetime who seemed content, you may realize they likely had this habit. An aunt and uncle of mine were always chatting about all the little joys of their apparently limited life - the dinner out once a week (at a nearby cafeteria! nothing special), their flowers, the wonderful pears their neighbor had brought by, and so on.

In short, the more I stop and ENJOY some little, apparently insignificant thing, the lighter my burdens seem. And it was a therapist who reminded me to do this, to pick up a practice I knew of but had left aside in the hustle of life. So it all began with a cancer therapist....

I hope that helps.


Dx 7/2015, ILC, Left, 4cm, Stage IIIC, 32/33 nodes, ER+/PR+, HER2- Radiation Therapy External: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Mastectomy: Left Hormonal Therapy Femara (letrozole)
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Jun 8, 2018 08:41AM lrsreyes wrote:

I am a ten-year survivor of a stage 3C lobular cancer. I had few side effects so I have done everything I can exercising 5X a week, changed my diet to mostly chicken, seafood, fruits, vegetable, take supplements ( turmeric, green tea, which were recommended by naturopathic doctors in complementary therapies). When I stop taking Femara I will take DIM ( got dizzy when I tried it so it is an effective estrogen blocker).


Dx 5/5/2008, ILC, 6cm+, Stage IIIC, Grade 1, 15/30 nodes, ER+/PR+, HER2-
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Jun 9, 2018 10:57AM Gracejoy wrote:

Congratulations Irsreyes for making it to 10 years with NED. This is so encouraging for many of us who aren't there yet especially you were with 15/30 nodes positive. May I ask you if you did any chemotherapy after surgery if so what kind? Thanks

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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Jun 10, 2018 05:16AM Momine wrote:

MRock, I do the same, and it is helpful.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jun 10, 2018 08:01AM lrsreyes wrote:

I had 4 A/C then 4 Taxol chemotherapy. I did all the standard treatments for stage IIIC radiation and 10 year hormonal therapy (Femara). The complementary therapies forum is very helpful .

Dx 5/5/2008, ILC, 6cm+, Stage IIIC, Grade 1, 15/30 nodes, ER+/PR+, HER2-
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Jul 12, 2018 04:40PM margue wrote:

oh what timing I stumbled on this thread. My diagnosis is finalizing between stage 3 and 4 (having another biopsy today) and it is just so hard to wait and so damn scary ...and of course I reading so much my head is spinning. congratulations ladies and hoping I will be as lucky as you.

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Jul 13, 2018 01:05AM Momine wrote:

Margue, BTDT, fingers crossed it is "only" stage 3. The waiting is excruciating, no way around it. Once you have answers and a plan it gets a little easier to handle.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jul 16, 2018 12:26PM dakrock wrote:

I understand how you feel.  Everyone says you look great but they don't know how you really are stressing and worrying all the time.  I had mastectomy on my right breast, no nodes involved and I am on letrozole also.  I was lucky no chemo needed I am 72 and have been on estrogen since I was 29 due to a hysterectomy at 29.  I too had ILC and had multiple mammograms every year and followed by sonograms.  I think mammograms are foolish when you have ILC   they don't show anything.    I am not quite 5 months since my surgery and I worry every day about every pain, numbness etc.  My blood pressure has skyrocketed and now I am on medicine for that and anxiety You are not alone in your worries but after reading all these stories I guess the best thing to do is try to stay positive.  I have good days doing that and bad days.   I wish you good thoughts and health and most of all peace of mind.   Good Luck. 

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
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Aug 8, 2018 06:19PM Chucksmommy wrote:

margue I hope you are doing ok...please keep us posted as you can.

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Aug 8, 2018 06:21PM Chucksmommy wrote:

Thank you dakrock...I am taking it 1 day at a time and trying to keep busy.

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Aug 20, 2018 11:02PM bootsie7 wrote:

I needed to see that many live long after treatment. . Thank you for posting.

Had Left Mastectomy 8/1/18 sentinel biopsy and axilliary Saw Oncologist today. ILC Stage 3A Grade 2 17/21 nodes ER+/ PR- HER-

says chance of recurrence.50% .. Treatment can reduce this to 20-30%

Shocked

Recommended treatment:

SickTired

  • Adriamycin once every 2 weeks x 4 doses
  • Cytoxan once every 2 weeks x 4 doses
  • Taxol once every 2 weeks x 4 doses or once every week for 12 weeks
  • Then Radiation
  • Hormone for 10 years after treatment.

