Additional Surgery to Remove more Lymph Nodes

ceci240

Hi, I just had a double mastectomy a few weeks ago and when the surgeon when it, she found that it had spread to 1 of my lymph nodes.  She removed that lymph node during the surgery.  I am wondering now if I would need to do another surgery to remove more lymph nodes or if I need to do radiation as well?  I am schedule to see the oncologist in a couple of weeks to discuss my Chemo treatment.

Thanks.

Hopeful82014

That's something none of us can answer. I'd urge you to call your surgeon's office and discuss it with her - I'm kind of surprised she hasn't addressed it with you already. 

Good luck - I hope it's just that one, and that your healing is going well.

ceci240

Thanks for your reply.  I have an appointment to see her next week, but was wondering if anyone has the same experience as I did.

SpecialK

ceci - of course, your physicians are the most qualified to give you guidance on this subject, but it sounds like you might be wanting to know what questions to ask in advance.  Much depends on the size of what was found in your sentinel node - and there are several schools of thought about what should follow.  If you have IST (isolated tumor cells) or a micromet (less than 2mm of cancer) you may be declared clinically node negative - depending on what the rest of your pathology is - you may be recommended to do nothing, remove more nodes, radiate the axilla, do chemo, or some combination of those things.  If your sentinel contained a macromet (larger than 2mm), these recommendations could change.  Due to the increased risk of lymphedema some surgeons no longer recommend removing additional lymph nodes - particularly if chemo and/or radiation is planned.  There are people on this site who have had a micromet, or more than one positive node, and have not had chemo, have not had ALND, and have not had radiation. I would ask your surgeon if additional imaging is planned or if there are plans to try to determine whether additional nodes are involved, short of additional surgery, but the question of chemo should be addressed by a medical oncologist, and if you are ER+ I would ask for the Oncotype Dx test if not already ordered.  The question of radiation should be addressed by a radiation oncologist, if necessary.  This is a difficult, and changing, area of breast cancer treatment decision making - with a wide array of opinions so your decisions should be discussed carefully with your doctors. 

Hopeful82014

Thanks, SK - that's a very useful discourse and I'm sure the OP found it more helpful than mine.

SpecialK

hopeful - I am glad you found it useful.  I was treated right as some docs were starting to remove fewer nodes and shift away from ALND.  My sentinel was initially declared clear in the OR during my BMX.  In the lab afterward they discovered 20 IST.  My very forward thinking BS, who is always on the cutting edge of technology and changes in treatment, still recommended ALND for me due to my tumor being Her2+ and seeing LVI.  When I had the ALND in a separate surgery five weeks after BMX they found a .5cm cancerous node.  This node was never seen by any imaging.  This is unusual in that I just had IST in the sentinel and a much larger node further up in the axilla - usually you would see the reverse.  I would have been declared clinically node negative by some physicians based on the sentinel, but I clearly was not.  If the nodes had not been removed it would have been akin to having systemic treatment but no surgery for what amounts to a stage 1 breast lump.

Lindsaygalinfight

hi SpecialK

I was just told the results of my sentinel node biopsy which was done at the same time as my lumpectomy 10 days ago. No I have to go on Monday for a ALND. I'm kind of scare of the surgery and more scare of what they're going to find on those lymph nodes that they're taking out. I'm also going next week for a bone scan and an abdomen and chest test to make sure the cancer has not spread further.

Su-CQ51

Hi Lindsaygalinfight!  So sorry you're going through this!   My sentinel node biopsy showed positive nodes too.   I'm glad you're getting your ALND sooner rather than later.  The waiting around is the pits isn't it?   I'm having chest CT Oct 23 and will have UMX and ALND on Oct 30.   My Lx margins weren't clear so decided to have UMX to remove any doubt.

Good luck on Monday and hoping your nodes are clear!  Take care!

SpecialK

Have your surgeons fully discussed the logic for axillary clearance and fully supported the reasons for it, and provided any alternative options? I am not counseling against it, I just want you to be absolutely clear about  the risks.

Hopeful82014

I've found that some surgeons get very badly bent out of shape when you try to talk with them about the ALND - which should be a big, red warning flag. 

I've changed surgeons and we are planning to do reverse mapping when the time comes, rather than the traditional ALND. Not all surgeons do this yet and they won't tell you much (if anything) about it if it's a procedure they don't do. 

It doesn't guarantee freedom from side effects but it does seem to give a better chance of avoiding them. It also indicates to me that my surgeon takes this issue seriously and wants to do the best she can to preserve my quality of life. That is something I really value.

SpecialK

My surgeon was one of the pioneers of SNB and reverse mapping but I still ended up with lymphedema even though he has a very small percentage of patients who do. He removed additional nodes due to my being Her2+, and it was the right decision. I would do it again even with the outcome.

Hopeful82014

I'm sorry you ended up with LE, SK, but at least your surgeon tried his best for you - and you can feel that it was the right decision, regardless of that aspect of the outcome. I think that's all any of us ask of our providers.

SpecialK

hopeful - yes, my surgeon was very careful during surgery and provided wise counsel by removing the additional nodes - he and my MO were immovable on the subject.  I wanted to make sure that others reading knew that even though I ended up with manageable LE I had no regrets, I was just unlucky - but I'll take LE over cancer any day of the week.