Micromet in Sentinal Node: Anyone else?

Anonymous

In July, I had a unilateral mastectomy. My surgeon initially reported that my sentinal nodes were cancer-free, so no further lymph nodes were removec. A few days later he called to say that with further pathological examination, a micrometastis (.8 mm) was found innone node. I have had two rounds of TC chemo. Radiation is not recommended but now my oncologist wants me consider a second surgery for axilkary lymph node dissection. Has anyone else faced this situation? What did you do?

shoppygirl

Hi

I had a very similar situation to you in which they initially told me that all was clear and then they found a micro met under 2 mm in the lymph node. They removed 4 during surgery. My oncologist told me that they did not need to remove anymore. I did 6 rounds of TC and 16 rounds if rads. Even though I had a bmx I still decided to do the rads just for that extra piece of insurance.

Rose_d

That's a tough one! I had 2.5mm in my sentinel node. But they found it during my BMX so immediately did the full dissection. The other 17 nodes were negative. I know I can't change anything and we did what we had to do, but hindsight makes me wish I hadn't had the 17 additional nodes removed. I'm really worried about lymphedema and generally my right side has more issues than the side that didn't have the nodes removed.

I feel like the chances that anything else will be found with only .8mm in the node are low. And, if given the chance you should minimize the number of nodes removed.

I guess I would want to better understand whether your doctors' advice is based on experience/statistics about the likelihood of further metatasis or if it's simply 'what you do when one node is positive'.

I would want to get a few opinions on this one and think you are justified in questioning what you should do!

Rose

curveball

I also had a mastectomy, and there was a 1-mm micromet in my sentinel node. My doctor did not suggest either additional surgery or radiation, but if he had I would have considered it.

Anonymous

Thank you Rose! I too am worried about lymphodema. Before chemo, my oncologist said there was a 2-3% chance of additional metastases in other lymph nodes, but now he has recalculated and thinks there is a 9% chance. We choose a non-adriamyacin chemo regimen because he felt this would be just as effective at removing any rogue cancer cells with the side effects. The radiation oncologist said radiation to the lymph nodes would only improve my odds of survival by 1%, so he didn't think radiation was worth the risks. I think my oncologist just wants to do everything to prevent a recurrance, but I can't find any research that shows the benefit of ALND in this situation!

It gives me hope that all your other nodes were negative! Have you had trouble with lymphodema?

SpecialK

I had a BMX with bi-lat SNB. In the operating room both SNBs were declared clear, and no pre-surgical imaging (mammo/US/MRI) showed any problems with nodes, and there was nothing palpable on exam. Post-op pathology on the cancer-side SNB had 20 IST (isolated tumor cells), so not even really a micromet. I am Her2+ so my progressive BS, who was one of the pioneers of SNB and participated in the early trials for it, recommended ALND. My MO concurred and wanted the surgery done prior to chemo/Herceptin. I initially was opposed but they were both insistent. I had 11 additional nodes removed from that side and further up the chain was a 6mm positive node. This is an unusual situation, but leaving that node in place would be akin to doing chemo and rads on a stage 1 breast tumor but never removing it surgically. I do have issues with lymphedema, but I would rather have that than cancer. My BS maintains a database of all of the patients he has treated over the last 25 years - he was the department head at the only NCI designated cancer center in FL, and his opinion was that I had a 60% chance of PCR of that node with treatment but no removal. I rest easier at night knowing I removed the nodes, a micromet may not be indicative of what else is lurking there. This decision is all about your risk tolerance - it is a roll of the dice, remove the nodes and risk lymphedema, leave the nodes and risk that you have more cancer there. It is a hard decision - wishing you the best.

liefie

I had a UMX with SNB. Four nodes were removed, and a micromet of .6 mm was found in one node. I did four rounds of TC and had 25 radiations. ALND was never recommended to me.

Timbuktu

I was declared clean in the operating room. Then, just to be sure, we sent a slide to Sloan. They found a micromet. 100 cells.

