Positive lymph nodes

There is some new thinking that one lymph node is not that big a deal (some of my docs were discussing this)--that now we have more sophisticated path techniques and we can find tiny bits of cancer that were not found a few years ago. You might have been considered to have clean nodes in the past. You may do just as well as if you had. It would be nice to know more about spread and recurrrance, but we're not there yet.

I find I have to accept that I had treatment, and I can't live worrying about what I don't have. For now (and maybe forever) I'm ok. I hope you find a similar balancing point yourself (it's precarious).
Take care,
--Hattie

I had 12 positive lymph nodes and had a hard time processing it for the first year - thought about it all the time, worried about what it meant, etc. Then a few months ago, I suddenly (or gradually - I don't recall) let it go and now I rarely think about it. I don't know why but I have come to peace with the fact that mine had spread beyond the breast, I am getting all the treatment known to modern medicine, and I can deal with what happens. (I hope). I think about it now, but don't worry about it like I used to.

Hi,
Sorry you are worried, honestly, the only thing that has eased my worry has been time, although I still worry occasionally, it is not always on my mind like it used to be. It has been 4 years since I ws diagonsed (diagnosed at 36) with triple neg, 3.5 cm tumor and 2 positive nodes. I know it could come back at anytime, but I seem to worry less and less with each passing year. I wouldn't exactly say I feel "safe" , I don't think I ever will, but now I do find myself planning more for the future, something I didn't do within the first couple of years!
Sending you best wishes!

My dx was ilc one node involved I just finished all treatments Dec 4th 2006. They put me on Aromasin, I stopped it after 3 weeks, Made me feel terrible!! I see my oncon the 23rd of this month and I am sure he will want me to try the arimidex. How are you doing on it!

I am not trying to think about reoccurance I am just wanting to feel good again, Which I am starting to espically since I stopped the Aromasin. My oncon told me the same thing about the 20%. I am asking myself is the 20% chance of reoccurrance worth the inhibitors and being miserable for 5 years. Anyway that is where I am at right now> I will try the arimidex but if it makes me feel like the Aromasin did I will not take an inhibitor and just be very watchfull of my body, I just had a lumpectomy so I will continue of course with mammo ever 6 mos. and do self breast exam every nite!!!! I just want to feel good again!!!!!!!! That is my priority

let me know how you are doing on the arimidex!!!

Steph

Liz - I have a similar diagnosis and was making myself crazy with fear and depression because I blamed myself for not catching it sooner with regular mammogram. My parents were in/out of the hospital and I simply lost track of time and missed mammograms. But there is no point in looking back now but to move on with life. I don't want to waste time feeling down but enjoy life again. Instead I'm focusing on eating healthy, antioxidant supplements and daily exercise. My goal is to make myself healthy so if I should have a recurrence then I will be better able to go through treatments again. Goal is to survive and enjoy life in the present and plan for the future. I don't want to loose and ruin the present in fear of the future.

Next phase in this journey for me is my ooph tomorrow and then start an AI maybe Femara. Now looking forward to what possible side effects I will encounter next. However, I know these medications are critical to prevent recurrence and I will persevere. Joann

Carol, tell your aunt I am her new biggest fan. I was dx stage 4 at 29. Now 30 and NED. I hope to stay that way. Thanks for the post

Janna

I am new here - just joining. Dx 12/14 with IDC, found by annual mammo. Had lumpectomy 1/10 and one sentinel node taken out. During surgery, node was "negative", so my bs did not take out anymore nodes. But after more path tests done, found micrometastasis in the node.

Now, up to ME - do I go back into surgery and get the rest of the nodes out? My onc says I have to do chemo anyway (tumor 1.0cm ; got clean margins) due to the tumor path report.

My bs says that although axillary dissection at this point is not mandatory, he would have done it had he had this same report during surgery.

I did not schedule the surgery yet - after reading TONS of info on here and the net, there just doesn't seem to be enough evidence for me to do this surgery. I live a very active, heavy duty lifestyle and really need my arm to WORK properly!! Between the healing time, lymphodema, and all issues related later, I can't see why having operation will make a difference in overall survivor rate. All the studies seem to really say that the reason they take the nodes out is to TEST them, see IF the cancer has spread. Then, it's chemo if it has.

I meet with my onc next week, and will discuss more in depth - but being that I am having chemo anyway, I figure the surgery is NOT necessary! This is sooooo confusing!! I thought chemo got ALL the cancer cells - but people here are always afraid of spread because of the nodes - now I am not sure what to do, but will talk to my onc and get their opinion before doing anything.

Thanks - I think I actually just "vented" about it! I feel better already!

Kellyd -
Did you have to have the mastectomy becuz of the microinvasion of the breast tissue? I only had to have a lumpectomy (1.o cm tumer - got clear margins)

I am hoping that my oncologist agrees with me - no node surgery!! Glad to hear that someone else did NOT have to undergo this surgery! thanks so much for the reply!

horsegal
I don't think I would have more surgery on my nodes. the info is mostly used to decide treatment and even though I would like to think that taking out positive nodes prevents the spread of cancer that is not what I've read. I had 24 nodes out and now I have mild lymphedema in that arm and it's all numb around there. Even though the lymphedema is mild it is still a pain!
Sue

Horsegal, I was in EXACTLY the same situation you are in. My sentinel node was positive for micromets and they wanted me to have more nodes removed. I researched and researched and made myself crazy. I actually scheduled the surgery and canceled it twice. My oncologist said that in his opinion (and he had NOTHING to gain from this)surgery was FAR superior to chemo or radiation for getting any cancerous lymph nodes. FINALLY I had the surgery. They removed 10 more lymph nodes ALL negative AND the surgeon (a VERY good surgeon) 'nicked' a nerve and now my forearm has a numb spot that goes from my elbow to my wrist on the bottom of my arm. I do feel relieved that there were no more positive nodes. It is such a crap shoot. Also nodes can become positive from the sentinel node procedure and also from the biopsy prior to surgery. Good luck with a VERY difficult decision!

