Herceptin and No Surgery???? Need help!

[bbscott2]

Thanks for the reply, Lani.

My biggest question is, if it had shrunk down to 1cm would they only remove 1 cm plus the margin? I mean isn't that the point of neoadjuvant chemotherapy? To shrink the tumor down so that the woman can have breast conserving surgery? So since the tumor is completely gone, they go back to cutting out the whole area? What was the point of the neoadjuvant chemo then?

I do understand that no surgery is not an option. I have spent hours on the computer researching. At this point, mom really doesn't care if she is slightly disfigured. A mastectomy and then the two reconstructive surgeries is just too much for her.

I think that in a few years, we will finally be to the point that there won't necessarily be surgery after neoadjuvant chemothereapy. Just like a few years ago there were no lumpectomies, and now there are. I have read so many reports of how surgery is not always necessary. 95% of HER2-Positive cases that have neoadjuvant chemotherapy get the cancer completely. When they go in for the surgery they find that there is no cancer yet. Just as the MRI told them. Maybe one day they will be able to believe that.

Mom had an appoinntment with the oncologist today. She came home in tears and a wreck. He really isn't listening to much of what she has to say nor is he answering her questions. He told her that she playing games with her life and that she has to have a masectomy. I'm pretty sure we have the surgeon on board for just a lumpectomy, but we will know more after that appointment.

-Briony

[Lani]

Dr. Kent Osborne --great researcher, I understand he also sees patients

Dr. Jenny Chang--whom Dr Osborne introduces as the oncologist at Baylor in charge of most of the neoadjuvant trials of targetted therapies

You can hear both of them talk on the videos of the Miami BC conference I supplied the link for

Dr. Anthony Lucci --breast surgeon at MD Anderson who does research on
cox2 inhibitors and diet (walnuts, etc) and breast cancer He also has published on the costs/reimbursements of different breast surgeries and whether that influences/has influenced the trends of surgery done in this country. He is a very nice man, easy to talk to. I asked him several questions and he converses easily and explains well and seems to have a
human touch. Perhaps he could be helpful in your sorting through the disagreement between the oncologist and the surgeon at Baylor.

I have posted before that there is a trend to doing the least surgery that will answer the question/take care of the problem/ allow staging in breast cancer because 1) surgery causes inflammation and the gene expression profile of breast cancer looks very much like inflammation 2) there is a feeling that breast cancer (stem cells) in a dormant condition hide out in the bone marrow and that angiogenic substances are what awaken them like Prince Charming and Sleeping Beauty. The theory goes that the larger the surgery the more angiogenic substances are released.

3) In cases where lumps are found long before surgery, the tumor recurs/metastasizes x months after surgery (x depending on the subtype of bc) NOT x months after the lump was found, implying that something about the surgery started "the clock ticking" This has been found when fear, lack of local medical care, or other circumstances cause the surgery to be delayed long after the lump was found.

The above is theoretical, just as it is called the "stem cell THEORY" of breast cancer, but my impression from attending meetings is that more and more experts are switching to believing in the "theory"

This is not to say choosing to have a mastectomy is the wrong decision--it is just to say that there are alternatives and the right answer is not known, so it is reasonable to get second/third opinions and ask for lots of input on what the alternatives/pros & cons of each are.

If the mastectomy is being recommended to help your mom avoid radiation therapy I think consulting with the radiation therapist BEFORE rather than AFTER surgery may be in order in order to be sure it is his/her opinion that you mom wouldn't need radiation therapy ANYWAY or that it would/would not be given in a different way.

There are trials of IORT (intraoperative radiation therapy done at the time of lumpectomy as a one time treatment not requiring more after), accelerated partial breast radiation where tubes are implanted at the time of surgery and treatments take place for 5-7 days thereafter and are then over as well as external beam accelerated partial breast radiation which is done after surgery externally.

It makes sense to get all the info and make decisions and a game plan BEFORE undergoing surgery. I hope one/several of the doctors above might be able to help you with that.

Is it your mom's left breast(side the heart is on)? Doubt this would have an influence as if your mom had heart problems I doubt they would have given her herceptin.

Just a word of correction, if your mom doesn't have inflammatory bc (and even if she does) 95% is NOWHERE NEAR what the rate of complete pathological response is with neoadjuvant therapy. It would be WONDERFUL if it was!!!!

Hope some of this helped.

[Bev]

After mom gets a second opinion, Mom needs to decide. A mast is OK in context w/ other situations. I think it is fair to ask for drug treatment to continue while researching surgical treatment. If your doc doesn't suggest tx it's his fault, if you elect to ignore suggestions, it's your fault.

My gut feeling, is she can continue to do H and live happily, ever after. uless she has heart issues.

If Docs can't give you a good enough reason for mast, refuse. Hell no, we wont go. But saying this, I could be wrong.

So search on, you are a good daughter. If we come to the wrong conclusion we were only doing the best we could with today's data It's not the end of the world to have a Mast, I just am not seeing any reason for her to have it. Bev

[Susan McQ]

My tumor was not as large but I had chemo first. Tumor shrank to the point neither of my docs could feel it. Since mine was a 6:00, the surgeon didn't feel the need for a marker.

My surgeon is the one who pushed for chemo first to shrink the tumor. I had the lumpectomy and my final path report indicated no cancer found. A complete response to chemo is possible.

She needs to do what is best for her. Is there someone who can go to these appts with her and advocate for her?

Susan