They communicated back and forth with the original pathologists, who were still uncertain but finally agreed with Sloan. Apparently

it's a judgment call. Anyway, Sloan said they do not go back in to remove lymph nodes. I don't know why. They did not recommend radiation but did recommend CMF chemo, chemo

"lite" they called it, just as a precaution. I was estrogen positive so I'm on Arrimidex now. It is good to hear that all of your other nodes were

clear. I don't really understand why they wouldn't take mine out but I'm hoping for the best. None of this is cut and dried, apparently. Good luck!

gentianviolet

Running -

I had a positive node (second sentinel node) and the surgeon removed 13 more, nothing was unusual on the MRI. I have no measurement on it as I was told it was seen in the frozen slide during the surgery and that when that melted they had no way to measure it. The rest of that node and the other 13 were negative. I did not do chemo (oncotype of 11), had rads to the full right breast, and am on tamoxifen. I do have some lymphedema in my upper right arm and the front and back quadrant of the surgical side. I no longer wear a bra because it causes edema in those quadrants; however it is not so uncomfortable that it limits what I do. It is a hard decision but I rest just a bit easier knowing that the rest were negative.

aussieched

Hi Runningfromcancer,

I had a lumpectomy and sentinal node removal and was initially told the sentinal node was clear. When I went back a week later to get the full pathology report, I was advised that they found a 1mm micrometasasis on the outside of the sentinal node, and I was then told I would have to return to have an axillary clearance, which I did.

A further 29 nodes were taken out and all were clear. I was told a good solution for me would be to then have my ovaries removed, instead of CMF chemo,which I did a week later. as I was 52 and had not started menopause. My IDC was 80% estrogen & 80% progestorone. At the time we did not have the oncotype available to us in Australia, so I was flying blind as to what to do, and basically followed the advice of my doctors.

I developed lympodema straight away after the axillary clearance and continue to have huge problems with it. I have now developed lymphangoma circumscriptum in the axilla and I have been told it is a direct result of the axillary clearance (30 nodes in total) plus radiation on top, and the resultant lymphodema. I have also now been advised that this could turn to angioscaroma at some time in the future. So I am totally bummed by the whole outcome of the surgeries.

I followed up the 3 surgeries with radiation, and am now just about finished my 6th year of AI, Femara.

Ched

naiviv

I knew I had one node that was positive going in to surgery from core biopsy and MRI and PET. They did ALND and removed 13 more.

The additional 13 were clean and the one that I knew about was a micromet. I'm still recovering from second surgery to my C side because I picked up a bacteria, so still a bit swollen again, so I am not sure yet if I have or will have LE, but I am already in touch with a PT and will see her to help avoid once I am healed.

It a tough decision to make. I am not sure if this is possible but could you ask if they did go back in to remove more nodes, can they limit the number ? Whatever decision you make, you need to be at peace with,the stress of worrying is not good for you.

Take care,

Vivian

Anonymous

Thanks for these very helpful responses. I'm sorry for those of you who had the nodes removed and developed complications, but I'm happy for those of you whose surgery removed cancer that you didn't know you had. I'm inclined to have the ALND because I'd rather have lymphodema than cancer... but the truth is that I'd rather have neither !!!!

coraleliz

Running- They found 2 out of 4 positive(3mm) nodes on one side( I had bilateral disease). My MO wanted me to have the additional nodes removed but my BS wouldn't do it. She felt the risk of lymphedema was too great. She thought the recent studies done on lumpectomy patients could be applied to me even though I had a MX. She sent me to the RO & he initially told me that if my MO needed the additional information from the ALND to treat me, I should have it done. I asked him about the "studies" & he said he'd review them. He said he'd call me if he changed his mind. I got the call a week later. He felt the studies could be applied to my situation. I did not have the ALND but did have RADs.

I have mild truncal edema on the node positive side. That side was so much slower to heal & was still causing me problems when the MO suggested the ALND.

I guess for me, if they found additional positive nodes, I would be considered stage III.

No clear answer here.

Anonymous

Thanks Coraleliz,

You addressed a key point - - the studies related to sentinal node micrometastis seem to be more relevant to people who have had a lumpectomy and radiation and not to those of us who have had a mastectomy. My BS is against axillary node dissection too, but since the Radiation Oncologist is against radiation... it seems like my MO is leaning toward ALND as a "back up" plan in addition to TC chemo.

