to do or not to do sentinel node biopsy

mimi32

Originally in July my diagnoses was ADH. I sought a second opinion at a cancer hospital and it was the opinion of not one but 6 pathologist that my diagnosis was DCIS, stage 3, ER+ 4mm with clear margins

I have opted to have a BMX instead of rads and tamoxifen. My surgical oncologist is on the fence about whether to do a sentinel node biopsy because my margins were clear. She feels that the cancer is gone and at this point the BMX is "preventive". 

This make me nervous on so many levels. 1) If they do happen to find invasive cancer in my breasts after BMX I can't have this done. 2) I have read so many posts and threads about people having this and many more tests done. 3)The last time someone told me they were on the fence about my diagnosis it lead me to a second opinion and a cancer diagnosis. 

I know that she would do it if I asked but I don't want to over react because of common words causing fear. Do any of you have thoughts? Have you had a BMX and not had a sentinel node biopsy? Even if you haven't had a BMX has a sentinel node biopsy not been part of your testing and treatment plan? 

Annette47

I'm assuming you had an excisional biopsy with clean margins?   Honestly, a sentinel node biopsy does carry with it a life-long risk of lymphedema and the associated need to take precautions, so I would be inclined not to do it if I were you, but you have to make the choice that's right for you.     Can you ask for a MRI or further testing to better assess the chance of your having invasive cancer hidden in your breasts?   Do you have extremely dense breasts that would increase the risk of hidden tumors?

I did have an SNB, but only because I did have a tiny amount of invasive cancer found along with my very small amount of DCIS (all of it was removed by the stereotactic biopsy), but had the diagnosis been only DCIS, I would not have had one.   Of course, since I was having a lumpectomy, the possiblity of going back in if necessary was always there.

Beesie

Like Annette, I had an SNB because I had to - I had a small amount of invasive cancer that was found during my excisional biopsy.  I moved from my excisional biopsy to a MX because I had no clear margins anywhere around the two areas of DCIS, and I had over 7cm of high grade DCIS with comedonecrosis, i.e. a very large area of very aggressive DCIS - a prime breeding ground for invasive cancer.  So I had no choice about the MX, and no choice about the SNB.

If I'd had a choice, I would have had a lumpectomy (plus rads, of course) and I would have gladly passed on the SNB.  From a surgery and recovery standpoint, and when considering the after-effects and life-long implications, personally I believe that a lumpectomy (even with rads) with no SNB is a world apart from a MX (or BMX) with an SNB.

As Annette said, having an SNB leaves you with a life long risk of lymphedema.  Even if you never get lymphedema, many women take precautions all their lives in order to reduce their risk.  So an SNB is more than just removing some nodes; it presents a life-long risk and it may affect some of the things you do for the rest of your life.  Given that you have such a tiny area of DCIS, and given that you have clear margins, your risk of lymphedema from the SNB is possibly (probably?) higher than your risk that some invasive cancer might be found during your BMX.

In the end, you have to do what you feel most comfortable doing.  But make sure you do your homework before you make your decision.  When we are diagnosed with breast cancer, it's natural that we want to do whatever we can to treat the breast cancer and avoid another occurrence.  But every treatment - radiation, Tamoxifen, but also mastectomies and SNBs - comes with side effects and downsides and risks. We don't tend to pay too much attention to those aspects of the treatment when our focus is dealing with the breast cancer, but it's important to make sure that the side effects and downsides from the treatments you choose aren't greater than the risks from the breast cancer itself.

beacon800

you have a very, very tiny amount of DCIS.  That is good news for a total recovery.  Maybe you can get an MRI before your surgery and see if there is anything the MRI picks up.  If so biopsy that.  If that is benign, you might be safe to forego the sentinel node removal.

I did exactly this sequence when high grade LCIS was found.  I had bilateral MX with no sentinel nodes done.  It was a harrowing decision (the sentinel node, not the bmx), I was very concerned about every possibility but in the end this ended up being the perfect path to take.

It's a bit time consuming to do all this and your doc has to go along with it, but I found it worthwhile.

mimi32

Thank you for your replies. It helps to read others opinions that have been faced with the same fears and situations. My family and friends are all so supportive but it's hard sometimes because they've not been here. Half the time I don't even know what I"m doing and that's when I find myself searching these boards for answers.

LAstar

You can talk to your surgeon about using the dye to locate the sentinel nodes during the MX then mark them with titanium markers. If invasive cells are found, the nodes can be removed in a subsequent procedure. This is what Angelina Jolie's surgeon did, and another woman on this board asked to her surgeon to do it and he was willing. I've had early signs of lymphedema with only two nodes taken. It's a lifetime of vigilance, and it's hard to protect your arms from bug bites, sun burns, accidental cuts, etc. Even a hang nail is painful. Why deal with this if it is truly DCIS? Best of luck to you!

Ariom

I agree with LAstar. I wish I had known about the possibility of marking for the Sentinel Node when I had my Mx.

My Surgeon told me that it would be "remiss" of him not to do a SNB, when he would have access to the nodes, during that Mx surgery. It was a precaution that I agreed to because I wasn't willing to risk having to have a full clearance if any invasive component was found in the final pathology.

I haven't had any LE symptoms, but as LAstar says the constant vigilance is tedious. I am a bit of a klutz! especially in the garden, and love to be outside. I live in a coastal town in Australia, strong sun and bugs, so I will need to get used to it!

All the best with your decision!