Join Us

We are 219,622 members in 84 forums discussing 161,608 topics.

Help with Abbreviations

Topic: Trying to shrink tumor before surgery?

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

Posted on: Nov 17, 2018 10:29AM

Shamrock0310 wrote:

I am 40 years old and was diagnosed with ILC on October 2nd. I have a 5 and 6 year old. I am going to a university hospital but I am having trouble accepting the surgeon's treatment plan. When I first met with surgeon on 10/9 she said the tumor in my right breast at 11 o'clock was 2.5cm ILC that is ER/PR+ Hr2- and my onco score is 12. I tried at that time to tell her I wanted a mastectomy but she said I didn't have to decide right now. She said she wanted to try and shrink my tumor for 3 to six months before doing surgery so they started me on Tamoxifen on 10/30. My tumor is causing more and more pain. During my meeting with the mo I explained that I am in a lot of pain. MO said she would see about getting the SO to agree to do the surgery now instead of waiting so that I wouldnt be in so much pain. The SO wouldn't change her mind. I finally got my MRI done on 11/5. The MRI came back as showing the ILC tumor is 8cm in size and from 8 o'clock to 12 o'clock and involving the nipple. SO set up biopsy on the 8 to 9 o'clock spot on 11/13. Went for biopsy and doctor said no reason to do them if I want MX and to speak to SO. SO relayed through nurse navigator that she still wants me to do the tamoxifen for 4 months to try and get a 50% reduction in size before doing the MX.

My question....has anyone else had a large tumor and wanted a MX but SO insisted on shrinking tumor before doing surgery or should I get a second opinion?

Dx 10/2/2018, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Page 1 of 1 (19 results)

Posts 1 - 19 (19 total)

Log in to post a reply

Nov 17, 2018 11:04AM Dani444 wrote:

ILC is pretty sneaky and does tend to hide in imaging so not surprising that your MRI measured differently. I had completely different measurements from mammo, US, and MRI. It was finally decided at tumor board that it was 4.7 cm and my surgery path showed it was 4.8 cm. I was pretty impressed with the radiologist that determined that! Shrinking my tumor was never discussed, my BS said mastectomy was my only choice, we talked about nipple sparring but at my pre op she decided no. My tumor was also right behind my nipple.

Is your surgeon a breast oncology surgeon? I would consider a second opinion for sure You need to be comfortable with your treatment plan and deserve to have your concerns addressed to your satisfaction. Best wishes as you move forward I understand how hard waiting is

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 17, 2018 11:18AM Shamrock0310 wrote:

Thank you so much for replying! Yes she is a breast oncology surgeon at Emory in Atlanta. My original mammogram and ultrasound done at the end of September showed a tumor about 2.5cm with one beside it that was just thought to be a 1cm cyst and not involving the nipple. She had me down as doing breast conservation when I went for my ultrasound and biopsy on 11/13 even though I keep telling them I want a MX. The radiologist even called her to tell her that it is for sure involving the nipple and that I want a MX. She said she would do it but not until I wait 4 months to see if it will shrink. I just feel like she is trying to push the lumpectomy on me. I know lobular is supposed to be slow growing but I am scared to wait that long as now my nipple is involved where it wasn't 2 months ago. Also it feels larger and is burning and hurting everyday. I am just scared of it not shrinking with the tamoxifen and then having given it 4 more months to grow.

Dx 10/2/2018, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 17, 2018 01:08PM Moderators wrote:

Hi Shamrock0310, and sorry to hear what you are going through. Based on what you are saying, it sounds like you would indeed greatly benefit from getting a second opinion, as Dani444 expressed. It is very important to feel comfortable with your treatment team, and your treatment plan right from the beginning! Please keep us posted.

To send a Private Message to the Mods:
Log in to post a reply

Nov 17, 2018 03:37PM dakrock wrote:


I also had ILC and had a large lump.  My surgeon said the same thing.  He put me on Letrozole in December 2017 but my surgery wasn't until February 24, 2018.  He said it would make it easier to remove the breast if the tumor was smaller.   It never hurts to get a second opinion but I was told the same by another doctor.  He said you are already being treated with the Letrozole so that is treating the cancer.  Good luck and keep us posted.  Sometimes I feel like this is never ending.   