Are you planning to have chemo? hormone therapy? My Oncotype DX score was 18, right on the line, so I did go ahead and have chemo.

I hope you are continuing to heal! Thanks for answering my post. This is a tricky situation and I appreciate hearing what others have decided.

coraleliz

Running....-My oncotype came back 4. I did not do chemo. I did do RADs. I was very relieved when the decision making process regarding treatment came to an end. I spent so much time weighing each equation but still it's a bit of a crapshoot.

badger

hi Runningfromcancer, I had BMX with bilateral sentinel node biopsy in Feb 2010. Surgeon took 4 nodes, 2 from each side. Was originally dx stage 1 IDC but that was bumped up to stage 2b after path report noted a 2.5 cm tumor and a micromet in 1 node. Surgeon recommended against ALND, a decision with which onc and I concurred: onc after reading studies and me after reading posts on BCO. Rads was not offered due to location of tumor, toward front of breast, but chemo was. I did six rounds of TC (taxotere and cytoxan) March-June 2010 and been on tamoxifen since July 2010. So far so good. These are tough decisions and I wish you the best in making yours. ♥

vlnrph

Very interesting thread: see my history below. The surgeon insisted on ALND and, since I had tumors in two different quadrants, I had to agree. Because the DIEP flap would have been damaged, radiation was not an option.

LE is now my constant companion. Aussieched's story is a sobering reminder that the lymphatic system is critical to health and should not be ignored. Be sure to get baseline measurements if you go through with the operation and be very careful in those important first post-op hours & days. Give yourself time to heal. Do not stretch the arm above the shoulder. Look at the website StepUp SpeakOut.org for more info. On the other hand, your physiology may be of the more robust variety and you will never become a member of the "swell" sisters!

Anonymous

I really appreciate all these responses! I saw my MO again today before my third chemo round. His opinion is that there is a 9-10% chance of cancer in other lymph nodes. With chemo, he believes we've knocked this down to a 1-2% chance, but since this equates to a 1-2% chance of a recurrance, he feels that this should be taken very seriously. He still recommends ALND because there is currently very little research on outcomes for breast cancer patients with a mastectomy who have a mastectomy, no radiation, and no ALND. So I am leaning very strongly towards having the surgery! I am 48 and raising two kids mostly on my own..and want to do everything possible to avoid a eecurrance!!! Very tough choices indeed! And definitely a crapshoot!!!

ahdjdbcjdjdbkf

I had a similar situation - initial sentinel node biopsy was negative. I decided to proceed and remove the sentinel node because it looked fuzzy on scans. The radiologists thought something was up. I had multiple micromets in my sentinel. So I went ahead and removed 11 more nodes - all of which were negative. I do have mild lymphedema - which to date I have been able to control with diet and exercise. My right arm is maintaining at about 1 cm swollen. As much as I don't like lymphedema and the pain, numbness, swelling, unattractiveness, fear of worsening and infection, I made my choice. I feel better knowing the nodes are out as it only takes ONE cell to cause a recurrence.

Anonymous

Thanks for responding, Mariasnow! I bet it was a relief to have 11 clear nodes! I am afraid of lymphedema but more afraid of a cancer recurrence, so I plan to go ahead with the ALND. I only have one more round of chemo, then that surgery, and then DONE!

2timer

I had a BMX in August and they removed 6 nodes from the left where the tumor was and 3 from the right. All were clear. However, pathology found a 2.5 mm positive node inside the breast. My BS, after consulting with other surgeons decided not to do an ALD. He never said why and I never asked. I'm currently doing chemo and since I had radiation years ago, I can't do that now. Just an AI after chemo.

Racy

Hi, I believe there was a change in treatment protocol at the end of 2010 so posters who had treatment earlier would likely have had all nodes removed but those from 12/2010 onwards not. I had my surgery just before the change.

There are research articles on this site which, I recall, state that the current protocol is that you do not have to have all nodes removed.

If your treatment is not at a leading hospital, perhaps your surgeon is not acquainted with the current protocol.

I suggest you investigate this further by reading the research articles on this site.

Rose_d

I was treated in 2012 and had a full axillary dissection when the sentinel node came back positive.  I was treated at Memorial Sloan Kettering. Had 18 nodes total removed, only the sentinel one was positive.  I think it's still done at leading institutions.

