sentinel node biopsy for prophylactic double mastectomy

tangerinequeen222

Hi, I just learned that I have the BRCA2 mutation. I'm 42 and am planning on having a PBM. My surgeon is recommending a sentinel node biopsy as part of the surgery - as a precaution - because an MRI sometimes misses things (it's not 100% the way the sentinel node biopsy is). I'm scared about two things: 1. the rest of lymphedema and 2. the idea of putting a radioactive injection into me when I don't have cancer (does my body need to process/metabolize that radiation). Does anyone have any insight? My surgeon said that 6% of women who do a PBM end of up having cancer and that if she were to find cancer in the breast tissue and not have done the biopsy, she'd have to go back in and that would put me more at risk for lymphedema. I'm wondering how many women opt to do this biopsy. Maybe it's because of my age/she's being overly cautious? Any advice is much appreciated!

farmerlucy

I had a PBM and opted not to do the SNB. I was in the minority and an invasive was found in the surgery. My BS was able to do a SNB after the fact but they are not successful for all women. Angelina Jolie had the dye put in but no SNB. Search Pink Lotus and SNB and there is a description of herprocess. Another lady on these boards did the dye and her BS marked the SN with a titanium marker so he could go back in and get it if necessary. Best of luck with your surgery.

farmerlucy

https://community.breastcancer.org/forum/47/topic/...

Here is a link to a thread discussing this very thing. I hope it helps!

tangerinequeen222

Thank you! I love the Pink Lotus idea but my surgeon says that going in, after the fact, significantly raises the risk of infection, so she won't do it:( I'm so torn and confused about this.

farmerlucy

Interesting! The three weeks I had to wait to heal before they could go back in were the longest of my life. I am grateful that I have no long lasting effects from my SNB except the scar is a bit tight and itchy sometimes. Sorry about the brca2 but glad you can be proactive.

tangerinequeen222

Did you ever have an issue with lymphedema? Thank you so much for all your help!!!

farmerlucy

No issues at all for me.

DiveCat

SNB with PBMX is still a bit controversial but this risk of finding a malignancy does have some women weighing this decision. I rarely see women in the high risk community actually get SNB with PBMX though these days, but they do sometimes get the dye, and/or clips as farmerlucy described.

I had a PBMX with no SNB, by the way. It is not routine protocol here with PBMX, both BSs I saw actually recommended against it for PBMX with no suspicious scans or other pathology, and I figured my risk was low enough of finding anything (based on recent scans, etc) and outweighed risk of SNB. My pathology came back with some hormonal changes, but nothing of concern.

I am very active, young, have seen how my mother suffers from LE, and wanted to reduce risk of LE as much as possible....can't be zero risk as it can happen even with no node removal.

It is up to you, but MRIs are known more for being overly sensitive than missing things (higher rate of false positives than false negatives). I mean, I am not you, but I would consider seeking a second opinion and/or seeing if they recommend for or against SNB, or would be willing to put in dye/clips at the time and go back only if needed. While risk of LE is lower with SNB than ALND, it is still higher than SNB at all and would want a very compelling reason to get it done...like a suspicious MRI or other known stuff going on in my breasts.

Here are some on topicpublished studies/abstracts on this issue that may be of interest:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC319566...

http://www.journalacs.org/article/S1072-7515%2809%...

http://www.clinical-breast-cancer.com/article/S152...

tangerinequeen222

Thanks, DiveCat! Can I ask, how old were you when you got your PBM? Also, have you heard of any other breast surgeons wanting to do SNB's as a precaution? My doctor says MRI's miss things and that's why. She also said the blue dye can cause necrosis of the skin and stressed the risk of infection if she needs to go back. She's one of the top surgeons in her field, where I live, but I'm so torn.

lmdi

Hi tangerinequeen,

I had a PBX in November with no LNB. I asked the surgeon's nurse if it was something they would need to do, and she told me that if I had a tumor, they would inject the dye into it and follow it to the nodes. Without a tumor to inject, she said they would not biopsy the nodes.

