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

Sereena

I had a micromet in node #1, macromet (5mm) in 2nd node, micro in 3rd and 4th clean. Also, 22 axillary nodes all clean. I feel pretty good about not doing chemo. I did start the arimidex yesterday and last night had a difficult time falling asleep. I am typically one who falls asleep the second my head hits the pillow. Does anyone think the arimidex could effect me that quickly or could it be a coincidence. I would hate to be going through that for the next 5 years!!! Any thoughts or opinions?????

Lee7

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

Sereena

Well, I slept like a baby last night so I guess it wasn't the arimidex.....all psychological I guess which I am so relieved about. Working through one nightmare and not wanting to start another!!!

Linda-n3

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

sleuth,

I'll second what n3ypb just wrote, you can always decide what treatment to do or not do and for the most part you can stop if you need to stop.  It doesn't have to be all or nothing.  I was told have the rest of my nodes out, do chemo, do rads, and then take the AI for 5 yrs.   I'm sorry I let the surgeon remove the extra nodes because I have significant nerve damage from that surgery. It seemed no sooner had I had that surgery, the news came out that there wasn't a benefit for doing it and I could have (should have) avoided it.    I decided to skip chemo because I felt the small benefit wasn't worth it for me to risk the permanent SE's that I could end up with in my case.   I did choose to do the rads, and am doing them now to help get any stray cells that my surgeon missed during the lumpectomy . I am hoping to complete the whole # of txs but if the SE's get too bad...I'll probably have to rethink how much I'm willing to do.  I am also taking the AI since I'm highly ER+ and postmenopausal. I'm seeing how I do on that pill as far as those SE's go.

I guess what I'm saying is we are all different in what we can do and tolerate and what risks we are willing to live with.  And that's ok....You have to be able to live with your own decision and do what feels right for you.  Most days I'm ok with what I'm doing.  

Lee 

Aza

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

My onc is all about the D3!!! It's been harder to get up my levels than I thought. I'm trying about 4k a day...sometimes I forget to take it tho!

Aza

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. 

cookiegal

No I am in the northeast. I take walks outside all winter...but I am pretty bundled up. Honestly it doesn't seem to go up much in the summer...I think sunblock doesn't help.

Lee7

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-

Aza

lee7, that sounds like a very sophisticated device they are using on you.  Wow!  The radiation place I went to was brand new, but they didn't have anything like that. (Or if they did, I didn't see it.)

If you google radiation + melatonin cream, there are several good references and info. LEF.org and amazon.com both offer the Cosmesis brand. I haven't tried it, but I'm guessing it's similar to what I used.  Calendula cream is also said to be helpful.  BTW, I was also advised to take MSM to help protect connective tissues from fibrosis. I take it in powdered form with fruit juice. After rads, I also switched to using an MSM cream.

I hope this helps.

Aza

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.

Aza

Sleuth1, Would you mind telling us WHY you've decided not to have any treatments? Is it due to a "fear of the unknown"?

We all know how hard it is to make a conscious decision to accept treatments that one knows for a fact are going to cause some degree of permanent damage . . .especially when one was feeling "just fine" before being hit with the dreaded cancer dx. It may be tempting to say "I'll just take my chances," because of all the horror stories that abound. What a shame that we hear so little about all the women who have come through the whole treatment gamut with only mild (or no) SE's and have gone on to live long happy lives.

You know, not everybody has bad SE's from radiation and I personally know several women who say they have had no SE's at all from taking anti-hormone pills.Why not at least give them a try?

I hope you'll hang in here, even though your decision is made.

HUGS,

Aza

CanItBeTrueNH

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

Aza

sleuth1, it's true in many cases about them covering their "behinds" (politely put), but also, I think many tend to see things only through the narrow prism of their specialty. It was a struggle for me to find drs. who didn't treat only according to the latest statistical data, but who also viewed me as an individual and had faith in their own emperical knowledge.

I had never heard of Standard Process Inc., so I looked it up.  Very interesting.  Since you have to be a health professional to order from them, does that mean you are in the health field? It wouldn't surprise me, because I know at least two R.N.s in their late '60s who have never been to a doctor (except when their children were born) and who have never had a mammogram.

You are right, it's a crapshoot as to whether any of us will have a recurrence, no matter what we do.  But since you are ER/PR+  would you at least consider taking grapeseed extract just as a precaution? As you may know, Mayo Clinic is conducting a study on it as a substitute for Arimidex, minus the evil SE's.  They say the results are promising and they are currently in the dose-determination phase. If they find it works just as well as an aromatase inhibitor, I'll be the first to switch!

Best,

Aza

Lee7

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!

Aza

Check it out at http://clinicaltrials.gov/ct2/show/NCT00566553

Unfortunately they are now only studying its effects on estrogen levels of healthy women, not those who have breast cancer.  Still, it's a glimmer of hope.  The study results are due to be announced in April.  It will be  interesting to see where it goes from there.

Did you ask for bone density scan before starting on Arimidex?  

Aza

LizinKS

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!

LizinKS

P.S. Sleuth: I did go through radiation and have taken Arimidex for about 2.5 years. One femur is showing osteopenia, but then my baseline showed the same thing, then the second one was normal. I will talk with both my family doctor and my oncologist, both of whom are willing to listen before I make any decision to go on bone-preserving drugs (since I already have stomach issues) or perhaps change to Tamoxifen. We're in the process of resettling my husband's quite elderly parents right now, so I might want to put off making any decisons for a few months, as I'm sure my husband and I will be mostly responsible for shutting down their present home,etc.

P.S. One thing I disagree with you on is aboout SF. We lived nearby there for 17 years. I love SF, but then I don't tolerate heat and humidity very well. Plus, being on the central Pacific Coast was the one way my allergies went away. I could feel my sinuses opening up while driving across the Bay Bridge! If we could only afford to live on that coast, we would!

Aza

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

 Aza

MC1957

I think I read in the NCCN.org pamphlet that no chemo was an option with your situation.  Mine was similar, but grade III tumor, so I decided to go with chemo + rad (lumpectomy) + AI.  The grade III made me think it was a good idea, but I really couldn't find any good data showing chemo to be a huge plus.  It seems logical that killing all fast growing cells would be a benefit.  I did 4X TC, and didn't have any side effects to speak of.  Just fatigue...  and it took longer to bounce back after each treatment.  Last treatment was 3/29/11.  Yeah!  Just heading out to do the CT for the rads...

rianne2580

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.

Omaz

rianne - Have you seen this website?

http://cancer.lifemath.net/

raincitygirl

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.

Omaz

And I don't know if lifemath has recurrence or just mortality estimates.

Fearless_One

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

bdavis

Sorry... haven't posted here in a while... I had one .38mm micromet in SN and stage 1 tumor... My MO wanted chemo and chemo I got.. 6 tx... I am almost done and have faired pretty well... so no regrets here.

sundermom

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

Sereena

tsundermann, You didn't qualify for the oncotype test not only because you were node positive. At 37 and I am assuming pre-menopausal, would be another reason your MO didn't order the test along with being that young with a grade II tumor. I would have done chemo too. I am 52 and post-menopausal w/3 positive nodes, grade I tumor and I was torn about not doing chemo but after much research I know I made the right decision to skip that part of this horrific journey. My onco score was very low as well. Best wishes! ~Sereena

kira1234

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.