Liz, Realize that the job of your lymph nodes is to catch toxins/cancer before they spread to other areas. Also a positive lymph node can come from a biopsy or from the sentinel node procedure or from manipulation of the tumor during surgery. It doesn't dictate the aggressiveness of your tumor. That said, I know how you feel. My first diagnosis in 98, my nodes were negative. This time (06), I had one positive (.6mm) for micromets.....even though I knew my pathology report was basically good, it freaked me out too. I think too much emphasis is put on lymph node status.

LizM

It is true that nodal status does play a large part in tumor staging and recurrence statistics. But again statistics and staging are just generalized methods of categorizing cancer. I have been told that 0-3 positive nodes is the first general category, 4-9 nodes the second, and 10 or more nodes the third category as far as impact of positive nodes on staging. In addition nodes that are matted together or ruptured (extracapsular extension)are more cause for concern also.

Obviously no nodal involvement is what we all wish for but that is still no guarantee that cancer has not spread since there are other mechanism thru the vascular system for spread to occur. At the same time having positive nodes is not a guarantee of spread outside the local breast area either.

All 23 of my nodes removed were positive, largest size greater than 5mm and had extracapsular extension in the axilla. I could be really upset by that on one hand but on the other I am glad that these 23 little cancer sites were totally removed from my body and that the nodes were doing their job. I know my risk is still very high that other nodes not removed are positive but at some point we all just have to have faith in the decisions we make and move forward with life.

Liz you treated your cancer very aggressively and your cancer characteristics were very favorable! Try not to let cancer take away your peace of mind. I know thats a tall order for all of us and I accept that we can never completely wipe out the "what ifs", but I refuse to let doubt take over my life. Thats one of the reasons this site is so great because we all can indentify with and understand totally the emotions and fears that cancer tries to smother us with. It is so encouraging to me to hear the strength and determined wills of so many women who continue to beat the odds. Makes it easier for the rest of us to face each day.

Hi
Fitztwins it was my plastic surgeon that commented that my lymph nodes had done a good job. I recognized your post. It was the only thing anyone has said that made me feel comfort. This is after they took 19 out of my right side and 10 were positive. 14 out of my left and 3 were positive. I think about it daily. Every ache and pain is a reoccurance in my mind. Until it ends up just being an ache or a pain. What everyone has to remember is even cancer with no node involvement, can spread. Its sad it doesn't make sense but its a reality.

well Liz, if I had grade 1, I would never worry about cancer coming back for a second. I was hoping and praying for grade 1 but had to settle for grade 2.

Try concentrating on the positives - like slow as a snail growing grade 1!!

Grade 1 is so slow growing that the tumor was probably in your breast for many long years before discovery. Long enough to get into one lymph. But, the lymph did its job - capatured the cancer!

My tumor was 10 mm - grade 2 - both surgeon and onc said at grade 2 it was probably there for about 3 years at that size. (4 years max) No lymphs positive.

Thankfully my brain has allowed me to feel that my cancer will not return. On very rare occasions - extremely rare - I get a little, tad bit scared of it coming back. And sometimes but not often I wish I had done a bi mast.

But, I know a gal who is a now a 5 year survivor and she has worried almost daily about her cancer coming back. She doesn't go shopping anymore, out to lunches or dinners, shows, parties etc. She has ruined her life with worry.

Cancer didn't do that -- she did it. She has made herself miserable with worry and has been ALIVE for 5 years now. What an emotional waste of 5 years!!

I don't know if I have 5 years left or 50 years. But I do know I am not going to waste any of it worrying about cancer coming back. I now live each day to its fullest -- and I am living a wonderful life!

Cancer isn't going to rob me of happiness & joy! I do what makes me happy -- and I am! Deliriously happy!

I try not to dwell on re-occurance. Liz - my course of treatment was quite similar to yours. Saw my onc today for my 3 month follow up and asked how much benefit the Arimidex was for me and he said huge - 21% increase in my survival rate over 10 years!!!! I guess I will continue to take it. Onc said that with all my treatments, I went from 24% survival rate to 75% - so I guess, I need to look at the positive side. I try not to loose sleep over this (which is good since I already have insomnia since chemo!!!) When I worry about re-occurance is when I hear that it has happened to some one else. It is still just one day at a time. My one year anniversary is coming up on the 3rd. It will be nice to say I am a one year survivor (instead of months). I think when I am done with everything - reconstruction, it will be easier to move on. I have since developed carpel tunnel and I am having surgery on my right hand on the 2nd (picked the date as it was as close as I could get to the anniversary, so I could have a distraction that day - was worried how i would handle it). Well, I am rambling, so I better go. Wishing us all feel good days - and lots of them for lots of year.