Did any one opt of the Lymph node biopsy?

Lee_S 

 BLinthedesert

Can a person refuse to authorize lymph node removal for a DCIS mastectomy?  I would fight it too. 

Lee, yes you can refuse to have an SNB even if you are having a mastectomy.  I can actually think of quite a few women who've been through this board who've had mastectomies for DCIS and who have not had any lymph nodes removed.  If the DCIS is lower grade, if there is no comedonecrosis, if the area of DCIS is small.... all of those factors suggest that the risk of finding invasive cancer is low and so it's relatively low risk to pass on having the SNB.

The one thing to understand of course is that if the odds don't go in your favor and you are found to have invasive cancer, then an SNB may be impossible to do once the mastectomy has already been done.  I recall one woman on the board who did have an SNB after a mastectomy - I believe the injection of dye and/or isotopes was made into her arm.  Usually though a surgeon will have to do an axillary dissection instead of an SNB, removing more nodes.  But depending on how the nodes look, the surgeon doesn't have to remove more than the first level of nodes, and possibly not even the entire first level. 

"I wonder if the the treatment would be the same if they found anything in the breast tissue, as it would if it were in the lymph nodes."

Do you mean would the treatment differ if you had a small amount of invasive cancer in your breast tissue vs. in a lymph node?   It depends on the amount of IDC that's found in the breast, and if it's only one node.  A tiny amount of IDC in the breast usually doesn't change the treatment plan from what it is for DCIS alone. I had a microinvasion of IDC and my treatment plan was identical to what it would have been if I'd had pure DCIS. Similarly, a tiny amount of nodal involvement in just one node usually wouldn't lead to chemo.  In both cases, if the cancer is ER+, there would be a recommendation that you take Tamoxifen, and this recommendation would be really emphasized if there was any nodal involvement. But, if more than one node is affected, at that point the likelihood of a chemo recommendation is much higher, even if the amount of IDC found in the breast is tiny. 

On the other hand, if the IDC found in the breast is HER2+, even small amounts (3mm, for example) sometimes lead to the recommendation for chemo and Herceptin. And for tumors that are 5mm+, sometimes chemo is recommended if the IDC is triple negative (ER-/PR-/HER2-). So in those cases the presence of nodal involvement wouldn't really change things.  

And then there is the Oncotype test, which could indicate a high recurrence risk / strong benefit from chemo even for a small tumor, or could indicate a lower risk / less need for chemo for a larger tumor.

So the answer is, "it all depends".

As for the likelihood of nodal involvement after an initial biopsy shows DCIS, generally about 20% of diagnoses change from pure DCIS to DCIS & IDC once the final pathology result is in.  The 20% is an average of all diagnoses of DCIS - someone like me, with 7cm of high grade DCIS with comedonecrosis, probably had a much higher risk whereas someone who has 0.5cm of grade 1 DCIS probably has only a very small risk.  As I mentioned above, I did have a microinvasion of IDC.  With just that 1mm amount of IDC, my surgeon told me that there was a 10% chance that I'd have nodal involvement.  I've researched that since then and have found studies that confirm this figure.  So that means that we can expect approx. 2% (10% of 20%) of women who are initially diagnosed with DCIS from a needle biopsy to end up with a diagnosis that includes IDC and nodal involvement.

Finally, back to the question as to whether an SNB is always done with a MX for DCIS. When I joined the board 6 1/2 years ago, the need for an SNB with a MX for DCIS was debated regularly, and there were many women who did not have an SNB done. These days it seems to be a given that anyone having a MX for DCIS will have an SNB.  I am not aware of any research that suggests that it's any more necessary than it was 6 years ago so I'm not sure why the treatment standard has changed.  The NCCN treatment guidelines are actually quite confusing on the subject, saying "Lymph node surgery is generally not done with DCIS. However, the pathologist may find that you have invasive cancer and a sentinel node biopsy would not be possible after some surgeries.  Thus, having a lymph node biopsy before such surgeries may help decide which treatment you need."  http://www.nccn.com/files/cancer-guidelines/breast/index.html#/62/ 

*edited for typo

I had a lumpectomy for what by all accounts was ~3 cm of grade 2 dcis (found when a routine mammogram in my early 40s showed a micro-calc. cluster and later confirmed to be grade 2 dcis from a stereo. biopsy). Did have ultrasound and MRI prior to surgery, no trace of idc, additional dcis, or anything to worry about (besides the 3 cm of dcis) suspected.

Final pathology report from lumpectomy reveals small (1.75 mm) of grade 2 idc. So back under general and the knife I went for a SNB exactly 14 days after my lumpectomy. Do I have regrets that I didn't opt for the SNB while I was having the lumpectomy, thus sparing myself a second surgery (I'd never had general or any surgery before or after this, believe me, I did not want it)? Absolutely not, the recovery from the SNB was actually worse than the lumpectomy and the fear of lymphodema is forever hovering in the background.

But, had I had a mastectomy (which was under strong consideration while awaiting my BRCA1/2 test results), and had opted for no SNB at the time, that idc detection would likely have resulted in the far more extensive axillary node surgery. I most certainly appreciate what Beesie wrote about some women having SNB post-mastectomy, that is a welcomed piece of news, but no guarantees and I fear I would have gone down the more extensive lymph node removal path.

My idc detection came out of absolutely the blue! Zero thought of it, actually I was more worried that I'd have a dirty margin(s). It didn't change my ultimate course of treatment (rads, no chemo, opted out of tamoxifen) but things delayed until I had the SNB results, which thankfully (!) were fine. 

Wishing you the best. 

Lee,

Glad you are finding them helpful. When I was diagnosed nearly 3 years ago, I found the posts from Beesie and others helped me greatly to make the best educated decisions I could, as well as a place to go to chat with others like me.

Although we share membership in the bc club we never asked to be in, our decisions are each quite personal, because they are based on a mix of our specific medical facts and our risk aversion level (very important to understand yours!). Yes, I did decline tamox. My motto is No Regrets, and I have never regretted that decision, but I respect those that chose differently. Please keep in mind that I did first have a frank talk with an onc. about the pros and cons and for my medical circumstances, the very minor benefit didn't outweigh the downside (I'm a statistician, I like data). I am fortunate to have excellent medical professionals who from the very beginning have treated me with respect and provided me with the information in as best an unemotional way as possible. When I was concerned about rads, particularly because they'd be on my left-side, I learned from these boards about having rads in the prone (face down) position, considered far safer for the heart and lungs, and I discussed that option with my rad onc and she allowed me to be treated that way. I also explained my aversion to having permanent tattoo markings (standard appaarently with most rad treatments), no matter how small I did not want that, and again my team was wonderfully kind and respectful, and I have none.

I'm still pre-menopausal and one of the few I know who is looking forward to the good ol' normal hot flashes and normal biological aging that goes with it, and I'm happy I won't be attributing any of that to a potentially toxic pill.

Christie, do you have DCIS or invasive cancer?

For many of us, the removal of the lymph nodes is the most painful part of the surgery and recovery, with pain and numbness in the underarm and arm area lingering on for quite some time.  I had numbness down to the elbow for about 3 months and numbness in my underarm area of about 6 months.  And I had shooting pains down my arm as the nerves in my underarm area regenerated. Definitely for me the removal of lymph nodes was worse than the surgery to my breast, and I had a mastectomy with immediate reconstruction.