I would agree with the others who suggest getting a second opinion. Every case is different, and there may be reasons why it would be advisable to do. Take your time, gather information and make the decision that is best for you.

DiveCat

Hi tangerine,

I was 34.

Yes, I have heard of some women on FORCE who have been encouraged by their surgeons to have SNB, and I have come across women who pushed for the SNB, and their surgeon did agree to it, but it seems to be pretty uncommon even amongst those BRCA+ members on the FORCE forcums having PBMXs to have an SNB unless their imaging or a biopsy had any concerns. I am not sure if you have come across FORCE yet, but it is specific to women at hereditary risk, and many members there have had PBMXs. FORCE has this to say on SNB's in their articles:

Sentinel node biopsy is a procedure to determine whether breast cancer cells have spread beyond the breast tissue. By injecting a blue dye or radioactive tracer (or both) into the breast, the surgeon can follow the lymph system from the tumor to the sentinel node, the first underarm node most likely to contain cancer cells if they have spread beyond the breast. Sentinel node biopsies are performed when invasive breast cancer is diagnosed. If the sentinel node is found to be clear of cancerous cells, a woman is spared the more conventional "axillary dissection," a more invasive surgery to remove many of the underarm lymph nodes. Axillary dissection can cause "lymphedema," an uncomfortable, long-term complication caused by fluid build-up in the arm.

Prophylactic mastectomy does not typically include either sentinel node biopsy or axillary dissection because the woman is assumed to be free of breast cancer. However, because breast cancer is found in a small percentage of high-risk women during prophylactic mastectomy, some breast surgeons perform sentinel node biopsy as a precautionary measure, to spare women the more extensive axillary dissection if cancer is found. If invasive breast cancer is found during prophylactic mastectomy, the surgeon samples underarm lymph nodes to see if the disease has spread, and to determine appropriate treatment.

One small study looked at sentinel node biopsy in 143 women who had prophylactic mastectomies. In this study, four women had invasive cancer found at the time of the prophylactic mastectomy: two had positive sentinel nodes, while two had negative sentinel nodes. The two women who had a negative sentinel node biopsy at the time of their mastectomy were able to avoid further axillary dissection. Women considering prophylactic mastectomy should discuss the benefits, risks and limitations of sentinel node biopsy with their surgical team.

http://www.facingourrisk.org/understanding-brca-an...

ANY imaging can miss something, but MRI's are known to be very, very sensitive, like I said, far higher rate of false positives (in that they pick up many non-cancerous changes and increase biopsies, stress, and so on) than false negatives. So yes, she is correct that "they can miss things" but I think she is overplaying how much MRIs miss things...false negatives are not common with MRIs. If you were going in to this with only a mammogram, then I might be inclined to understand more her argument that "they can miss things" as mammograms have a high rate of false negatives particularly on younger, dense breast tissue but MRIs are known to have the opposite problem which is part of why they are not used as routine imaging in non-high risk women.

"The overall sensitivity of MRI for the known cancers was 96.8% (213/220); for invasive cancer, 98.3% (176/179); and for ductal carcinoma in situ, 90.2% (37/41)."

"In a population of 220 sequentially diagnosed breast cancer lesions, we found seven (3.2%) MRI-occult cancers, fewer than seen in other published studies. Small tumor size and diffuse parenchymal enhancement were the principal reasons for these false-negative results. Although the overall sensitivity of cancer detection was high (96.8%), it should be emphasized that a negative MRI should not influence the management of a lesion that appears to be of concern on physical examination or on other imaging techniques."

http://www.ncbi.nlm.nih.gov/pubmed/20489112

Your real concern would be with the risk of an invasive cancer, for which the above shows MRIs have a 98.3% sensitivity.

So is she not using dye if she does the SNB at the time of the PMBX? Just the radioactive stuff? I think it is important to keep in mind that a SNB may mean removal of more than one node (many are mislead by the name and believe it means only one node is removed), which increases risk of LE, inceases your recovery time, and so on.

