Node Positive and NO chemo...any of you ladies have input?

Sereena,

I hesitiate to tell you its probably just being nervous about starting the Arimidex that kept you awake, because I'm not you and I'm not a doctor!  But I do know that I always have trouble falling asleep if there is something 'new' I'm dealing with. So..I started taking my Arimidex in the morning so I would be awake to know how it was making me feel.  I think its affecting my emotions, but then I've also just started with rads and am nervous about how my skin is going to hold up.  We have so much going on dealing with bc, its hard to know what's what at times. 

Aza, I'm glad to hear your Onc said ok to no chemo with a score of 21. Mine was 20.  What else did your Onc recommend as far as follow up? (if you don't mind sharing)

Lee

Sleuth, each of us has to make our decisions based on the best information available and on our own life values.  I agonized over each decision, and in many ways wish I had gone with my gut instinct - excision only - but fear drove me to second-guess myself a million times - fear of what the cancer would do vs. fear of what the treatment would do.  I cannot do the woulda coulda shoulda because that does not do me or anyone else any good, but in the end, you have to be able to be at peace with your decisions.  No one else has to live in your skin or your body, no one else has to live with your thoughts.  I am having a little difficulty being at peace because the SEs are lingering, but not everyone gets SEs from treatment, and I also have a clear PET scan - nodes are no longer showing up!  You might also remember that IF  you decide on further treatment, you can always stop at anytime - something I also forgot about.  That is why I am not pursuing anything further for now - no rads, probably not even tamoxifen until I feel much better.  One thing I did consider early on was just doing tamoxifen only - since you are receptor positive, that might be something to discuss with your MO - and you can start at a low dose to reduce SEs, and it is VERY effective!

Lee7,  oops, sorry for not answering sooner .  I just now saw your post.  Our DXs are similar except mine is somewhat worse -- Oncotype score  21 and two nodes involved.  My Onc recommended mx, chemo and radiation for me. However she was NOT insistent about chemo and said she was OK with it if I wanted to skip it. (and boy, did I want to skip it!)  Because she is widely published in several top medical/oncology journals, and was highly recommended to me, I have great faith in her knowledge and recommendations. Of course, as she told me, "there are no guarantees" either with or without chemo.

She also recommended I supplement with Vit. D-3, "but not in great amounts." There is a lot of new research on the possible relationship between Vit. D deficiency and BC, so I'm taking 1000 to 2000 iu's per day.  I figure it can't hurt, and might help.

If I may ask, where are you in your radiation treatments? Are you having only chest wall, or also upper level nodes irradiated?  I just hope you are finding radiation a "breeze," as I did.  I had a very easy time of it, part of which I give credit to a good melatonin cream that I applied a couple of times a day.

Good luck and God bless!

cookiegal, do you live in an area where you normally get lots of sunshine?  I've read that the best way to increase D3 is when your body makes its own from being out in the sun.  One researcher recommends half an hour in the sun between the hours of 10 a.m. and 3 p.m., twice a week. 

I've added D3 to my diet. I'm taking the 1000 dose once a day. I don't know what my actual D level is but am going to try to get it tested next time I see my medical Onc. and then I'll have a better idea if I need more.

Aza, I've only had 4 tx's so far . I did buy 100% aloe gel to start with. Where do you find melatonin as a cream? I've only seen it as pills in the vitamin area.   I am getting whole breast including the chest wall plus some of the upper area for the nodes up there.
Diagnosis: 10/2010, IDC, 1cm, Stage IIa, Grade 2, 1/20 nodes, ER+/PR+, HER2-

cookiegal (I love your name!) let's hope that your mega doses of D3 will get your level up there pretty soon.  When will you have it checked again?  I think I read that the optimal level is now considered to be 50 or more.   Mine was at 46 late last year.  I've been supplementing since then, so I hope it's at >50 by now.  I'll find out in the next week or so.

Is anyone familar withe Nutriferon from Shaklee?    I have heard this is an amazing immune system supplement.   Love to hear feedback.

Aza,

I'd like to know more about the grape seed extract study. So far I'm ok on the Arimidex but its early, and I'm a little worried about the SE affecting my bones. If grape seed can accomplish the same good results without the bone loss, I'll be switching over to it too!

Sleuth, I'm with you. We all have to make the choices that are best for you - and generally, our oncologists will support our decision, whatever it may be. I was node-negative, HER2-,plus clear margins, and IDC of less than 1 cm., but had an Oncotype Score of 30. I was willing to take the statistical odds that it was 85% Iikely that I would remain cancer-free. (Actually, it's either 100% or 0%.) I was told by another cancer survivor that women in our local breast cancer support group who are age 60-up make the same choice as I did. In late May, I will reach my three-year cancer-free anniversary!

lee7, heads up . .  I just now PM'd you, though rather belatedly!

 Aza

Why do all my docs disregard my oopharectomy as not an issue. They say "your body still makes estrogen." My slides showed something the tumor board had never seen, at least my R/O said so. I have a few DCIS cells next to the outer skin, not on chest wall. My tissue is at Oncotype DX right now, waiting for results. 2nd opinion from Johns Hopkins said my invasive tumor was a microinvasion, not 4 mm as the local hospital said. And one SN had a micromets out of 10 taken. Rest were clean. I figure I won't have to do chemo, probably will take Arimedex or Tamoxifin, whichever has fewer side effects. R/O wants me to do 33 rads. I believe I will so no to that and just take the hormones. Wish I could find % of recurrence on the net.

rianne - if you are using any of the statistics from adjuvent or oncotype, they both assume you have done radiation.  I believe it is the same with lifemath.

I had 2 positive nodes and my doc wanted chemo.   But I was grade 2.

I am a 37 year old mother of five and I've never doubted my decision to do chemo.  I did 4 DDAC followed by 4DD Taxol.  In fact before the surgery pathology came back (all the scans showed clear nodes) and there was talk about having no chemo I was actually nervous about that!!!  I have had a couple of bad days each round, but for the most part life has gone on as usual.  I wanted to give myself every advantage.  My MO never cited any statistics about how much chemo would reduce my relapse rate and I never asked. Being node positive I didn't qualify for the Oncotype testing, but to me . . . any reduction in recurrence rate was worth a few bad days. 

Tammy

I may be wrong, but I don't think age has anything to do with the Oncotype test. I also know they are testing people with some node involvement now as well.