My sister's doctor says I'm doing everything backwards

Mamie2

Hi ladies. I'm talking to my breast cancer surviving sister. I asked her to find her path reports from 1989 but we can't find them. She called her doctor who shepherds her care who is a hematologist. When her doctor learned I had gone straight to a ps to take a lump out of my breast, and then was referred to a general surgeon (who read my path for me. It was cancer!! yikes))) and then for lymph node dissection, she said I needed a medical oncologist. I became uncomfortable with not having a breast specialist so I found a breast cancer surgeon to do a sentinel node biopsy (Wednesday!) and he wants to get a wider margin (my margins were 1 mm clean) they want 2. I assumed that my bs will refer me then to the medical oncologist for treatment....  I told my sis I didn't know I had cancer when i went in for a lumpectomy!! So - have I lost a month because I have not been in treatment?? 

ngcm05

first you get your biopsy.  Then you meet with the surgeon and oncologist.  I found a breast surgeon who worked with my oncologist.  Then your breast surgeon gives you the name of a plastic surgeon (if you want reconstruction).  I met with my oncologist first, then the surgeon, then the plastic guy.  In that order....you need the cancer analyzed before you meet with the surgeon.  At

bluedasher

The way it went for me was:

Radiologist did the biopsy and called me 4 days later with the preliminary bippsy result - positive for IDC.

Met with the breast cancer surgeon a week later who had the full pathology report with the results from HER2 and ER/PR tests. Also preliminary staging - they can't do final staging until after surgery and SNB. He went over my surgical options and answered any questions.

After surgery, I was referred to the medical oncologist and radiation oncologist and had my first meetings with them. My oncologist lists her specialties as Hematology/Oncology and she is board certified in both. I don't know if all medical oncologists are also hematologists. Chemo started about 5 weeks after surgery. Radiation will be after chemo.

I'm with an HMO so the surgeon and oncologist work together and referals between them are quite prompt. 

This was all for a fairly small lump - if the lump is large sometimes they do chemo first which would change the order.

lilith

It sounds like you did the lumpectomy instead of the biopsy... ! It is a bit unusual, but then again, why not. There was a lump, and out it got. So that is fine.

Now, knowing that the lump was cancerous, it makes sense to do a node check, and at the same time to get clear margins. By the time you'll read this, you'll be done - and then you'll see depending on the nodes what further treatment you may require.

Remember not to second-guess yourself. There is enough to go crazy about, without adding doubts to it! Many people have to wait a month or more before the surgery (even after the biopsy confirmed that it is a cancer), in your case the beast is already out - and the area will be cleaned out now. So all will be OK.

barbe1958

Don't put a question mark where God put a period.

Linsky

It is very quick, good for you...now the waiting but you don't need to stress, stay positive, take care...

Anonymous

Sounds like the first doctor faiiled to communicate the results of the biopsy but you are in good hands now it sounds like.  Always insist on your own copies of reports for ANYTHING.  You would be surprised the little things they don't feel its important to share with you.

bee5467

Hi there Mamie --

I reread your post several times . . . Have you been diagnosed with BC???  You don't need, and shouldn't be referred to, an Oncologist until there is a cancer diagnoses.  

Do you have an overall family doctor or internist that is coordinating all this for you???  So far, I think you've done pretty well.  Tell us more, OK??

Mamie2

Hi ladies. 

Yes, bee, I have bc. (I edited my first post). I had my (second) lumpectomy last week, still a bit sore. I have an incision around the areola, where the bc surgeon went in where the plastic surgeon did last month. He found 2 more small malignancies in the margins!! He cut them out and took even a wider margin. Then there is about a two inch incision on the lateral side of my right breast where he took 3 lymph nodes and they were clean!  I went in quickly for my post op today, and spent alot more time with my first visit with my med oncologist. I'm supposed to do radiation now after a couple weeks, and then she wants me to take arimidex. Because my infiltrating ductal carcinoma had lympho-vascular invasion, she talked to me about chemo. She advised we get an oncotype test done to give us a better idea of what we're dealing with. Also, I did the genetic testing for the breast cancer gene, but the lab called me and wanted me to pay over $1400 out of pocket. I said no. So my med onco said it MIGHT be possible to get funding for that. I was diagnosed Dec. 16. I have to say that it still hits me like a ton of bricks. Anyone else feeling this way? I know!! Think positive!! I need to go read about radiation... and nutrition. I want to change what I put in my body. I want my body chemistry to be as uninviting to cancer cells as I can make it? Any tips here?

bee5467

Hi there, Mamie  . . .