I can't just run from this so I need to make a decision. Second opinion next Monday.

So much emotion. Any advice?


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Aug 21, 2018 12:24AM Chucksmommy wrote:

Hi bootsie7...I am so sorry you are going through this. I am curious as to how your ILC was diagnosed as it is so hard to detect. I hope you are healing nicely from surgery and that your pain level is managed well. I was diagnosed in April 2017 with ILC Stage 3C...I was told even though I only had cancer in my right breast that is was very likely I would develop it eventually in the left breast as well so I opted to have a bilateral mastectomy. After many more tests and biopsies my surgery was done on July 26, 2017....27 out of 27 lymph nodes were packed full of cancer and were removed...I do have some lymphedema but it is not horrible! Since then I went through 4 A/C treatments...they were once every other week for 8 weeks...and then I had 12 weekly taxol infusions. The steroids they give you do keep you going and also the anti nausea meds...but the bone pain I had was so intense I simply couldn't stand it for the duration. I asked for some prescription pain meds but my onc elected to reduce my chemo dosage for 25%. When I expressed concern that I felt I now had an ever higher chance of my advanced cancer returning if I didn't get the full dose his comment was simply that we have to make adjustments frequently. After that I refused to tell him about any other side effects that I was having...especially really bad neuropathy in my hands and feet because I feared he would cut my dosage again...or stop it all together. I had seen him discontinue treatment for other patients and I was very fearful any complaint from me would be the end of my treatment too. My last chemo was 1/17/2018...I am still waiting for my hair to grow in...it is growing back but it is all different lengths and looks like a tornado on my head! Also my eyebrows / eyelashes grew in and then fell out...they are finally growing back again. After the chemo was done I had 5 weeks of radiation...that caused infected burns/blisters but they healed up nicely once I was finally given a prescription for Silvadene. I still have some scarring but it's minimal and the least of my worries. After all of that I was finally able to have my 1st plastic surgery done...there will be one more for some tweaking but all in all I am pretty happy with the results. I'm not sure what kind of support you have but my husband was the best caregiver I could have ever had...and he was the best caregiver that he thought he could ever be! He has been literally by my side every step of this journey and I doubt I could ever have made it through without him. I am hopeful that my cancer does not come back but I have been told there are no guarantees. I recently became a grandmother for the very first time...my granddaughter is 10 days old and I desperately want to see her grow up. We interviewed 2 different surgeons before making our decision...and then we were told that chemo must start within the 6 week time frame after surgery...especially because of my aggressive cancer and the full lymph node involvement. All in all I would say the treatment was tolerable for me...but once you have the surgery why wouldn't you go through with the rest of the recommended treatment...I wish you good luck on your journey and I hope you check in from time to time and update us here. Hugs and prayers to you!

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Aug 21, 2018 02:10AM - edited Aug 21, 2018 02:24AM by Meow13

bootsie, good luck to you. There are many people stage 3 lots of positive nodes that never have a recurrence. This is a strange disease stage 3 and lymph node involvement may sound scary but with treatment it is likely you won't see a recurrence.

Also, like you I had ILC er+ pr-, but I also had IDC. I recommend AI drugs instead of tamoxifen more effective. Are you post menopausal?

http://www.cancernetwork.com/articles/anastrozole-...


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Aug 21, 2018 10:27PM bootsie7 wrote:

Chucksmommy....Thank you for your response.You have been thru so much. I went for my yearly mammo and was called back for U/S. Then called back again for biopsies. I started out early stage but with each test it became worse. After LBMX I became a Stage 3. It was much more extensive in the breast and lymph nodes and the doctors were not expecting that. This ILBC is a nasty sneaky disease. The radiologist who read my mammo and followed thru at my request for the U/S read and he did my biopsies well he was wonderful. My surgeon is very good I chose her after I saw her for a second opinion. I stopped pain meds the day after surgery. I will need another procedure as the margins came back positive and she will put a port in for chemo if I decide I want that. My Husband is my support and the best, along with my kids and I have a 8 year old grandson who is my sunshine. Also extended family & friends. I am fortunate.

Congratulations on that granddaughter...a beautiful gift for sure.

Wishes for wellness.



