To pursue treatment

kathleenk

Had  modified radical mastectomy yesterday. Just heard from surgeon 9/9 nodes positive. My instincts as a person and hospice nurse say no further treatment and opt for quality over buying time with chemo/radiation. Anyone with this experience? Thank you.

dlb823

kathleen!  No!  I have seen so many women on these boards treated with many positive nodes!  And the fact that you're Her2+ gives you a whole additional treatment -- Herceptin.  I am sure you're just in shock to find out that you had multiple positive nodes, but by no means is that a death sentence or anything close to it! 

I would also suggest that, depending on the # of responses you get to your post, you may want to re-post it under another topic, as the one you chose (I know, it's confusing at first -- so many topics & threads) will be most read by those who have been battling bc for a long time -- not women in your situation.

My only other advice at the moment is that, if you don't already have one, you find yourself a positive medical team that will give you cutting-edge treatment and hope!  You deserve both!

I hope your mastectomy healing is speedy ~ (((Hugs)))   Deanna

lovinmomma

I am getting treatment and I was 26 of 26 nodes positive~~

lexislove

kathleen, please reconsider. Being Her2+ you are able to get Herceptin.It has changed the odds dramatically against us Her2 gals. There are many woman on here who have had double the nodes positive and are going on 5 years and more.

Check the Stage 3 page and post an introduction about yourself you will have many woman replying!!!

ElaineD

It sounds as if you're still in shock? Give yourself a few days to consider your options fully-chemo really isn't too bad at time, you know! So many meds to make it more manageable. However, if you decide that you want to let nature take it's course, that is entirely your decision, and one which should be respected. There has been a very similair topic discussed recently in stage 1V, where unanimously, we agreed that the poster was quite right in making the choice that was best for her-reading this may give you some further thoughts

http://community.breastcancer.org/forum/8/topic/736822?page=1#idx_16

Crystalady

When I was first told I was Stage 4 I was led to believe my only option was Radiation and Palliative Care.

I was shattered.

But now I'm feeling much more positive. There are treatments out there but many people have the attitude that why would you put yourself through all that.

That's Easy. We want to live and will go through just about anything to make that happen.

You will see many women on this site who give inspiration to others and also information that you may not get even from your doctor.Some have had mets for more than 10 years.

Good Luck and don't give up.

Sandra

KerryMac

I would say go to the Stage 3 board too - you will find all sorts of women with many more + nodes doing very well. I have just finished Chemo and Rads, and although it seemed endless at the time, it is "doable". There are really many treatment options open to you.

wayover20

Hello Kathleen!  I totally respect your position but please understand positive nodes does not mean the worst prognosis. 

When I first got the diagnosis and started chemo, my best friends stated to me that if she was given this diagnosis she wouldn't do any treatment at all (her mother died of bc).  She figured whats the point, you're gonna die anyway.  The way I see it is I owe it to my daughter and brothers and sisters to at least "try" and fight.  I didn't want them to think "she didn't even try to beat it", or "I guess we're not important enough to live for".

We're all going to die, that's for sure whether you have cancer or not but for me it's about quality of life, not the end result.  There are way too many ladies here that were given much worse news from the get-go but are kicking butt and living life well despite it.

You have alot of things going for you, I wish herceptin was in the plan for me.  Whatever you decide I respect you for it.

ilovemysweetmomma

Hey Kathleen, I'm sorry for what you're going through, but I also believe you have a ton of options.  I understand that QOL is very important for you, but you can still have a good QOL and be on chemotherapy.  Some are worse than others, but it is all up to you.  You can get hormone therapy, targeted therapies, there are just so many options out there right now.  And researchers are making progress all the time.  I would strongly urge you to look at all your options and get a couple of opinions for different doctors.  Best of luck in everything, and keep us posted. 

DFW

Kathleen,

You said mets. Why do you say that? Positive nodes are not mets, most of us here had positive nodes. Do you have cancer elsewhere?

YATCOMW

kathleenk

I will  tell you that I thought chemo was somewhat of a breeze and I was given a pretty heavy load of chemo cocktails..... I took one chemo slowly over 48 hours out of a satchel around my waist I wore under my clothes and sat through business meetings and made presentations....no one had any idea I had chemo being dumped through my port......I wouldn't assume it is not doable or that it won't work for you.

I am over 5 years out with 17 nodes and an 8 cm tumor.....so much has happened these last five years that I would have and did do everything not to miss it.  I saw my oldest go off to college....traveled through Europe with my wonderful husband....took each of my kids on a special trip just for them.....got a new puppy....my daughter sang solo in a play.....the list goes on....

You can do this and I am sure everyone here will help you get through it!!!!

Fists Up!

Jacqueline

lexislove

Jaqueline I'm so glad you posted to kathleen.