Sentinel lymph node biopsy. When cancer spreads through the lymphatic system, the lymph node or group of lymph nodes the cancer reaches first is called the sentinel node. In breast cancer, these are usually the lymph nodes under the arms called the axillary lymph nodes. In a sentinel lymph node biopsy, often shortened to sentinel node biopsy, or SNB, one to three or more of the axillary lymph nodes are removed and examined for signs of cancer. Usually, if there is no cancer in these sentinel nodes it means the remaining axillary lymph nodes will not have cancer.

To locate the sentinel node, the surgeon injects a harmless, radioactive substance and/or a dye into the breast near the tumor. Sometimes, the injection is given under the areola, which is the darker area that surrounds the nipple. Then, the surgeon makes an incision under the arm and either follows the radioactive signal or finds the lymph nodes that are stained from the dye and removes them. A doctor called a pathologist will carefully examine the sentinel node(s) for signs of cancer. A pathologist specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

http://www.cancer.net/research-and-advocacy/asco-c...

I don't know, like I said, it is entirely up to you. It is very possible you could have an SNB and have NO problems or issues at all, and indeed the risk of LE from SNB is very small compared to ALND, if you required an ALND, but then again it is greater than if you had no nodes removed at all. I know I personally would always be concerned about LE after, and be worried about minimizing risk, so for me the small risk of finding an invasive cancer based on studies after clear MRI imaging would just not outweigh the potential risks of an SNB, but you may not have that personality type!

tangerinequeen222

Thank you so much of this info, DiveCat. Seriously, you have no idea how grateful I am for your time. No, she is not planning on using the blue dye. She doesn't like it, says it can cause necrosis and she said it can stain the skin for months. I really wish she'd do what they do at Pink Lotus, but, again, she's against that idea for a couple of reasons. I really like her - if I didn't I'd just change - but I'm not really in agreement with her on this. I'm 42, I feel like a ticking time bomb. I just found out my family history - was actually kind of blindsided by it, and most of the women were younger than me at first diagnosis. So...it's tough. But you're really making me think hard about getting an MRI prior to the surgery and then weigh the choice at that point. I've never had an MRI, by the way. Since I just recently learned this info about my family and got tested for the gene, I was never considered "high risk." I have had 3-D mammograms for a few years, however, as well as ultrasounds, because of my fibrocystic breasts. Anyway, thank you so much again!!!

Ashtore1

I have been diagnosed braca 1, triple negative invasive aggressive left breast. After  a pet scan I was told that there was a concern with the sentinel node. Then I was sent for a ultra sound and the tech couldn't find the node she was looking for. The surgeon called today and is recommending Bilateral mastectomy with a delayed reconstruction and biopsy of the node. I know she is looking out for my best interest but I am scared. is this the right thing to do to avoid any further breast cancer?

muska

Speaking of MRI sensitivity mine missed positive nodes before surgery. It did confirm invasive cancer but did not show anything in the nodes.

cookiegal

ummmm.....I probably have no business sticking my nose in here, but honestly (for me) the lymphedema is worse than the cancer.

Plus I thought that now a lot of people with cancer have only a SNB figuring that chemo and rads will take care of any nodes.

I can not imagine putting someone without cancer at risk for LE.

For me it has been a huge, life changing deal.

Surgeons are famous for minimizing lymphedema risk.

