Too Many Positive Nodes and Reoccurance

Faith in Him · 07-22-2007, 06:41 PM

I hope that I do not come across as being insentitive to others but I have to ask for my own peace of mind.

I am her+++. er-, pr- with a whopping 18 positive nodes. I am extremely obssessive about that number. My onc tells me that being high risk for reoccurance does not always mean that a person will have problems in the future. I so want to believe him but I am a little concerned of course.

Anyone else doing well with the same dx as me? And is herceptin and Tyberk (sp) all we have to fight this since er and pr is neg. ?

Blessings to you.

Mary Jo · 07-22-2007, 07:01 PM

Hi Faith in Him (I have Faith in Him also

)

I did not have 18 positive nodes, just 1 but did want to respond to your post to help put your mind at ease.

Sadly, in the cancer world there are no guarantees about anything. I've known stage 1 people to go to stage 4 and stage 2 or 3 to stay "no evidence of disease" for a very long time. I've known people with no node involvement to have a recurrence and those with many nodes involved not have any mets or recurrence.

There is no rhyme or reason to this disease and you are right in having "faith in Him" He is really the only thing that can give you that true Peace.

Hugs from me to you,

Mary Jo

Mary Anne in TX · 07-22-2007, 07:18 PM

Hi!
Mary Jo is so right! If this disease was that predictable, it would surely make it easier on all of us. But it's not! My onc's wife was diagnosed 12 years ago with (I believe) 23 positive nodes and she is going strong now.
Yes, we are more likely to recur, but some of us are so hard headed and determined that we just keep beating those odds. We do the chemo, rads, and scans, and meds and all the rest and we stay vigilant! This remarkable group of warrior women and men are the best source of knowledge and sanity I know!
We're learning together and praying for each other as the oncs and researchers are working to find that "magic bullet"! Ask lots of questions and be your own best advocate.
Keep trusting Him to guide and protect you.
Blessings to you, mary anne

Connie Jean · 07-22-2007, 07:53 PM

I had 20 positive nodes and like you it scares me, as I rarely see anyone that has had that many positive nodes. Like you I have faith in Him for each day He gives me. I was diagnosed 2 years ago, stage IIIc. I had a left radical masetomy with reconstruction. I finished chemo amd radiation March '06. I have been on herceptin for a year and a half. I am NED! No recurrance or mets. With my diagnosis, that is a miracle. My onc would like to see me on Tykerb now, but FDA has only approved it for metastatic cancer. But I am working on getting it approved for me.

Love and prayers,
Connie

Alice · 07-22-2007, 09:21 PM

I don't know about you but, as I see it, you are either 100% no recurrance or 100% recurrance. No one has the crystal ball to know which each of us are. I know that there are factors that indicate which one we might be in, but they are just indicators. Otherwise they might have to put me in the looney bin.
LOL Alice

BonnieR · 07-22-2007, 09:39 PM

You were not being insensitive, don't worry about that. I am new here myself but am finding this a safe place to share concerns and to receive heartfelt support and advice...

saleboat · 07-23-2007, 04:18 AM

Hello,

I know the feeling-- having so many positive nodes was quite a shock. You have some great drugs on your side, drugs that until 2005, most women were not getting with their treatment for early stage breast cancer. For me, I believe that it has made all the difference.

Just wanted to write-in and let you know that yes, you can survive this disease despite many positive nodes.

My best to you.

Jen

Audrey · 07-23-2007, 01:18 PM

Hi Faith in Him, I just wanted to let you know that I had 11+ nodes (with a huge tumor) almost six years ago and am doing fine. I used to separate myself from all the success stories I heard, thinking "Well, she's doing okay, but she only had 4 positive nodes and I have 11!.." nothing could cheer me up. But slowly, time passed and I kept making it through another day without a recurrence. Also, I met my friend, Michele U., on this website, who had something like 32+ nodes and she's doing great 4 years after diagnosis. Meanwhile, my neighbor was diagnosed at Stage 1, er+/her2- with no node involvement and a great prognosis, and where is she today? You guessed it--Stage IV with mets to bones, liver and brain (still doing pretty well, though, on her treatment and successful gamma knife to brain mets). Someone once told me when I was feeling so panicked about recurrence to just relax and pretend I was in water, not struggling for breath but lying back and floating on faith-- it really works for me, hope it helps you, too.

