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Topic: My sister was diagnosed need advice.

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Sep 27, 2018 10:16AM

Carolinagirl3 wrote:

My sister (53) was just diagnosed with Invasive Ductal Carcinoma. Apparently Stage 3. Growth rate 7, aggressive. It's 1.8 in size and irregularly shaped with jagged edges.

From my minimal understanding she has the most common type of breast cancer. Her tumor is small. It was found early. So all reasons to be optimistic.

Her lumpectomy is scheduled for Monday.

Here are my questions and concerns.

Her surgeon is in a smaller town. He's not a surgical oncologist. But he told her he's done over a 100 of these procedures. And he sits on the board with the Erlanger Breast Center (Chattanooga TN). He told her the board will meet to go over all of the results (pathology, images etc.) to recommended her treatment after the lumpectomy.

As I shared her lumpectomy is scheduled for Monday. Having had cancer myself (not breast) as well as our father, grandmother (breast cancer), great aunt (breast cancer), uncle, aunt (ovarian) and we lost our 15 year niece to non Hodgkin's lymphoma only 9 months after her diagnosis. So I admit I am leery and even very protective of my sister.

When I've have had lymph node dissections there has been a pathologist on site. Apparently this lumpectomy will be an out patient procedure which I understand is common but there isn't a pathologist on site. Even doing a lumpectomy do they try for clear margins the first time while the patient is on the table to avoid going back in? Am I wrong to question if a pathologist should be on site for at least the lymph nodes?

I understand there is waiting in cancer. It becomes an unwanted partner. But when she had her needle biopsy she had to wait over 5 days for the results because they were done in the smaller town and the specimen was sent to the Erlanger.

If you're wondering if anything is preventing her from asking for a referral and going to Erlanger the answer is no.

This has all happened in the space of 2 weeks most waiting. I'm in eastern NC and due to the hurricane have been prevented in leaving. But I am flying to be with her this weekend. My parents went with her to her appointment yesterday and my sister had a long list of questions and was prepared to ask for a referral to a surgical oncologist.

After the appointment she said they (she and my parents) felt comfortable with her surgeon and he was knowledgeable.

It is her choice and I will always respect that which is why I am turning to this forum.

I believe my sister will beat this. But I want to help her stack the odds in her favor for "now". So 3, 5, 7 years down the road we aren't living with regret.

I also understand to expect the unexpected. No matter the best cancer surgeon and center more surgeries and treatments are common place.

But what can you share with me about her cancer and the few specifics I have to share? Should genetic testing be pursued in this scenario? On our maternal side our great aunt and grandmother (they were sisters) had breast cancer. On our paternal side the history isn't complete but our Aunt is currently fighting ovarian cancer.

What have you done?

What would you do?

Today is Thursday. Her lumpectomy is Monday.

It feels as if I am trying to get a ph.d in a few days.

But have no doubt. I am positive. I love her. And most importantly it IS HER body and decision. And I support her.

Will you help us with sharing your knowledge and experience?


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Sep 27, 2018 12:50PM Moderators wrote:

Carolinagirl,

We just wanted to drop a line and say welcome to Breastcancer.org. We're so sorry to hear of your sister's diagnosis, but we're really glad you've found us, decided to join our Community, and asked your questions here. We're sure you'll find this space very supportive and full of answers, experience, and advice.

We look forward to hearing more from you and are hoping you get some responses soon!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 27, 2018 01:00PM Denise-G wrote:

I am sorry about your sister. My sister and mom were diagnosed after I was with BC, so I understand your feelings and concern for your sister.

I am a firm believer in getting a second opinion at an National Cancer Institute Designated Cancer Center. https://www.cancer.gov/research/nci-role/cancer-ce...

My reasons are many - but to address your lumpectomy fears, they have the technology to make sure margins are clear with a pathologist on site for surgery. Both my mom and sister would have had to go back into surgery had they both not had this technology. Plus, if your sister is on the edge whether or not she should have chemotherapy, the NCI designated cancer centers have the latest and best information.

Many, many women are treated at their local hospitals and do just fine. But I have had so many adverse experiences with local hospitals and so many amazing experiences at NCI Designated Cancer Centers that to me there is no comparison. I will give you a quick example. Local hospital said my 80 year old mom needed chemo and radiation. NCI hospital said no way. Lumpectomy only. She is now 5 years out and doing great!

Also, your sister and you should definitely have genetic testing. My sister and I tested positive for the Chek 2 1100 delc gene although we were the first members in our family with breast cancer. However, my dad's side of the family was full of various types of cancer.

