S/Node Positive in Final Path Report

Hi Carol,

I am at the SCCA, too! We have the best docs, for sure.

Is chemo definitely part of your treatment plan? For one tiny speck in just the first node, this wouldn't usually mean you would have to do more surgery. It really depends on what your overall treatment plan is. If you do have to go back, hopefully that will be something that will be over with quickly. Our surgeons are so good about preserving those nerves that run through the armpit, hopefully you'd have a quick recovery and no pain.



I had a unilateral mastectomy and SNB on Oct. 24, so I'm a couple of weeks ahead of you. I feel so lucky to be in Seattle and have doctors that actually talk to each other about my treatment!



I'm so sorry you are having to face this possibility. I hope you can still enjoy the holiday and get lots of rest so your body can recover from surgery.



Karen

Hi Carol,

I, too, had clean sentinel nodes when they did the frozen section during surgery, but when they did an immunohistogram(sp?) on the nodes, one of them showed a .4mm and a .6mm micromet.  All my docs are still scratching their heads as to whether or not that's significant enough to warrant chemo.  I did go back and have a 2nd level of anxially nodes removed with my 3rd lumpectomy (third time was the charm!).  None of my other nodes have shown cancer.  I'm in the process of getting a second opinion on the chemo question now--both the oncs told me they consider micromets of less than .2mm insignificant, and my spots are clearly much larger than that.  Not sure how it will all shake out for me, but it was a relief to have the second level of nodes clear.  (Of course, the recovery from that surgery has been far worse than the lumpectomies, but that's another story.)

I completely understand not wanting more surgery--it seems that with each one my recovery has taken longer.  My surgeon was aspirating my seroma (byproduct of the lymph node surgeries--what fun!) and told me that in 6 months I'd need to go in and have some tidying up done on my breast.  I actually started whining!!!  I couldn't believe I was doing it OUT LOUD.  But, if your docs think you need to go back in and have some more nodes removed, I will say it will give you peace of mind to know you've done everything you can.  It did for me.  (You do, however, pose a good question about the chemo getting everything--would be interesting to know if that would do it.)

You may want to ask if they can just take the next level of nodes--rather than pulling them all out.  Just a thought.  I would definitely ask the chemo question and have your team explain why more surgery is the best choice for you.  After you have some turkey and clear your head, you may find it easier to engage with your docs (particularly since I know what a shock it is to first get the "all clear" only to be told a few days later that it's "hey, wait a minute...").

Please let us know what's going on.

Happy Thanksgiving--we really do have much for which we can be thankful.

D1

Hi Carol,

My surgeon was Dr. Calhoun, the first female breast surgeon on the team. I think she is fantastic-- and she really did a nice job on my mastectomy. She spent a lot of extra time making the incision line as thin as possible so I wouldn't have a huge scar (I chose not to do reconstruction). She is an expert at SNBs. . . did mine through my main mastectomy incision so I wouldn't have to have another drain and incision to care for. There are three nerves bordering that area so it's hard to remove the nodes without damaging those, but I've had zero arm pain or numbness. She was aggressive about getting extra large margins for me, which has given me a lot of peace of mind.



My oncologist is Dr. Gralow. She is famous in her field and well-known for being a founder of Team Survivor Northwest. I haven't spent as much time with her, but LOVE her because yesterday she told me I don't have to do chemo ;-) She is managing my care now with tamoxifen and I'll do all my follow-up testing with her every year.



My radiologist was Dr. Wong, but since I don't have to do radiation now I really only met her at my first clinic visit where all the docs examine and talk to you.



Karen

I had two sentinel nodes and a volunteered node show negative intraoperatively but come back positive post surgery.  All three had varying degrees of mets...micro in all cases (<2mm).  Since I'd also had neoadjuvant chemo, this was very distressing.  I subsequently had a full axillary node disection with all 14 nodes negative.  I ended up doing more chemo (finished October 17) and just started rads.  I did do a fair amount of research when I found out these nodes were positive.  You do have to be concerned about the amount of cancer... micro mets or ITCs.  ITCs are not considered as big a problem as mets but they really don't know for certain what the implications are.  In any case, micro mets or not, the nodes count as positive and should be treated in my opinion.