Rose

pupmom

I was treated at an NCI hospital by a leading surgeon in 2011. I had an ALND after 2 sentinel nodes came back with micromets. As Rose said it is still being done at leading hospitals. I'm glad it was done. I do not have LE, but I do have peace of mind that no cancerous nodes were left in my body.

SelenaWolf

2timer... my one positive node was also in my breast close to the tumor, with all the axillary nodes taken (6) from my underarm testing negative.  I've not come across anyone else that this has happened to and that's one of the reasons I fell into the dreaded "grey area" when it came to treatment.  It, also, put me into a "grey area" for staging: my MO said that the lack of axillary involvement put me closer to 2A; my surgeon said the one positive lymph node put me closer to a 2B.  The rest of my treatment team divided itself exactly down the middle, which is why I just tell people I was diagnosed at plain Stage 2.

inks

I had a mastectomy and in the operating room they found nothing in the sentinel nodes. Later the pathology came back with two micromets in one node. They were 0.2 and 0.07. My surgeon really did not want to subject me to ALND. He took my case to the "roundtable" and only one oncologist insisted on ALND because she said it could change the treatment. My current oncologist was not there but he was against ALND also. I had an enlarged sentinel node prior to surgery that showed up on the MRI, but oncologist said it could have been from the biopsy. And the pathology report did not explain if it was the enlarged node that had the micromets. I feel comfortable with no ALND the chemo should zap anything else. My grandmother has lymphedema and although it is not the end of the world it is definitely not comfortable.

Anonymous

Rose_d, Have you experienced lymphedema?

And Racy, my MO and I have looked at a lot of the studies. The problem is that there is very little research to compare outcomes on women with micrmetasteses who have had a mastectomy (and no radiation) and ALND vs women who have had a mastectomy and no ALND.

GrammyR

Rose  d- In 2006 I had MX  with 22 nodes removed. Only the sentinal node under arm was pos. Issues still w/flabby scar under arm. Anyway water under the bridge now as have a new lesion under collar bone..Completed Rads end of Sept and. back on Tamox. I originally did 6 months of ACT . On looking back I think I should have done Rads back then too. Also no lymphedema originally but had lots of . PT.

Raelan

I had a BMX and 2 sentinal nodes were removed at that time.  Both came back clean.  A week later the full pathology report came back and it showed 2.2 mm in one of the nodes, as well as LVI.  My BS recommended a full ALND based on NCI protocol for masectomy patients.  My MO and RO both strongly recommended no ALND, but radiation instead based on the studies of lumpectomy patients that indicate this approach is equally as effective and significantly reduces the risk of lymphodema.  I got a second opinon from a tumor board at a major hospital in the area, and all 3 (BS, MO, RO) agreed with no ALND, but radiation instead.  So, I opted for 33 rounds of radiation, which was in addition to 4 rounds of TC chemo O got. 

I'm now in the process of utilizing a new reconstruction approach for radiated masectomy patients by having fat grafts prior to TE placement.  Hoping the fat grafts will help restore some of the radiation damage and allow me to avoid some of the more invasive flap surgeries. 

To date, I've had no signs of lymphodema. 

This is a difficult decision to make, but recent studies do indicate that radiation instead of ALND is appropriate for certain situations. 

SaturnRing

I had BMX during which they took 2 nodes as SN, since they were possibly a mm (even less according to doc) away from each other and both absorbed dyes. After surgery I was told SNB were negative and on further tests told that I had Isolated tumor cells on both the lymph nodes so I was staged as node negative, but I was asked to choose between ALND or Radiation and both BS and MO suggested Rads as better choice than ALND. I went with that and though RO said I was *possibly* over treated, said we are just throwing everything at cancer since I was just 33 and was triple negative.

Anonymous

Hello,  I ended up having axillary lymph node dissection on December 11.  All the nodes were clear of cancer.  Radiation may have been easier on my body than surgery but the RO felt there was too much risk for not enough benefit, and my surgeon was willing to do the surgery, so that's what I went with.  Recovery from ALND has been painful but I am relieved to know that there was no further cancer in my lymph nodes!