Rethinking treatment

Dear Nurseshell, I feel so bad you have to join our sisterhood, but this is a great forum with many helpful and kind ladies on board to help you. I am not sure why they told you that you have a  high chance of recurrance, with no node involvement and her2-. I was under the impression from my onc that being her2- was good because positive means aggressive. Your grade is high as mine was, but I am five years out now. I did do radiation as a precaution, on top of chemo and a bi-lateral mastectomy. I have no heart damage. I was very aggressive in my treatment and it did pay off. I would get a 2nd or 3rd opinion on radiation. It was very easy to do, just time consuming. I had bi-lateral breast cancer, but they only did the radiation on my left breast, because it was 2cm. My right had a very small tumor.Good luck with your decision, and please come here for advice and comfort, and trust your doctors. God bless you, Kathy

yes I did - when I was diagnosed in 2000 - see my diagnosis it is the same as yours - I was 42 years old.  I chose the dble mastectomy and have never regretted it.  I did the chemo. 

 with no node involvement you would not get radiation with a dble mastectomy.

Having said that though - none of my friends who had radiation have heart trouble.  Make the decision that gives you the most peace. 

I had a mastectomy and after chemo will likely be having radiation.  A mastectomy is not a guarantee you don't have rads.

However, since you already had your surgery, they know where your cancer was and so you will not need rads if you take it all off.

Everybody is different - what you can live with is not what I can live with.  But, I went into this with the plan to have the least invasive surgeries that would keep me as safe as possible, and all the treatment necessary to allow me to live to raise my kids and see my grandchildren.  I tried for lumpectomy but due to the multifocal nature of my cancerous breast, that was impossible.

However, I kept my healthy breast.  I didn't feel that amputating a healthy body part was something I could live with -even if it mean my reconstruction options would be better.  However, many women feel quite differently than me and prefer to have them both removed for a variety of reasons.  We all make our own decisions based on what we feel is best.

I also am not going to have a port for chemo/herceptin unless absolutely necessary. 

My advise to you is to do your reseaarch and make a decision based on statistics, logic and reason and not just fear.  Having your breasts removed does not mean cancer can't return.  Having rads does not mean you'll have heart problems.  It's a very rare complication.  Yes, we are all nervous and frightened that something can go wrong but since you are node negative (as am I) and her2-, you have a good shot at beating this back with the treatment you are currently undergoing.

Good luck to you!  It's so frustrating having to deal with this and make all of these decisions without any real medical training or good information, isn't it?  

I had radiation to my left side 28 months ago and was told and believe the risk is minimal.  I have had no problem.

We had a similar diagnosis except that I had grade 2.  I had bilateral mx but then again I had BC in both breasts.  I decided to have it before the MRI that found the small IDC in the other breast but that cemented it for me. I have no regrets about that at all.  I had negative nodes and bilateral mx so it was pretty clear that I would not have to have rads but there are a few other criteria like distance from chest wall, skin involvement (if having skin sparing mx which I think most docs do now if they can) and one or two other things that I can't remember now but I am sure another lady will be along that knows more about it then me:) I ended up with no rads but I made the radiation oncologist make the call on it and explain the decision.  I have had many BC friends do lumpectomy and rads and they all seem to be just fine-no heart issues. I also don't know why a doctor would think that you have a high risk of reoccurrence.  I was 36 at diagnosis and with our similar dx I was told my risk is about 20%.  It would have been 10% my onc said but age doubled it.  This is not far off from the general pop.  My onc said that he knew I would focus on that he said 20% so he wanted me to remember that he was really saying 80% unlikely.  My husband asked him to break it down and asked what his risk of prostate cancer, colon cancer, and a few others was at his age, 37, and the onc said about 15%.  I don't know why yours would be much higher.  I don't know what 9/9 aggressiveness means though.  Was this something on a path report that I missed? I think that you should make the decision that makes you the most comfortable and that diminishes the anxiety because, as we all know, life is precious and cancer should not take away all the pleasure from it.  Constant worry is a horrible side effect of BC. Not good for the heart either.  I think that they can do the rads in a way now that minimizes any effect on the heart.

Coolbreeze-I went without a port as well.  The thought of it bothered me.  Other than looking like a junkie for awhile with all the needle marks it was fine. You are having Herceptin though so I know you will have more pokes.  The infusions through the vein were painless for the most part. Best of luck.

Ozzi-node neg and mx-rads still not the norm. 

When I was dx my first words were: mastectomy - both out. I didn't even know staging or nodes involvement. My first surgeon told me chemo-lumpectomy-radiation. After some research and discussions with a pathologist friend I decided to change the surgeon and go for mastectomy-chemo. A year later I had prophylactic mastectomy for piece of mind. No rads, no hormones and no recon. My only regret is that I didn't have bilateral mastectomy from the beginning.

A mammo caught my cancer very early. I'm a Stage1/Grade 1. I have to make a decision on what kind of surgery to have. It's driving me nuts. My sister was diangosed in April of 2009 with Stage IV and now I was diagnosed just a couple of weeks ago. Any thoughts on surgery would be wonderful.

The fact that it's grade 1 is great in terms of recurrence and also side effects from therapy (because you won't have to have really aggressive treatment). I bet they'll tell you to do a lumpectomy and local radiation. I had a lumpectomy, and I'm nearly intact. Surgeons can surely work wonders these days.

I'm so sorry to hear about your sister. My prayers are with you and your family.

As to why you might need rads after mastectomy - cancer cells can still be very close to the chest wall.  I  know my path report says I only have a 1 mm margin on the anteroir side, so it's possible I'll need rads too.  Won't know for a while I guess.

I'm a newbie to all of this and need some help "from the trenches" in making a difficult chemo decision.  I'm 50 with stage 1 BC, HER2-, with an onco score of 17.  Although I'm in the "low risk" scale, I'm at the far high end of it.  The lumpectomy was in october and sentinal nodes were clear.  My doc is pretty much leaving it up to me whether chemo will be part of my treatment.  My survival odds are 95% with chemo and 89% without.  He says that the regimen would consist of 4 cycles, with one treatment per cycle of Taxotere and Cytoxin.  I plan on radiation and Tamoxifen, but chemo will be first.  If my score was in the intermediate or high range, the decision would be a "no-brainer" and I'd have no choice but to do it.  But because my score is where it is, chemo is an option for me and I'm trying to decide if the side effects and risks associated with it are worth the small 6% benefit I would gain.  Has anyone else been in this position or willing to give me some insight?

I don't know how people deal with the anxiety of recurrence. I haven't even started the treatment for the current breast cancer and already I'm thinking about what happens if it comes back. I watch my sister with her Stage IV and it just tears me up.

Hi Roseann,

It sounds like we have similar factors, with the exception of the grade.  I appreciate your input and we are clearly thinking along the same lines.  I'm in very good health and although the short term side effects are scary, I worry most about the long term side effects that could change my health forever.  Rads scare me enough and I'm not sure I want to add chemo to the mixture. 

I've read so much about this, talked to 2 oncs as well as my PCP, but I need to hear the views of the women who have been there. Good luck to you, too!

Sally 

keep in mind that the chemo benefit on the low end is less, because the slower the cancer, the less well chemo works on it.

There is also a margin of error on those stats, I think for a 17, the 6 percent figure is at the top of the margin...the error bar probably goes as low as 3.

I have flippity flopped on this four or five times...today I think I may do it, but all last week I was against it. And I am a low intermediate.(22)

Good luck. There are some good decision making booklets out there, that are very helpful.

It's the hardest decision.