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/4/2017 Femara (letrozole) Surgery 2/22/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Nov 17, 2018 03:41PM KMo1975 wrote:

I just wanted to share my story with doing neoadjuvant therapy before lumpectomy. I too was told to try an AI (Arimidex) to shrink the area for a better surgical outcome. We monitored it with MRI every 3 months. The first 3 months, the MRI showed very little difference, however, after 6 months the area was had reduced to about 85 percent as seen from the original MRI. I was hopeful that the lumpectomy followed by radiation would be enough for a good outcome.

I did get a good margin on the ILC. However, the pathology report then revealed PLCIS area which I am now getting second opinions on. I felt I could and always can have a BMX if needed. I thought that taking smaller steps and seeing the results would give me more information to make better decisions.

Had the lumpectomy path report been clear, I was well on the way to having this behind me after radiation and not faced with reconstruction decisions that come with the BMX. None of those options were or are appealing.

I was diagnosed almost a year ago. And if I had to do it all over again, I would still choose to try and shrink the area, see if the medication was effective before removing the ILC. I do now feel confident that the AI is effective for the ER positive biology. Our ages are different, I'm 61, post-menapausal with grown children and I calculate my absolute risk as 2% per year for the next 20 years for recurrence.

You are much younger, so maybe if I were in your shoes, I would make a different decision just based on the absolute risk percentage per year. You may want to ask your Dr. their opinion on that. I'm not sure this helps you, but I wanted you to know that there are those of us choosing the option to shrink the area for a better surgical outcome. I wish you the best in making your decision. I think the common surgical approach is less is more if successful and if not, the BMX is always on the table.

Pleomorphic ILC and Pleomorphic Lobular Carcinoma In Situ 4.5 cm Dx 12/1/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 2/1/2018 Arimidex (anastrozole) Surgery 9/24/2018 Lumpectomy; Lymph node removal: Sentinel Surgery 12/19/2018 Lumpectomy: Right Radiation Therapy 3/4/2019 Whole-breast: Breast
Log in to post a reply

Nov 17, 2018 04:50PM Astrid wrote:

Hi shamrock

I would be getting a 2nd opinion at the best cancer specialist hospital you can find.

Really wishing you well with the best outcome possible for your case.

"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

Nov 17, 2018 05:05PM Shamrock0310 wrote:

Dskrock, I am so glad to hear someone else had the same reasoning . I have been reading and it seems like many that are similar to mine have surgery first and then the hormonal therapy. It is just so hard to be patient and wait it out when I know I want a MX.

KMo1975, thank you for sharing your story. It does help to hear about others with lobular and why you chose what path you did. I will have to see If she would go over the risk percentage with me.

Dx 10/2/2018, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 17, 2018 05:15PM Shamrock0310 wrote:

Thanks Astrid, I am still trying to figure out where I could go for a second opinion. I am in Georgia and with two small kids in school I am not sure about travelling farther for a second opinion.

Dx 10/2/2018, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 17, 2018 06:26PM MelissaDallas wrote:

Emory is an NCI Designated Cancer Cente

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
Log in to post a reply

Nov 17, 2018 06:43PM Shamrock0310 wrote:

That is where I am currently receiving treatment and I don't think there are any others in my state

Dx 10/2/2018, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 17, 2018 08:41PM Racy wrote:

Hi, it sounds like the surgeon is not a good listener. Can you get an opinion from another breast surgeon in the same practice/hospital?

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 18, 2018 02:27PM vlnrph wrote:

Not to add more consternation to the issues already facing you, but has anyone suggested genetic counseling?

At such a youthful age, even with little or no family history, there could be a mutation present which might influence your decision making

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

Nov 28, 2018 09:05PM Lynnvi wrote:

I felt a lump and was then diagnosed at the end of May 2018, with ILC, Left, 2.9cm at 7:00, Grade 2, 1+ Lymph Node, ER+/PR+, HER2-, and Genetic Test PALB2+. I saw the oncologist on June 13, 2018 and then started chemo on July 3, 2018. I was given 16 weeks/8 sessions of chemo (didn't receive the 8th round due to numbness in feet and hands) to hopefully shrink the lump enough to spare my nipple. My MO told me Mastectomy was my best option as my size was not large enough to do a lumpectomy. When the genetic test came back positive the MO and I both agreed a double mastectomy was my only option. I plan to have a double mastectomy and flap reconstruction BUT am so confused now because the surgeon told me I would need radiation after surgery. NOW I don't know which route to take and none of the doctors want to give me their "best option" opinion. I know radiation can effect the reconstruction but can also effect the nipple with the expanders if I wait for reconstruction. SO I don't know which way to go - I only had chemo (since they weren't sure it would help since I am hormone positive and will end up on the hormones for 5 years) to help save my nipple and don't want to now lose it after going through the chemo. Has anyone else had to decide in regards to reconstruction whether to wait or not before radiation? I hope this made sense as I am very confused..

