treatment decided before node biopsy?

shera

Hello all, this is my first post. 44 years old, no prior family history. Diagnosed Nov 28, 2011. Multicentric tumors, right side only, er/pr+, her2 neg.  MRI and PET scans to not indicate any node involvement --- but I'm told the sentinal node biopsy will confirm.  

I'm scheduled for the node biopsy and port insertion (back to back) on Wednesday. The course of action is set to be chemo first, then mastectomy, then radiation. Surgeon told me I would need chemo either way.  Oncologist mentioned that knowing the node involvement would give me options regarding chemo, but he didn't mention the oncotype dx test. I didn't ask what the options were -- just assumed he meant type of meds. Wish I did! I'm calling him back today. 

I'm confused about why we are deciding my treatment before knowing my node involvement. And why --- based on my pathologogy being er/pr+, her2neg --- didn't anyone ( 2 oncologists, and 1 BS surgeon so far) mention the oncotyps dx test. I have insurance. I could fit the criteria if the node biopsy comes back negative. 

I'm wondering if this is due to the multicentric nature of the tumors. Obviously I need to know more. Posting here to see if anyone has had any similar experiences, how you handled it, are you happy with outcomes. 

I'm leaning toward canceling the port insertion until after the sentinal node biopsy results. The convenience of doing them both at the same time is great and all... but if they come back negative, then I'll need a doctor to explain why they are convinced I need chemo when we have a text like the oncotype that could give me more information about how this cancer will react to chemo. 

I've only known about the cancer for 22 days.... so its been a marathon of trying to figure it all out.   

Thanks for any feedback,

Sheri 

wildrumara

Sheri - We have similar stories.  I am 43. I have two two tumors, close together, approximately 3 cm together,  IDC, no nodal involvement as per ultrasound, MRI, PET scan.  Oncotype score was 25.  At that point, my surgeon and oncologist recommmended  neoadjuvant chemotherapy for me.  I sort of wish we had checked the nodes before hand because it would have given us a better idea of what we are dealing with, but that is not part of my cancer center's protocol, I guess.  I didn't even know you could do that, until I found these boards three months ago.  Long story short, I have had 4/6 treatments of Taxotere/Cytoxan.  It's a long story, but basically my tumors are not shrinking much (according to my MO when she palpates my breast) but I am having an ultrasound today and appointment with surgeon.  My be stopping with four treatments.  Also, I never had a port because I was having neoadjuvant.  I have good veins and my MO felt I would do well and I have.  Since I haven't had surgery yet, they were able to use both arms, hands.  I have to run now but I could definitely share more info with you later but I wanted to give you the short version.  You should have the oncotype test.  That doesn't make sense to me.  You might not even need chemo???  

bgail84

Have the  Onco DX test. It can make a difference with treatment. I had SNB when I had surgery.Don't be rushed. My BS said once the cancer is found it is not a medical emergency. That does make sense--took several years for the cancer to grow. Carry your list of questions with you and it does help to have someone go with you--my daughters and husband have been. They can help remember what you should ask and what is said. I had paper and pen to write down my BS's responses and would call his nurse with questions if I needed to. Don't let them rush you when you talk to them either.  It is so much to dealpewith at first. Happy thoughts coming your way. 

SheChirple

You did not mention your tumor size, but I have seen a pattern that chemo is often recommended prior to, and ins pite of OncoDx and/or node biopsy, in order to shrink the tumor prior to surgery.

One advantage of pre-surgical chemo, aside from tumor shrinkage which results in wider margins post-op, is to gage the tumor's response to chemo.  You will know if the chemo has had an effect on your particular cancer.  Whereas, if you do chemo post tumor removal, there is nothing to gage and you just hope.

shera

Thank you for your responses... I had a nice long chat with my point-of-contact person, the breast health coordinator who speaks on behalf of the doctors, surgeon and oncologist who have made my treatment recommendations. 

I found out two important things:

One, that they give the oncotype test to a lot of women... so I know that the reason for not giving it to me isn't because they are clueless to it. 

Two, because my MRI revealed what she called a 'diffuse pattern involving much of the breast tissue' and the size of the largest tumor doesn't make me a candidate for the oncotype dx test. 

The plan is to use chemo to shrink the cancer cells to have better margins for surgery.So you're correct about tumor size being the reason.  Always comforting to hear the same thing from more than one source. 

Not the best news.... but the more I understand the treatment chosen for me... the more I can proceed with confidence!

I've had the sentinal node biopsy and port placement yesterday --- still sore now. Will be reading the chemo forums for tips --- as I start that part of this trip next week. 

Happy New Year! 

Shrek4

I can relate to you very well. My initial diagnosis was DCIS (per stereotactic biopsy), estimated size of tumor 7-10 cm, no node involvement. Recommended treatment was mastectomy+rads.