Kathleen, have you given any of this much thought? Please let us know how you are doing when you can!

dreamwriter

Maybe you are looking at this from your job's point of view.  However, before getting there .... is another world - a medical tornado.  People above that know more than I have given you support and opinions.  All I can offer is a hug...... (((((Kathleen)))))

Jaimieh

Kathleen~ Sorry you got to join us but I wanted to also let you know that there is someone on the HER2 board that I believe had 35 + nodes that is 4 or 5 years out and she is still NED.  ((bighugs))

kathleenk

I had a IDC mass in left axilla in addition to nodes. The hope was more aggressive surgery would obtain clean margins but it didn't work out that way. I can't thank everyone enough for your support, especially the hugs. I realize in my line of work  that I don't get the most objective viewpoint. I am literally taking about an hour at a time recovering from surgery which is going quite well I think. As my very wise 5 y/o grandson says," Baba, that's a big owie, I wish this did not happen to you" Hearing from all you gals who are enjoying life means everything to me. THANK YOU.  Kathleen

KerryMac

Kathleen - glad you are feeling a bit more positive. I think this article might help improve your outlook too....

http://www.pslgroup.com/dg/25a522.htm 

dlb823

Kathleen ~ I'm also glad to check back here and see you feeling more positive.  I honestly think your initial reaction, although totally understandable, was way overly pessimistic.  You will have some rough months ahead with chemo and rads, but you'll get through them, as we all do, and God willing, you will have many more years ahead.

I just want to reiterate how important it is to have a medical team that treats a lot of bc and is totally up on the latest research, in which case they should also be very positive about your treatment and outcome.  If you have any doubts about the hands you're in, I know the University of Colorado at Denver has an NCI-designated Cancer Center in Aurora, which would be my first choice if I was in the Denver area.  And places of this caliber will often give you a second opinion that you can compare to the treatment plan you already have, even if you end up getting treatment more locally.  

Glad your recovery from surgery is going well!  Keep us posted on your progress ~  Deanna

EWB

Kathleen- you have a very wise grandson! It IS a big owie and it will take time to heal, wrap your mind around it and all it means. Give your self time, treat yourself as you would a good friend---gently, with kindness,  patience and love.

Celtic_Spirit

I had 9 positive nodes, Kathleen. I did chemo and radiation (summer and fall 2008) and am now taking tamoxifen and receiving zometa. Chemo and rads weren't the most pleasurable experiences in the world, but doable. 

One year later, I'm hiking every weekend, dancing, walking, and planning a bicycling/photography trip to San Francisco in late August with my boyfriend. I have an insane amount of energy and feel great. Two of my needlework pieces won blue and red ribbons at the county fair, and I'm teaching myself javascript. So much to live for! You do too! Please come visit us on the Stage III forum.

And consider this: writer Susan Sontag was diagnosed with bc in her early 40s and had 30+ positive nodes. She lived a full and exciting life for another 30 years, dying at age 70...but not from breast cancer.

Maura-Elizabeth

My mother had a radical bilateral mastectomy with 21 pos nodes, ER pos, and lived "clear" from 1995 to 2007.  Treatment!  Even now with recurrence we are not ready for hospice (I hope).  Go for it and get a good set of inputs from good oncologists and be ready for a long life ;-)

saint

Kathleen-----maybe being a nurse means you know enough to scare the crap out of yourself! As most everyone here has said---go for it! If those cancer cells have not yet met chemo or rads you can still be considered curable------I am not---but believe that the last 5 years of tx, tho difficult, have given me more time! I have had more good days than bad & would not suggest going on without giving tx a try-no matter WHAT stage you are!!

we care--let us know how it goes.

Be well & stay strong 

Marsha56

Kathleen,

I am Stage IV, I was told I had maybe six months to live. Well that was 13 years ago!!! I has IDC with a 9cm tumor 17 postive nodes.... 7 years later liver mets,bone mets, neck mets chest wall mets I could go on but the bottom line FIGHT for LIFE and enjoy the journey!!!! Please feel free to ask me anything and now that you are in my thoughts and prayers~

Marsha56

saint

whoohoo marsha---I want some of what you've got--TIME!!!!  Happy DANCING for you!

carol1949

Wow!  So glad to see all the encouraging notes to you, Kathleen.  If you are a nurse, you perhaps also know that the medical tx is only part of the healing equation.  I have a friend who is 11 years cancer free and did it holistically.  Say what you want, but 11 years speaks to my heart!  I highly recommend for you to consider some research on alternative and complimentary therapies.  I found You Can  Heal Your Life by Louise Hay to be most helpful to me.  Most recently, I started Reiki and it is the most profound experience I have ever experienced.  I also would recommend for you to read Dr. Patrick Quillin, Beating Cancer With Nutrition.  Keep up your inspiration for healing... It is possible!!

mammalamma

Hey, Kathleen.  My eyes filled with tears as I read about one more sweet soul entering this bittersweet boat.  But then I read that you're a hospice nurse, and I want to scream!!!  Why, you say?  Because every time I've needed home care [now palliative], the nurses have been so awesome; somehow I guess I had hoped that there could be some kind of universal insulation for people like the nurses I've met, who have seen already way too much sorrow.  You guys keep rolling up your sleeves and come in to situations that cause the heavens to tremble, and now you have to be on the receiving end of this care?  Nuh-uh!  Not fair!  Kathleen, I'm a Physician Assistant, and I do think that  training and experience in medicine is double-edged.  The honesty and courage that is essential to doing a great job become the very things that increase your burden disproportionately when you get sick.  I am so sorry for you right now.  I will be checking back to see how you are, and how your decision making is going.  You know all too well that this is a beastly disease, it changes us and everyone around us.  Hope that you continue to feel the true closeness of this awesome group of ladies.  We are all so different in so many ways - age, race, geography, etc..  but somehow this all fades away and [I, at least] have learned that we have so much more in common than we could have ever realized.  We need, and are needed, in this in a way that is new to me.  It's hard, but it's good and right.   Blessings, Marykay