any long term survivors with lymph node involvement out there?

Delvzy - I find I can tolerate Tamoxifen fairly well, so my onc has said to stay on for 10 years.  Almost at the 5 yr mark so I think it's do-able.  Also heard horror stories about the horrible effects of Aromasin/Arimidex and Falslodex and a couple other AI's.  But then also heard Tamoxifen mostly benefits us if women are "pre-menopausal". Anybody else heard this ?

Delvzy - I take just a baby aspirin and not even every day - every other.  It seems to think out my blood too much and every time I have bloodwork, it's consistency of water but not always. Am going to ask my onc about the drops you take.  Multivitamins have extra zinc in them, but I'm not one for remembering a lot of pills everyday !  I take the baby aspirin because Tamoxifen can make us hypotensive.  I also take BP once a month or so. 

Would love to hear from Stage 3 survivors! Who had lymph node involvement....and no recurrence

I was dxed with stage IIIC with 12 pos. nodes over 8 years ago and doing the happy NED BC dance everyday. There are quite a few of us out there. Check out the stage III thread.

I had twelve positive nodes. Was diagnosed May 2012

Hi Dianne, UI was Stage 2b back in Feb2006. had full mastectomuy and 22 nodes removed. Sentinal node pos only Had ACT 8 rounds w.residual severe neurpathy and foot drop. Now after 7 yes I hgave arm amd shoulder pain.Dx pr pos ca sane as before in my collar bonrs area, to have Rads this week and gp back om TFamoxifen, Some very small nodes ij one lung also.Hoping Radrwill reeuce pain oyherwise I'm ready to sign up for hospice, Go for the gusto in the earjy states vut nothing new to ofer laters,

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Anyone know website for Triple Positive stage 3 forum of young breast cancer women?

Hi Everyone!  So encouraging to read all the long term survivors of Stage 3.  I was initially diagnosed Stage II bilateral with lymph node involvement 11/15/12.  I had 16 chemo followed by bilateral mastectomy with 16 nodes removed, 12 still with cancer, not clear margins in right, ovary removal as well.   Now in radiation with 21 down and 9 to go.  Right did not have node involvement and team confident about getting it all in the right.  Left with lymph node confident of reducing to 10%.  concern as you all know is not reoccurence in the chest area but systemic occurence.  I was shocked to now be a Stage IIIC  but I believe God has use for me yet and is healing my body!  He kept me strong enought to work through chemo.  Four weeks off with surgery and back to work and working through rads. I am post menopausal and taking Arimedex (Anastrozole) daily.  I actually think the rads is making me ache as I had a month of the Arimedex before rads and didn't ache much. I am happy to have the aches and stiffness-small price to pay when we beat this cancer.  It took me a few weeks but I have thrown odds, prognosis and stats out the window!  I live each day with joy and truly believe I will be around for a long time.  Again thanks for all the inspiring stories!!  God bless you all!  Stay strong ladies!! 

Hello ladies! Have just returned to this forum after almost a year. Had a bi-lateral mastectomy in April 2012 and tested positive in 3/7 lymph nodes. I declined chemo and radiation but did start hormone therapy. Tried Tamoxifen  and could barely walk after a month my knees were so bad. Switched to Aromasin and have been on it for over a year.

Now, just short of my 2 year mark, they found a 4cm positive lymph node under my arm. I'm tired, I'm scared, and am pretty much unable to process all this {again} right now. Doctor just called with biopsy results last night, today I have to go to "discuss my options". Chemo is not one of them ... watched too many family members and friends go through it. My choice is quality of life .. not quantity while being sick.

Other than chemo what treatments have worked for folks?

Heidi, I was dx last year with stage II with 1 positive node.  I just finished DD chemo 2 months ago and while I'm still recovering, I lead a fairly normal life now. Chemotherapy isn't as bad as it used to be;  they have medicines for most of the side effects.  I found it tolerable.  Of course, I didn't *want* to have chemo but I felt I should give myself the best chance at living as long as I could.  I know quality of life is the most important thing and yes, chemo does affect that somewhat.  But so does cancer.  Do what you feel is best for you but you cannot make treatment options based upon someone else's experiences.

Heidi - I'm so sorry about your new node. I'm six years out Stage IIB with lymph node involvement.  I did 6*TAC chemo.  Yes, of course my QOL suffered during chemo, but it was mostly fatigue.  I never had nausea (the new anti-nausea drugs are very good), and I even continued working full time during chemo.  Six years later I'm alive and kicking.  I was never a runner before b/c, but a few years after treatment I started running.  I now run a lot of 5K and 10K races, and last year ran my first half marathon.  I'm an old, fat, slow runner, but I'm out there plugging away.  I also take yoga classes, and do a lot of Pilates, swimming and mountain hiking.  Bottom line is that while undergoing chemo I was basically as weak as a kitten, but once chemo was done I slowly regained strength, and today do pretty much everything I want to.

I understand declining recommended treatment. I declined rads even though one rad onc strongly recommended it, but he refused to give me any specific numbers about how much benefit I'd get from rads.  I got a second opinion, and this rad onc was much more approachable.  She laid out the risk-benefit scenario for me, and let me know exactly what percentage of survival and recurrence benefit rads offered me.  In the end I decided that in my case, the relatively small benefit was not work the risks to me, and she was comfortable with my decision.  By the same token, in my case there was a lot of benefit to doing chemo, so I opted for chemo after deciding that the large benefit to me outweighed the risks.

You may want to have your oncologist work though the benefit-risk numbers of doing chemo in your particular situation, then make your decision based on those facts.  Everyone is different - just because you had some friends or family who had a tough time with chemo doesn't mean you'll have that rough a time.  Find out the facts about the benefits-risks in your particular case, then you'll have the security of knowing whatever decision you made, it's based on a thorough understanding of the facts.  Good luck!    

I just found out that the result of my SNB showed all three have involvement. I had a lumpectomy and now I am going in for a mastectomy with a PET scan on Monday. I am nervous now that it has spread and I will go from stage 1 to stage 2 to stage four in just a week! They will do an auxillary node biopsy as well. I'm in an nightmare! Is there anyone who has gone down this road and you're OK??

Thanks everyone for the feedback and support. Have been on Fareston and XGEVA for 3 months with no apparent side effects. Only problem is there is something under my arm which should not be there. I don't honestly know what it is ... enlarged lymph node .. tumor ... who knows? I've been asking for a scan for 3 months and have been told "hormone therapy works slowly, we need to wait 3 months". So 3 months later as the lump(s) grow the doc finally OKed a scan. Enter insurance company .... who denied a PET scan, but approved a CT scan. Just had the scan Friday and am in a holding pattern till someone gets back to me with results.

On a positive note, I've had numerous conversations with chemo survivors and am SLOWLY changing my opinion. I guess I'm open to the idea if necessary, but still not quite on board. I started a new job 2 weeks ago and LOVE it. I need to be around for awhile to enjoy it.

Heidi, I can honestly say that I have had worse quality-of-life issues from tamoxifen than I did from chemo.  

Hope you get results soon from your scan.  I had a big painful lump pop up in my armpit a few weeks after rads ended. They sent me to get it ultrasounded and it turned out to be a lymph node. Enlarged, but normal looking. They figured it was irritated by the rads.

mrscrj - thank you! I've been concerned about how long the tumor may have been there, and with the node involvement you always think those suckers are just floating around looking for a home to nest. I keep telling myself it hasn't happened and the hormone treatment will keep it from happening.