Joining the positive node club

Anonymous

Well, I'm pretty devastated. After two surgeons being so convinced it could not be in my nodes....wrong. My sentinal node was positive and then they took some more. I won't have the path report until next week but I am terrified.

Please tell me some positive stories - like you went through this, had chemo, etc and are doing fine now. That really helps.

Cowgirl13

Zachsmom, while our situations are not exactly the same, I can tell you that I did chemo (i think with positive nodes you will be offered chemo) that before I had chemo, i told my doctors that I would rather be dead than have chemo.  I was quite amazed that chemo was very doable and I was never nauseated.  You will get thru this--lots of mom's here on the boards also--it seems that a lot of the posts i have read from the mom's say they just wanted to throw everything at the cancer.  I know this is terrifying but it will get better.  In the meantime, I hope you can have a nice 4th of July with your son.

Lizzie 

RIV54

When I was first diagnosed I was told that the cancer was stage I, early stage, which was after the initial biopsy. My choices were to have a lumpectomy with rads, or mastectomy with chemo. Well I was more afraid of the possible organ damage from the rads than chemo, so I opted for the mastectomy with chemo. Well when the pathology report came back I had graduated to stage IIIa, with 6 nodes of 25 removed involved. Needless to say I ended up with 6 rounds of chemo AND 28 rads. I started with Arimidex and am now on Femera. My 3 year cancerversary was 3 years in March. I am still NED.

Anonymous

Thank you guys. Every post like this gives me strength.

dlb823

The first two surgeons I talked to both assured me that my bc had been found very early (Stage 1) and they were very certain it was not in my lymph nodes.  The surgeon I chose to do my lumpectomy told my husband and I afterwards that she'd gotten it all and that my sentinel node was clear.  At my follow up appointment 4 days later (which I'd gone to alone, never expecting anything beyond a favorable checkup), she totally blindsided me with the news that my final pathology had been quite different -- my margins were not clear, my sentinel node was positive with extracapsular extension, and I would now need a mast ASAP.  I immediately found another surgeon and medical team, and although I did need additional tx, including a mast, chemo & rads, I am now 2.5 yrs out from that nightmare experience.  And, in retrospect, as tough as it was to get through at the time, I am truly thankful that things played out the way they did because it got me to go to UCLA where I got much better care, including Diep reconstruction that I would not have had locally. 

I know the stress you're going through, but look at it this way -- It's far better to find out now so that you get appropriate treatment, than to have them overlook something that was there and could cause a big problem in the future if you don't get adequately aggressive treatment now. 

I know it's rough and scary right now, but there is light at the end of the tunnel -- I promise.   Deanna

otter

Zachsmom, I went back and read your previous posts.  I cannot imagine how it felt for you to learn that you had a new tumor (IDC) on the other side ... and then to find out, to everyone's surprise, that it had spread to at least one node.  I know you had been hoping you could avoid chemo, and possibly tamoxifen; but this new information about a positive node has shaken those hopes.

I can't tell you what will happen, and I can't assure you that you'll be able to avoid chemo despite that positive node.  What I can say is that chemo is entirely do-able, if you need to do it.

I was node-negative, according to my SNB.  I had 4 rounds of Taxotere & Cytoxan anyway, because of my Oncotype DX score (26) and because of a few other suspicious details.  TC was nasty, but, honestly, I thought it would be a lot worse. I got through it with lots of moral support and virtual hand-holding from the other women on the Chemo forum.  Oh, and an extremely wise and helpful oncologist, and some good drugs to counteract the SE's.  Better living through chemistry, and all that.

I don't know what type of chemo would be recommended for you, if any.  It is possible to do Oncotype DX testing on an ER+ tumor despite a positive node.  Genomic Health has done some studies on node-positive women, and the Oncotype DX test can predict recurrence risk and benefit from chemo even in that situation.  So, don't assume you can't get the test.  (I don't know about insurance coverage for someone who is node-positive.  That's a whole different issue.)

Anyway, I don't really know why I'm saying all this; because what you need is for some more node-positive women to post here and tell you how well they've done.  In the meantime, hugs to you.  I hope you get the reassurance you need.

otter

Anonymous

Thank you so much, otter.....

diana50

Initially, my surgeon thought i was stage I with zero node involvement. nothing showed up on scans nor were palpable. BUT...once surgeon did auxillary node dissection; turns out 10/12 nodes positive...fully encased with cancer. 

 that was 8 years ago; i am still NED. yes, i did get aggressive treatment...TAC in clincial trial in 2002..rads...arimidex for 5 and half years...but the treatment worked...and i am doing well.

take one day a  time....rest...take care of yourself..the treatments work and you will get through this. don't give up.

diana50

nursecal

Zachsmom, I am going on six years from a DX in 2004 of 14/32 nodes.  Radical bilateral (right side my decision), chemo, rads (the most you can have) and DIEP recon later I am now 6 years NED.  Faith is an important part of all of this, positive thinking maybe as much.  My daughter said she feels guilty sometimes because she has forgotten that I was "sick" because I never showed it.  Chemo is definitely not a good thing, but with all the anti-nausea drugs it is so much better than before.  I worked throughout all my rads.  There are so many things out there to help.........and don't be afraid to do so.  Family and friends are also the best medicine.  It is a frightful journey but it is survivable.  Just look at me........5+ years and counting.  God Bless You and Your Family.

