If I hear one more time "Thank God it's not in my nodes!!!!
I am just having a little rant this morning. I see so many say "Thank God my nodes were negative, or "I'm so lucky it didn't make it to my lymph nodes" . It makes me feel like I have been given a death sentence because I did have positive nodes!! Does anyone else feel this way?
By the way, I do want to say I am happy for those who are node negative, but it just makes me feel so scared when ladies say it like it is a death sentence. I am probably being oversensitive, but just had to get that off my chest!!
Thanks for letting me rant.
Comments
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u rant all u want, girl...different things set different ple. off..anytime i think someone is minimizing my cancer, or the fear it caused, im like a mother bear...some well meaning pletell me oh, thank god, it was only one node!so, i can relate. good that u get ur feelings out in a rant. the drs. say stress is the worst thing, then, they send bill collectors after me where'd that come from! another time, another rant...light and love, 3jaysmom
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Rant away.
This disease is so sneaky that node involvement is not the end-all-be-all. There are many people with no node involvement with different grades that end up with mets. I can't remember where I read this, but 20-30% of people with no node involvement can end up with mets.
I am scared of always living in fear with this disease!
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Susie-
I felt exactly the same way as you describe. To tell you the truth, I still feel that way. I remember going to a support group and EVERY person said, "Thank God it's not in my nodes." Then they got to me and people actually gasped when I said it was in 6 of mine. I dropped that group.
Personally, I do not think you are being overly sensitive. I mean, would people go up to someone without legs and say, "Thank God I still have my legs."
And I feel like you do. I am happy for the person who has a better pathology report but I don't need to dwell on my horrible one or make the gasping person feel better.
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Susie - I am one of the many with clear lymph nodes and was stage IV off the bat. IMO, the lymph nodes act as filters, and yours did their job....they filtered the junk and stopped it from going anywhere else. Mine zipped right out thru my bloodstream!
People just don't always realize how what they are saying sounds to another. Heck, I am on the stage IV board tons and I can't tell you how many times I hear "thank god I don't have brain mets!"....gee thanks.....
I think the information about mets and clean nodes is kinda ignored because it probably scares the crap out of people? Hang in there sister!!
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Hi Susie and all
Just to let you know I'm one with lymph node involvement apparently several however I feel lucky that it went into my nodes - sound strange? Lucky because it was because of the lump I found in my armpit (size of a yolk of egg) that alerted me to something being wrong. Next day I was at my doctor who examined me and said I also had a lump in my breast! It was quite clearly there are 4-5cm and I hadn't even realised. Anyway I'm thankful I was alerted. I was diagnosed June 2007 with grade 3, IDC, lymph node involvement and HER2+++. So that is my response if/when anybody says to me that they are lucky it wasn't in their lymph nodes. I had a lot of treatment and currently am doing well.
Amy
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I know exactly how you feel I am always expecting the other shoe to drop.But it is something we are all ealing with positive nodes or not.
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That's ok Susiered,
It is so good to be able to "rant" on the Boards--and in the Chat room--with others that truely underdstand this wild roller coaster. It can feel much like dodge ball as well at times.
You loose some friends and gain others you never thought to be in your corner. Hang Tough Now & Focus!
After a very high dose of chemo, I still had 5 live nodes of 19 after my surgery. My Onc and I believe it is just what was left over. She's a gem. Wish I could share her with others.
Lee 27
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Hi chainsawz,
Reading your post just helped me so much. Here I was cursing that I had one positive node (so far). Your pointing out that this node "did its job" catching those cancer cells, totally changed my perspective. I am new here and still trying to figure out my treatment. I had lumpectomy and SNB on 4/22. Node was a false negative so they did full node dissection on 5/13. My oncotype score came back 16 and I am waiting to hear what the other nodes are. I am struggling terribly with what to do about chemo. I will meet with my onc next week to review everything. My surgeon said, if it were her, she would not do chemo with a onco score of 16. But aren't most of the oncotype studies based on women who are node negative? Do they have enough evidence on node positive women? Here is what I know so far. 2cm, grade 1. E+ 1node +with micromets, other nodes in pathology now. Sure would appreciate some feedback on how to decide from anyone.