Dx 5/17/2018, ILC, Left, 1cm, Stage IIIB, Grade 3, 6/23 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 7/6/2018 AC + T (Taxol)
Log in to post a reply

Nov 28, 2018 09:53PM jessie123 wrote:

UAB in Birmingham is one --- That's only a couple hrs from you.

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 4/15/2019 Whole-breast: Breast
Log in to post a reply

Dec 1, 2018 09:37PM phlorada wrote:

HI Shamrock, I received a similar diagnosis as you but a month after you. I just had and MRI and Petscan.I am trying to get an appointment with the referred oncologist. I believe they want to shrink the tumor before surgery but, of course, I want to get this tumor out of me. I have been watching your post and I will post what the doctor recommends to me. After reading all the comments, I feel my doctors are dragging their feet and I would like to have some game plan! I don't have nearly as much information a month after diagnosis as you do!!!

Dx 11/2018, ILC, Right, 6cm+, Grade 3, ER+/PR+, HER2- (FISH)
Log in to post a reply

Dec 1, 2018 10:03PM Shamrock0310 wrote:

Hello Phlorada. I am so sorry you are going through this as well. All the unknowns are hard. I hope you get all your details soon. I know exactly how you feel about just wanting the tumor out. I hope you are able to get in with your oncologist soon. I was happy that all my genetics testing came back negative. I have been on the tamoxifen for about a month now. It is going ok. I am having some side effects but hopefully they won't get any worse. I am meeting with my surgical oncologist in the next week or so to talk about her plan again. She really feels like the tamoxifen will shrink the tumor but that it is a med that takes time to work. She has set me up for another MRI for March but they are wanting to give it 4 to 6 months before she will do the surgery. I am still trying to decide on getting a second opinion or not. I know I am at a great hospital and having two kids in elementary school doesn't make it easy to get everything together to go somewhere else for a second opinion. Please do let me know what they say.

Dx 10/2/2018, ILC, Right, 6cm+, Stage IIIA, Grade 1, 1/4 nodes, ER+/PR+, HER2-
Log in to post a reply

Dec 1, 2018 11:00PM OCDAmy wrote:

I thought I was the only one who tried shrinking the tumor first with hormone treatment. My MO put me on anestrozole for 4 months after the surgeon said he wanted the tumor smaller before surgery because it was so large. We just went by feel to see if it was shrinking because it was easy to feel it. After four months, it didn't feel like it was shrinking. The surgeon ordered a mammogram and ultrasound and said it looked about the same and I insisted we move forward with surgery. I was happy at least that it didn't get larger during that time so it must have heen doing something. My MO felt that we needed 6 months or more to shrink it but I couldn't stand having it there anymore. I had BMX. I'm back on the AI again. Best of luck.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast
Log in to post a reply

Dec 24, 2018 01:46AM princessfluffybritches wrote:

Get this. My 1st OC said there's no point in doing a mastectomy now since it should responds to the meds. I didn't understand that but my 2nd opinion from a well known center said the same thing. Now I moved to a different state and go to an OC in a hospital and he says the same thing! So I guess I don't need surgery at this point. This new doc seems pretty up to date on the latest and I feel comfortable with him. The change to a new doc went much better than I thought it would!

Surgery 7/12/2018 Targeted Therapy 7/13/2018 Ibrance (palbociclib) Hormonal Therapy 7/13/2018 Femara (letrozole) Dx 7/21/2018, ILC, Left, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2-
Log in to post a reply

Dec 24, 2018 02:19AM Peregrinelady wrote:

If you are sure that you want a mastectomy, I would find a different surgeon ASAP.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)

Page 1 of 1 (19 results)