Decision time

If it was me I would rather treat it now when it may be just a few cells moving around inside me rather than wait until those few cells metastisize into something much harder to fight.

I did the CLND in groin. The surgery itself wasn’t bad at all but the drain for 5 weeks was an inconvenience. I have a small amount of edema in that leg. My ankle swells when I travel. Not bad at all. I start ipi tomorrow so can’t comment on that yet. I’m all about getting it out asap and doing everything possible to keep it away. (After my CLND another node in my pelvis had melanoma just a few weeks later so yes, this stuff can,spread quickly . I had 2 surgeries in 10 weeks. Now ALL nodes in groin and pelvis are gone)

I wish my husband had had the chance of Ipi when he was stage 3 4 years ago with a microscopic amount in sentinel node.  He declined the interferon as results did not show any clear benefit. But Ipi does show response even for stage 4 so tackling at stage 3 sounds a very good idea.

Not sure any benefit in doing the CLND.  

Good luck with your decision

Maria

The big 3a decision….a lot to wrestle with.  Survivability studies indicate no appreciable difference (I believe) between those that do and those that do not.  Same data I was presented with 5 years ago when it was my turn in the barrel.  I opted to do it because I felt more comfortable being proactive.  My experience with the surgery was largely ok.  I too had the JP bulbs on for longer than I thought would be the case…nearly 6 weeks as I recall.  I also had a post op infection which rewarded me with about an 8 day stay on IV antibiotics.  I was really never in any peril but at the time, it sure did suck!  Afterward, I head virtually zero swelling, although my ankle does swell a little after prolonged periods of sitting…when I'm traveling, I wear compression socks which takes care of that issue.  I am active, I go to the gym often, do lots of cardio without I'll-effects.  If I may offer advise, I would say, do your research, ask your doctor lots of questions, make the choice you're most comfortable with and don't second guess yourself.  Whatever you choose is the right decision for you at that time.  No one has a crystal ball!  Good. Luck!

HI. I can't beleive I saw this today as I have been wrestling with the decision as well. 

Initially I had 2 oncologists tell me "this is standard procedure" but then yesterday i saw a specialist at Emory who stated as others have, that there is no difference in OS between doing the surgery and not doing the surgery. W/out surgery there is a greater risk of node recurrence and the complications can be worse than earlier performed CLND. However, in my case, they found only '3 or 4' cancer cells in the SLN and the specialist said since I am overweight I am at a higher risk of complications and that he is very comfortable in recommending the 'watch and wait' approach. He also stated that he is 100% confident that specialists at Memorial-Sloan and MD Anderson would recommend the same. He cited the DECOG trials as a reference and said that while the MSLT II trial is still too early to give definitive answers, that he did not anticipate much difference in that outcome from the DECOG trial. 

I will watch and wait and pray and be as healthy as possible, believing that they removed the cancer with the SLN removal.   🙂

I don't know the details on your initial lesion, as that played an integral part of the surgeon's recommendation. 

Best wishes to you for the clarity and decision that I KNOW is oh so very hard. Please reach out if you need to talk through your feelings, as I know them all too well.   

I am also stage 3a and I had to make these hard decisions. I wanted to do the "watch and wait" yet I decided to have the clnd on 2/8/16 and I'm still recovering with the drain in my groin. The surgery was not as bad as I anticipated and I am healing fairly quickly with no swelling, just some pain with walking as I think I can feel the end of the drain in my leg. While I had the surgery, I don't think I will opt for any adjunct therapy, side effects are horribly scary with the chance of no benefit or real need. I am only 25 and I don't want to create so many health problems from immunological agents unless there is active disease. But it is your choice. I don't know if I helped at all, but good luck!

I just wanted to weigh in and provide the outlook of someone who is younger but was in a similar situation facing this really big decision. Firstly, I had an auxuliary neck node dissection of a primary that was .84 mm deep with a mitotic count of 1, with less than .1mm of focally present cells in 1 sentinel node. I immediately went from 1b to 3b. 

There are three reasons I opted for the CLND. #1 – it opened up my avalibility for the clinical trial I am currently enrolled. #2 – I recognized that there could be** more cells located within non-sentinel nodes, even though it was unlikely. Fortunately that was not the case. #3 – being realitvely young I believed that I had a really really great chance at rehabing.

These are all considerations I personally made, it is ultimately a very personal decision and not looking back and wondering "what if I did (xyz)" is crucial to staying on top of this thing even though it's tough. 

My onc really stressed the importance of an "insurance policy". If there was a greater than 50% chance of it coming back statistically, I knew I had to do something. That is not the case for all stage 3 stratifications, so it is really important to think about. 

Currently on keytruda every three weeks – feeling great, just a bit tired every now and then. Keeping a positive mindset all the time!

Sending thoughts and prayers your way. Good luck and God Bless.