Don't Want The Lumpectomy And Rads

[aquinis2000]

I Am Stage 4, Lymph And Liver Mets And Will Be Taking My Last Chemo In Two Weeks. The Doc Wants To Do A Lumpectomy And Remove Two Remaining Tumors From Breast And Do Rads On Breast And Lymph. My Thoughts Are This...... If The Herceptin That I Am And Will Be Taking For An Indefinate Period Will Hold Back And Sit On The Mets And Blood And Lymph. Then It Will Also Hold Back And Sit On The Remaining Tumor In My Breast. It Either Works Or Not. Why Go Through The Operation And Radiation When We Are Counting On The Herceptin To Do It's Job.it Seems As Though If It Were The Only Tumors I Had, I Would Understand Removing Them. But The Liver Is Inoperable And We Certainly Know We Can't Fix The Cancer In My Blood. So It Does'nt Make Since To Do It. Plus The Axillary Nodes Would Be Removed And Have To Worry About Lymphedema. Who Needs More Worries. Am I Crazy?

[jessica]

HI~
So many decisions to make under such stressful circumstances! Isn't it awful? Hopefully those of us here can help you maneuver thru the decision making process...Can you tell a little more about the circumstances of your dx? When were you dx'd? What chemo regimen are you on & how long? What kind of response have you had to your neoadj chemo-tumors in breast, lymph nodes and liver shrinking?
We each have to make decisions for ourselves based on our own comfort level with how much & how far we will go with our treatments, surgeries, etc. That's why they always tell us we have "options" -which is sort of strange b/c the preferred "option" would be to NOT have this disease at all!
My first thought regarding your question is, if a lumpectomy w/axillary dissection can remove/reduce the tumor load so that chemo &/or Herceptin has less "work" to do, then that would be something to strongly consider.
I was dx'd Stage IV (liver mets)@ primary dx3 1/2 yrs ago, and had 12/12 positive nodes. I have not had any problems at all w/decreased range of motion in my L arm or any signs or symps of lymphadema-I was vigilant about stretching & maintaining full ROM, from the day after surgery on...
I have never had rads, in fact, we never talked about doing rads-since it's "local control". The greater concern was addressing the metastatic disease w/systemic control of chemo, so I'm sorry I can't give much advice there.
Remember, knowledge is power & YOU are your own best advocate!
Keep the Faith

[aquinis2000]

Jessica, thanks for answering me. I just read Joe's post, that only 30-35% of her2+ patients respond to Herceptin. I didn't know that. I was just diagnosied in Sept and when I started posting here all I read was Herceptin, Herceptin , Herceptin. the miricle drug. I didn't have the facts. So with that in mind I would be very foolish not to have the lumpectomy and rads. I really thought the response rate was much higher to the herceptin, obviously willing to put my life in it's hands. I feel foolish.Thanks for listening. Your response was very kind.

[Joe]

Further clarification my statistics is necessary. Herceptin is not the only drug available for metastatic bc. GSK is doing widespread clinical trials of Tykerb (Lapatinib) which has been found to be effective for women who failed to respond to Herceptin.

I would highly recommend entering these trials if you fail to respond to Herceptin.

Regards
Joe

Aquinis2000.

Don't feel bad with yourself for not knowing. The very sad part is that you have come so far in systems that appears not to have explained treatments impacts and outcomes to patients in respect of what are potentially fundamental decisions, for whatever reason, complexity time resoures.... From many posts I have seen you are not alone.

All of which makes sites like this of huge importance, and great credit should go to those that put in the huge effort it takes to run a site like this.

RB

[kk1]

Dear Aquinis2000;

I struggled with the same question several years ago and your logic makes sense--having surgery seemed at bit like closing the barn door after the horse got out.
There is no right or wrong answer to you question but when I was struggling with this question several members of this board posted some very helpful comments to think about:

con- surgery
a) There are some reports that growth promoters present in the healing fluids that rush to the surgery/injury site can re-activate dormant cancer cells in the blood. Most of the studies have been done in a petri dish with wound drainage fluid and cancer cell lines so they may or may not be applicable to live humans.

b) No one dies from a localized tumor in their breast it is mets to the visceral organs that are the problem....so If you can't fix it in the liver why worry about the breast.

pro-surgery

a) Once your liver mets are gone then it might make sense to have the surgery as the argument for micro mets remaining in the breast also makes sense. StephN made a very good argument on this.

b) my surgeon said that while it might not make a difference in overall long term survival, if there are micro mets remaining in the breast then it would not be long before I might be back having to deal with the breast again even if no new mets appeared in other areas of the body-- but this time the cells might have become resistant to the chemo therapy that had worked so well for me the first time around. He thought local recurrances were always more difficult to treat the second time around.

For my story- I did the chemo until they thought I was NED with CT and PET scans....nothing showed in my liver or in my breast. It was really amazing to me that it had all dissappeared!!!-- for a couple of months I could not decide if I should have surgery or not. Both my surgeon and my Onc said it was a tough call as there was little data available in regard to increasing overall survival. In the end I decided to have the surgery and it turned out that the pathology on the tissue indicated that my nodes were clear but there were indeed micro mets remaining in my breast although that did not show in the imaging. I was glad I had the surgery and I was back to my normal activities within two weeks.....It's been 18 months and life if great! and I'm still NED. I should add that I had a masectomy with complete node disection. With the Node disection I did not need to have radiation and also did not have to worry about radiating my heart area. I just keep my fingers crossed that I won't get lymphodema (so far so good).

On the other hand a couple of other people on the site opted for no surgery and I don't think any of they have had a local reoccurence either.


good luck with you decision
kk1