OK, we have some things in common, but you're better off stage-wise than I am . . . I had a mast., lymph sections, positive nodes (unlike you, you GO girl), then chemo & rad.  I finished all that July 2nd.  I'm on Arimidex now.  After all this, things are beginning to settle down.  I have not done the BRACA test yet.  Still ruminating on that one.  

Everything you've done is right on, and everything you're feeling is also right on.  You will get through this.  Just keep reading everything of interest to you here.  It will save you months of anguish.  I found it after all the treatment.  You're right on track here.  Take a deep breath, and know that God loves you.  So do we. 

TexasGal

I have no issues with your "path," as it is. As long as you had a pathology done on the mysterious lump, got the cancer diagnosis, and are now taking steps to determine what your options are, I think you're doing great.

I found a lump in my breast in 8/07 and went to my GP. I work contract and don't have insurance. He offered me a cash price to remove the lump in his office for $650. It took me 6 weeks to get that money together. In the meantime, he didn't think it was anything to worry about because 1) the lump was soft, not hard like a cancer, 2) the lump was smooth, not sharp like a cancer, 3) the lump could be shifted around in the breast, not stationary like cancer, and 4) it was probably fibrous tissue, a fibroadenoma. He took it out on 9/24/2007. On 10/1/2007, the first day of Breast Cancer Awareness month, I got the diagnosis.

Well, he was right. And wrong. At the center of the fibroadenoma was a 1.2 cm IDC.

I look at it this way - the fibroadenoma was hiding the cancer. There's no guarantee that the cancer would have shown up on a mammogram since it was embedded in this dense tissue. If I had gone for a needle biopsy, there's also no guarantee that the needle would have actually hit the cancer. So getting it removed (sort of an unintended lumpectomy) as I did turned out to be the best for me.

If I had done things the standard way, the way your sister's doctor says to do it, I might be in worse shape.  I think what you're doing will turn out to be just fine. There is more than one way to travel between two cities; maybe some of us end up taking the scenic route rather than the express . . .

(BTW - I ended up getting a reduced rate program at my county hospital for my treatment - they have a cancer center and a women's health center run by a fabulous female breast surgical specialist. I had a unilateral mastectomy, reconstruction/reduction of other breast, and hormone therapy - no chemo recommended. I am a 1 year survivor as of 1/18/2009)

All the best -

TexasGal

Mamie2

Thanks Bee and TexasGal. Sorry it took me so long to get back. One of my five sisters was here this week, and so kept me busy. I went shopping for some loose tops because my SNB incision is hurting, and this coming Thursday I'm going to be fitted with the mamosite balloon. I hope it's not too horrible. I'm happy you both sound good.

Mamie2

Update - Spent most of Feb healing frm surgery and failed MammoSite placement... Saw MOnco today and now have to decide on 1. rads and Arimidex  2. Chemo, Rads and Arimidex 3. TailorX and 4 Biophosphonate clinical trial. If I do a trial I would have to move back to the states on a more permanent basis. I'd have to rent my little island cottage. Wow. I hate that thought. Newbies reading this post....I am all about trying to get my docs to recognize the latest findings and to allow me to take advantage of them.... like the shortened Canadian rads - which are supposed to be as effective as the 6 wk protocol. I'll tell you the most important thing i learned from my doc today. I asked her why she was not more concerned about boosting my immune system than killing cancer cells and she said, because your immune system thinks that tumor or tumor cells are you! They don't recognize it as the enemy. So heck. Here I am thinking that it was all about the body working the way God had intended.... I have to sleep on this.

Oh. one other thing. no reconstruction to the segmental mastectomy allowed now... have to wait a year after radiation.