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Designer mom - I haven't had surgery yet, but my onc and surgeon said I should do chemo either way, node positive or not, based on my age (37) and that I have two young kids (2 year old and 3 month old) to live for. They "think" my tumor is a grade 1 based on the biopsy, but that can change with the final pathology. I've also read that chemo tends to work better with fast replicating cancer cells as opposed to grade 1 cells. So it's a double edge sword. I think if I do not do chemo I would always wonder if I did everything in my power to ward off this disease. Is Tamoxifin an option for you as well? Good luck with your decision either way. It's a hard one.
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I don't get offended when someone says this; indeed, I'm happy for the small statistical advantage this may give them. But as in_cognito points out, being node negative is no guarantee that the cancer hasn't or won't spread, nor is being node positive a certain indication that it will.
Cancer cells may turn up in the nodes for more than one reason. The cancer may be aggressive, or the nodes may simply be doing their job of filtering out alien invaders. If only the sentinel nodes are involved, the situation is particluarly ambiguous. When I commented to my BS that it was too bad about the nodes (all sentinels), she just shrugged. I imagine she'd seen a number of cases where that wasn't a critical factor. So if you've node positive, don't despair; and if you're node negative, don't presume.
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Designer - I started out stage IV, so I don't really know much about oncotype?
There is a great thread called NEW Oncotype Dx Roll Call Thread you might check out in the Chemotherapy - Before, During and After forum. I hope this helps you!!
http://community.breastcancer.org/forum/69/topic/730468?page=14#post_1759640
Here's part of the post:
Welcome to the "New Oncotype DX Roll Call"!moodyk13 started this thread when she was looking for some help with her oncotype score and discovered that many people want advice or info regarding this test that so many of our oncologists use to help us make treatment decisions. She very generously built it to what it is now and it has proven to be very helpful to newbies to see they are not alone with this. I know it was very helpful to me, which is why I wanted to continue it when moodyk13 could not.
The following is a list of sisters who were kind enough to share their recurrence % rates and the coinciding oncotype scores. If you would like to be included in the "roll call" please post or PM me your oncotype score, recurrence % (w/tamox only) and what treatment you have chosen using the codes listed below. Even if your score is already listed, your name can still be added.
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((((((chainsawz))))))) I don't even know what to say. Here I am as far as I know cancer free thanks to my lymph nodes and there you are making me feel better with you being stage IV. You are right my nodes did their job, that's what my bs and onc told me from the beginning, but a lot of women feel they dodged the big bullet by being node -. Maybe they did, only time will tell. There is no ryme or reason to this darn didease. I can't imagine how you feel having brain mets and hearing those say "at least I don't have brain mets. Thank you for your encouragement and you hang in there too!
caaclark, I don't think I would be returning to that support group either. I hope I can encourage you some by telling you of a friend of mine I saw Sat. night. This is for you too chainsawz. She is a 13 year stage IV survivor and an 18 tear overall survivor. Her 1st occurrence she had 17 + nodes. This lady is 60 and looks like she is 40. You would NEVER know she is a stage IV cancer patient. She takes Herceptin every 3 weeks, refused Tamoxifen and is truly a miracle. She is who I try to think about whenever those ladies say "Thank God is wasn't in my lymph nodes"!!!!!
Amy I totally understand what you are saying.Without those nodes, no telling where it would have gone.
Lee I also did chemo first and had the 2 positive nodes. How it survived after all that, I don't know, but we are going to be fine!!
Designer mom I wish I could help you with that decision. My motto was hit it with everything you've got. There are so many knowledgeable women on here that know so much. I am hoping some of them chime in here for you. Good luck!!