Anonymous

Thank you both for posting this. It is a wonderful thing to read. Bless both of you guys for sharing this.

shawnlo

Ok, this is my first post so bear with me.  I had a similar experience with a surprise  sentinel node positive cancer. I was diagnosed March 23, 2010 with IDC- tumor was 1.6 cent. My cancer cell was grade 3- which is aggressive, but the surgeon did not feel any lymph node swelling. At surgery,( I had a lumpectomy on the left breast, 1 sentinel node was positive, 15 more nodes were removed - all negative and I had clean margins.  There was macro-invasion in the ONE node, so my Oncologist did recommend 4 rounds of CT in addition to radiation and 5 years of Arimidex. I really didn't want the chemo and she ordered the OncotypeDX test, which helps measure the percentage of cancer recurrance. This is a $800 test, but even if your insurance won't cover it, they have excellent financial assistance- so most people do not have to pay for it.

Do discuss  this test with your Oncologist.  There is relevent data relating to Node Positive, ER positive breast cancer patients. My Oncologist , said that if my score came back 10 or lower I would not benefit from the chemo, BUT it came back with a score of  35 which put my recurrance risk at 30 % if I did not do chemo.  So, this info really made my decision clear. Because my son is getting married in July, I decided to complete my radiation first and  I will start chemo August 2- I have had several friends do my same regimen and they all did well- most did not lose a day of work and even played tennis throughout.  Fatigue is the main symptom , but if you keep moving and it will fight the fatigue. Now that I am in your node positive club, I will keep you all posted on my treatment. PS. For the record, I am a very healthy 55 yr old and 3 years menopausal. All my friends were shocked when I got my diagnosis because I am so healthy.

My main advice, is to take your time to make your decisions until you really feel good about it.

Putting off treatment for 2 months will not matter.  Hope this helps.

Medigal

Zachsmom,  I guess being ignorant of what is happening, in my case, worked out fine.  I was diagnosed with bc in 2003 and out of 27 nodes removed one was positive.  I did not find  out until recently that the tumor was 3.2 cm. I was ER+ and PR+ and HER-2 neu positive. I don't know what Grade I am but I guess I didn't pass since   I had a lumpectomy on the right breast and they gave me 35 radiation treatments and about four Chemos. Someone on the internet warned me to be sure they gave me Kytril for the nausea because it is supposed to help a lot.  They did and I did not have a problem with the Chemo. 

I breezed through the 35 radiations and used the cream I was told to buy and the doctor was amazed I showed no negative signs from radiation.  It certainly did not hurt.  Just an aggravation having to go back and forth for treatments.  A year later I was put on Arimidex since I am post menopausal and I finished my five years on it this January.  I am now on my second five year bout and so far have had no side effects I could not endure.  Whenever I did have a side effect I just programmed myself that at least it was helping to keep me alive.  My personal theory is that when it comes to cancer, I will be open to allowing them to do whatever it takes, within limits, to save my life.   As long as you feel you have doctors you can put your trust in, I know they will do their best to protect you and one day you can be reassuring someone else on this site about how great you are doing!  

Anonymous

Thanks guys.

I found out that only my sentinel node was positive - none of the axillary nodes were. I see the onc. on Tuesday. I will of course ask about the test but I had always heard that if even one node is positive AND you're pre-menopausal (like me) there's no escaping the chemo. Also, I had a mastectomy with implants so I'm not a candidate for radiation either.

Would they still order the oncotype test for a node positive pre-menopausal person like me??

Wonderland

Zachsmom,

I had 2 out of 36 nodes positive almost 4 years ago. My treatment was dose dense AC (4 treatments) and Taxol (4 treatments). Then 33 rads. 2 years of Taxomifen and last Sept. I switched to Arimidex for 3 more years. Also last Sept. I had delayed diep reconstruction.

I never thought I was a fighter like the ads say. I felt like I had to give into cancer - meaning, go to my appointments, go to my treatments, take my pill. Make the time to do it all or suffer the consequences. I would say to myself, "Chemo is your friend." Sounds silly but it helped me because I really didn't want to do it!

I learned as much as I could about my tx and any side effects I may have. That really helped.

I didn't find bc.org until last October while I was recuperating from my reconstruction. No matter what lies ahead for you, you will have so much support from all the awesome women here!