Mastectomy pathology showed DCIS, LCIS, IDC, ILC and cribriform with SN positive.So final treatment was surgery+chemo+ALND. I refused rads as all the other nodes were negative.

Now, did you DO a biopsy to show that you have invasive cancer? Because only in that case a neo-adjuvant chemo treatment is recommended. If they don't know what you have in there they can't recommend chemo. DCIS doesn't get chemo, only surgery and rads.

shera

Hello Day, 

Yes, my initial biopsy revealed invasive. But MRI scan revealed multicentric tumors and suggests that I have some DCIS in there as well... but they will treat this according to the IDC.  I wonder, if like you, they will find more types after mastectomy. 

I am hoping to have a skin sparing and NSM --- but figure I'll have plenty of time to research that after the chemo gets underway. 

It is crazy when the diagnosis expands on you!  

Shrek4

I know, right? Mine was multicentric and multifocal but they considered the whole area as a big tumor - in fact the biggest invasive tumor was only 4 mm - there were a lot of tiny invasive tumors in a sea of DCIS and LCIS.

The Grade is more important than the stage, by what my BS onc told me. With a Grade 2 it is efficient, but not as efficient as it is for a grade 3. Grade 1 usually doesn't get chemo (as per my BS onc) as the cells are too slow growin to be affected by chemo.

It would be great if you could have skin-sparing. Did they say anything about rads?

drwendy

I'm just the same as you.  I started with a 6 cm IDC solitary, no nodes per imaging but haven't had any node biopsy.  It shrank by almost a third with just the first chemo treatment.   They like to shrink it down with chemo first to make sure the margins are clean, and as SheChirple said, it lets them see from your mass whether the chemo is working on your particular tumor instead of just guessing.  I'm happy to be doing it this way.  My mastectomy will be in April after chemo is done, so I have lots of time to plan for it which is also helpful.  This newer way of treating (neoadjuvant) is becoming more and more popular for all these reasons.

My surgeon told me that breast cancer is a systemic disease, it's the rest of the body that we worry about since the breast is going away anyway.  Attacking all the cells everywhere with chemo right away (not waiting month due to surgeries) is the most aggressive way of treating any cells that could be lurking elsewhere in the body.  Good luck!

edwards750

I agree with bgail have the oncotype test. It was a godsend for me. It is expensive but my hubby's insurance paid for it...it was like 5k. They will work out something if insurance doesnt pay so dont let that be a determinating factor. Until I had the test which was recommended by my oncologist, I was set for chemo for treatment. The oncotype test showed my score to be 11 with a non-aggressive and smaller cancer than first thought so it does pay to have it done. Based on the test my oncologist recommended 33 rads treatments. They were a piece of cake compared to chemo. They have side effects of course - so does chemo. Oncologists are divided on some treatment plans but the ones who order the oncotype test pretty much stick to a treatment based on the results except if your score ends up in the intermediate stage. Low end - high end. While there are no guarantees I am encouraged with the results from the test and the fact I didnt have to have chemo..good luck.

shera

Thanks for all your replies.

DAY -- Rads unknown until after surgery. The first BS said yes to rads and neoadjuvent, the BS I chose said surgery first, all adjuvent decided after we see what we're dealing with. 

I ended up (and I'm still) waiting for surgery first. 10 more days!

According to my understanding -- surgery must be first to qualify to have an onocotype test. I'd like to see my score -- even though I'm 90% sure I will have chemo.

There are so many ways to look at treatment. There is a risk of waiting for surgery, so choosing chemo 1st hits the whole system faster.... but then you have to stop chemo and wait a month before getting rid of the initial tumor/area -- which is still inside, unless chemo got rid of all of it (my doc said it does sometimes).

There's also a risk waiting for surgery and then healing before beginning chemo ever hits the system --- but anything that gets away during this short wait for surgery period will get hit with chemo afterward.

SO... I based my decisions on my surgeon stating that I have a slow-growing non-aggressive type, and that I'm node negative.... so as long as all of this is accurate -- I'm more confortable with surgery first. I want to get the epicenter of my problem OUT and then complete the systematice treatment. 

10 more days. ugh.

 

 

7of9

I asked them not to biopsy the lymph node and surgeon agreed, if both the masses in my left breast came back positive (they did for IDC) that the node biopsy result doesnt matter/change the treatment. CT and bone scans clear, no cancer right breast so I'm doing neo-adjunct for 4 months (1 round done yesterday, 7 to go!) then she'll take the whole left breast even if tumors shrink/tiny/dissappear and I'm begging them to take the right one too. I'm only 40, not going through this crap again and this is a heck of a way to get a bood job! I guess the surgeon will pull nodes and have them checked during surgery and can keep pulling if she finds bad ones. I've heard where pre-chemo can kill that crap off even if it gets in the nodes so here's hoping!