Need Hope Being Node Positive

MarlyD

Hi,

I read a lot about how being node-negative is a good thing, but how bad is it to be node positive (I have at least one positive node)?  Just need a little uplifting information.

Thanks!

Marly

Vickan

Hi Marly,

I do agreed with you I have two positve nodes and know your feeling. So please anyone out there if you would like to give us some "positive" feedback plz feel free....

FloridaLady

Hi Marly,

See your other thread under Triple neg. I left you some GOOOD News.

Girls- Please wait many ladies have had multi nodes and do have complete response to treatment.  I hope they come along soon. I know a lady that had 25 nodes positive and is 7 years out. There is HOPE!  I think the standard is anything under 14 or 15 is still very good.

Flalady

HeatherBLocklear

Hi Marly et al.,

I am node positive (I'm still waiting on the path report, so don't know how many they found), but my oncologist tells me that with chemo, surgery, and radiation, there is still a good chance for a CURE! So be optimistic and hopeful -- I'll be back to tell you more as soon as I have more specific information. Just know that there is LIGHT at the end of this tunnel!

Love,

Annie Camel Teat

MarlyD

Thanks, ladies.  I think we ALL need all the good news we can get no matter what the diagnosis.  I won't know for sure how many nodes are involved until surgery.  I just know that the node in my armpit was "reactive" (and my oncologist says it "must be cancer" in that node), and the one in my subpectoral muscle was positive for cancer.  I am just so worried that it has spread that every symptom I get makes me feel like it has traveled, i.e., to my lungs.  My voice seems to have changed since I started chemo on August 6 and I feel some tightness in my chest, which may be due to the Avastin they are giving me, so, here I am worrying . . .

Marly

HeatherBLocklear

Dear Marly,

In all haste since I have to go to a meeting (oh yes!), but the Avastin will give you a hoarse voice. It's one of the SEs of that particular drug, so don't fret about that. It goes away once you stop the drug.

Hugs,

Annie

Rainenz

Hi Marly

I was dx over 11 years ago and had 6+ nodes and again just over 2 years ago on other side this time with 29+ nodes and so far am NED.

 For me I believe that having positive nodes is a good thing as the nodes were doing their job and stopping the cancer cells going elsewhere.  It is only my theory but it helps me stay focused and positive.

 Take care  

Shirlann

Hi sister, it is not as good, but not that bad, either.  We  had one lady several years ago that had 27 positive out of 27.  She is just fine today.  So try not to stress over this. 

Hugs to all, Shirlann 

dunner1

Hi Marly- I just wanted to comfort you and tell you I had many positive nodes back in Feb. 2003 and I am here today to tell you that. I was triple negative and had a complete response to dose dense AC and Taxol (plus 6 1/2 weeks of rads). I am so blessed to be here! Enjoy each and every day! My husband 1 1/2 yrs ago was diagnosed with Myeloma so living for our almost 6 yr. old is our only focus! Having a positve attitude and praying to God for all He has give us is why we are here today. God Bless!!! Dunner

Caya

I have a friend who had 9 positive nodes - she's 11 years out, NED.  She has been my inspiration throughout this mess.

MarlyD

Thank you all so much for responding.  It is a comfort to know that there is hope, even though I have node involvement.  As you all know, this is a scary journey we are all on and it's such a blessing to have women who know what you are going through to give you a boost now and then.  I will keep my spirits and hopes up as I continue with my treatments and try not to worry too much   I look forward to hearing about all of your progress and will keep you updated with mine--and thanks, Annie, for the reassurance about the hoarseness.  Just my mind working overtime!

God BLESS you all!

Marly

Boo46

Hi MarlyD

I'm trip neg, had 5/22 nodes. Am 2 years out and NED. There is hope.

Hugs

Sue

HeatherBLocklear

Marly and everyone,

I just wanted to share the article at the link below with all of my node-positive sisters. Although the piece is from 2004 (i.e., not recent as far as medical articles go), it still explores a very strong correlation between clinical response to chemo in the primary tumor and an equal response in positive nodes. I have found this particular article to be of great consolation; hopefully, my path report will show that my nodes have reacted as well as the breast mass (which, by the way, the BS was unable to locate visually during surgery -- he had to go by the wire and the chip he inserted during the core biopsy).

http://www.indianjcancer.com/article.asp?issn=0019-509X;year=2004;volume=41;issue=1;spage=13;epage=17;aulast=Arimappamagan

Hugs to all,

Annie

cmb35

Hi Marly, triple neg/node pos here, 3 years this May and doing fine - best of luck to you!