Hi Carol.  ITC=Isolated Tumor Cells, possibly dislodged as a result of surgery...I think if you google it you'll get some information.  Micromets are tumors in the .2-2mm range I believe (have to go back to my notes).  ITCs are < .2mm I think ... hopes this helps

I hear you, Sherry, I'm in the process of deciding chemo/no chemo and I don't want to second-guess myself after I make the choice.  Therefore, I'm trying to choose with as much info as I possibly can.  I had SNB in September--frozen section okay, but further path showed two micromets, .6mm and .4mm.  So far, my docs are unable to tell me if this is significant.  I've sent my slides to another cancer center and I'm hoping they can figure it out.  No one has refered to my spots as ITCs.  I did have anxially nodes removed in October, no cancer there.  Not sure what the new onc is going to recommend, but I'll let you know...  (I do know that I get rads and then either Tamoxifen or Arimidex, depending on my menopause status at that time.)  I echo your sigh...

D1

Golfer 779, those are great questions you're posing regarding the anxially node removal.  I'll ask my doc about that ...... I called my onco re my fears and he reassures me that I'm stage 1 etc. I talked with the nurse just the other day, and she's looking through my records and says that she does not see the supposed reading of my slides by the UCD Med Cancer Center's pathologist.  (That is where I go).....  I just sent my doctor a LONG note saying I want to see the top cancer specialist at the hospital.  I'm following up with a phone call on tomorrow.  I don't think they get it that it's our lives and we're worried every day. 

Hey fellow golfer.  Who would ever thought we'd be here.  But..... this is our journey.  I got a hole-in-one this summer.  It hit a Pitching wedge for 102 yards.  Yeay!!!!  My short game is good.  I was out chipping and putting 2 weeks after my first mastectomy.  I get all excited talking about golf!  It helps clear your head.  I took my clubs to San Diego about a month ago.  We had a meeting at a resort; why pass up an opportunity (hehehe).  The weather is still great here in Sacramento, but I haven't had much time lately.

Just attended a bc symposium/townhall meeting in Philadelphia last weekend.  I met a lot of beautiful women, just like us.  It was great.  Learned a lot.  Learned that the drs that understand what we are going through are the ones with their own ailments.  For example one male dr stated that he had arthritis so bad that he had to soak 3x that day.  He understands women with those pains (he said he was popping Advil).  Attended seminar on how to deal with the fear.  It helped during the class.  After that, back in same boat..... But life is good!

Carol,  Sorry, haven't been keeping up here over the holiday.  I apologize for interrupting the golf stories (I got a hole in one the day I found out I was pregnant with my first kid, 19 years ago.  Pretty much put the clubs away to do the mom thing.  I was more of a strip miner, anyway.  The hole in one was a total fluke!  Someday I'll get back to it...).

Anyway, my anxially node incision was the same one they used for the SNB, but they made it much longer.  I think it's longer than it needs to be as when I put my arm by my side you can see both ends of the scar (okay, I have skinny arms, but still...).  Recuperation has gotten harder with each surgery (I've had three).  I also developed a nasty seroma which had me running to the doc's every few days for a draining.  It was the size of a Nerf football (the small kids' one)!  Unbelievably uncomfortable.  I'm still unable to put my arm by my side (I'm 6 weeks post surgery today), so I went in to have it drained again.  My doc said the reason I can't put my arm down is the buildup of scar tissue.  My seroma is just about under control, so the scar tissue is the thing now.  I'm trying to soften it up/break it down by applying cortisone cream (just started that today, but bought it over the counter) and moist heat a couple times a day for 20 minutes each time.  He said that in 6-8 weeks I should be okay.  We shall see.

