Positive lymph nodes

Anna-33

Is there any other young women out there with many lymphnodes involved? What have the doctors told you about prognosis? And do you get Zometa?

Shellsatthebeach

I have six involved. My oncologist seemed unconcerned. Said she has many patients with more lymph node involvement doing fine. I go to Dana Farber where they see many patients with complicated cases. I felt better hearing I was not at death's door. There are women on this board with more extensive involvement going ten years plus. My oncologist wants me to go on bone medication. Do you have any SE with Zometa?

juniper

I had 18 nodes involved. I am 10 years and change from my initial diagnosis. I get comets twice a year and am on herceptin for lufe

Kicks

Well - I'm not 'young' by years but very 'young' in loving and living llfe. I was 63 when DXd, now 71. Still NED!

I'm IBC so that was more of concern than being Stage IIIC. 19 nodes were removed and all 19 were positive.

I've been on Femara/letrozole for 8 yrs as I am ER+/PR- so will be on it 'forever'. I had been osteopenia for yrs pre DX and have since gone on to osteoporosis as was expected with my HUGE family HX of it so am now on Risedronate.

It might be easier for others to reply to your questions if you mentioned what you were told your prognosis was.

Amelia01

How reassuring to see these posts of long term survivors! I had 16/21 nodes positive and my team seems to shrug the number off saying that it isn't as much of a factor regarding prognosis as is the type of tumor (ER+ being more influential).

It does mean that the tx is the all guns show - chemo + rads + hormone therapy.

They keep telling me it is "curable": Those words me a lot to me. That is as far as prognosis goes.

Anna-33

My oncologist did not want to takk about prognosis... He said "the situation is What it is, and your diagnosis is as it is".... This only concerned me..

PVM

Hi ladies thought i would join in as well on this thread, i had 8 positive nodes out of the 14 taken & like Anna am worried of recurrence but like Shellsathebeach my MO & RO don't seem to be worried. Unfortunately with me i had the cancer for at least 2 years before being diagnosed hence all the positive nodes. Amelia my team pretty much told me the same thing too, they are not worried. I know its hard not too but seeing other long term survivors like Kicks & juniper is amazing!

Kicks & juniper congrats & its very reassuring to see you lovely ladies doing well & kicking C in the butt & Kicks you are young, young at heart

lkc

I had 12 out of 14 positive nodes. My sentinel and axillary nodes were totally replaced by tumor and extra encapsulated

That was well over 12 years ago and I am well and living large beyond BC.

Castigame

Ikc,

You are an inspiration to us!!

marijen

Thank you Linda K. That is awesome! Besides surgery did you have any other treatments

Anna-33

How do you know that it started at least two years ago? It sounds like me....I went to two differen doctors three years ago, but they did not send me to mammo or ultrasound so the lumps developed further...

PVM

Ikc i have to agree with Castigame you are most definitely an inspiration to us, thank you so much for sharing

Anna if your asking me how i know it started 2 years ago that's because my BC is a bit different. I did not have breast involvement, mine is under my my axilla. Its been over 2 years that i have had problems with my right arm, i could not stretch it properly & i would hurt. I went to the chiropractor to see if it would help & nothing. I think because i was younger & somewhat healthy & no cancer in my family no one ever suspected it to be BC so nothing was really done. I had blood work done & mamo & nothing showed up until i finally got a large bump under my axilla. Once i had the biopsy done it came back positive. Still my mamo & blood work came back good with no problems. Long story short had i been more proactive 2 years ago & maybe ask for a biopsy or even an MRI or CT scan things would have been different. Im glad though i finally got these tests done if not i would still be living my life without knowing i had cancer & it would have possibly spread & been much worse.

Anna-33

PVM ... just like me... I had clear mammo ... axillary lumps in the end.... They told me I was too young (31 and pregnant)..

PVM

I am so sorry Anna we are pretty much in the same boat & similar situation. Unfortunatly it's a different form of cancer that mamos do not detec but it is considered BC. It's a hard situation we are In, not only am I cincerenced with developing LE but also & most important reocurrance. However there are so many wonderful ladies on this thread that have had poss nodes & are doing amazing & are an inspiration. We cannot let cancer take more from us than it already has.