MarlyD

THANKS, ALL!!!!! 

Annie, I will be sure to read that article, and that's great news  Hope your path report is just as great.  Let us know!

Marly

HeatherBLocklear

OK Marly -- here's the dope:

I had a 7 cm+ tumor with tons of positive nodes. Triple negative, grade 3, very, very nasty. It actually grew from 4 cm to its ultimate size in UNDER TWO MONTHS, and also invaded my lymph nodes during that short period of time. In other words, I'd be dead or dying today had I not had very aggressive treatment immediately following diagnosis.

My pathology report yesterday, following 8 rounds of chemotherapy, shows that the chemo has most probably killed everything -- including the cancer in the lymph nodes. The breast surgeon removed 19 nodes; although they were matted and scarred, there was no viable cancer left in any of them.

According to my medical team, my prognosis is now excellent.

Marly and everyone else who has locally advanced, node-positive breast cancer -- the battle can -- and WILL -- be won!

Love,

Annie Camel Axilla

FloridaLady

Annie,

Praise God! You killed the beast and won!  This is good news for so many node-positive sisters.

Flalady

MarlyD

Annie . . . that is ABSOLUTELY FANTASTIC news.  I am SOOOOOO happy for you.  You must be on Cloud 9!!!!!!  It gives me great hope to hear your story that my (and everyone else's) battle with triple-negative breast cancer and and will be won.  I am going in for my second round of chemo tomorrow and was not looking forward to it at all . . . now I feel optimistic that it is going to take care of this nasty thing going on inside me.

What type of treatment did you/are you have/having?  I am in a clinical research at Massachusetts General Hospital in Boston which consists neo-adjuvant chemo every 3 weeks of 4 cycles of Cisplatin/3 cycles of Avastin, then surgery, then 4 cycles of Adriamycin/Cyclophosphamide plus Avastin every 2 weeks, then 4 cycles (every 2 weeks) of just Avastin or Avastin and Paclitaxel.  Radiation will be determined after that.  Am also considering a bil-lateral mastectomy.

Again, thank God your treatment has gotten you this wonderful news.

Thanks for giving me HOPE!

Marly 

SoapMaker

Hello ladies. I was triple negative, with large tumor, positive nodes, extensive angiolymphatic invasion, multifocal spread, grade 3... That was 6 years ago...no recurrence.

Remember that triple neg may be the most aggressive cancer, but it is the easiest to kill. Many women fear having triple neg over positive. Since I HAD to have cancer, I am thankful that triple neg is the one I got. with triple neg, the farther out you get, from diagnosis, the less you have to worry about recurrence, whereas, women with positive receptors will have to worry and look over their shoulders for the rest of their lives. They have to take extra meds, some of which are dibilitating and they have to watch the things that they consume, so as not to take in extra estrogen. With triple neg, there has not been one reported case of recurrence in any woman who has been cancer free over 8 years. Though there truly is no cure for cancer, they are saying that if a triple neg reaches 8 years cancer free, she can consider herself cured. Also, with triple neg, once you reach the 2-year cancer free mark, chance for recurrence starts to drop rapidly. By the time you get to five years cancer free, you are at the same place with positive receptor women who have taken the inhibitors for five years. From that time, triple negs go on to reduce their chance of recurrence as time wears on, where positive women do not get that chance. Since we just HAD to have cancer, we are very lucky to fall into the triple neg group. Many women are scared to death when they hear triple negative, but the only difference is that we do not have any further treatment available to us other than surgery, chemo and rads. Like I stated above, once we get to the five year mark, we are equal to women who have taken the extra meds. That is the only difference. So, though we are afraid of having cancer, period, rejoice in the fact that you DO have triple neg.

One last thing. Try to help yourself as much as possible. I don't know if you believe in supplementation, but I truly believe that it helped me to get where I am. I would make a "cancer cocktail" and take it every day. It consisted of many natural COX2 inhibitors, IP6 with inositol hexaphosphate, vit D3, with calcium and much more. COX2 inhibitors limit the growth of the cancer's vessels. One other thing...cancer loves sugar. It cannot live without glucose. Take away the glucose and the cancer dies rapidly. Though we cannot eliminate glucose in our bodies, because our bodies make it naturally, but we can go to a lo-carb, lo-fat diet. Every little bit helps.

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Where is the cure

www.truefacesofbreastcancer.org

MarlyD

Cin56,

 THANK YOU!!!!  That is WONDERFUL news for you . . . and all of us ladies with TNBC

Marly

FloridaLady

cin56,

Did you take supplements during chemo?  I do...but I know most don't. I believe it has helped me maintain my body through treatment with very little side effects. 