If heaven forbid you have cancer deal with the nodes then. If you have a weak lymph system a SNB is plenty to get LE.

tangerinequeen222

Hi, it's me again, the one who questioned having the SNB with my PBM. Well, I had the MRI figuring that would make my decision - if it came out clean, I'd forego the SNB. Well, I got the call with the results. There were two spots on my right breast. The radiology team recommended biopsy but being so close to my scheduled surgery, they don't want to for fear of hematoma or infection that could complicate the reconstructive end of the surgery. They also think the two spots look like fibroids, rather than cancer (I already have a biopsied fibroid in that same breast). I asked her about the left breast and she said it was very "spotty" but nothing was flagged. I asked her what that meant and she said because my breasts are "so dense," they're not as clear-cut to read, even on MRI. She said the spotty nature of them could be perfectly normal for me, but if I weren't having the surgery she'd want another MRI in a few months. So, in the end, she still recommends SNB on both sides - for sure the right because of the two spots, and also the left because of the density. Any thoughts are so very much appreciated! Thanks in advance.

farmerlucy

Sounds like a good plan. Crossing my fingers and toes that those spot are nothing. When is surgery?

tangerinequeen222

Thank you! Surgery is scheduled for the first week of May.

farmerlucy

OK - I'll be here waiting for your good news! Honestly the thought of surgery was much worse than the actuality of it. I never had any issues with losing my breasts and I think it is because I decided to do it and it wasn't decided for me. You got this tangerinequeen! Hugs!

tangerinequeen222

Thank you! Honestly, I have my good and bad days. Some days, like today, I can't believe this is my life and that I have to make these choices. Other days, I know I should be so grateful because so many don't have the choice. I know I'm not alone. But sometimes it feels that way. I'm grateful to have found this site.

DiveCat

Like farmerlucy, I made the choice to have my surgery rather than have it made for me, and so I really did not have any issues with losing my breasts. Even when they looked kind of scary after from the trauma of surgery, I don't recall ever feeling sad, or regretful, or upset. I was more curious about the process than anything else, as well as incredibly relieved...I felt like a weight had been lifted off my shoulders. Of course, feeling sad and so on is also totally legitimate, and I don't mean to discount yours or anyone else's feelings; I do personally know women who have had a much more difficult time losing their breasts, and in large part due to the circumstances, but I just report my experience as it really was much better and easier than I had expected.

As farmerlucy said, you "got this". Your surgery date will be here and gone before you know it, and you will be on the path to recovery. Have you decided whether or not you are going to have reconstruction, and if yes what type? I really recommend picking up the Breast Reconstruction Guidebook by Kathy Steligo if you are still deciding on whether or not to have recon, and between types, and heck, even if you HAVE decided as it is still informative for you and anyone who might be helping you out before or after surgery. My husband read the parts about implants and such to be informed about my own surgery (I had direct to implant).

tangerinequeen222

I am having reconstruction, but I was told that I'm not a good candidate for direct and will need expanders first, mostly because I nursed two children and so now my breasts saggy:( They're recommending the "gummy bear" implants for the exchange. Are you familiar with those? I haven't thought too much about that part of the process yet, though I know I probably should and will def. check out that book. I've been too busy thinking about the fact that I have this gene, that I'm having my breasts removed (my first surgery ever), that I'll have to make up some excuse for the kids (they need to know that I'm having surgery, but I don't want them to know about the gene right now). My mind is consumed with the outcome of tests, and then I also have my ovaries to tend to after this. Some days it's overwhelming. I've always been an optimistic kind of person - the kind of person others go to when they have issues - so this whole process has really uncovered another side to me that I didn't know existed. I need to get over this hump and feel empowered again. I guess it will come in time. Thank you, thank you, thank you for your kindness and encouragement. It really makes a difference.

DiveCat

tangerinequeen,

I actually have 11 day old gummies in now! I had my smooth rounds changed out for gummies on March 12

I am really, really liking them so far. Nice shape, they feel good, less rippling than my smooth rounds had (I still don't want to say "no rippling" as I am not sure that will be the case)!

There is a gummy thread, and you will also want to look at Breast Implant Sizing 101 once you have TEs in and discuss with Whippetmom what implant would get you the outcome you desire.

My BMX was also my first surgery ever. It was not as bad as I was expecting, though I did find out the hard way I do get bad PONV (post-operative nausea and vomiting) despite being given anti-nausea drugs during surgery. The second time around they did something different and I had no issues