Still no news from the second opinion.  I'll try to remember to post here when I find out.  (I tend to post more often in the "Just Diagnosed" section under SNB recovery questions.  Feel free to stop in!)

D1

Should I tell you, Carol, that the hole in one was achieved at Congressional Country Club in Maryland--where the pro-golfers play??!!!  (So boastful, I know...)

No drains.  I'm glad about that, though, as it sounds like they're a pain, but as a result, my fluid was just building up in my body--pooling in my pit.  I was trying to keep lighthearted about the situation and took to singing, "My, my, my, my seroma!"  (This to the tune of the Knacks' one hit, "My Sherona.")  Kept me in the right place mentally--and let's face it, that's the biggest challenge of this entire journey.

I'll look forward to seeing your posts again soon.

D1

First of all, Michelle!!!  Great chemo news!!!!  I'm really happy for you.  I'm still waiting on my second opinion (first guy said it was up to me to do chemo or not).  You give me optimism!

Carol, I had an anxially node dissection done.  I went the lumpectomy route, so I had my 3rd go around with the lumpectomy to get clean margins and the anxially nodes done at the same time.  I only had the next "level" of nodes removed--not all the anxially nodes.  I'm not going to sugar coat it--it is a tough recovery.  You deal with numbness and limited mobility for a while.  I also had some trouble with seroma buildup (I did not have drainage tubes--not sure if that would've helped) and had to be aspirated for about 6 weeks (going a couple times a week).  I'm now about 6 1/2 weeks out and I'm doing pretty well.  I still have numbness, but I am hitting the gym again and have worked up to 3/4 my old routine (I LOVE the gym!).  I can't put my arm completely above my head, yet, but that improves every day.  My scar is ugly, but that's a function of my surgeon--not the surgery.  Oh, and shaving is the pits!  (argh--sorry about that).  But the shaving is difficult with my large, raised scar and numbness--not a good combo.

I think the key is to use a lot of ice for the first few days after surgery--it'll help keep the swelling down.  And if you don't have the seroma issue (not everyone does) you'll be sailing a lot more smoothly than I.

Oh, and long term?  Check with your doc, but I'm not supposed to use my lymphnode challenged arm for shots, blood draws or IVs ever again.  They don't always tell you this, so do check.  I think it's to avoid lymphedema, but I'm not sure (someone here will know and hopefully weigh in).

And please, be bummed when you're bummed.  Venting here is the best--I've done plenty.  Fortunately, you haven't gotten any REALLY awful news here--just some more hurdles.  But I think we're all discovering that hurdles is what bc is all about.  They just keep erecting them and by God, we're all jumping them like mad women!

Onward through the fog!

D1

Really, Carol, it's okay to call my story ugly.  My whole surgery saga was a bit of a mess.  But, it's behind me now--I'm not quite laughing about it, but pretty darn close.

I got another hurdle last night--a big one.  But I can do it.  I'm going to have chemo after all.  I'm scared sh*tless, but once I get my head around this, it'll be okay.  One of the things that has me down is that I'll have to have two more surgeries--port in/port out.  I am so TOTALLY done with surgery!  Grr.  Anyway, I have to meet with my onc the week of Dec. 10 (my spouse is on travel next week and I want him to be there, so more waiting for me), to go over treatment options and to find out how we proceed.  I think I may have my port surgeries done at the new onc's cancer center, just to see if I can get an improved outcome.  Can't get any worse! 

Not sure how this will impact Christmas.  We've finally planned a trip to NYC to see a Broadway show (thank goodness the strike is over!) the weekend before Christmas and I'm not missing it.  My dh and I have talked for years about taking the kids to NYC at Christmas time to do some window shopping and so forth.  Suddenly, this year it seemed like we'd better get on the stick!  So no chemo is gettin' in my way!

Anyway, should get to my online shopping!

Tell Group Health to straighten up and fly right--I HATE insurance!

D1