We are 197,764 members in 81 forums discussing 145,366 topics.

Help with Abbreviations

All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Dcis and hormone receptor status

Topic: Dcis and hormone receptor status

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Mar 20, 2017 06:05PM

goldie63 wrote:

Neither the excisional biopsy or mastectomy pathology reports say anything about hormone receptor status. My surgeon says it's not necessary because since it's not invasive cancer even if it were hormone receptor positive you don't need to take hormone blockers for cancer that didn't grow outside the cell. Does this seem right? Should the tissue samples have been hormone tested? Can they still be?

Sorry if my understanding of what he said is not clear, he did say it wasn't necessary to test though. When I had idc 20 yrs ago it was er and pr negative (they didn't do her2 testing in those days) so I don't really know anything about how this works.

I don't have a copy of the pathology report from mastectomy (yet - I will be requesting). Initial biopsy showed 6mm Dcis, grade 3 w necrosis, < 1mm margins. Surgeon said pathology from mastectomy shows 1.5cm residual Dcis, with now widely clear margins.

I have appt at cancer clinic for consultation on April 4th. Any input is appreciated. Thanks.

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
Log in to post a reply

Page 1 of 1 (11 results)

Posts 1 - 11 (11 total)

Log in to post a reply

Mar 20, 2017 06:18PM annoyingboob wrote:

I had a 7mm dcis, grade 3 w necrosis, highly er/PR+, and had lumpectomy surgery, partial breast radiation, and am now on tamoxifen - they recommended 5 years for me. Said if I had chosen mastectomy I wouldn't need xrt or tamoxifen. I think that's the difference - conservative surgery buys you extra treatment. Bilateral mastectomy is a more difficult surgery but the major benefit is you escape xrt and tamoxifen. Good luck

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/5/2017 Lumpectomy: Left, Right Radiation Therapy 2/21/2017 3DCRT: Breast Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Mar 20, 2017 06:23PM goldie63 wrote:

thanks for that info annoyingboob

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
Log in to post a reply

Mar 20, 2017 06:24PM TrmTab wrote:

I had a UMx so I am on Arimidex as protection for the remaining natural R breast...if I had a BMX, I wouldn't be on AI

Dx 9/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 12/21/2015 Lumpectomy: Left Surgery 1/10/2016 Lumpectomy: Left Hormonal Therapy 2/4/2016 Arimidex (anastrozole) Surgery 6/3/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 1/1/2017 Arimidex (anastrozole) Surgery 9/8/2017 Reconstruction (left): Silicone implant
Log in to post a reply

Mar 20, 2017 07:19PM goldie63 wrote:

Thx TrmTab that makes sense too

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
Log in to post a reply

Mar 20, 2017 07:27PM MTwoman wrote:

Goldie,

For them not to have tested for hormone receptor status would be confusing to me as well. I ended up with UMX and had TN DCIS, but my MO said he'd prescribe me Tamox if it would give me peace of mind. (even though there was no evidence it would be effective in ER-/PR- disease prevention) I didn't really want the SE (I was only 38) with no benefit, so I said 'no thanks'. I think that treatment should be about risk - how much risk of a recurrence do you personally have without the treatment vs how much risk with the treatment - balanced by side effects of the treatment. i.e. is the benefit gained worth the side effects of the treatment. Each woman's personal risk is different, so yours should be discussed with you and you get to make choices based on what level of risk you are comfortable with.

And, no offense to your surgeon, but he/she shouldn't be the one deciding on your follow up treatment. Surgeons cut, MO's prescribe meds and are the ones who are expert in risk based on your pathology and personal stats. The MO needs that pathology to help you assess risk. The RO is the one who determines if radiation is needed and what the risks/benefits are for that treatment. That is why women have a team, not just a surgeon.

If you haven't already got an appointment with an MO, I would. Also, demand that your surgeon get the appropriate pathology before your tissue has been disposed of.

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
Log in to post a reply

Mar 20, 2017 09:56PM goldie63 wrote:

thank you MTwoman. My biggest concern at this point is bc for the 2nd time (idc and niw Dcis), brca2, and with bmx now how am I to be followed up? Once determined to be brca2 I was put into the high risk breast cancer screening program and now without the need for mammograms or breast MRI is it just nothing? I just had to take a little break for a cry. I did not realize how stressed / upset I am sbou this.

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
Log in to post a reply

Mar 20, 2017 10:18PM MTwoman wrote:

Okay Goldie, take a breath. I completely understand not wanting to be in a situation where you don't feel like you have any monitoring or active suppression going on. You've been in active surveillance or treatment for 20 years. It would be jarring to feel like all that is now over. That is why I believe you need to meet with an MO. Could you schedule a consult with the MO you worked with in 1997? Reviewing your personal and family history, pathology, etc and talking about what the risks are and what are the options for risk reduction would give you a chance to better understand, make choices and move forward; rather than just abruptly end care.

So sorry you are so stressed right now ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
Log in to post a reply

Mar 21, 2017 07:53PM goldie63 wrote:

thank you so much for your response MTwoman. I see radiation oncologist in 2 weeks for consult, same RO as 20 years ago. MO retired a couple years ago. I used some of the wording in your post today and I spoke to one of the breast patient navigators at our hospital (which is also the cancer clinic) and got some good info from her. I will make sure I get to see MO too and make sure I am okay with planned follow up. I did get a copy of my pathology report today (will have to look up a few words) and also work form from surgeon and in that one he says hormone results are 'pending'. So now I will wait for RO appt and go from there. I was as I realized having an emotional day yesterday and I truly appreciate your input / posts

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal
Log in to post a reply

Mar 21, 2017 08:53PM annoyingboob wrote:

there are other brca+ women here. Perhaps start a new thread and ask what others are doing

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/5/2017 Lumpectomy: Left, Right Radiation Therapy 2/21/2017 3DCRT: Breast Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Mar 21, 2017 09:08PM MTwoman wrote:

goldie, so glad you feel like you've gotten your team working to help you better understand and manage your risk. glad I could help and that you're having a better day today. ((hugs))

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
Log in to post a reply

Mar 22, 2017 12:37PM - edited Mar 22, 2017 12:37PM by goldie63

thanks annoyingboob, good idea I started a new thread underthe Positive Genetics Test Results topic.

dx bc 1997, age 33; dx lymphedema 2003, with recurring cellulitis; sister dx bc 2014, age 48; genetics testing, BRCA 2 Dx 3/1997, IDC: Medullary, Left, 3cm, Stage IIB, Grade 3, 1/13 nodes, ER-/PR- Dx 12/29/2016, DCIS, Left, <1cm, Stage 0, Grade 3 Surgery 3/3/2017 Mastectomy: Left, Right Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy CEF Surgery Lumpectomy: Left; Lymph node removal: Left Surgery Prophylactic ovary removal

Page 1 of 1 (11 results)