Donna · 07-23-2007, 02:42 PM

It is so hard to take it day by day. Today was the first time I have cried about it in over a year. The point of that: as each day passes all of this "stuff" gets less and less important and urgent. Life goes on.

And Audrey, I love your relaxation image of floating in water! I literally do go to the gym, do my laps and finish it off with a relaxing float in the water.

Best thing to do now is pray, have faith, eat right, get exercise and log into this forum twice a day!

Best to you,

Donna

Faith in Him · 07-23-2007, 03:54 PM

Hi all. Thanks for your replies. I can take a deep breath now. I guess I came to the right place. I'll take things one day at a time, knowing that He has a plan for me.

God Bless.

LAURIE · 07-23-2007, 04:35 PM

I feel your anxiety. As a matter of fact, I feel it everyday and maybe every hour. I have been anxious lately. Thank you and everyone reminding me that even if I reoccur that I will be fine.

tricia keegan · 07-24-2007, 11:00 AM

My friend just celebrated her 20th anniversary of bc diagnosis! She has had no recurrance in that time and is doing great still. She had 22 positive nodes and was given a poor prognosis at the time,she was also er & pr -
Just thought it may reassure you as it does me!!

romo9 · 07-24-2007, 05:14 PM

Hi ! I am also in the same situation as you with 18 positive nodes. Its now 2 years and nine months since my diagnosis.
Pehaps this may help.
There are persons who shape their lives by the fear of death.
And persons who shape their lives by the joy and satisfaction of life.
The former live dying;and the latter die living.
I know that fate may stop me tomorrow,but death is an irrelevant contingency.
Whenever it comes,I intend to die living.
I have no fear of death because I feel that I have lived.
I have loved and been loved.
I have been challenged in my personal and professional life and have managed,if not a perfect score,at least a passing grade and perhaps a little better than that.
I have left my mark on people and I have come to a point in life where I no longer need toleave my mark on people.
I can look forward to the last act of my life however short or long it may be,in the knowledge that I have finally figured out who I am and how to handle life.
There is no way to prevent dying.
But the cure for the fear of death is to make sure that you have lived.
Harold S Kushner.
So look up skiing again after 20 years. Those black runs dont scare me any more!! Romo

dhealey · 07-24-2007, 05:30 PM

Romo9,
Thank you for your post today. I am having a bad day today feeling really down about this whole breast cancer thing! Fear is my greatest handicap. Your post has been very uplifting and inspirational. What you said about dying while living is great. It will be my new motto!
Debbie in North Carolina

Mary Jo · 07-24-2007, 06:57 PM

Hi Romo,

Just wanted to tell you how much I loved your post. It totally sums up how I feel about my life but could never have phrased it so eloquently. Thanks for sharing it. It was awesome. I will print it out and keep it most definitely.

Mary Jo

dlaxague · 07-25-2007, 07:03 AM

Romo, thank you for posting that lovely poem. I was one worried ball of anxiety after diagnosis, obsessing over prognostic details, as many of us have done. Trying to reassure myself by hearing other's stories of survival didn't really help. What did help was turning my focus to living fully right now and letting go my illusions and desires about control. Your poem says that well.

Faith, I had written the post below several days ago but couldn't get the formatting right in the quote at the end. Romo reminds me to send it, so I'll spend a few more minutes retyping so the listbot will let it thru.

Dear Faith,

To answer the questions that you asked - yes I know of women with many positive nodes (more than you) who are long term survivors with no recurrence.

In addition to Herceptin and Tykerb there are many chemos that can be used when needed for ERPR- cancers. And ERPR- cancer tends to respond better to them than does ERPR+ cancer so that is a good thing.

