Double mastectomy after 2 rounds of Chemo?

Hi Ellen,

We're so sorry you're faced with this decision. Of course, we can't tell you what to do, but our members will be sure to weigh in soon with their thoughts.

We're all thinking of you! Please keep us posted on what you decide.

--The Mods

I'm going to have to say that you probably wouldn't really know after one or two doses usually, did you have new scans, or? How do you know about the response or spread at this point? Did your MO talk about trying a different chemo?

Ubellen, I had IDC with IBC features, my sister had full-on IBC. We both had the full course of chemo before surgery.

My recommendation is that you get a 2nd opinion before you agree to surgery. MB Anderson in Texas has an IBC clinic and they're known for brilliant care. Closer would be University of California, San Francisco. Go see a physician who has treated IBC and is current with the latest treatment and research. It will be worth the trip.

Protocohol (from everything I have seen/read or been told) is that neoadjuvant chemo is imperative with IBC. Most will do 2 different Chemo neoadjuvant but for some of us neoadjuvant and adjuvant is the best option.

There is no one protocohol or TX plan that is the only way to go for all. Mine was different than most but it worked for me. Basically, it was get it operable and get it out followed by hitting anything else that might have been 'hiding' somewhere. Makes sense to me.

I too have never been told that chemo causes 'tumors' but that it does get the IBC cancer (that is already there) to form into a 'lump' with margins. IBC forms as 'nests' or 'bands' with no distinct margins instead of as a 'lump' with margins as other types do. Neoadjuvant Chemo gets it to form into a 'lump' with margins. In other words, it changes the way that the cancer presents but does not cause other cancers (tumors) to form - there was already a tumor there, just not as a defined lump with a margins. Neoadjuvant Chemo is also being used more often now with other types too, to get better margins and to shrink for better surgical outcomes.

Chemo does kill good and bad cells - ones that are fast growing (like cancer, hair, nails, etc.). Thus it does shrink the cancer area involved. It does not form a 'tumor' that did not already exist - just gets 'it' gets it better defined f'or a good surgery outcome - smaller with margins instead of spread out with no exact edge (sometimes a complete response).

Most will do 2 different Chemos neoadjuvant, surgery then Rads. That is NOT true for all. At least 1 neoadjuvant Chemo is imperative/SOP but 2 different Chemos (though common) is not the only option for all. To me, neoadjuvant and adjuvant (what I did) makes a lot of sense (as it was explained to me by my Drs). IBC is not a good surgery potential at time of DX. Neoadjuvant Chemo to get 'it' to where surgery can 'get it' out. Surgery. Adjuvant Chemo to attack any cells not gotten in surgery. Rads to the localized area. Simplistically - attack 'it' with Chemo, get it out, attack anything possibly still 'hiding', hit with rads as a backup makes sense to me.

We are each so UNIQUE as is our DX (though similar). We enter the battle so differently (health/age/outlook/belief/etc.). Our Drs are all different and how they believe is best to TX us individually. There is no "One Size Fits All" or 'only one TX plan' for all.

Just an example of how the written word (especially online) is not always read (understood) as it is meant. The 'writer' knows exactly what was meant by them, the reader reads it as they read it. Often the two 'understandings' are different in what was being meant originally by the writer or in how it was perceived by the reader. Many words have several meanings when they are used - the context determines the use.

Bon - I'm Southern 'bred, born and raised' too. (Still in the 'South' but it's 'South' Dakota ). I also am military born, raised, was and married. So not all understand what is common word usage to me especially when both are combined. There are other areas that I don't always understand the word usages from either all the times. I'm 'fair to middling passable' when it comes to spelling except when my 'fumble fingers' try to type too fast and I don't check before I post it.

We need a research project on how many women who served are diagnosed with BC. Four years for me. I separated when I was mondo preggers with twins--someone said I was smuggling a crowd of small civilians under my uniform.

One of the leftovers for me is the disdain for "o'clock" time. It's 2100, not nine oh clock in the evening, fer crying out loud.

"Let's get this place squared away!"

I was a civilian flight nurse after my AF days, so that alphabet came in handy.

GI Jane, huh? I wish I had her muscle strength and fitness when I was bald like her!

Taking you back to your regular programming. Thanks for the laughs.