Flalady

Flalady

SoapMaker

No. No supplements during chemo, to include 4 weeks after completing it. Anitoxidants cannot tell a cancer cell from a normal cell and will protect both. Some supplements interfere with chemo. I had already known, via research, but my onc told me no supplements during chemo. Once it was over, I devised my cocktail and took that so as not to give any microscopic cell the chance to grow any vessels. A person can live with cancer in their bodies, forever, as long as the cancer does not grow and spread. That is where the trouble begins. That is also why, if a doc can't bring a patient into remission, he or she will try to stabilize the cancer. COX2 inhibitors interfere with vessel growth, which we truly only need to repair injury. Ginger is a great COX2 inhibitor as are other natural substances. I take ginger to this day...though not every single day. I could go on and on, but let me stop here. Don't want to hijac this thread and bore anyone with all of this.

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Where is the cure

www.truefacesofbreastcancer.org

nosurrender

I am seven years out from my triple neg dx.

IT CAN BE BEATEN!!!!!

FloridaLady

cin56,

Well...standard treatment has never gave me stabilized disease...so I chose to do what I can...why the doctor do their guess work... on what to do to me next.  Only time I was stable was using my protocol after completing surgery and having only a small amount of disease.

Flalady

SoapMaker

We must all do what we have to do to survive and if that is what is working for you, then you are doing the right thing. Prayers sent up for you. Praying that they find the right protocol for you. In the meantime, read up on ip6 with inositol hexaphosphate, allicin, enzymes, etc.

One thing about the cancer cell is that it is very sneaky. It covers itself with a protein shell and hides itself from our army killer cells. I figured, okay, if it has this protein shell, then how can I get rid of that??? Protease. Enzymes. Seems like I looked into and took all of the stuff that showed promise in inhibiting cancer growth. All I can say is with the poor pathology that I had, my onc was expecting me to recur at any time. After coming down with a horrid flareup of sciatica, after  Taxotere, my onc sent me for a MRI and wrote in my chart "Suspect metastasis." Thankfully, I didn't have mets, just sciatica...but he was expecting mets at any time. I truly believe that the things I was doing to help myself made a huge difference. I do believe that supplements can be effective, but not as a treatment in itself. I believe in the chemo because I know that it saved MY life. Supplements I used to help myself along.

I did a writeup on some research that I did that you might find interesting. If you want to read it, go to www.bcsisters.org and scroll down to "Your Research Info". Click on the thread and go to "my research findings", parts one and parts two. There is some really interesting reading in that writeup. It has to do with cancer and inflammation.

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Where is the cure

www.truefacesofbreastcancer.org 

FloridaLady

Thanks cin56 I scoot on over and check it out.  I do enzymes treatment and have all along. I did protease for a while...maybe I'll go back to it. I will also look up your other recommendation.  I do limit what I take while on chemo.  I only take stuff what will support my blood, heart, liver and kidney health while on chemo.  I do take some other complimentary supplements that I have research and feel it would not compromise the chemo. I have done my research over the past three years.  After seven differenct chemos and pretty much zero response...I was pretty much told after my tumor triple in size on ACT that I was probably chemo resistant. So far their right. Talking about a bad path report...I was given three to six months to live after my first mast. three years ago. When you hear your doctor stand outside of your door and tell another doctor, you have the most aggressive bc the seen in a long time...it's not a good thing.  I have manage so far to have no side effects to three years of treatment other than neuropathy from a bad trial.  I've been able to work full time through my treatment.  So I'm always looking for more information to stay one step ahead of this battle. 

Thanks for your help.

Flalady

SoapMaker

Sending you many, many blessings. Sounds like you have done a lot of research and are really on top of this. You are one strong lady.

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Where is the cure

www.truefacesofbreastcancer.org

Lee27

Hello,

I had 5 live nodes left after chemo & surgery...and still going NED trong after a year. I had rads as well.  I believe that was just what was left over. My Onc said she liked the way I thought and believes the same. Blessings to you.

MarlyD

Hi Lee, thanks and best wishes for continued NED!!!!!!!

StefS

Just wanted to chime in that I had 21/21 nodes positive and several of them were matted together. Aug 2003 is when I got my diagnosis and I am doing great right now. Dancing with NED! Positive nodes are just doing their job.

March907

Why are you all so positive?  Triple negative is bad news.  Alot of us are going to die soon.  Don't you get it?!   I had five months NED after initial treatment.  Now I am back on chemo.  I had 21 positive nodes.  It doesn't bode well.   Sorry   Christine