Jojobird

I am almost two years out. 21/21/ nodes positive, and a huge tumor, triple negative. NED! And triple negative to boot.

I'm so inspired hearing about all the long-term node-positive survivors. Wishing you all strength and long lives ahead!

dtad

Congrats to all! What a great thread...

PVM

congrats jojobird another wonderful inspiration to us just ending our treatments

lkc

hi again,
I did A/C , Taxotere and Herceptin, which had just been approved back then!
Ladies, there are many many of us out there doing well, just like me ( I keep in contact with quite a few of the oldsters )

Anyway, it Will get easier with the passage of time the fear if recurrence will diminish. My " Uncle Fester" days are barely a memory.

My wish for all is a joyous holiday season filed with love and peace.

Linda

Anna-33

Do any of you use aromatseinhibitators? Night sweats???

7of9

it just occurred to me that I am 2 yrs out after diagnosis which had 10 of 14 nodes. first time around no nodes ( supposedly wrong!!) but I had stage 2b. This time they said they didn't re stage me but everything I've read statistically puts me at 3c. First time was failure onTamoxifen.

Anyhow ER positive so I had a complete hysterectomy and ovaries out and I switched to Arimidex. It makes me achy as heck especially when I move less in the wintertime. Terrible night sweats on and off for the first six months some moodiness and crying but then again that's having cancer too. I have a very good quality of life even had a second round of reconstructive surgery after I had radiation the second time and I got capsular contracture. Going through some struggles at work now but hopefully this those are resolved and get back to doing one my favorite things that is planning my next trip to Disney with my family amen God bless us all.

Oh yes, Zometa 2x a yr...coming up actually next week. Easy but I feel like crap for a day or two.

PaulaAtlantaGA

Hi, ladies,

I haven't yet had my surgery, but one lymph node was biopsied (malignant) and three more lit up the PET scan. It's great hearing from so many of you who are doing so well! Jojobird, I'm also TNBC and have a long path ahead. Finished AC, on #3 Taxol with carboplatin added every third week, then surgery and radiation, then Xeloda. I like what someone wrote their MO said, to give them a year (or more) in order to get many more good years. I CAN do this!

orlandpark65

Hello. I had 15 positive nodes. I just made 7 years.

meg2016

orlandpark65 that's awesome! Thanks for posting.

Anna-33

Anyone here in the Pallastrial? I am included

stephilosphy00

Thank you for posting!!! Wonderful news!!!

IAmElaine

I had 11 positive nodes with extra capsular extension. I will hit my 14 year mark next week. I do still take Femara and will for the forseeable future.

dya

My oncologist told me 2 days ago I had 25/26 nodes involved. I'm devastated. She said I might be stage iv but doesn't want to run a PET scan yet because if lesions are found, the multidisciplinary group may recommend to get me off chemo altogether. So going to 12 rounds of taxol before I get scanned.


I dunno. Things were looking great when I had taxotere and herceptin and then I got switched to CEF without herceptin and things started going south after the first cycle. We couldn't know CEF wouldn't work but I wish I had gotten 6 taxotere and herceptin instead.


Thanks for this thread though. I'm hoping I'll make it through and someday may be able to encourage gals with lots of nodes involvement.

MamaOz

wow

So happy to see so many still going strong..it helps with trying to stay positive

Of those gals, iamelaine orlandparks

Did you gals take arimidex or an equivilant?

Ive been on arimidex since Oct. very achy and my ribs and side still hurt ocasionally ( radiation , surgery?? Who knows) i have osteopenia but havent taken the boniva pills.. anyone found a tolerable bone density med that actually helps ?

Anna-33

MamaOZ ... I get Zometainfusions to prevent loss of bonedensity.

Anna-33

Dua...How are you doing? I think its too long time for you to wait if they belive you could be stage 4. At the same time I was told the same thing about getting another/milder treatment for stage 4.

Is there possible for you to switch back to tax+herceptin+perjeta?

MamaOz

thanks for responding anna3

Do you tolerate it well?