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Aug 21, 2018 11:27PM Chucksmommy wrote:

bootsie7 reading your reply was so much like what I went through during my initial diagnosis...I was originally told I was a stage 1 if that and that my cancer was no bigger than a pencil eraser...after more testing the Dr.s realized I had many tumors...my surgeon found 7 and the biggest was almost 2"...and the full lymph node involvement was another big surprise! I feel so bad that you need a second surgery...and as hard as it is you might want to consider having your other breast removed...we opted for that because we thought it would ease the 24/7 worrying somewhat of getting it and not knowing for years. I had my mammograms faithfully every single year...by the time I was diagnosed I was told that I most likely had my cancer for at least 3 years or longer : ( I'm so glad you have a strong supportive husband like I do...what in the world would we do without them? Oh and I had a port put in for my chemo and continuous blood tests etc...what a life saver! I had no veins left at all! I recently had mine removed before coming out to help my daughter...grandchildren are so wonderful aren't they!! Please let me know how you make out...many hugs and prayers for you!

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Aug 22, 2018 09:41AM bootsie7 wrote:

Meow13...Thanks for your reply... I am post menopausal and already let my doctors know I do not want tamoxifen. I so agree about this cancer as a strange sneaky type. I do not know how the way screening could/should be done for ILC as it doesn't show til it has been around a while?? So routine Mammo do not help in this situation.

Thank you for the article.

The best to you.



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Aug 22, 2018 11:15AM claireinaz wrote:

Bootsie,

My oncologist has told me that a combination of both mammogram and ultrasound is suggested to track ILC (if you haven't had a mastectomy); most insurances will agree. I'd go one further and have someone on your medical team order a breast MRI. I had two of those before I finally had my BMX and then I had one more to see was was left of my breast tissue for a baseline, since surgeons can't get out every single bit of tissue. That (unless someone weighs in) seems to be the gold standard for followup care for ILC, if your insurance will pay for the MRI.

Claire in AZ

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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Aug 22, 2018 11:38AM Chucksmommy wrote:

Claire I wonder why nobody on my medical team ordered an MRI for me after my BMX...I have a follow up appt with mt chemo onc in a few weeks and I am definitely going to bring it up! How long has it been since your surgery?

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Aug 22, 2018 03:54PM Meow13 wrote:

I do yearly mammo and yearly MRI. Radiologist told me mammogram is close to useless in my case. But insurance doesn't see it one size fits all.

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Sep 9, 2018 11:45AM nowords wrote:

I will be 10 years out in 2019. My Mayo Clinic Oncologist thought my cancer went undiagnosed for 10 years....and I had mammos all those years. So I may have had breast cancer for 20 years now... I had positive nodes with extranodal extension ... Some nodes over a cm. My ILC over 10 cm. I had only right mastectomy. Diep flap reconstruction. I had chemo, thought to have no effect. Rads. I did 5 years of Tamoxifen. No Aromatase meds. I get annual blood work and MRI and Mammos. My surgeon gave me a 2 year prognosis after surgery. My rads Doc thought based on her experience, was 10 to 15 years it could show in the bones.

Dx 4/6/2009, ILC, 6cm+, Stage IIIA, Grade 1, 7/22 nodes, ER+/PR+, HER2-
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Sep 9, 2018 12:42PM HersheyKiss wrote:

Nowords, congratulations and thank you for posting! I, too, had extranodal extension. One nodal tumor was nearly as large as the one in my breast. I wish you continued health and hope to see you posting in the distant future.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Sep 25, 2018 11:44AM claireinaz wrote:

Nowords, I needed to read your story today. Every so often I freak out about my + nodes a little, and your story gave me some peace. Thank you. I'm 7 years out this Sept 29.

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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Sep 25, 2018 02:57PM beach2beach wrote:

Interesting, I never thought about asking for an MRI after my BMX. I will have to question that when I go in for my 1yr visit to my breast surgeon.


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 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 25, 2018 03:35PM - edited Sep 25, 2018 03:36PM by Chucksmommy

I had an MRI before my dbl mastectomy...and just 2 weeks ago I asked my onc about another one...it has been 14 months ( tomorrow ) since my surgery...I was told that they don't do an follow up scans and rely on me to notify them of any changes. I asked how they thought I would be able to tell since I have also had radiation on the cancer side and I can't feel anything other than scar tissue...then the NP examined me and agreed...but nothing was scheduled. Today I have an appt with my NP at my cancer surgeon's office because now I am having an issue with lymphedema so I am also going to talk to her about requesting another MRI...or at least another CT scan since the one I had last spring showed a spot on my liver...( my onc said not to worry about it...seriously : (

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