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Maybe I'm a hypochondriac, but when my surgeon told me my 4 nodes were negative and I should be happy, I gave him a look of disbelief. There are other lymph nodes he didn't take out. There is the bloodstream possibility. There are a multitude of ways he could have taken out the wrong nodes (in my case, anyway, because he did it "blind" due to the stupidity of my hospital--"sorry, we're out of the dye"--and I'd had 2 previous breast surgeries that could have messed up my lymph system). This is something I'll have to spend the next x amount of time fighting and then I'll have to face the fear of recurrence for the rest of my life. And I should be happy? No, not really...
Hugs to you, though. I understand how that statement could hurt. Also, I love the analogy to the person missing his legs...
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JennyB: Ask your BS to recommend a PET scan for you. You may have to make a stink, but remind him/her your situation, and that it was the hospital's screwup. The scan should show any active cells in your lymph nodes, or put your mind at peace!
Hope the best for you...
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As a PET/CT coordinator, I can tell you that they will not do a PET solely for that reason. There are several insuranse issues that must be cleared first and criteria that must be met. Its frustrating but I wish you the best.
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Thanks in_cognito,
I guess we are both sort of new to all this. It would be easier if everything was black or white. I have an 11 year old and whatever it takes, I want to live. That is the bottom line. For me, I would rather throw the big guns at this thing now. If I did not do chemo and it recurred, I would never forgive myself.
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In reality, breast cancer treatment is a crapshoot. Medicine is not an exact science... The only guarantee in medicine is that nothing is guaranteed! Odds don't tell the entire story... And I'm so TIRED of hearing the piece about having a POSITIVE attitude!!!! I've known too many wonderful women who wanted to live just as bad as the next woman... If I cry or I'm bummed out, it doesn't mean that I need to hear, "Well, just look at the bright side, you're half way through your chemo"... "At least you got the good cancer"... "At least they caught it early!" I'm sure you've all heard your share!!!
In one of my bc books I read about a doc who had two patients, one with no positive nodes and the other with 15/27 nodes. Both patients did chemo (the lady with 0 positive nodes wanted the chemo & begged her doc - the doc didn't think she needed it), sadly the patient with stage 1 died. The other was alive 15 years later (still alive when the book was published)... Unfortunately, there's not telling...
Ultimately, which group do I fit in??? In 2002, 38 years old, my first dx, extensive DCIS (lumpectomy, re-excision, mx w/ free tram flap)... Everyone told me how lucky I was... In 2008, 2nd dx whole new primary bc not even picked up on the mammogram! I accidentally felt it rubbing my chest! mx, 8 rounds of chemo, 25 rads, recently lat flap w/TE... You hope for the best and fight it with all you've got! There are good days and there bad days... Sometimes I cry at night & pray that my daughter does not have to go through what I did...
In my next life I'm going to be a mare, because bc is extremely rare in horses!... Maybe I should start eating grass?!
Take care, CalypsoGirl
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Susie, I think it's good that we each grab onto the positive about our dx, whether it's the fact that it's not in our lymph nodes, or only in 1 node, or not mets, or not a particular type of mets. I kind of look at it as "the glass is half full" thinking, and I believe we all need to do that -- focus on what gives us hope. And maybe those who say those things the most, need the most convincing that something is favorable about their dx.
I agree, especially in the example chainsawz gave, that comparing type comments can come across as super inconsiderate. But I also think there's a lot of truth in the saying, "Comparison is the thief of joy," and I think it holds true here, too, if we allow ourselves to make comparisons that were never intended. Besides, as others have pointed out, lymph nodes alone are not an accurate predictor of any of our futures. And you can also look at it this way -- those of us with positive nodes in many cases have had the more aggressive treatment, which I think is something to be grateful for! Deanna
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Carol, the analogy of legs is one i also find very useful. A friend of mine had to have her leg amputated around the time of my mastectomy, and she has a young family on her own including a mobile baby. I would keep my mastectomy anyday compared to what she is going through.
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It's so ironic to me, because if my one big lymph node had not shown up in the corner of my mammogram, I don't know if we'd have caught my sneaky IDC/ILC/DCIS/LCIS combo. I started out saying "thank God it was in my lymph nodes" to everyone who'd listen, and I say it that way to this day.
