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Topic: Mastectomy - anyone not have Sentinel Node Biopsy?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Aug 6, 2019 09:26AM

HopeWins wrote:

I'm scheduled for a double mastectomy August 22nd. I have DCIS <1cm, dense breasts, limited family history, no (known) gene mutations. There was no microinvasion in the pathology and margins are clean, but one was close - <1mm. I'm opting for a bmx. BS says he will do SNB in the cancer breast, but the likelihood that it comes back with cancer is extremely unlikely. My first BS wasn't even going to touch them. I really respect my new BS but I don't know if I want to agree to the SNB.

I'm SO scared of developing lymphedema. I'm 47 now, but when I was around 40 I would sometimes get swollen ankles for a couple days when I would fly. I don't know that it makes me prone to lymphedema but I'm very nervous about this. I don't have other risk factors - no radiation, I'm not overweight, etc. but I don't want them to touch my nodes!

Has anyone else refused SNB?

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Aug 6, 2019 09:56AM Ingerp wrote:

I did not have any lymph nodes biopsied when I had DCIS. I did when I had IDC (just one--no LE problems at all).

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 6, 2019 11:34AM 1LifetoLive wrote:

By BS did not recommend that I have lymph nodes biopsied. He did a lumpectomy, found DCIS <1 cm. He got 10 mm margins. I'm planning radiation and probably Tamoxifen.

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Aug 6, 2019 12:05PM Beesie wrote:

HopeWins, your question was specific to having a MX for DCIS, and that is an important distinction.

Lumpectomies and mastectomies are very different when it comes to doing a sentinel node biopsy. An SNB requires that injections be made into the breast. After a lumpectomy, obviously the breast still remains, so an SNB can be done afterwards. With a MX, the breast is removed, so if an SNB is to be done, then it has to be done before or at the same time as the MX.

For someone with DCIS, this is a significant difference. A SNB is not indicted when the diagnosis from the biopsy is thought to be pure DCIS. But should some invasive cancer be found mixed in with the DCIS in the final surgical pathology, then it becomes necessary to check the nodes. For those who had a lumpectomy, this can easily be done. For those who had a MX, not so much. This is why it is generally recommended that women who are having a MX for DCIS do have an SNB. The exceptions tends to be if the area of DCIS is very small and low grade, but even then, an SNB is often recommended if the patient opts to have a MX. Certainly an SNB is highly recommended if the DCIS appears to be widespread and high grade, since the risk of finding an invasive component is greater under these conditions.

One option - which I don't think is done by many facilities - is to do the SNB injection into the breast at the time of the MX surgery, but not remove any nodes. Then if the breast pathology is available quickly, the patient can be taken back into surgery for the SNB. I don't know the window of time in which the nodes will retain the injection. Certainly it's at least 24 hours (some facilities choose to do SNB injections the day before operating) but I don't think much longer than 48 hours. This methodology was invented by Pink Lotus when they did the PBMX on Angelina Jolie, so you might find out more if you check their website.

As for the risk of lymphedema from an SNB, it's a long time since I dug around in the data, but my recollection is that the risk is in the range of 5% - 10%.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 6, 2019 01:32PM HopeWins wrote:

Thank you Beesie. And yes, the BS explained why they do this - they can't go back. That being said, I've already had a lumpectomy with full pathology back as DCIS - one close margin, grade 2 fyi. There are some other scattered microcalcifications but he's not concerned/doesn't expect to find cancer in any other area of the breast.

I just had an MRI yesterday because the BS wants to make sure there's nothing lurking in the "healthy" breast so he can make a decision about SNB on that side or not. Once those results are in, I think I'm going to circle back with him to discuss again. 5-10% does not give me peace of mind. I am notorious for falling into the minority with those stats!

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Aug 6, 2019 01:53PM Moderators wrote:

Hi HopeWins, here is an article that may be helpful: How Many Lymph Nodes Are Removed? as well as this: Sentinel Lymph Node Dissection.

Thanks, for the comprehensive answers here!

1LifetoLive, we welcome you warmly, and thank you for sharing your experience.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 6, 2019 02:09PM Beesie wrote:

HopeWins, it sounds like you have a good plan. Since you've already had the lumpectomy and nothing more than DCIS was found, the risk of finding an invasive cancer mixed in with the DCIS has already pretty much been addressed. While of course anything can happen, an MRI would provide further assurance. Yup, if I was in your shoes, I'd be asking the same questions and leaning the same way.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 7, 2019 11:21AM LAstar wrote:

Hi, HopeWins -- I developed lymphedema with only 2 nodes removed initially. It's an issue I'll have to deal with the rest of my life and very annoying. I developed cellulitis last year after a trifecta of sunburn, lifting something heavy and swimming in a river. A quick round of antibiotics took care of it but it is a concerning development. I wish I'd known about sentinel node marking before my BMX.

Make sure your MRI is done at the appropriate time in your menstrual cycle or you could have a higher risk of false positive results on the MRI. This happened to me and influenced my decision to have BMX. Nothing was found in the contralateral breast.

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/5/2012 Lumpectomy: Left Surgery 5/3/2012 Lumpectomy: Left Surgery 6/18/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/4/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/25/2015 Reconstruction (left): DIEP flap
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Aug 7, 2019 12:36PM Ingerp wrote:

Hope--I know you know this but wanted to reiterate that it's your decision. My BS gave me the option when I had DCIS. I asked what the probability was of finding something uglier, and he also said (like with the IDC) that based on US he didn't expect there to be any lymph node involvement. I told him I'd just as soon he not take the lymph node.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 7, 2019 02:01PM HopeWins wrote:

Thank you all. I guess I'm concerned that the PS may say he won't do reconstruction if I don't do the SNB. I'm having DIEP flap immediate reconstruction. I guess I'll just see what he says.

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Aug 7, 2019 03:36PM exbrnxgrl wrote:

ingerp,

Please read beesie’s Post earlier in the thread. The op is having a mastectomy, not a lumpectomy. After a lumpectomy you can go back for a SNB if needed, with mastectomy you cannot go back after the surgery and do a SNB. You can’t really compare the two, for this reason

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 7, 2019 05:40PM Ingerp wrote:

Oy--sorry! I forget so much these days!!

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 14, 2019 02:58PM HopeWins wrote:

Just got MRI results and it shows a shadow on a lymph node so I'm doing the SNB. Dr thinks it could be inflammatory from lumpectomy, but I'm not taking any chances.

Can anyone explain the dye injection procedure? I have to have that done in the morning before surgery and am very nervous about it. Is it sonogram or mammogram assisted? My tumor site is deep. Do they have to inject into that location? Is there any anesthetic used? I might need a xanax for this... both my stereotactic biopsy and wire placement procedures were really painful and traumatic. I'm only 4w out from lumpectomy and the breast is still painful at times.

I'm so upset they can't do it after I'm under general anesthesia. They said the dye needs time to track to the nodes. Not sure if this is all standard procedure or not.

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Aug 14, 2019 08:07PM exbrnxgrl wrote:

Hope,

It seems as if the procedures prior to an SNB can be somewhat different from place to place. My surgery was scheduled for very early in the morning, so I had the injection into the nipple the evening before. The blue dye injection took place while I was under general anesthesia. I bet you’ll have responses where these things went differently. All the best

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

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