overthinking node dissection?

northwoods1234

I'm recently diagnosed with a 1.1cm non-aggressive cancer that they removed during surgical biopsy with all clean margins. Now I have to decide between sentinal node biopsy (and go out of my local area) or have an axillary dissection. My surgeon doesn't do sentinal biopsy because he has concerns that true nodal path may have been compromised during biopsy surgery making it less accurate to track the sentinal node and questions whether mapping of nodes is accurate with tumor already removed and area disturbed. I worry about increased risk of lymphedema (our air trips are usually long distances) but would really like to keep my local surgeon and think I might want the reassurance of having more nodes tested. What is your experience?

lfly

Hello northwoods,

I don't know anything about what you're asking. They removed everything at one time with me. Radical mastectomy.

I just wanted to let you know that I wish you the best in the answers you seek. Some wonderful ladies here can offer lots of experience. Even though i am not able to I still want to offer my love and hope for you. Hugs for you on your journey. lorie

cabbott

Your situation reminds me of mine several years ago. I had a stereotactic core biopsy that came up iffy. No cancer, but there were some cells that indicated that cancer might be in the area. The surgeon in my hometown recommended a lumpectomy in the same area to make sure everything was okay. At the time of the operation, a second radiologist read my mamograms and found a second iffy spot. That one was biopsied during the lumpectomy. No lymph nodes were sampled because the path report hadn't been written yet. Two weeks later the path report came out and both spots were positive for cancer. Margins were not clean. I'm built small so that meant a mastectomy for me. When I heard the "M" word, I headed for a university teaching hospital with a well-known breast clinic. The surgeon there had done thousands of sentinal node biopsies, my hometown surgeon had done maybe 12. My hometown surgeon recommend only the regular node surgery or a sentinal node operation followed by the regular node surgery. The new guy recommended the sentinal node surgery with my kind of cancer. He was clear though, that HE should do the node operation because it was complicated and there were ramifications for goofing it up. He said that no one should do a sentinal node biopsy that is not followed up by a regular dissection until they have successfully completed at least 150 such operations. Then they are beginners. He did not want a beginner doing my surgery. You also will need an expert opinion from someone who does thousands of these operations. It is worth the trip. At least 25 percent of those who have to have the regular dissection get lymphedema. You still have to follow the guidelines with the sentinal node operation (wear gloves for doing dishes and yard work, no hot tubs, treat all surface wounds aggressively, avoid bug bites and sunburns...). But the chance of problems is greatly lessened and recovery is much quicker. The surgery you have had does make it complicated and you don't want to miss catching the cancer. But you still may be eligible for the sentinal node biopsy. Take the trip. See the best expert you can get to. Your current surgeon should be willing to help you and still stay your doctor for checkups if you want.

northwoods1234

cabbott said:

Your situation reminds me of mine several years ago. I had a stereotactic core biopsy that came up iffy. No cancer, but there were some cells that indicated that cancer might be in the area. The surgeon in my hometown recommended a lumpectomy in the same area to make sure everything was okay. At the time of the operation, a second radiologist read my mamograms and found a second iffy spot. That one was biopsied during the lumpectomy. No lymph nodes were sampled because the path report hadn't been written yet. Two weeks later the path report came out and both spots were positive for cancer. Margins were not clean. I'm built small so that meant a mastectomy for me. When I heard the "M" word, I headed for a university teaching hospital with a well-known breast clinic. The surgeon there had done thousands of sentinal node biopsies, my hometown surgeon had done maybe 12. My hometown surgeon recommend only the regular node surgery or a sentinal node operation followed by the regular node surgery. The new guy recommended the sentinal node surgery with my kind of cancer. He was clear though, that HE should do the node operation because it was complicated and there were ramifications for goofing it up. He said that no one should do a sentinal node biopsy that is not followed up by a regular dissection until they have successfully completed at least 150 such operations. Then they are beginners. He did not want a beginner doing my surgery. You also will need an expert opinion from someone who does thousands of these operations. It is worth the trip. At least 25 percent of those who have to have the regular dissection get lymphedema. You still have to follow the guidelines with the sentinal node operation (wear gloves for doing dishes and yard work, no hot tubs, treat all surface wounds aggressively, avoid bug bites and sunburns...). But the chance of problems is greatly lessened and recovery is much quicker. The surgery you have had does make it complicated and you don't want to miss catching the cancer. But you still may be eligible for the sentinal node biopsy. Take the trip. See the best expert you can get to. Your current surgeon should be willing to help you and still stay your doctor for checkups if you want.