GOOD LUCK in supporting your sister!

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/22/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/26/2011 AC + T (Taxol) Targeted Therapy 2/27/2012 Herceptin (trastuzumab) Hormonal Therapy 10/10/2012 Arimidex (anastrozole)
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Sep 27, 2018 01:46PM SpecialK wrote:

carolinagirl - just wanted to clarify a couple of things - you mentioned in your post that your sister was diagnosed with a stage 3, growth rate 7 (aggressive), 1.8cm tumor. Prior to surgery staging is clinical, but for your sister to be staged at 3 with a tumor that size, she would need confirmed malignancy in at least 4 lymph nodes, or a tumor greater than 5cm. I am thinking that the staging info was miscommunicated, and that she is actually - at this point pre-surgically clinically a Stage IIA. I have linked staging criteria from Breastcancer.org for you below. The growth rate you describe, which is grade, would actually be a Grade 2, which is intermediate. The number 7 is comprised of 3 categories of cell appearance, each given a score of 1-3 depending on specific factors. These 3 scores are added up with 3-5 being Grade 1, 6-7 being Grade 2, and 8-9 being Grade 3. Also linked is grade info from Johns Hopkins with a very good explanation of how grade is determined and the specific of what the pathologist is looking for.

https://www.breastcancer.org/symptoms/diagnosis/staging

https://pathology.jhu.edu/breast/my-results/staging-grade

As far as having no pathologist on site - often during breast related procedures the pathologist does a cursory exam of the removed sentinel lymph node(s), but it is not a full pathological exam of either the sentinel node, or the removed tissue from the breast. The disadvantage of not having an immediate look at the sentinel lymph node(s) is that if there was a spread to the nodes it might not be discovered while your sister is in the OR if the area of cancer is not grossly evident. If there is found to be a spread to the nodes she might need an additional surgery later to remove more, but the tumor board would weigh in on whether this is necessary or if her subsequent radiation - customary after a lumpectomy - would be enough to deal with that. Not all surgeons have a pathologist look at the breast tumor while the patient is in the OR to determine margins, this is usually done in the lab later. Usually for the breast tumor the lumpectomy patient is taken to radiology and a wire is inserted, using mammography, that guides the surgeon to the area that needs to be excised. Even with wire guidance, and even at NCI centers and university based hospitals, there is about a 20-25% re-excision rate, meaning that another surgery needs to be done to get clean margins. This is the nature of lumpectomy, which is a balance of removing the minimal amount of breast tissue while still trying to remove all cancerous area. For the lymph node(s) removal, a dye and/or tracer is injected - sometimes the day before, sometimes in pre-op, sometimes in the OR - to guide the surgeon to the first node(s) in the axilla (underarm) away from the breast that take up the dye/tracer, and those are removed and sent to pathology. As far as the wait for pathology, 5 days is not uncommon and if her sample had to be sent away, it is actually reasonably fast. I waited longer than that and I had access to a university based hospital, and my oncological breast surgeon is the former head of breast surgery in the NCI center directly across the street from where my biopsy was performed. I waited about a week after surgery as well, the surgical pathology was reviewed at my post-op appointment.

Due to the family cancer history it seems genetic testing is warranted, but it is important to note that the majority of breast cancers are not linked to known genetic mutations. I would advise that if your sister's tumor is ER+ and Her2- (these are hormonal receptors and Her2 status - which should already be known from her biopsy sample - and the most common receptor/Her2 arrangement among those diagnosed with breast cancer) then the OncotypeDx test, which is genomic testing, should be performed on her surgical tissue sample to help determine whether there is any benefit to adding chemo to anti-hormonal therapy. Here is a link to that testing information:

http://www.genomichealth.com/en-US/oncotype_iq_products/oncotype_dx/oncotype_dx_breast_cancer

Wishing you and your sister the best, it is awesome that you will be there to support her. If anything I have posted leads you to more questions please do not hesitate to ask!

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Sep 27, 2018 03:42PM - edited Sep 27, 2018 03:45PM by Carolinagirl3

NaSince I haven't been able to go to Tennessee yet I thought the staging diagnosis wasn't for certain due to reading I've done on reputable websites and my own melanoma journey. Thank you for clarifying that because I told my sister my sister not to focus on the stage until all of the results are in. And even then it is a number assigned.

And I she did call and verify that the sentinel lymph node biopsy would be performed during her lumpectomy.

I appreciate all of the other information and advice from everyone.

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