Peace,
Cathy
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Deanna you never fail to encourage me in some way. You have such a way of putting things. I had never looked at it from the point of the woman diagnosed with bc and looking for something positive in that diagnosis. I think that will make me a little more understanding. Although it still scares me to death when someone says the "thank God it wasn't in the lymph" thing. I guess no matter what your diagnosis it's scary.
Chainsawz has made me realise a lot. I know for a fact I myself have said "Thank God I'm not stage 4". How those that are stage 4 must cringe when they hear that. For not being more sensitive to their feelings I am truly sorry.
I know some women are scared when they are told they are her2+. I have always been grateful for that because I have herceptin in my arsenal to fight with.
Cathy I also had a huge lymph node under my arm. I always felt like I had something in my armpit and it irritated me constantly. I ignored it for a very long time. I know over a year. Never bothered to really feel in there to check it out. I wish I had, maybe the tumor in my breast would not have grown to almost 5 cm. It was my body trying to get my attention. After 6 rounds of chemo that node under my arm was still 2cm. I should have payed more attention, but the lymph node did it's job and kept it from going anywhere else in my body.
Like I said in my original post "I am probably just being over-sensitive" I am going to thank Tamoxafen for that, but that's a whole other thread!! Lol
Blessings to you all,
Susan
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I *wish* it HAD been in my nodes.
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Hi! I am new on the boards here. This thread is interesting and reminds me to be grateful for what I have (it could always be worse) and careful with my words, because someone else's cancer IS. I gained a lot of information reading through these posts. Thank you!
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The think I hang onto is within an oncotype, the difference in mortality between 0 nodes and 1-3 nodes is quite small. They say not "statistically significant", i.e. within the margin of error.
That was the most reassuring thing I learned about nodes. Since my tumor was small I was really suprised to be positive. In the hospital a resident said this showed I had an "agressive little cancer."
My onc says this is not the case. The node was not anywhere as important as the oncotype in his decision. When I asked how a little cancer could have a node without being agressive he said, cancer cells just like to move around.
He also says stage is not nearly as important as tumor biology( He was talking about 1 vs 2)
Still this ain't no party.
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I think Lisa's post is excellent - put's it all in complete perspective.
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I think one reason why people say this is because, just a year or so ago, if a patient had only one positive node, chemotherapy was considered an essential part of treatment. Since being node negative in many cases meant a reprieve from chemo, people were tempted to celebrate. Oncotype testing is changing this practice of making node status a litmus test for chemo, as cookiegal's example suggests.
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I have had the "but they got it before the nodes, right?" from several healthcare people. When I answered, "no" they just got really quiet. It made me feel like "OH CRAP!" As a side question, does it matter which nodes are involved? ie: a sentinel and an ancilliary? (don't know if I spelt that right)
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Jen--good question. The sentinel nodes are the ones closest to the tumor, and they are therefore most likely to get cancerous cells first. There are exceptions, but most of the time this is the case. If something turns up in the sentinel node (or nodes), the surgeon then removes more nodes, or does a full axillary node dissection. If no more nodes are found, that is generally taken as a sign that the tumor is fairly localized and relatively early stage. One of the purposes of radiation treatment is to get rid of any stray cancer cells which have escaped detection in the SNB and AND.
The ideal is always to catch cancer at the earliest stage, so the healthcare people were probably a bit embarrassed to have assumed that was your status. This also happened when virtually no one questioned the significance of being node+ or -.
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I had clear nodes, but that didn't affect treatment decisions (chemo & rads). I met people in chemo who had nodal involvement but lower oncotype scores than I did. I think we all need to try to look at the silver linings, but realize the impact our words can have on others who are facing the same struggles we are.
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I was just thinking about this thougth this AM. I too get so tired of people saying "at least it wasn't in my lymph nodes". How i choose to deal with this is to try and not make the same mistake that would make other people upset. Ie- "At least it wasn't ......." Cancer simply sucks no matter who, where, when size etc.
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