I need urgent help for my sister ASAP

Carolinagirl3 · September 2018

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.k

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?

I understand there is waiting in cancer. It becomes an unwanted partner. But when she had her needle biopsy she had to wait almost 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.

How can I help her? 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?

Sent from my iPad

Ingerp · September 2018

If you’re asking if she should postpone surgery to get the genetic testing done and consider a mastectomy instead, I’m sure this option was explained to her. And you should know it’s not at all uncommon to have to get a re-excision following a lumpectomy, although I believe it’s more common with DCIS (which my BS called “squirrelly”—you can’t see or feel it). I’ve read it’s as high as 25-40% for a second surgery.

If it were me and I was as concerned as you obviously are, I’d ask (once) if she’s thoroughly thought through the lumpectomy vs. mastectomy decision. If she’s at peace with the lumpectomy, then support her in that.

gb2115 · September 2018

Sorry to hear about your sister. I don't know the answer to all of your questions, but I can say that for lumpectomies there aren't always pathologists right there to assess and look at margins. I had my lumpectomy done outpatient surgery in a hospital, and didn't get my results until a week later. Thankfully I had good margins at the time. I did have a positive lymph node, so I ended up getting the lymph node area radiated.

My reason for sharing is to encourage that if there isn't a pathologist in the OR, it doesn't mean the facility doesn't know what they are doing. I also went to a general surgeon who's focus was breast surgery, but isn't a breast surgical oncologist. She was great and I'm glad to still be in her care.

Georgia1 · September 2018

Thank you for caring about your sister. In my case I "shopped around" and found a surgeon who had a pathologist in the operating room to check the margins then and there. But IDC is simpler than ILC so if your sister has a surgeon she trusts I'd just support her and move forward.

Genetic testing can also come later. And for that matter, she can also choose to have a masectomy later, even after the lumpectomy. In my case I paid $400 out of pocket for the genetic tests, after my lumpectomy, just for peace of mind.

But lumpectomy + radiation is a reasonable choice.

NotVeryBrave · September 2018

I'm sorry to hear about your sister and understand your desire to help her. It does seem like you need a degree to understand so much of what is thrown at you so fast! And this is the place to ask a lot of questions - although her providers are going to be the ones with specific knowledge.

A couple of things to consider: BC is rarely an emergency situation, even an aggressive cancer. There is no need to be in such a rush that you feel pressured or unsure of your choices.

Second opinions are like gold to me. I've found that it is so helpful to hear another perspective, to hear another plan of care, to ask all of my questions yet again. Even if the answers are the same - the confirmation is worthwhile.

Genetic mutations account for only something like 5% of cancers. Still - with a lot of cancer in your family, it might be helpful to know. If a mutation is found then a mastectomy might be recommended.

And I would always want to see an oncologist before surgery for their take on things. My cancer was a type that required chemo as well as targeted therapies before surgery - that was a given and my surgeon knew it. Some cancers may not be as clear for treatment plans and most patients will be followed by an oncologist so why not start that relationship now?

I wish the best for you and your sister.

Salamandra · October 2018

I don't know if it helps, but I am in NYC where there are a ton of medical and cancer resources. My biopsy was done at one location of an extensive lab system, and it took me a week to get results. I'm being treated at Sloan Kettering, which has a very good reputation. I had a lumpectomy and as far as I know, there was no pathologist to check the margins on site. I am still waiting to get the results of pathology on the tumor, margins, and lymph nodes. So this seems like pretty normal practice and not in itself reason to be skeptical of the medical team.

My surgeon told me that she gets the margins they want about 90% of time, and about 10% have to go back and clear it up.

I did not get a second opinion before my surgery. I just wanted to get it done. So I can understand your sister's position. But maybe you can talk to her about getting a second opinion on all the pathology readings/slides after the lumpectomy? This might be easier logistically and emotionally for her. And if there is a disagreement, there is still plenty of time to act on it then.

I need urgent help for my sister ASAP

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