There's another question that you didn't ask, but it was in there and we all have struggled with its answer. How to live our lives while dealing with the fear and uncertainty that our diagnosis has brought to us?

To me, that's the MOST important question. The answer's probably a little different for each one of us, and if this starts a discussion you'll see the wonderfully wide range of approaches and perspectives.

The answer is not (as most of us have found out thru direct experience, smile) looking for prognostic and survival information that can tell us what will happen to us. I can remember doing that, so desperately - I think because it gave me an illusion of control - that lovely control that I didn't want to realize I didn't have (and had never had, hah!).

I think eventually most of us sort ourselves out into one of two basic ways of living. Either we make it through treatment, suppress the fear, and leave cancer behind - that works for some but probably those women are not on this list. The other strategy is to accept the uncertainty. As much as we wish we had control, at least enough to control to know what will happen - we do not. Wishing and hoping and obsessing will not give us control of what is to happen. So we try to accept the uncertainty and use it to motivate us to live our lives fully, right now - which is the only time that we have.

I'd heard that cliche about "living in the moment" so many times, before cancer diagnosis. I thought that I knew what it meant. But not until trying to figure out how to proceed after diagnosis and treatment did I really understand, on a heart level, what it meant. For me, it means not allowing fear about the future to cast even the smallest cloud over my time right now. What worked best for me in achieving this was the reasoning that if I was going to have less time here than I'd always assumed, I was not going to allow fear to cause me to waste a single moment of the time I do have. I like this quote from MaryAnn T. Romano, who says it much better than I can:

Just as disease was present before your awareness, so illness can persist beyond physical recovery from cancer. When you learn that you have a serious disease, you want it fixed. You seek treatment for cure...to rid your body of the disease. You also wnat something more...something not only impossible, but detrimental to healing. You want everything to go back the way it was before illness. You imagine that the way to wholeness is backward, rather than the forward journey you must make.

Serious illness takes you to life's horizon. Yet, here at the edge is the first step of the beginning of the healing journey. It opens all other healing pathways with the gift of present moment living, that is, the awareness that the now is, in reality, the only reality. You have a choice here as well. Use this moment in wishes or regrets for a time past before cancer...or with dread and fear for your future. In either case, you will poison the present and miss your opportunity to live this one moment to its fullest. Individuals who are healed have accepted the "precious present" as the only real reality. They live in it and rejoice in it. They are the happiest, most healed persons you will ever know."
Mary Ann T. Romano, PhD

hutchibk · 07-25-2007, 08:40 AM

That is wonderful. Thanks for sharing. I will add my favorite new quote that I am borrowing from someone else here on the site... "we can't direct the wind, but we can adjust our sails."

michele u · 07-27-2007, 09:22 PM

Dear Faith in Him,
Yes, i had 35 positive nodes! All the nodes they took out were positive. I'm going to be 4 years out next month, no recurrence. I'm getting my port taken out on monday. i was going to wait til 5 years but it is not working---so out it goes. Don't get caught up in the number game. Cancer does not follow direction very well! It does wants it's going to do--not what the dr's tell us. I had a year of Herceptin at dx, that's what is helping fighting this from coming back!! If you have any questions, please email me at mulmer@mainstaycomm.net

michka · 07-28-2007, 12:31 AM

Hi everybody,
Speaking about positive lymph nodes I have a question that keeps filling my head and you may help me: I had neoadjuvant chemo before mastectomy. I was T2N1. The chemo shrunk the tumor from 3 cm to 1,2 cm. The pathology report of the axillary node dissection indicated 3 positive out of 5. I understand that the chemo worked partially which worries me a lot but why only 5 nodes? Why so little? Did the others disappear? Does this mean I will never know how many I had to start with? Did they not take out enough nodes?
I'll take all opinions about this.
Michka

michele u · 07-28-2007, 08:16 PM

i think you are right about not really knowing for sure if you have neoadjuvant chemo. You could have had more, but as you can tell by this thread, that the rules don't always apply to lymph node numbers anyway, esp since Herceptin is around. You are going to be fine if you've had more lymph node involvement or not!!