Thank you. I know that no one in our area has the expertise for the sentinel biopsy because they do very, very few. My doctor is very willing to send me out of the area if I choose but he doesn't remain my followup doctor. That concerns me because I feel like I have a real advocate and friend in him - he spends an hour or two with any patient who has question (he's spent about 5 hours at 3 appointments so far and he does that with his patients - no questions are out of bounds). His patients (I know many of them)love him and he's had a very good track record with his surgeries. I hesitate getting into trouble with a doctor hundreds of miles away that sees me only as a number. I've had bad experiences with doctors with my parents when you can't get hold of a doctor or get in to see them when you need to and I know that influences me. I'm also afraid of delaying too much because it is driving me crazy. Any more thoughts or experiences?

Unknown

northwoods1234 said:

Thank you. I know that no one in our area has the expertise for the sentinel biopsy because they do very, very few. My doctor is very willing to send me out of the area if I choose but he doesn't remain my followup doctor. That concerns me because I feel like I have a real advocate and friend in him - he spends an hour or two with any patient who has question (he's spent about 5 hours at 3 appointments so far and he does that with his patients - no questions are out of bounds). His patients (I know many of them)love him and he's had a very good track record with his surgeries. I hesitate getting into trouble with a doctor hundreds of miles away that sees me only as a number. I've had bad experiences with doctors with my parents when you can't get hold of a doctor or get in to see them when you need to and I know that influences me. I'm also afraid of delaying too much because it is driving me crazy. Any more thoughts or experiences?

You have to go with the decision that will give you the most peace of mind in the long run. I understand why your current guy would not want to do your follow-ups if he was not the one to do the surgery. This is a tough one. I would think also that avoiding lymphadema would be a huge plus. I had a sentinal node biopsy and am so glad that I don't have to worry about that. I know women in my support group who struggle with lymphadema and its definitely a pain in the ****. Think it over very carefully. Most really good surgeons are very professional and will try and get you in for follow-ups when you need them. And besides, those apts. are made way in advance; usually at the time of the apt. before each one.

VermontPines

Northwoods, I had sentinal nodes only removed for my breast cancer- and am grateful every day. It was, however, my first node surgery, so a bit different. I would suggest you meet with the other surgeon to at least discuss the options and get a 'feel' for him/her and the office. Most people I've known have thought their surgeons were wonderful and I've never known one who had any difficulty getting their surgeon on the phone or in to see them when they needed (even if the reason was simply 'is this tiny bit of oozing normal'). You really have nothing to lose by discussing it with the other surgeon - just about all insurance plans allow for a second opinion for cancer surgery. The other surgeon may concur that you're not a candidate, may find that you are...etc etc. I'm now dealing with lymphedema from a secondary cervical cancer in which all the pelvic and abdominal nodes were removed, and I so wish that sentinal node surgery had been available for this. Whatever decision you make, you'll make the one that's right for you. And congratulations on the clean margins and small size : )
Stacey

ninjamom

Northwoods

In my case, I was diagnosed with a 1.5 cm tumor wich was removed during a lumpectomy together with the first set of nodes. The sentinal had a very small amount of cancer which was not found during surgery, it was found at pathology.
My surgeon said there was a 12% change of finding more cancer and suggested I see the radiologist to see if radiation on the axiliary area would do the job, together with chemo. Since I too was afraid of lymphedema I decided for radiation, chemo and whatever else medication they recomended.
This will be a very personal decision, I agree with VermontPines, make the trip and get the doctors opinion.
Will keep you in our prayers

northwoods1234

ninjamom said:

Northwoods

In my case, I was diagnosed with a 1.5 cm tumor wich was removed during a lumpectomy together with the first set of nodes. The sentinal had a very small amount of cancer which was not found during surgery, it was found at pathology.
My surgeon said there was a 12% change of finding more cancer and suggested I see the radiologist to see if radiation on the axiliary area would do the job, together with chemo. Since I too was afraid of lymphedema I decided for radiation, chemo and whatever else medication they recomended.
This will be a very personal decision, I agree with VermontPines, make the trip and get the doctors opinion.
Will keep you in our prayers

Thank you all for your help. Unfortunately my insurance plan changes at the end of the month (Cobra runs out) so I have to move to a plan with much less coverage. This is also weighing on me. To travel out of the area it is an overnight trip so it complicates appointments, etc. I'm still struggling with the decision but your support helps.