Good Luck!

revkat

If you are node positive and premenopausal the NCCN guidelines call for chemo and most oncologists will suggest it. If you can get an oncotype text covered by your insurance it will give you more information, but doctors vary on how much weight they want to put on it at this point, especially for younger node-positive women. Although there is a sample that indicates it is a reliable predictor even for node-positive women, use in that population (I'm thinking that the sample of node-positive was all postmenopausal, but I could be wrong) is so new that we really don't have long term data. And for premenopausal women, most doctors are thinking long-term and would rather err by over treating than under treating. I know that once I really understood why the doctor was coming from a "we have one chance to hit this hard" position, rather than a "if it comes back we'll deal with that then" position, going ahead with chemo made more sense. 

shawnlo

I suggest calling your doc today about the oncotype, because they need to save a sample of your tumor to send out. Visit www.mytreatmentdecision.com or www.oncotypedx.com to find out if it is helpful for pre-menopausal women.

Lastly, about managing worry during this illness. Do whatever it takes to feel calm. If you need anti-anxiety meds or sleeping meds- ask for them.  Your body is already traumatized from the testing and surgery, so feeling mentally calm and rested is so important. I have been on a low dose Effexor and it really stops all the worry. Believe you are in good hands and that your will be around for a long time.

Anonymous

Thanks, guys. I am due to meet the onc tomorrow. I hear great things about Effexor and will definitely ask for some.

I guess I'll just do whatever it is I need to do. I never want to look back and kick myself for not doing something (as I have been for not trying the Tamoxifen after the DCIS last year.) 

DiDel

Zachsmom: I was not node positive but like some of the others I went into surgery Stage 1 Grade 1 and came out Stage 2 Grade 2 once all the final pathology was in. It's definitely a scary time and scary thing to hear. Somedays I still can't believe this is my life. Initially I was not going to do chemo, even after the Oncotype DX Score came in at 17(high end of low) but after much conversation with my docs and realizing how important all the kiddies in my life are I just wanted to do all I could to fight this disease. I did 4 rounds of Taxotere and Cytoxan and tolerated it well. As stated above all the pre chemo meds they give you now really held off the nausea. Fatigue was the worse SE but some days I just kept moving and some days I just gave into it. I am now 6 weeks post chemo and feeling good about the decision. I think it for sure gave me peace of mind that i have done all I could do and that if any cells were lurking in my body they are gone now!! I feel sorta proud of myself, showing a strength I never knew I had. You can do what ever you have to do to fight this battle. Everyone will be cheering you on!!

Good luck!

Diane 

marlegal

ZM, add one more to the list of people who went into surgery believing they were S1G1 and came out S2G2.  One sentinel lit up on me, bu thankfully axillaries were fine.  I did 8 rounds of chemo, 35 rads, 3.5 yrs of tamoxifen and now on aromasin.  I'll hit my 5 yr anniv'y in August and I am definitely healthier now than I was 5 yrs ago.  All through chemo I just kept counting down the treatments and reminding myself that the effects were going to be temporary.  If you go that route, I hope you have great support around you - I think that was key to my overall handling of things too.  Try to keep your attitude as positive as possible and you'll do just fine.  And come here often!!!  Hugs.

rachel5738

I was just diagnosed with IDC--original ultrasound showed tumour at 1.3cm--ultrasound showed no node involvement but Doc did feel some inflammation. Am having surgery on Monday and will anxiously await the pathology--hoping for the best but reading the notes on this site--gives me hope for sure.

ToriGirl

Sistas, my sistas, 

Just found out from my pathology that my sentinel node was positive for traces of cancer cells, so 10 more were taken during surgery and those all turned out to be negative.

So, looks like chemo is in the cards...was hoping it wasn't going to be, but I will do what I have to in order to beat this beast down!

Oncotype test is still in the works, but since I have the one positive node and am pre-menopausal, I'm sure it trumps the Oncotype test.

I head to 2nd oncologist next week to get their opinion and treatment plan...first onocologist is getting pathology results as I type this, so I"m sure I'll hear from him too...If I have to, I will get a 3rd opinion as well...

Tori

deenah

I'm still in the waiting game, but I have learned that scans alone don't tell the whole story.  When I was first dx, I was told by a surgeon at UCSF that she was pretty sure my cancer had not spread beyond the breast and possibly one axillary node that showed up on u/s (she said based on her experience, which is extensive, she can usually tell by the way a person looks and whether or not they have bone pain or other unexplained pain).  Once i got the PET/CT back (after I saw that surgeon), it showed that at least 8-9 axillary nodes were full of cancer and I had traces in 2 mammory nodes and 1 in my neck. Instantly Stage IIIC.  I did chemo first and have yet to have surgery.  I'm scheduled for my bilateral mx Sept 9th.  I just had a PET/CT last week and now it shows no cancer in any nodes and the original tumor was mostly broken up.  I know now not to get too excited because after the path report comes back when I have my bilateral mx , it still could show cancer in my nodes.  It's so scary, so I know how you feel.  Hang in there.

ninap7

WHAT CHEMO DID YOU GET AND HOW ARE YOU NOW

ninap7

WHAT CHEMO DID YOU GET AND HOW ARE YOU NOW