So… stage 3 and grade 1.5

Hi posy, just want to add my welcome as well.

 You know, I think it is normal to worry about whether or not the treatment you get will "work". I am in Canada and got a different Chemo than a lot of people here (FEC-T). I still stress (three years later) about if I should have done another type. But at the end of the day, you just have to make a decision, and be at peace with it. Hopefully one day they will be able to test each of our unique pathologies, and give us far more targeted treatment, but until then we just get bombarded with everything!

The good thing about being Stage Three is you do get everything thrown at you, and you take it happily! So, my thinking is if the chemo didn't work, the rads did, if they didn't work, the Arimidex will.

There are things you can do for yourself too - exercise being major (50% reduction in reoccurance)  So, try and get 30 minutes in a day! I also take aspirin and Vit D.

Looks like a great trial! But yep, you'd want to get the drug ;-)

If you can get your Onc to give it to you anyway, you could just go that route. I had to work on my Onc a bit to get Zometa and I`m getting it off label, but I hope it is giving me some protection. At the very least it is hopefully stopping my bones from completely crumbling.

i'm in same boat pretty much as you. just finished round threee of AC-Its really not as bad as my mind was making it out to me. sometimes my mind wanders and thinks the worst-don't let yourself do that. I plan on taking up running when I'm all recovered. and changing my diet even more. these are things we can control. Don't let the worry ruin the life you have. you'll and I will get through this.

Ativan has helped me a lot. I've sought and found many survivors. I know one she's 25 years out. dx at 40 on her birthday. 

Posey hang in there!  It's very scary early on in a new diagnosis but you have lots of reason to be hopeful for a full future ahead of you!  With your ER+/PR+ status you should benefit from both chemo and hormonal meds.

I had a stage IIIC Invasive Lobular which was a grade 1 (score of 5 on the Nottingham scale so almost a grade 2)  I had my bilateral mastectomies first, then 6 rounds of Taxotere/Xeloda chemo every 21 days, and then 6 weeks of 3 field radiation.  All 23 nodes removed were positive for cancer including  nodes that had already ruptured.  I was ER+ 95%, PR- 2% and Her2-.  I just celebrated 6 years NED this week from my date of diagnosis in Nov 2005.

The AC/Taxol chemo regime is a time tested, proven effective first line treatment. When I had a Stage IIA IDC breast cancer in 2000 (unrelated to my 2005 IIIC new primary BC in the other breast) I received the AC/Taxol treatment then.  It completely got rid of any signs of the first BC.  They were unable to give me the same chemo twice so that is why I had the Taxotere/Xeloda for the second BC diagnosis.  I also was on Zometa infusions for 5 years. I have been on Aromasin for 5.5 years and plan to continue it indefinitely.

The Denosumab trial you mentioned sounds like a good one. When you get the results of your final path report you will want to discuss all the treatment options with your oncologist.  I know chemo is scary but actually it was not nearly as bad as I was fearing it would be.  I believe it IS an important treatment option anytime you have positive nodes.  Chemo and Hormonal meds are "Systemic" treatments, where surgery and radiation are only "Local" treatments.  Systemic treatments are very important to treat any cancer cells that may have spread from the original tumor site. 

You have come to the right place for good information and encouragement.  Many, many ladies here truly understand what you are going through and can help you through the process.  Take it one day at a time and please keep us updated on how you are coming along! 

Best Wishes,

Linda

Hi Posy,

Stage 3, Grade 1, one large positive lymph node here (score 5 on the Nottingham scale).   I just passed 8 years in July.   I had a mastectomy (7.5cm tumour), six rounds of CAF followed by chest wall radiation and 3 years of Tamoxifen.   I had a stellate tumour also although it did present finally as a lump (I had small breasts).

I did chemo and was told afterwards it conferred a 3% survival advantage based on my pathology.  I was shocked and probably wouldn't have done it if I had known this beforehand.  However, now I'm glad I did!  10 - 30% effective sounds wonderful!  When all's said and done, I am now over eight years out with no further problems, so I just assume my treatment was effective. 

Being low grade and ER+ are both great.  I do remember the terror of being Stage 3 very well, this does pass but it takes some time.   There are many, many Stage 3 women who have been successfully treated.  There is no reason why you can't be one of them.

Take care

Love Mel

Hi {Posy, I had 12 pos nodes, my sentinel node was extracapsulated with tumor as was my primary  axillary node. I was grade 2, stage IIIC. That was then , this is now 6.5 yrs ago and All's well!

Initial days are  scary, but we've all been there and can help you. Try to take one day at a time and keep in mind there are many of us out there doing great,

Posy,

Yes, it is very normal to be concerned about mets.  Worry is the normal process we go through when given a cancer dx.  Your mind needs to work through a lot of things.  Including that this is, if left untreated, a life threatening illness.  But because of your treatment that your about to start you will be able to get the cancer out of your body and it will give you many, many more years ahead.

You are about to start on a long road.  The road takes you to Chemo City, Surgery Village and Radiationville.  You've been through surgery so one stop on the road is done.  Focus on chemo for now.  Put faith into the chemo that it will do the job; there is no reason to believe otherwise.  When you've done all those it would be a good time to get that scan and get the wonderful news of being NED (no evidence of disease). 

Even after my chemo I had extracapular nodes.  But I believe radiation zapped whatever might have been left.  Being able to take hormonal drugs everyday gives me the confidence to know that I'm keeping the cancer at bay and hopefully weakening it enough that my natural immune system will keep it away.

So feel free to worry some.  Just don't let it overtake your life.  Keep asking questions just like you've been doing.  Some answers don't pertain but I found the information so very helpful!

oops I forgot to add, that my onc wanted me to have yrly PETS, which made me crazy, but I did get them.

Stopped at 5 years.

I am not sure if there is a  correlation betwen side effects and efficacy in chemotherapy.  It seems that everyone has some sort of chemo side effects.  Some of us get more or less than others.   I have heard that the side effects of the hormonal drugs may have some relationship to "working" but I am not sure that is true... I am not sure they know.

I think the fear of chemo is so much worse than the reality.  I was absolutely terrified and I can still recall the day I started (jan 16, 2009) and how frightened I was.  8 weeks later, it was over... I can barely remember it now.  

this is a scary time.... I agree with Mel-you will come out the other side.... it's true.